VIRGINIA I am sorry-I don't get SS benefits. CAROL I am sorry I can't help-it is hard to tell the difference, isn't it.It is usually best not to chalk something up to fibro because we don't want to ignore something that could be potentially serious. YOLANDA thinking about you. You're kind of like a little sister on here, with a lot of the type of problems that I remember having in my early 20s. One thing that came to mind is that from my experience men at that age are really driven by sex (they can't help it-it is hormonal poor dears) and having a platonic massage or roomate of the opposite sex without them becoming smitten is pretty much impossible! JAUNITA, CARI K., BEX and everyone else it is good to hear from you. Thanks for sharing your experiences with us and I hope things look up really soon.
As for me, I am struggling to be sympathetic to this woman at work that my boss coddles. She suffers from migraines and is sure to tell us all about it. But she is LAZY and doesn't do anything, so the rest of us are supposed to pick up her slack. Plus she makes twice as much as us because she has a master's degree. I'm sorry, but I don't have sympathy for her. I don't see her trying to do anything to change. I am in pain every day of my life. I work my hardest and then come home and suffer the consequences of my labor by hurting more and being exhausted. I still try to exercise and eat right and do what I can. I don't tell anyone about my fibro or use it as an excuse. I consider myself very fortunate to be able to hold down a job because so many of us can't. I just don't have any respect for her at all and my boss pretty much wants us to continue to coddle her. I just don't understand people who can come to work and not give it their all. I would be ashamed if I were her. I guess I will figure out how to deal with it somehow. Mabye there is more than meets the eye.I am so sorry about such a long post.
Richard in Tucson April 04
Good wed. afternoon to all here. I want to wish an Early "Happy Birth Day to Sandi/OH" I hope you have a wonderful Day tomorrow.
I have a few minutes to post, I am still without my Van, the part they sent to fix it was lost in shipment, now I have to wait for them to send another one. My life has kind of been in a holding pattern, because of not having my vehicle to drive to my exercise class Etc. I am going to try to clean out the Garage today, it is kind of difficult since my Van is in there and I can't move it. I understand what you all are going through and will be trying to pray for each of you, I am having so many days now that my energy is really low, I can't seem to accomplish anything.
I want to wish everyone a HAPPY EASTER for those that celebrate it. And a wonderful week-end for those who don't, Gentle Hugs Talk to you soon Love Richard in Tucson...
Cari K. 4-4-07
Cari K. 4-4-07 Hi all,just a short post today.I wanted to share something that has never happened before.Not in the whole seven years that I have been battleing the dragon.It seems that lately I haven't been hurting as bad as I usually do.I am not taking the pain pills that they gave me.But I am still using the patch.Maybe I've finally gotten enough fentynl in my system that I don't need to take the pain pills too. I don't know,all I do know is that for once in a very long time,I don't hurt as bad as I usually do.The warmer weather might have something to do with it.I have Raynaulds syndrome also.So I don't know if it's that or fibro when it flares up.And to Jenny in Utah,Just let me know if you want those.Ok,time to run(haha) to thestore.Gentle hugs to you all,and Richard,it was nice to hear from you.Cari K.
Jenny in Utah, 4/4/07
Bernadette, thank you so much! The insurance has denied preauthorization for cymbalta, and so we called to see if they would pay for effexor. They said no until I try everything else. Well, I did get some samples of cymbalta to hold me for a couple of weeks, and then I go in to see the NP to try something, who knows what! But at least it gives us some time to work on the problem. Cari, thanks for your email. I emailed back. Darn insurance companies. Sometimes I think I could do better without them! If the effexor is cheap enough, I might just get that. This is the first time for years that we have had health insurance, and I sometimes wonder if it is worth it. I take a blood pressure pill that cost about 42 dollars without insurance and 35 dollars with. Hello! Not much help there! But for the really expensive stuff, it helps, if you can get authorization!
Cari K. 4-5-07
Cari K. 4-5-07 Jenny,I'm just glad you got something to help you out.The insurance companies think that they can play around with our lives.They don't realize what their decisions do to us.Anywho,I just wanted to say hey!And now here in Ohio,we have snow!After days of 70 degree weather! But that's Ohio,I guess.Hope you all are feeling "ok".Gentle hugs,Cari K.
BEX
BEX OF NV. APRIL 5 07 PLEASE DO NOT WOORY THAT DAY I CHECKED INTO A GREAT FACILITY TO SAVE MY LIFE1 I WAS PUT ON A LOW DOSE OF LEXAPRO, TO WORK WITH 50 MG OF SEREQUEL AND I AM RESPONDING!!!! NO NIGHT TERRORS IN DAYS AND A SINCE OF HOPE. MY PAIN DOC WAS VERY SUPPORTIVE TODAY AND RAISED MY MEDICATIONS A TAD TO HELP! I WILL BE OK, I WISH I KNEW ALL OF YOU I WAS A FOUNDING CONTRIBUTOR IN 97-99 I DROPPED OFF RADAR AFTER DIVORVING A BRUTAL MAN. I AM GOING TO BE OK THANKS TO THE LOVE I FEEL HERE......THANKS BEX
Annie 4-06-07 Friday
April 6, 2007 Friday To Virginia and all. We keep a link to Social Security Disability info on the front page. Here's the link http://www.FibroFix.com The link is on the lower left side of the page. Several other handy ones there, too, like PubMed, a medical dictionary link, etc. Annie
Anne 04-06-07
Question: I take Paxil at night because I have the "Seritonin Symptoms" with FMS. Works fine; has for over 6 years. Twice got bad batches, but exchanged them at the pharmacy. Our insurance has changed and now Paxil has a large co-pay compared to generic. We tried Apotex and Barr fluoxemine (generics) but did not work at all for me. Has anyone had any luck finding a really good generic in place of Paxil? Appreciate the input. Trial and error with this med is not a good experience. Thanks!
Cari K. 4-6-07
Cari K. 4-6-07 To Anne:I take a generic Paxil that is made by Watson.It is a round tablet ,like an old asprin. It has a big G on one side and P4 on the other.This is the first time I've gotten these.I usually get another kind of generic,but I don't remember who the maker is.They seem to be working fine.Except that I take mine in the morning.Hope this helps.Gentle hugs to all,Cari K.
wenope
April 6th, 2007 Hi, I am a husband of a FM sufferer and would like to add my 2 cents. Please don't hold a grudge against a spouse who gets weary of your sickness. Men(and I are one) are stupid sometimes. They say things they don't really mean to say. They just get tired of coping just like a spouse or caretaker of someone with Alzheimers. My wife dealt with years of me being depressed. I didn't work enough and I was a social dud. She left. But she came back. It took her YEARS to understand. We are both social duds now. We both have really stupid sicknesses. Mine is better than it used to be, her's is worse. Please be patient. Harden yourself to insensitivity somewhat and TELL YOUR HUSBAND, DIRECTLY AND CLEARLY EXACTLY HOW BAD YOU HURT AND HOW TIRED YOU ARE! He will never get it on own...not good enough. (I still only rub my wife's muscles part of the time when she asks...) Remember...men are self-centered by nature...they have to mature and be taught, much like a puppy. Slow but not Stopped, Thanks
Jenny in Utah, 4/6/07
Wenope, I just have to reply to your post. My dh has dealt with a lot here, and I know it is not easy for him. I really have to hand it to him because when he is sick for only a day, I get very frustrated! We have five children, and with each pregnancy, I had what is called hyperemesis. That is where you throw up constantly, it is 100 times worse than morning sickness, and I was lucky to be able to hobble from the bed to the couch, only about 15 feet away. I could not do anything. It was horrible! He helped me through all that and still has to deal with me thru the FM. What an incredible man! It takes a lot to tolerate any chronic illness. I really commend you! Thank you so much for your comment because I know my husband has been frustrated lately, and with good reason. Hang in there!
Sue Ap.7
SUE in TN. AP.7 Hi to everyone. I have been reading the medicines that everyone has been sharing (rather,the name of the medicines) and thought I'd share something that I am studying. It is a medicine that is used to thin out the junk that you cough up when you are sick with a chest cold. I could not say the word but it is called GUAIFENESIN. Here is an address if anyone wants to check it out. It is very inexpensive and can be bought over the counter. The yahoo address is.....http://groups.yahoo.com/group/guaifenesin I was told that you can send a blank e-mail to.....guaifensin-subscribe@yahoogroups.com and that the group will help you with any info you need. If these address are not still open or if anyone wants some of the information that I already have about the medicine you can e-mail me at Suehaa6@wmconnect.com and I will be happy to share what info I have with you. I have not tried it yet but I just came off my hormone pills and that threw my moods out of whack. But from what I read about it, it sure is worth a try for FMS...CFS...IBS and diabetes. Good night! Sue
JUANITA 04-07
JUANITA/TX good sat. morning to ALL of you. i am happy to be able to post this morning. last sat. i was in the hospital with my blood pressure as i last week told you. i had to go back to the hospital on sunday because my blood pressure went crazy again. finally got it under control and went to see my GP and he said that i have high blood pressure and put me on DIOVAN. it seems to work well at this point. i still have some headaches and dizziness but he said it will get better. he said the arm and shoulder pain wasn't from my blood pressure but from the FIBROMYALGIA. i hadn't seen my regular GP in 2 years due to all the other DR.S i have seen for the FIBRO, OSTEOARTHITIS, BONE SPURS, CARPEL TUNNEL, SLEEP APNEA and now HIGH BLOOD PRESSURE. he told me now i can add that to my list. i called my disability lawyer and gave her all my new information. hopefull i will get my hearing soon. it will be a year next month since i have starting trying to get it. i an SICK AND TIRED OF BEING SICK AND TIRED. as my daddy used to say. well it is cold here in AUSTIN. about 48 degrees for the high and the low. maybe that is why i feel so wiped out. well i better go for now . take care everyone.HAPPY EASTER to all who celebrate and HAPPY HOILDAY to those who celebrate YOUR holiday. JUANITA
bex 4/6/07
BEX4/6/07 Saw my pain doc, came to amazing conclusion and i feel better! i have taken mscontin 2 yrs 200 in am &pm. problem it drops off at 8 hrs in the afternoon and night, i wake up stiff unable to move, by 3 pm i have forgotten the idea of dinner ect, just want to go to bed. well along with triger points shots that were overdue i had studied morphine, and a 30 mg quick acting is available. so after a discusion the dr. said we could try it! what a difference not to crash, none! the instant release is fast carries me over unyil next long acting dose with energy to spare!!! i stopped all the vicodin 10's and t#4's ect. i wanted a reg scedulue, do you understand that? things can get confusing, and feels icky. i have this since of control now! i was dx'd with fibro/fibromytosis in 97 they said by 50's it would back off and the dragon would sleep longer, i find this to be true. thank God! but i was in a wreck that would freack you all ouy it was that bad. landing me in this serious pain. when the dragon joins in i am destroyed until he goes back inside i had tried all sorts of medicines, nothing worked but the good old fashoined morphine for pain release. i wasted alot of money on this and that. i am just being honest until your doctor truelly understands the nature of the pain, you get run around. nsaids ripped my guts up, oxycontin lost my mind, but the purity of ms does not cause a fog, tear up my guts or interfere with anything! i will not drive if i am tired for any reason if i am tired! so basically i have a life, i encourage anyone who is not pain controlled to move on from that doc, or start getting assertive. We only go around once, we need to be with the living, and the games must stop ! i had to fire my doc of 12 yrs, he always undermedcated, put down to tears and lost. i asked who the bed pain/anethsiologist around this is who has made my life in the living. regular epidurals/intralaminals,shots ect..and a strict regimented med program, never cheat it or it bites back, and be honest about all things! and better days come. the reason we do not get pain relief is because lack of demands.It is true. so good vitamins, diet and doctors make it tolerable. i beg each and everyone of you to never take less than what is best. go to counselling, be honest. All of the hassles will reduce. it took 10 yrs of abusive doctors to realize this is my life! i beg you to take control, stop allowing others to decide for you! i want to hear positive stories of triump over what ever demons are ruining you lives. you can live above all the misery with this support site and confidence to open the minds of ignorant doc's. take with you to the doc's those who know you the best to help get the ponts accross!start a spring garden, and know you are loved! someday a cure for now there is enough painrelivers for everyone!!!!!! hugs, warm baths and love to you.......
BEX 4/6/07
I NEED TICKETS TO YOSEMITE VALLEY JULY-AUG NORTH PINES???IF ANYONE KNOWS OF SOME FOR SALE CONTACT ME......BEX OF NV
Bonnie April 7
Been down with flu like symptoms that I am blaming on new med I was trying out. Don't like feeling like that so went back to the one I was taking. New stuff doesn't seem to agree with me lately. I finally managed to find the energy to go grocery shopping...what a Zoo the day before Easter!! Lots of ham going to be served tomorrow the way it looked.
Wenope, thanks for your post giving us another point of view. I hope you continue to visit us. It's very hard to live with someone who is sick all the time...doesn't matter whether they are male or female. My hubby is the best at taking care of me, but he says things that are hurtful from time to time. I know that he really doesn't mean anything...he's just gets overwhelmed at times.He has a shoulder and knee that hurt a lot after he does much physical work and that is usually when he gets out of sorts.
Sue, Guaifenesin has been around for a long time...we've had many discussions about it in the past. Some claim it helps...others say it doesn't. Much like a lot of other things we have heard about. Let us know if you decide to try it...we will be interested in what it does for you. Personally I don't see what is in it that would help FM and am very leery about mixing it with my other meds. But...that's just one opinion. GUAIFENESIN is an expectorant and I remember how my mother-in-law got in big trouble using too much cough syrup while taking some of her diabetic and heart meds. I'm not actually trying to discourage you, just a caution to do research and talk to your doctor first.
Juanita, so sorry to hear you were in the hospital. Getting the correct BP meds is one of my major problems. I hope what you are on now works well and you soon feel better. We all understand about being Sick and Tired! My daddy said that too. Would be very happy to see 48 degrees...it got down to 19 here two nights...my tulip leaves are flat on the ground. I think they will recover if it would only warm up now. Only in the mid 30's today....brrr cold.
A very happy Easter to all who celebrate. Love and hugs to all.
Sue Ap.8
BONNIE: Thanks for your information about the guaifenesin> What I read so far never mentioned what meds you could mix it with. I am diabetic and I take heart medicine, too, so I truely appreciate you responding to my post. I was hoping that I had found a miracle cheap cure for all of us. I didn't know if anyone had heard of it before or not. Hope you have a happy Easter day.And pain free. VIRGINIA: I e-mailed you one day this week, I think. You said you had to go before a judge about your SSD and asked for info. I wanted to tell you it took me almost a year after mine was turned over to the judge but everyones' might not take that long. I am sure there is alot of things that factor in each case. My lawyer did tell me to contact my congressman and he wrote right back to me telling me that he would try to help. I got a letter from the judge and he did get the letter from the congressman. I hope this information helps you. Good luck and I hope you feel better more often than you feel bad. Happy Easter! Sue in TN. April 8
Cheryl PA
Cheryl PA
Hello, I am on aol now. Had quite a bit of trouble with other service and glad to be thru the switch over. Stressful. Also getting use to a shift change my husband has. Torn as to when we will be together and keeping up with a schedule of things that were done at those hours. Change brings stress. I am self talking and deep breathing. Trying to be sure to exercise, eat right, rest, do what I enjoy and etc. in the midst of the changes. A funeral too was this week for my husband's 98yr old aunt. Beautifully done. Yet and extra in the week. My concern the stress would bring a flare-up. My two recent ones were very painful and now it's been pretty good even though it doesn't go away completely-just bearable.
Carol happy...I hear you loud and clear of what is this (head hurts/stomach ache)and how to tell if it's fibro. I start with treating the symptoms for sometimes it has been the flu or virus I picked up. I found ginger ale is good for my stomach sickness that seems to come more than I like. My neck muscles get hard and throws my head off to bring imbalance then that sets off my equilibrium. Antiacid also helps if needed. Bland food to help also. Massage has been great to relax everything. Deep breathing I do quite often. Read it can lower blood pressure. Mine isn't high yet when I do this it has gone even lower. If my back gets into a lot of pain and other muscles then I trust it's fibro. A guessing game yet when same things go on and off I begin to see similiar signs that say it's fibro. Hope you come thru with help and in the future have some things to do that will help. Blessed Easter to All! Cheryl
carol happy 4/8/07
Carol Happy Cheryl PA, thanks for writing to me. My husband doesn't understand why I might want to post to this wall - he threw a fit helping me set this up. But it is so nice to read about other people who are going through the same thing as me. I get tired of saying how bad I feel all the time, and trying to cover it up is sometimes impossible :) My grown kids, especially my daughter, are starting to worry. They see when I get so tired that I can't even think straight to talk, and their mom has always been a talker! I had to take Thursday off from work. I had a sick stomach and a migraine for 4 straight days and I wasn't fit for human consumption. I had a nice Easter with my kids and grandkids, I am so grateful for them. We got new windows put in our house on Friday, so I had most of the house to put back together. Fortunately my husband was working right by my side. He is a good man and we share household chores each doing as much as we can. I try to do better on days when I don't feel so bad. He has alot of pain in his shoulders and knees so sometimes I'm better off than he is! Hope everyone got to enjoy some Easter and maybe relax. Thanks for letting me read your wall. carol happy
Beth in Ohio 04/09/07
Hi, all. It's been a long time since I've been here. We were working seven days a week at work, and it took its toll on my. Two weeks ago I had a huge flare-up in both shoulders. I was able to get into the doctor the same day, and got my prednisone and percocet. Shoulders are pretty good now, just a little pain in the left one. I just take otc now for the small pains, and save the big drugs for when I really need them.
Still having trouble sleeping. Lunesta helps, but when I picked a new rx up this last week, they had raised my co-pay from $40 to $80. I may have to stop taking it. I don't know what I will do after this month. It is the only thing so far that has helped even a little bit.
We had 3 birthdays in March, all on the same weekend, and that wore me out. I have been going to Curves three times a week and dieting faithfully. But with the birthdays and Easter I have slipped a little. Still, when I got weighed and measured on April 2, I had lost 12 pounds and 6 inches! Only have 30 pounds and 3 sizes to go. I think a lot of the weight was from when I was sick in November and almost died. I was so bloated, I felt like a balloon and the pounds just kept going up and up, no matter what I did. Time to go to work. Hope the warm weather comes soon. We are sick of this crap! Global warming my foot!
Richard in Tucson April 10
Good Tuesday Afternoon Everyone: I have a couple of minutes to post, Wish I could be here more often.
This past Friday I finally got my Van running again, I put in a New Power Control Module, that seems to be what was wrong with it. The Van runs good now. Of course now I have to make up for lost time, I am four weeks behind with everything I have not been able to do with out my transportation. I'm going to clean out my garage in a few minutes. I have been putting this cleaning out for ever. Tomorrow I will drive to my parents preschool and do the long awaited maintenance, that because my Van was not working I have not been able to do.
Cari K.: Thanks for being here, and being so nice to me, I really do miss being here at the wall regularly, but It has been hard do to the circumstances.
BEX OF NV.: I want to welcome you back to the Wall. I just wanted you to know that you are still part of this family, and you can feel free to tell us what ever it is that is bothering you, we all need to be heard, and I know you have been through a lot. thank you fro the Advice on making those demands to our Dr. for pain relief. I will consider it next time I visit him.
wenope: Thank you for your contribution welcome to the Wall. I try not to hold a grudge against my spouse but sometime she just doesn't get it. I get so run down and usually I pick myself up and keep going. Some days I just need a nap and sometimes this occurs when my wife wants me to be attentive to the family and her the most. Sometimes I get very verbally abusive to all of my family, I hate to be that way, but it happens when I just can't handle all the stress anymore because of this illness.
Juanita/TX: I sent you an e-mail this morning I hope you got it.
I have to get moving my Wife will be home soon and I have not hardly accomplished a thing. I will try to post again on Thursday. Until then Gentle Hugs from Richard in Tucson....
Amber in S.C.
Hi all! Haven't posted in a while , but i have been keeping up with all the recent posts that have been on the wall. I'm sorry to hear that some of you are having hard times these days.I have been having them too. I have had a lot of pain lately-especially in my hands. My 1st finger on my right hand (joint) feels like it's starting to rub bone on bone. I can't open jars anymore and it even hurts now to type. Sometimes if i try to open a jar or pick up my laptop computer with my right hand..it feels like that finger could break at any minute. I also have a new symptom which i think is TMJ. Last night my muscles at my lips and mouth could not move very much and if i tried to smile...the muscles would tremble. I also think at the same time that my jaw may have locked because i couldn't open my mouth but maybe a little bit. I could swallow, but i couldn't open my mouth to talk, eat, or take my asthma medication (inhalers). So i think i have just one more annoying symptom of Fibromyalgia. Anyway, let me go for now. I will pray for all of you and the troubles you are having. RICHARD- i am so glad to hear that you got your van running again. My husband and i had to fix our van last week . We had to replace a pully on the timing belt and that was not easy because we had to take the whole belt off and make sure we put it back on just right so that it would crank and run. We think the timing belt slipped some when the pully went out- so we had to replace the pully and adjust the belt. Hopefully that won't happen again! Not having transportation is a real pain..on top of the pain we already have. Take care everyone and i'll talk to ya'll later.
Cari K. 4-11-07
Cari K. 4-11-07 Hello all,just tought I would post real quick before I have to go to work,ugh!Richard,we ladies should be the ones thanking you for all the warm well wishes you have given us and all the encouragement,caring and helpful advice that you have sent our way.You take the time to respond to each one of us.If not right away but you still remember names and take the time.I know when I first started coming here to the wall,it was you that made me feel welcome.So please,even if it's just a few words,keep your posts coming,you don't realize how many hearts you touch every time.Well,off to work I go,warm,soft,gentle hugs,Cari K.
pammysue 03/11/07
Hello everyone. I'm new to this forum, but not new to fibro. I'm thinking of quitting my job and going on Medical Disability. This pain is more than I can bear some days. I have my husband and my doctors blessing. I did talk with a lawyer today, but I left feeling very confused, (fibro fog?) You all know how I feel, we have bad days, very bad days and then alful days. Let me know if anyone has already tried this route. thanks
pammysue 03/11/07
pammysue 04/11/07 Whoops! see what I mean about this fog? I wrote previously 3/11/07. Oh my.
Robin NC 4/11/07
Welcome Pammysue, my husband has FMS and has been on disability for about 6 years now. His doctor was a tremendous help. We went to the social security office and presented all his medical records, so social security didn't have to do the research. He was never denied even one time. The process took about 6 months. He didn't even get a lawyer, so if you decide to get one, maybe it will go even smoother. Hope this helps.
Pammysue 04/12/07
Thank you RobinNC. That is a huge help. Have a blessed day.
pammysue 04/12/07
Let me tell you a little bit about me. I'm married to a great guy, I knew him in high school, he went his way as did I. I married and had three daughters, I divorced that guy and married my current husband and we have two daughters. Five daughters!!! We've been married over 22 years. We've had quite the ride. I've been in pain for 10 years and diagnosed with fibro for five. It was very difficult for my family to understand this pain until they read about it and now everyone is a little more sympathetic. I'm from the southeast, so I always know what the weather will be because of how I feel. I can predict rain and snow before the weather man! Gotta go, take care.
Barb(Pa) 4/12/07
Hi Everyone, I have just a few minutes to post since I am back on the road again....got home for four days this time. Delivered from Pittsburg,Pa to Ft Pierce,Fl to a nuclear plant in 18 1/2 hours,golly am I tired. Loading tomorrow for California again.
Richard glad to hear you have your wheels back. I will be passing through again this weekend.
Welcome to all the newbies and warm gentle hugs to everyone.
JuneKaye Nott
JuneKaye Ohio April 12 Spring here in Ohio has been a bummer!!! We had one day where it was 79 and then the next day down to freezing and off and on snow for three or four days---great weather for those with fibro. I am SO looking forward to milder temperatures---my bed with its heated mattress pad and warm covers has been much too inviting.
Richard in Tucson April 12
Good Morning everyone. I gues I don't have much time to post. I need to make this quick.
Welcome to all the Newbies, I hope you keep coming back.
Amber in S.C.: Thank you so much for your concern and understanding, yes it is great to have my Van back agin. I wish I could help you open those jars, that is one thing I can do.
Cari K.: Thank you for being a part of my life.
Barb (Pa): I will look out for your truck, They will be closing part of I-10 in Tucson Tonight and maybe other nights this week-end. I am not sure what time you comm thru, just beware, I know it is happening tonight from 11:00pm to 6:00am. Thank you for your careing. Well I have to get going have a great week end from Richard in Tucson....
Lynn MN
LYnn MN 4-12-07
Lynn MN 4-12-07 Hi everybody. I'm on vacation this week, my husband really notices how much happier etc when I'm not working.
I hosted Easter Dinner for my side of the family. It was Buffet Style and I tried to make it simple, but I realized that I'll never do that again. It just leaves me exhausted!!!!!!! I used to like to entertain large groups etc but now I realize those days are gone.
This week is going by fast. I'm trying to organize my house, my 26 rear old daughter accepted a job and is moving back home for awhile until she finds housing. I had to clear out the guest bedroom closet so she has some room for her things.
Spring weather? Not here in Minnesota. We got more snow the month of April than we did all winter. Crazy. I did watch "An Inconvenient Truth" and now I realize that alot of things are probably due to global warming.
Take care everyone! Pace yourselves!!!!!!
indytwin, 4/13/07
Friday, April 13, 2007 5:12 a.m.
Here's wishing a fabulous Friday to you all!
First, I'd like to introduce myself. My name is indytwin, and I am a newbie to posting....anywhere.
I have Fibromyalgia. I have had it since long before it had been given a name and I have tried nearly everything to combat it. I think that there were only three things that I had not tried, up until now. These things were accupuncture, massage, and heated pool therapy.
This week, I started heated pool therapy. It has consisted of very gentle movement excersises in a gloriously warm pool. My expectations were high. I enjoyed the time in the pool tremendously and experienced very little pain during the sessions. That is, while I was in the pool. Afterwards....a totally different scenerio. I tried to keep moving, so my muscles would not stiffen up. But that was not enough. I finally went to bed early, thinking that sleep would help.
I have had two sessions this week. Tuesday and Thursday for 1/2 hour each day.
Tuesday sleep was interrupted several times and last night I hardly slept at all. My night time sleep and pain medications did not seem to help at all. I feel like the sessions have triggered a major flare-up. The pain(from my head to my feet), was bad enough to cause me to feel nauseated, last night.
My doctor prescribed the pool therapy because I have beeen having swelling in my legs and feet. I can see an improvement in the swelling, but I am wondering if the other results are going to be worth it. Will I get to the point where the after-pain lessons?
Has anyone else used heated pool exercise therapy with good results? I am willing to continue, if I know that there is a light at the end of the tunnel. However, if I am just trading increased pain for the reduction of swelling...is it really worth it?
Does anyone have any comments or suggestions?
Thanks.
indytwin
Bernadette April 13
Indy-sounds like you did too much too soon. You described the classic fibro exercise dilemma. Exercise is supposed to be good for us, so we try it and feel good while we are doing it, but major fatigue and pain can follow. I would say cut your exercise time in half and then see how you feel doing longer or shorter the next time. We can't judge our exercise routine by how we feel in the moment but how we feel the next day. If you need to, start with a five minute session and then GRADUALLY build up the length of your sessions. The person directing the session and the other people in it might not understand but we have to advocate for our own experience. I remember feeling weird the first few times I quit my yoga class half way through. It was especially hard because I used to be the kind of person who would never give up. You've heard the expression "Feel the burn" when exercising? Well, those of us with fibro give it a whole new meaning! I don't think feeling the burn is supposed to be an 8 on a pain scale of 10, or that it is supposed to last for days (and nights) afterward! "No pain no gain" doesn't work for us either. Good for you for exercising-but remember easy does it.
I myself am just coming off of a horrible flare. I ran out of antidepressants too which was dumb. I just insisted on getting a bunch of blood work and the results will be in next week. I was fortunate enough to get a metal toxicity panel too. I have heard of a connection of mercury poisoning and fibro, so it should be interesting. Having just come out of despair when I was feeling like I just didn't want to go on trying to live in constant pain I want reach out to anyone out there who is feeling the same. Consider antidepressants. Dealing with chronic pain can really wear us down emotionally. They are not a sign that our pain is not real or just in our heads. You will be amazed at the difference you will feel. Also, remember to just make it through and you are bound to have some lower pain days in store. Thank you for listening my friends and walking with me on this journey.
Cheryl Pa 4/13/07
Cheryl PA
Hi, At the moment I am doing well just busy. A new schedule with my husband's work makes things challenging. Before stressful. That gets me worked up and try to keep in mind this will pass soon and be ok. At the moment it's getting there. Next week another change an hour earlier he'll go in to work. Shift again. Trying to go with the flow and take care of me.
Hi Pammy Sue!...if time get me at chrhpl@aol.com and I will tell my story of disability after no work. I saw also there is on the Wall's Info help titled Social Security Disability Services and another titled Fibro Doctors. Sound worth lookin' into. The weather here in PA is pretty much what each of you say. Different than what Spring is expected. Yet I heard the weather lady say it's happened before long back. We are to have a northeaster thru weekend that has a possible snow mix in it. Starts Sat nit. I am hoping for that timing because we planned with friends to do outside work on our hedges.
Check in later....Cheryl
BEX OF NV
BEX OF NV TO PAMMYSUE A LITTLE ADVICE ABOUT APPLYING FOR SSD, DO NOT GET A LAYWER!!!! WRITE IT OUT IN YOUR OWN HANDWRITTING DO NOT TYPE IT, ALOT IS SAID BY THE WAY ONE WRITES! I WAS ACCEPTED IN 4 WEEKS! LIST EVERY PROBLEM YOU DEAL WITH, MAKE FIBRO THE LAST THING, THEY SHINE IT ON1 ARTHRITIS, EMOTIONAL PROBLEMS THE "FOG" YOU EXPERIENCE. TALK ABOUT INABILITY TO FUNCTION EVEN AT THE BASIC LEVELS OF LIFE! THEY WILL SEND YOU TO A SHRINK TO BE EXAMINED DO NOT BE "FRIENDLY" ANSWER IN THE PAIN YOU ARE IN , MENTAL,PHYSICAL,ECT. DO NOT HURRY THROUGH TESTS TAKE YOU TIME IF YOU MAKE A MISTAKE LEAVE IT AS IS, CORRECTING JUST PROVES YOU ARE FUNCTIONING. I AM A RETIRED R.N. SO I GOT HIS NUMBER FAST. IF I WAS PERFECT HOW CAN I BE SICK? I JUST WAS ME FROM TEARS TO FRUSTRATION, (REAL) THE DAMN FOG, IT MAKES ME FEEL LIKE A 2 YR OLD. IT MAY SEEM YOU ARE LOOSING, BUT A SURPRISE IS THE RESULT. AGAIN DO NOT GET A LAWYER UNLESS ALL ELSE FAILS. THEY SEE LAWYERS AS LIARS AND CON JOBS WHICH THEY ARE. BE HONEST ACCIDENTS, INTERPERSONAL PROBLEMS PROBLEMS COPING, ECT. DO NOT WAIT! GO FOR IT GIRL!!
Bonnie April 14
Hi Indy, welcome to the wall and also a welcome to anyone I might have missed. I agree that you might have overdone the exercise, especially if you are not used to doing any at all. My doctors says exercise is good, but not to the extent you are hurting for days afterward. He also says if I am hurting real bad not to exercise that day.
It doesn't seem like two half hour sessions would be a lot for a normal person but unfortunatley we are far from normal. Are there warm up and cool down exercises for before and after the water exercise? These are very important to our muscles. I assume this is a supervised exercise class like through the YMCA or some such organization?
I have never done this, but know they are offered at the local Y. Maybe you could do just one session a week for a while or two 15 min. sessions?
Bex, thanks for the info about disability. It makes a lot of sense. Your caps are hard to read though. Maybe its just my glasses. No offense intended.
I am sitting here looking out at the latest snow we received. It was just starting to dry up and now a sloppy mess again. Not good for mid April or for my pain which must be a 9 today!
Hope you all have a nice week-end. Love and hugs, Bonnie
pammysue 04/14/07
Hello BexofNV and CherylPA and Indy. Thank you first Bex and Cheryl for responding. I really don't know what to do. The lawyer, my husband and I spoke to said that it could take 3-4 years for disability to come through. Well, let me tell you, that sent my husband into a total panic. My husband sees me going to work everyday, but he sees little of the inner PAIN that I'm in when I do that. I'm on my feet all day long, reaching, bending,. I will get into the the email you sent me Cheryl. Thank you. Indy, I, too had aqua therapy. The water was 98 degrees, pure heaven. It felt so great, nothing hurt, I was the old me again when I was in that water. I paid dearly when I got out. I did do too much and I was a hurtin puppy. I agree with only going in for 1/2 the time and trying to stay limber for the rest of your day. Putting moist heat on your aching back, neck, legs, arms, feet, ankles, knees, elbows, (did I leave anything out?) may help too. Take care fellow hobblers. Have a blessed day.
nicole April 14, 07
Hi everyone, where to start. I've been part of the Wall in the past and of course can't remember when. I think it was in 05. I stopped coming because, I got a new diagnosis of MS, but I realise that fibro is still just part of the BIG picture. I also have been in constant denial. along with MS and fibro I have restless legs, sleep apnia and high blood presure (i got the high colestral in check) I'm 41 yrs old and feel 100. most day's I don't know which is worse MS or fibro (its both) I just wanted to reconnect with everyone here at the Wall. I will write more when I feel better. Thank-you all for listening. nicole jakubek
Bex
Bex of Nv. Sorry about the screaming caps yesterday, but i felt it when pammysue spoke of lawyers! Through the "fog" we are capable folks, but the goal is to be absolutely real. Shaking handwritting, a list of complaints that would have most folks in the grave, what makes it all real is the visit with the pyschiatrist. Everyone must do this and it is soon after the application goes in. Send every x ray report that shows something,every diagnosis, what you do to help your self cope. Go to a low cost mental health clinic asap and load them with all the pain and delimas this and whatever else is ailing you, a pych history is good...so they can see the whole picture of the hell you live in. i was approved in 4 weeks. do not listen to horor stories. if you can stand all day now ???? i was bed ridden. so i do not know if you qualify on fibro alone. I hope the best for you, i know the dragons nightmare. get that application in NOW my friend. I wish there was a path laid out to go by but there isn't. remember write it out no fancy stuff. they pay attention to this.
Yolanda Mia 4/15/07
Hello All! I have tried to keep up with everyone, but it's been exhausting with work so much so that I only read a few at a time and don't have the energy to respond. And, things will be worse this week b/c we are working overtime, 9 hour days and maybe even weekends here soon. I've been in a flare as well lately b/c of the lack of sleep (my body can't adjust to these hours at all) and the exertion of my job. Doesn't help that this weather has been haywire. I want to at least welcome all the Newbies!
I went to an amish chiropractor last weekend, who also has degrees in many other things. He's been great. He put me on a calcium supplement, but not sure I like it. I think it may be contributing to my flare. But, with all that's been going on in my life, it amy not be the calcium at all. Though, since I've started taking them I've been having some issues with my joints in my toes. They seem to be swollen slightly and rubbing in my steel toe shoes and causing me pain to walk and stand all day. I'm hoping that this doesn't keep up, and that I'll get regulated to this new schedule, but it's been a month and I'm still not used to it. I'm hoping that I can find a job soon that's not so taxing. Love ya all! Losing the energy to be on here. Yoyo
Robin NC 4/15/04
Hello everyone. What a week this has been for everyone. Ray has been in bed all week. He just couldn't seem to get it together until today. We had a Northeaster come through here. When the rain started, the pressure must have changed and he started feeling much better. I think all of you have a future in weather forcasting (ha ha). You all would probably could do better than the ones out there now. I just don't know how you all do it ( working that is and dealing with the pain), I don't have fibro, but some days I feel worn out from being on my feet all day, the joints hurt and muscles ache and then I think of all of you and say to myself, it could be much WORSE! I wish I had a magic wand and make everyone better, I sure would use it. I know this WALL is probably what keeps alot of you going. It sure helps me each day to better understand what my husband is dealing with. I have been dealing with my sister for the past week. She has admitted to me she is an alcholic. I made her make a dr. appt. for tomorrow. So I will be driving to VA to go to the doctor with her. Does anyone know if there is a WALL for alcholics? Please pray for her. Her name is Delores..thanks. She is real nervous about telling her doctor. She does not know what she may be up against. She has already told me she doesn't want to go to AA or any group therapy. If all fails, I wish she had a place to realease like this WALL. You are all so supportive of each other and don't even know one another. Well enough about me. Hope all of you have a painless week. Gentle group hugs for all of you.
Bernadette April 16
ROBIN I am a recovering alcoholic. I celebrated 10 years sober last September. My heart goes out to your sister. There are plenty of support groups online for alcoholics-just google. I don't use any but I remember that they are there. I personally found AA to be very helpful, and I am not a religious person at all. Getting sober is very difficult-you have to relearn coping with your emotions about everything and everyone without drinking and it really helps to have other people to talk with who have gone through it personally and give you hope that it is possible. Getting sober was the second hardest thing I have ever gone through (coping with fibro is the first) and I am so glad I did it! There is a whole wonderful life for your sister on the other side. Unfortunately, much as those of us who love alcoholics want to help them, ultimately the choice to get help is up to them and we can't do it for them. Your sister is so lucky to have you for support. Again I admire you and how much love you put out to others. Good luck.
Bex
BEX HERE COLD.....DAY IN NEVADA, BUT SUNSHINNY IN MY HEART SO MAY LOVING SOULS TO BE WITH.opps had lock on I forget because it is hrds for me to read. i just am a well wisher today, I am going stay in bed today. A few rough ones- knocked me down. warm blankets for me and you!
Richard in Tucson April 17
Good Tuesday To Everyone; I have a few minutes to post. I really have been having a lot of doubt lately about my overall weel being, I feel this Fibromyalgia and CFS is getting worse little by little. I have been having too much difficulty accomplishing anything. I have a list that is very long with undone tasks that just keeps growing everyday. I make plans to pick Items that I can do today, than my fatigue and tiredness, just bog me down to the point that it is hopeless to even try.I am so glad to have this Wall to share these feelings with people who understand.
Welcome to the Newbies, it is so great you found us.
Lynn MN: I know what trying to entertain large groups is like with Fibro. I feel the same way about those days being gone, I am trying to think in terms of this as being temporary, we will find a cure, or we will eventually find ways to cope and reduce these overwhelming feelings of not being able to be who we used to be. Keep comingback to the Wall.
indytwin: Welcome to the Wall. I have not had the warm pool therapy you talk about, but it is worth it to continue if you are feeling good during this therapy, maybe you could modify, the activity and length of time you spend doing this, to meet your needs and not be overdoing it. Has your Dr. talked to you about what is causing the swelling. Sometimes it helps to understand the cause and try to do things that prevent the swelling if that is possible. Please don't think I am in anyway trying to tell you what you should do, this is merely a suggestion. Let me know what you find out, we are here for you.
Bonnie: Thank you for being here, you are such a good and helpful person. I am sorry to read that you are in such much pain as a lot of us are, but the snowy weather must make it all the more difficult to cope with.
Welcome pammysue: I would stay away from a lawyer that tells me it would take that long to win your case, he is a gold digger, a Lawer is only alowed to get 25 persent of your SS Reward, I think he is not going to win it for you right away because he knows if that happpens he won't get much for himself. Bex is right you get a Lawer as a last resort. You and your Dr. can win this if everything is documented well. A good eval from a good mental health Clinic is very valueable in Social Security cases.
nicole: Welcome Back to the Wall, Denial is a big problem when it comes to This Dragon, Keep coming back as you are able. I can't imagine what it must be like having MS as well as this Fibro. You must be a strong person. I feel for you, please know that you are always welcome in this family.
I wish I had the time and energy to help you all in some way, but I am sure someone will, just keep coming back to the Wall. I must get going now, have a wonderful Day. Gentle Hugs Love Richard in Tucson...
Nicole 4/17
Thank-you Richard for the warm welcome back. I'd like to share a little bit of my journey with you. I grew up in the Prescott area (21 yrs.) here. Then my other half Mac and I raised my son in OR. (very pretty place) Then I went to MN. what a cold place to be. Thats where I found a GREAT country doctor and between the two of us and a lot of tests, mri's, spinal tap and ruling out all the other stuff we found the MS and what a roller coaster ride that was. It was decided that I should come home to a drier, warmer climate. And I'm very glad that I did. Thank-you for listening and again thanks for the warm welcome. ~nicole~
Jenny in Utah, 4/18/07
Hello everyone! I have been to a nursing student conference as an advisor the last week. It was in Anaheim and I got to go to Disneyland for the first time in my life! It was so neat! Found myself wishing my kids were with me because I know they will like it there! Ongoing story about cymbalta. Well, we decided to slowly go off it and take the celexa for my mood and depression and stay with the skelaxin. The skelaxin seemed to work very well. I did not have to take it all the time and while in Anaheim, I was able to walk long distances carrying bags on my shoulders! I felt great! It was wonderful! Well, today and yesterday I have been on half the dose I usually take. Guess what? All the pain is back! The feet and my shoulders and the tears! So I am going to talk with my NP today and see what she says. Apparently the cymbalta was working! Problem is the stupid insurance. My Np has talked about neurontin, but I am nervous because of how my mom does on it! I really did have a great time in Anaheim! I can't wait to go back! All except the great big cockroach that claimed my bathroom! I screamed pretty loud, too!
Cari K. 4-18-07
Cari K. 4-18-07 Hello everyone.Just thought I'd post to let everyone know that I lost my job today and I really don't know how I'm going to keep up the expense of this internet server.So I may not be posting for awhile till I get back on my feet.Richard,I will miss your tender well wishes and everyone elses kind words.This has brought on such a flare you wouldn't believe.I'm considering signing up for diability.But I really need a job so I can get the benefits for my medical.All I see in my future is withdrawls from the pain meds and alot of pain .Please pray for me.Thankyou.
Bernadette April 18
Cari I hope that you get this in time. The public library has internet service so you can go there to keep in touch with us. So sorry to hear about your job.
Eugenia-TX.
Eugenia-TX. 4/18/07
Eugenia-TX.4/18/07 I have just found this web-site tonight.I have been reading
. Each and everyone of you that I read a post from made me want to
get to know each of you. I feel like this is a place for me to give and
get new friends that really understand what we are living with the fibro
and other health issues. My e-mail address is honeymary60@suddenlink.net. I am
looking forward to making friends and I will try to be a good friend
to all of you. Thanks to one and all.
pammysue 04/19/07
Thank you everyone for your sound advise for me. I think the lawyer I talked with was a bit over the edge. I am glad I talked with him tho, it showed me I don't need or want him. I have an appt with my doctor this a.m. and I will discuss with her all tests that I need and have already had and other doctors that I will need to see and have precicely documented. The weather here on the east coast is starting to cooperate, finally, and hopefully I will start to feel better soon. Take care everyone and I'll let you know what my doctor says, Love, Pam
JUANITA APRIL 19
JUANITA/TX good morning to all my friends here at the WALL. been reading all the posts but haven't had time to respond until now. JENNY, i take NEURONTIN and i haven't had any problems with it. EVERYBODY is different. try and see if it will help you and if it doesn't then you will know. A BIG WELCOME TO EUGENA FROM TX. hows it going? RICHARD, i sent you and e-mail this morning. it is really nice to herar from you on a regular bases. it is nice to here a man's view on this thing we all suffer from. sometimes our husbands don't understand andwe need you and other men to help us ladies out. well i better go and get started. GENTLE HUGGS TO EVERYONE. JUANITA
bex of nv
BEX HERE RICHARD! THANK YOU for backing me about lawyers! what you and i have said to PammySue is right get all you pieces in place, get a pyscy evaluation at a county clinic they use sliding scales and turn no one out. every test everything is of value the failure of medications and that it gets down to pain medicines actually that work, and you cannot work on them! it is essential to take some form of pain medicine it strenthens the problems of coping with life1 i feel so bad for all of you who are stuggling to get financial help, just those few extra dollars, mean so much. i know i went from 300-350.00 a night take home to 900.00 a month, it is a tricky thing to make all the payments! that alone can make one nuts. this disease is a mind killer, it is not a punishment if anyone thinks that it is a herditaty disease and comes in various doses of disabling nightmares. some have finger pain while some are devastated. i was in a horrible wreck bones broken from head to toes, i mean bad. i just walked after 5 years! and reconstuction of my legs. thus i was and forever allowed pain meds, that with lexapro i survive, in this i am lucky i have a way out of the pain that used to keep me glued to bed!. but at a cost epidurals, intralaminals, trigger points every 4 months in the or lazering of the vertabrae, on and on, but i am thankful, i can get up and garden lightly and feed myself and a dear friend. never give or settle for less with dr's they have the power to relive your pain and millions of others. fight for your life stay away from oxycontin! it puts you into a worse fog, a killer! other long acting meds are effective like ms contin or methadone in med doses freedom from soul ripping pain is available and keeping your life! i am an advocate for pain relief and as much as it takes to reach normalicy. i do not feel drugged, i have a social life though limited, i am not "stoned" i don't know that "pot" is an answer another fog...if you are in pain a do or nurse pract. cannot help you a pain specialist only!! get help love all
Richard in Tucson April 19
Hi everyone; Good Afternoon. I have a couple of minutes to post so here goes.
Nicole: You are always welcome here as is anyone who needs to have the wonderful support of this Wall, I only do what is natuual to me and that is to be kind caring and to welcome people here as I was welcomed. It would seem you had quite the Journey. I am assuming you are back in Prescott area now. I participate in another online Webb sight called (Meetups)It is a Phoenix Fibro Support group. I could give you the Link if you would like me to, I would love to e-mail with you if that is OK with you.
Cari K: I am sorry about your Job. I am sure when the time is right you will be able to get another one. You don't have to miss my well wishes. I sent you an e-mail yesterday, I hope you can stay in touch by e-mail some how.
Welcome to the Wall Eugenia-TX.: I would love to talk with you by e-mail I will not be able to start until next week sometime, but would enjoy hearing from you.
pammysue: I am so glad you decided not to go with that Lawyer, I hope your Dr. appt. went good today.
JUANITA/TX: I replied to that e-mail, well I sent you a short relpy, I was so busy today Talk with you again on Monday or Tuesday.
Bex of nv: Your welcome, I agree with most of what you said. Sometimes a Lawyer becomes Neccesary. I did not need one, but It did take me a long time to get my SS Disability. It was because I gave up the first time around and tried to go back to work.
Well I must get going I have to pick-up my Daughter at the school bus stop. Have a wonderful painfree weekend. Talk to you all on Monday.
Gentle Hugs from Richard in Tucson...
Eugenia-TX. 4/18/07
Eugenia-TX.4/18/07 Hi to all of you for welcoming me to get to know all of
I have had a day of information. besides the fibro,I have a torn unfixable rotor cuff in my rt.shoulder.Today I got results from mondays mri
I have disc protrusions in my lumbar and some in my neck also.I hope
everyone of you dont think i am on here just to whine!! I want to
get know each of you in a personal way. when i read the last posts I
felt the care and consideration each of You gave to each other.I hope
to give and get that same inspiration. I feel sure I was ment to stumble
onto this wonderful site. Richard in Tucson You are the first man i have met that has the fibeo,ect. It will be good to get a mans point of view as well
as all women.My sweet husband may also benefit from You,and your views.Thanks again for the big welcome and I love e-mails, so when any of you have time I will be glad to hear from one and all. hope all have a good day as you can! I dont know if i am supposed to do thos br things so if not please tell me so. fibro fog and me being me lol
Yolanda Mia 4/19/07
Hello All! It's been a painful week for me. And, to make matters worse, we are going to 10 hour days next, as if 9 hours wasn't killing me. I woke up this morning with my hands so swollen that they hurt and could hardly move, it felt as though the skin would split they were so swollen. That scared me a little, cause I don't know what to so about it, or what I'm limited to when this happens. Any advice? The swelling went down some, but it seems to be fluctuating....wondering if I'm dehydrated some b/c it seems to improve when I drink something but gets worse after not drinking anything for a few hours. Also, question I have is, can too much fiber cause dehydration?
Over the weekend I ran into Josh's mom. She was excited to see me, and her and I are getting together tomorrow. She wants him and I back together really bad. I did see him later that night cause she called him for me and had me talk to him. I was a little embarassed, but she said that's she's going to work on him. I didn't ask her to call him, but she really wanted me to see him, and he seemed quite receptive to it as well. In fact, she gave me his new number and made sure that I called him to see him this weekend since I'll be in town over the weekend for a promotion. He told me to call him so we could hang out. I'm not sure what's going on cause him and I haven't discussed everything and things seem to conflict (not sure he wants me back, or just misses certain aspects of our past relationship), or it's just me being all confused by this sudden reappearance in my life. I'm a little conflicted b/c I'm not sure I still love him as I used to, but it could be I'm still a little upset with the past and need some sort of resolution. Then, there is the fact that my roommate has told me that he loves me. And, him and I have been closer lately, but I'm not sure he's someone that I could love. I do care about him, but not sure that I could ever love him as he loves me. But, I don't want to lose his friendship or our business partnership. He has told me that if Josh and I get together he will never speak to me again. I'm so torn! Sorry, I just needed to get all this out, and my friends that I confide in over this stuff are too busy to take my calls. :( Also, the stress over this isn't helping my flare up I'm having this week....grrr.
Welcome to the Newbies!
Love ya all! Yoyo
JuneKaye Nott April 19
JuneKaye Ohio April 19 Still chilly here in Ohio---not good for fibro. I've had off and on flares and then tend to do too much when I do feel good---then more flares!!! I need to learn to pace myself, but my "list" of chores gets longer and longer. This may sound a little far-fetched, but I read a short article that eating dried red cherries helps jet lag and also may help insomnia---lots of melatonin in them. I decided to try since insomnia is so frustrating and I can't take PM meds or melatonin pills and it does seem to help me get to sleep. Of course with fibro a good night's sleep is a thing of the past, but I hate just lying in bed TRYING to go to sleep!!! Greetings to all.
JuneKaye t April 19
JuneKaye Ohio April 19 Still chilly here in Ohio---not good for fibro. I've had off and on flares and then tend to do too much when I do feel good---then more flares!!! I need to learn to pace myself, but my "list" of chores gets longer and longer. This may sound a little far-fetched, but I read a short article that eating dried red cherries helps jet lag and also may help insomnia---lots of melatonin in them. I decided to try since insomnia is so frustrating and I can't take PM meds or melatonin pills and it does seem to help me get to sleep. Of course with fibro a good night's sleep is a thing of the past, but I hate just lying in bed TRYING to go to sleep!!! Greetings to all.
Crishanna Buckeye, AZ 4-19-07
CRISHANNA, BUCKEYE, AZ. Hello all it has been quite a while since I have posted. I was Crishanna from scottsdale AZ last time, but have since moved. Anyways I was diagnosed in Sept. 2005 I feel that I have come a long way since. It is good to see that many of you are still on here. I am happy out here in buckeye but have been trying to hold it together, because my husband was just recently deployed back to Afghanistan for another year. Anyways I haven't got to read many of your postings yet. As you know it is all a little at a time. I pray for all of you to have hope and good feels.God bless.
Cari K. 4-20-07
Cari K. 4-20-07 Here I am posting again as I said I probably couldn't because of me losing my job and no money and so forth.First off, I would like to thank Richard.Who took the time to e-mail me and let me know that things are going to be ok.And you know what? They are.I was just sooo devastated at losing my job after 15 yrs.there.New head honcho and he's showing his a--.The cause they are claiming happened three weeks ago and since then we have less and less work for that dept. So instead of letting me go because of lack of work,he's using this incident.Hoping I won't be able to get unemployment.But, I just heard of a job yesterday that I can apply for that pays better and has better benefits and is still quite a drive.But just in the opposite direction.So,I keep telling myself that this might be for the better.Also my brother,who is in the Marine Corp. called and said he will gladly pay for my internet service.So,I'm learning that things aren't as bad as I first thought.Plus the flare I've put myself in with all the stress and worry ,is easing up.Thankyou for listening,gentle hugs,Cari K.
Donna 4/20/2007
I have just found this site for the first time, I also have never responded to anyone on any sites before but after reading your postings you sound like you were writing for me. I know the feeling of wanting to give up, the feeling of watching others around you at work constantly complain every time they get a paper cut or stub their toe they think they need to take a couple days off. We work every day in more pain they will ever have to endure and I wouldn't wish it on any of them but it does make me angry that they just don't get it. I also take Effexor, Lyrica and Topimax. I found that the topimax combined with the lyrica worked the best of anything else that I have tried. Although for the last 10 days I have not felt that good, I live here in VT where the weather has not been that great but the sun has started shining and it is suppose to be nice all weekend. I am exhausted and I have a wedding to go to this weekend. Bernadette, don't give up and please you can email me anytime. Donna
Bonnie April 20
Hi, A short note to welcome all the new people to the Wall. I hope you find this a good place for you to vent and make new friends.
I have had a couple bad days, well maybe more than a couple! I thought spring would make me all better. Wishful thinking. Looks like today will be sunny and warmer. Hubby wants to go eat Chinese with a friend and I am going to try to go along. If I can find the energy to get ready. CFS has been awful lately.
Good luck to those of you trying to get disability and hugs to everyone.
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Testing
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Bonnie
Just me again, sorry the size of type got messed up for a while. I think it is fixed for now. Will change the above ones when I trim. Hopefully soon!
bex newton
BEX OF NV I was just reflecting back to when this wall was in it's infancy and how muchit meant to me to be undestood and get good advice and honest thoughts, someone told me then that i could not be forced to work nights anymore after 11 yrs, and a drs. note on a prescription was all i needed, the disability rights ect stand behind these things, so i asked to go to swing shift as an R.N. and cut my hrs a week, it had to be accepted. then within months i deterioated to being unable to get out of bed i was frozen but the dragons were blowing thier fire as hard as they could i would still shiver cold and in pain, those were years ago 1997- on.in 98 i got ssd without a fight. it wasn't much but enough to eat, pay the power. i was married and he worked. but i was now an unattarctive, mess and an afair started that he took all the way to marrying her. i was so tired i did not fight for anything, i left the home to mydaughter 18 to go to college 10 miles away, and i moved into a studio apt that was enough, i just slowly died there, until i met my doctor now who got me up and moving, i am in a nice hud duplex, eal nice. have a fiance' we never can marry or too many benifits would be lost so we will have a commitment cerimony live seperately (but spend all day and night together, he lets me sleep in and goes to his small pad to relax in the morning. we are hoping a va claim comes through so we can live always together!!! i am getting a ring in a week or so!!!not expensive but pretty. there can be life after fibro. he is all a woman could dream of! so never give up, there are ways around the obsticles and a doctors notes can stop those crazy hours your are asked to work without firing you, the aclu would hang them! think positive and poweful and it happens. push on love bex.
Eugenia-TX. 4/20/07
Eugenia-TX. Good afternoon to one and all. I just finished reading all the
posts. I have all of you in my prayers. I especially wanted to say a big hi
to DONNA who just started her ist post. I too am new to this site and each of you say and how sweet everyone here wants me to have all for neigbors. Donna you probably said where you are from but i dont remember.I am
in TX.I hope to get e-mails so here is my e-mail address:
honeymary60@suddenlink.net. I hope all of you have a better day than some of us had yesterday. I am so tired and relieved,my husband had a blood clot go from his leg into his lung ,dec.4th 2006 so he is on coumadin and other meds. He is also a diabetic so i panic if he sneezes so he says.LOL About 11pm last nite he told me his leg was hurting and his ankle when i looked at it i said get dressed and to hosp. we went. Thankfully it turned out to be like a blood
pocket they said. due to coumadin the blood thinner this can happen and sometimes many times. The dr. put an ace wrap and ice on it and we came home it was only a few hrs. untill it was gone.God is so good to us!!HUGS TO ALL.
Dee ~~~ Friday April 20, 2007
Hello everyone....I'm feeling good enough to try and post tonight. I think Bonnie gave me her flu (thanx Bon).
I have been reading a few of the posts about the need for a lawyer when you try for your SSI Disability. Just like with all the medicines we try...it's different for everyone. I had a lawyer fight the fight for me and wouldn't do it any different now if I had it to do over. I live in Kansas and I don't know if it's any different from state to state, but here YOU have to file the first time and then you can turn it over to a lawyer. After having to do it myself just once, I was more than happy to let a lawyer do the rest for me. I was turned down twice and then had a hearing before a judge. My lawyer prepared me for my hearing and without him I couldn't have held myself together to get through all that crap. So in reality, there is no right or wrong when it comes to fighting for your SSI. It's a personal decision with your well being in mind. I am on Disability now and I pray that if you qualify, you get yours too.
Phone just rang, hubby's on his way to take me out to dinner. Will return.
Welcome to all the newbies and a warm hello to all my old friends.
Gentle Hugs.....Dee
Nicole 4/20
Hi to everyone.
this is just a real quick post. eugenia sweety i sent you an e-mail last nite and my e-mail manager sent it back to me saying that they could not find this e-mail address.....honeymary60@suddenlink.net did i type it into the address bar wrong? let me know pls.
i wanted to write more but, my sweety wants to know if i'm ready to go eat. so i'll be back later. ~nicole~
Jenny in Utah, 4/21/07
Donna, how does the topamax work? I know it is used for epilepsy, but wondering if it helps with the neuropathy kind of like cymbalta or neurontin does. I am still considering using the neurontin, I guess you could say I am just nervous about it. I have heard other people who do really well on it and wished they had tried it sooner, and others who would rather hurt. My mom has to take it because she cannot function without it, and yet she can only hit a certain level with it because it freaks her out. I am finishing up the semester in the next week and so maybe it wouldn't hurt to try it and just see how it works for me. Welcome to all the new people here! And Cari, I just wanted to say it is good that things are working out for you! I hope they continue!
Cari K. 4-21-07
Cari K. 4-21-07 This is to thank Jenny for her concern.I know things will be ok,it's just the first time in 15yrs. that I have been unemployed and it really took me by surprize.Also,I too was on Topamax and it didn't help me much at all.And do you want to hear something funny? I can't for the life of me remember why my doctor said he was putting me on it.I know it was for the fibro(duh!),but I don't remember what he expected it to do for me.At first,he had me om 50mgs. a day.Then he raised it up to 100mgs. a day and told me to take it at night,before I went to bed.I have been on sooo many meds and at so many levels and dosages,it's very hard to remember them all.But thankyou for your concern.Gentle,warm hugs,Cari K.
Eugenia-Tx. 4/22/07
Eugenia-Tx.4/22/07 I just finished reading the message board. The first thing i want to tell NICOLE that sent me an email saying it came back. I am so sorry i dont know what happened. you sent it to the rt.e-mail i have no idea what hapened. sorry. my e-mail is honeymary60@suddenlink.net Please try again. You are all going to probably think i am a dummie but i have to ask this question. this is my first message board use. how do i move on after i have run out of space to read any new posts? Laugh or feel sorry for me and please tell me what to do. I say Hello to all of you and hope your day is going good. Crishanna Buckey,AZ. sorry to hear about your husband being deployed to Afghanistine.I too am a military wife and grandmother. my husband is retired. We have a grandson in AIR FORCE in California works on big planes.we have a grandaughter in IRAQ hopefully she will be home in 3 months. we also have agrandson in law that has done 2 tours in Iraq. also a nine month in GUANTANAMO BAY.He is now stationed in MISSOURI. I will say bye for now and pray for all of us.
Dee ~~~ Sunday April 22, 2007
Hi Eugenia,
What do you mean, "Move On"? When you read the last post, there is nothing else any further down on the page. You can scroll back up to the top of the page and click on any of the buttons to go to other places on our web site like the Archives, Support Pages, Information Page, Events, Etc.
Don't ever hesitate to ask how to do something. None of us knew how to anything until we learned how.
I too have a grandson in the service. He hasn't had to go to any war territory but it's looking like he will if we don't end this war and come home. I'll be praying for your grandchildren to return home safely.
Welcome to the Wall and keep posting. You seem to have a big heart with compassion for others.
I also tried to send you an email and got it back as "Delivery to the following recipient failed permanently".
Hugs.....Dee
Donna -VT 4/23/07
Good morning everyone, Eugenia I am from Vermont so the cold winters have been really hard on me but today is suppose to be around 80 so I am really looking forward to it. I am at work an need to leave to attend a training where I will need to sit for 4 hours. YUK. Jenny, I was put on Topimax to control the migraines that I was getting from the Fibro and then I learned from someone else that also has Fibro that Topimax with Lyrica worked well and that is when my doctor said well lets try it. I am so glad that we did, it doesn’t take away all the pain but it works better than the neurotin. I didn’t have any luck with that at all. I hope everyone has a great day and I will check in tomorrow.
Test
another test
Bonnie - April 23
Eugenia, I just noticed your question about using the br with brackets in your posts. No, you do not have to use that in order to post. All it does is start a new line. Using the P with brackets starts a new paragraph. If not used correctly it can change the entire look of your post. I would recommend that they not be used until a person is more familiar with computer language. I just sent you an email to see if it goes through. Is this a new address for you and have you been receiving mail from others?
My heart goes out to those of you that have relatives in the fighting zones. I pray that they all come home safely to you.
Today is a rheumy appointment, have to have hand xrays before I see the doctor. Hands have been very bad lately. We will discuss whether or not I have to take the Embrel or if there is a less expensive alternative. Wish me luck..
Love and hugs to all
Jenny in Utah, 4/24/07
Well, I called the office today to talk with the nurse. I told her what was going on with my feet since we have been working on decreasing the cymbalta. She told me that I could either pay for it myself, or just deal with the pain! I was so upset I was crying! Can you just see a nursing instructor in her office crying? Anyway, I knew it was not my only option. She told me there were no more options. I felt that if she didn't call me back, I would go talk to the NP myself. I work for her in her own office across town in a pediatric clinic and I know she would help me. It just made me mad this nurse would say this to me! I am a nurse and have made it a point to never say stuff like that to patients, no matter what I feel! It is not my pain they have, but theirs, I cannot judge it! I will not! The one time I did, I regretted it because there really was truly something wrong with the patient. I am okay now and am trying amitryptiline tonight, so if I type funny, I apologize. Oh, and guess what? I might get to speak at a national conference for gerontological nursing! That is elder care nursing! My specialty, and I love it dearly. I am so excited!
Tama 4/24/07
Good Morning!
I am from Cleveland OH. I am 60 yrs old and was diagnosed with fibromyalgia
in 2002. I have fibro fog and recently have been put on LOA from my job as
a LPN and my employer will not let me return to work until I
get a doctor's ok saying my "condition" has improved. How does someone get
rid of fibro fog? Just wondering if anyone has been in this situation. Is
there anyway to see if there is a way to keep my job. Or what kind of jobs
are out there for someone with fibro fog. Very frustrating.
And has anyone applied for disability. I am getting to old to make a
resume and my hands hurt too much to fill out application paperwork.
My husband has also been out of work for 18 months so I am desparate to get information.
Any information will be greatly appreciated.
Thanks
TC
Dee ~~~ April 24, 2007 ~~~ Tuesday
Tama...I wish I had a better answer for you but, fibro fog just goes along with all the other symptoms that are there with Fibromyalgia. Has anyone noticed how many nurses are effected with fibro? I'll be 60 in July and I was diagnosed in 2002 also. In 2003 Dec., I could no longer find my way to work or if I did get there, I couldn't do my job. I took a LOA for 6 months and tried to return with little success. That's when I filed for SSD and here it is 2007. I have had my disability for 2 years now but surely couldn't live on it. Thankfully my husband can still work and makes it easier for me to stay home.
Welcome all the newbies to the Wall. There seem to be quite a few.
Having a hard time breathing this morning. Think maybe it's the weather. Got a storm system moving in with severe weather included. Just what we needed.
Take Care All....Dee
Richard in Tucson April 24
Good Tuesday Morning to All Here: I don't know where the time goes, it's already the 24 of April. I am a little frustrated still, that I can't seem to get anything substantial done, last year I was able to work on my Patio Roofing on my knees, I am lucky now if I can hang up some Decorative lighting and do some small jobs around the house. I have so much to do and my body does not want to fuction for me anymore, I am so tired of being sick and tired.
Eugenia-TX: Warm welcome to the Wall. We all need our time to whine a little and this is the right place to share. I usually don't get too down but sometimes it helps to get these feelings out and share with others in the same boat, so to speak. I am one of the few men with this Fibromyalgia Dragon, there are others, I would love to share my point of view, feel free to ask me anything.
Yolanda Mia: I am not sure what is causing your hands to swell, if drinking something helps I would do that, but try to drink healthy fluids. I don't think too much fiber causes dehydration, unless you are not getting a sufficient amount of water, our bodies need water make sure you are getting at least six to eight glasses of pure water per day. I would not let it worry you too much, unless it doesn't improve in a few days.
JuneKaye Ohio: Thank you for the information on the Dried red cherries I will try them when I find some.
Welcome back to CRISHANNA, BUCKEYE, AZ.: Keep coming back it is good to have you here again.
Cari K: you are certainly welcome, that is what I am here for. We need to reassure those that are struggling with severe hardship and disapointment that we are here to comfort and lift up Their spirits. Good Luck on the new job that you found out about, keep us posted.
Welcome to the Wall Donna: Keep coming back, you have found the best place for support and comfort, wonderful people here.
Hi Bonnie:I have missed you, it is so good to read your posts, keep coming back. I am trying to get to post more often.
Bex: I have read your posts and have felt your frustrations, I understand what you must have been through. You will always be welcome here. Please know that there are alot of good people here that can give you great advice and comfort. I may not be as quick to come up with solutions or great ideas to post but will always give you my best.
Dee: I am so happy to read your posts. Keep coming back, sorry to hear your having the Flu, My wife is just now recovering from it, she was sick all weekend.
Good Morning and Welcome to Tama: Keep coming back the people here will answer your questions in time be willing to wait a little while, it is worth it.
I must get going I have to much to do and no energy to do it with. Gentle Hugs from Richard in Tucson... 
Donna -VT 4/24/07
I am so excited to have met all of you. I won’t always have time to write to each and everyone of you as I am doing this from work since I don’t have an account at home. After staring at a computer all day the last thing I wanted was to go home and turn one on at night, plus I was just too darn tired. Eugenia I too tried to send you an email and it came back to me. If anyone wants to email me directly please feel free to do so but put something in the subject line that lets me know that you are a Fibro friend or I may delete the unopened email: donna.metcalf@ahs.state.vt.us I had a wonderful day today as it has been a nice day in Vermont and I was able to go out walking today at lunch time. I work for the State of Vermont and we are walking for wellness which means we were pedometers and log our steps for the next 6 weeks, it is a great way to get people to go out and exercise. It was great for me last year as it enabled me to loose 34 pounds and then after 21 years of smoking I quit on June 30th, almost a year smoke free. I have defiantly gained some of the weight back but I am working on getting it back off. I know that with the Fibromyalgia I didn’t need more things working against me. I can’t remember who was asking about a mattress but I don’t think it matters what we buy everything feels like we are sleeping on rocks, I bought a feathertop mattress and it is still hard to sleep. Well I need to go for tonight, hope you all have a great evening.
Cari K. 4-24-07
Cari K. 4-24-07 It has been a few days since I last posted but it seems like it has been a long time.Since I last posted,i have found out that the cobra insurance that covers me even though I am out of work now,is way too expensive.Now I don't have any insurance to pay for a doctor or a pain clinic or medications.I am in for a really rough time what with me being on the pain patches and pills.I am afraid of the withdrawls.Also,the company I was working for is challengeing my unemployment compensation.I have already told them I want a fact finding interview.The issue they claim to have let me go for,happened three weeks before they let me go.It was only when we ran out of work in my dept.,that they fired me.Now they want to try to lie about why.Also,to make things worse,I have a dental problem that has to be taken care of.They say God only gives you what you can handle,well Lord,you can stop any time.I can't take much more of this!!!I try not to let it get me down,but it is sooo hard.Talking to you people helps alot,but sometimes I just have to let it out.I am also on an antidepressant that I won't be able to afford,and blood pressure pills.I think I will just go to the E.R. if it gets too bad.I don't know what else to do.My husband is on disability,so his money only goes so far.If they deny my unemployment,then I will apply for disablity also.How we will make it till then ,I don't know.OK,I have cried on your shoulders long enough.I have to get back to laundry.Gentle,warm hugs,Cari K.
Eugenia-TX. 4/22/07
Eugenia-TX. I AM SO SORRY That my emails are not going thru. I Think what could be happening we had been using a differeny internet service, we stopped using them when the internet changed hands, we had to go from cox.net and change to suddenlink.net. I dont think they have all changed from the old to the new one. I will use my internet option with Yahoo.and see if it works so i can get the emails you sweet people are sending me and i want to e-mail you all too. Thanks for understanding and answered my qustions. please try to e-mail me at the one listed below.Hope all of you are having a better day than the ones that kick you in the gut and down on the bed. Hope i can hear from you all. Soft hugs to all.
Yolanda Mia 4/24/07
Hello All! I want to first welcome all the Newbies!
Richard, thank you for your response. I am seeing my Amish chiropractor and herbalist on Thursday and will ask him about the swelling cause it's not getting better, in fact, my feet and legs are now swelling. Towards the end of my work day I feel as though I'm walking on pins and needles. I'm hoping that this goes away soon. A friend of mine (Josh's mom) also has fibro and she told me that she takes a water pill to help when she swells. I tried that, but it didn't seem to do anything, but I may have just needed a bigger dose. I only took one pill maybe I should have taken 2.
Cari K., I feel your pain. I am in the same boat, no insurance. It's rough, but I've asked for help from the pharmicist for meds that are OTC similar to my scripts. Also, I've been trying to research online for help with meds from the manufacturers. So far not much luck b/c my meds are so new and expensive. I wish you luck on a search for help with meds. I'm not sure where you live, but maybe you can be lucky enough to get help seeing a doctor. I lucked out with the Amish guy, maybe you can look into that in your area. They can't charge anything b/c of their religion, but they take donations. It is much cheaper than a regular doctor. And, he may not be as good as a real doctor b/c he can't get me any Rx, but it's better than nothing at all. I wish you luck!
Love ya all! Yoyo
Donna-Vt 4/25/07
Good morning, I was up at 3:00 a.m. thinking of my new friends. The reason that I was awake at that time was because of the nerve pain in my wrists, elbows and ankles. Because it was so early in the morning and I have to get up at 5:30 to go to work I didn’t want to take any narcotics for the pain so I used Fibromyalgia 024 spray. It works great and I didn’t know if any of you have used this before, since I am a “newbie” here on the wall. The 024 is over the counter and comes in a spray or cream and it works really great, it is topical like Bengay but it is so much stronger. It seems like it goes a lot deeper and its warm tingly feeling feels like a gentle message. If you haven’t tried it I strongly recommend it. Eugenia, why don’t you try to email me and then I can reply to your email and we will see if that works. Have a great day
.
Robin NC 4/25/07
Hey everyone. I've been keeping up with all the posts. Sure wish I could wave my magic wand and make everyone's life better. DONNA-Where do you generally buy this 024 spray you are talking about? Drugstore, Walmart....? Ray has been down for almost two weeks now. He has just been in more pain than usual. On top of all of this, he is stressing because his pain meds have not arrived. They are mailed to him from the V.A. center. If they are not here tomorrow, we will have to make the hour trip to try to get them. WELCOME TO ALL THE NEWBIES Gotta go for now. Gentle group hugs for all of you!
Cheryl PA 04/25/07
Cheryl PA
Hello everyone!
I haven't been here for awhile. I am still learning a new internet service. I like it yet I keep thinking do I? Right now I have small print to read due to a bank screen that wasn't able to show all of it's screen for me to push optional buttons. So tech support showed me how to get around that by changing the pixels. The down side is now every thing is small print to read. I am trying to not stress out over this for I have. Changes are stressful and I have experience physical problem in my stomach days after the stress. I feel like a gastro attack. I take antiacid liquid or chew a rolaids. Eat bland food and drink gingerale. Two days later the storm(so it seems)blows out and I am find and eating is no problem. Does anyone relate to this type of happening? I see my family doc soon and will ask her opinion. I see me doing this about once a month and begin to wonder if there's an irritation like an ulcer yet different. I believe it's my nerves that this stomach problem isn't all the time. Also a job/hours change with my husband's work has me trying to keep up in a new way of doing what I always do yet do it at different times around his schedule b/c of the way he sleeps and to be together an hour or two before he goes to work. If any one can relate please let me know at chrhpl@aol.com or here. Need some experiences to hear about.
I am enjoying the weather here lately. Today was much needed rain for things planted. Rain with the sun is life in itself. Blessings to you all, Cheryl
Donna-4/26/07
Good morning everyone, Robin I purchase the 024 at Brooks Pharmacy but I have also gotten a Free Sample from the FibroHugs site I think it was that site, just google it and you’ll be able to order it online as well. Cheryl, I have stomach problems related to stress too but mine are a little different and I take Prevacid but when I am under stress the muscles in my chest around my heart squeeze, I literally thought I was having symptoms of a heart attack, sometimes they even will wake me up at night. I have been trying to do more walking during the day but I am pushing myself too hard and even though I know I am I just can’t stop it, I never do anything too easy, sounds strange but I am one of these types of people that if I am going to do something I am going to do it “whole hog”. All my collegues are walking 2 or 3 miles at lunch time so I think that I should be able to too, I keep telling myself to just go out and enjoy the nice weather and forget the distance thing. OH well guess I am feeling a little down today, I will get over it. See you later.
Donna-4/26/07
Me again, I found the website that you can get the 024 product from http://www.024zone.com/index.html Good luck.
Trina NC 4-26-07
Trina(NC) 4-26-07 Hi! I'm new! This is my first posting, although i've read posts occassionally for a long time. I can't begin to say how helpful you've all been. It's always nice to know there are others out there who feel the same way and are dealing with a lot of the same stressors/pains. I've seen some of the recent posts and am wondering more about what meds or combinations of meds people are taking. I'm not sure right now what is working and it seems like I could just make a whole meal of the meds. Currently I'm taking gabapentin 300mg 3 times a day, tramadol 50 mg 3 times a day, oxaprozin(daypro) 600mg once a day, effexor 37.5 mg once a day. there are a couple others that are not related to the fibro...i use the lidoderm patches and have had injections in my hips this past jan. this isnt helping all that much....any thoughts, suggestions out there?
Eugenia-TX. 4/25/07
Eugenia-TX. hello to one and all. I hope all are feeling as well as possible today. I read the posts and found out my e-mails were still not going thru. I called the internet provider and now after i asked her over and over what to do she says all is fixed. we will see if youll will please e-mail me i will find if all is ok. I get goofy when i have to talk to tecnisions and am sure the girl that helped me is probably telling all of her co-workers i was the goofiest person she ever had to deal with. I was definately not the smartest child my mother had. Hope to get e-mails from my post friends.
Robin NC 4/26/07
Good News! Ray's meds are on their way! He said he felt so much stress lifted when he found out for sure they have been mailed. Donna, thanks for the info on the 024 spray. Welcome TrinaNC. What part of NC do you live? We live in Elizabeth City. Good night to all!
Trina 4-27-07
TrinaNC April 27 Robin, I'm in Greensboro. Have only been here 5 1/2 years, not sure exactly where you are at. Looks like I should explore the state more! Rainy painy day here today but it's Friday so that's a reason to smile!
Richard in Tucson April 27
Good Friday morning to all here; I want to welcome all the Newbies here to the Wall I hope to get to chat with you all in time.
Today I am busier than ever, I need to clean up my back yard and take most of my junk to the dump. I hope everyone can have a pain free weekend to enjoy.
I hopefully will also have one of those good weekends. Gentle Hugs until next week. Love Richard....
Donna 4/27/07
Good Friday to everyone. Hello Trina, I am also new to the wall as of last week but I am happy to have met so many nice folks. To answer your question about meds, it seems like I take a ton of them too, not all of mine are for just the Fibro so I won’t list those but the ones that I started having to take because of it are as follows: Lyrica 50mg a.m & 100 mg p.m. Topimax 50 mgs Effexor 37.5 Prevacid Hyrdrocholoridize I also take Calcium, Magnesium and Flaxseed Gel Caps. I take something with Vicodin and oxycodene when I am in a Flair. I have to laugh when someone talks about going away and packing an overnight bag, I need one just for my pills. Let’s all look on the bright side (even though it is raining in Vermont) we could all be paralyzed and not able to do anything at all for ourselves, wouldn’t that be worse. We can at least still function with some dignity. (Wow I must be in a good mood today). To all my new friends, have a great weekend and if you must hug, hug softly.
Sharon IL. 4,27,07
hello everyone....I sorry havent been on in a very long time.....with the weather warming up , my body is felling better...so i did stuff that needed to be done around the house....yard (some)....well as always i over did it...paid the price...had to hit the pain pills...heat pad,etc....but it also rain some so i got a break....Guess what Don put down payment on my ring.......getting closer heheheh!!!! thats the good news....bad news my Grandmother is on her deathbed....she lives in AZ. thats a ways from here.... I knew my grandfather but not my step grand mother,but i did talked to her these few years ,shes a wonder lady....she 96 years old...My father took his last treatment thurday.....( he has cancer of the kinnie) ...he will be tested to see if its clear up....please put him on your prayer list...thanks.....you know been thinking there is so much sickness in the world...It makes me scared ...how i lived this long...I am 51 yrs.old , and i live one day at a time...well I going go, kind of tired, need to go rest......welcome all you new comers....
Eugenia-TX. 4/28/
Eugenia-TX.4/28 Hi to all of you. the 1st thinkg i want to do is to thank Robin N.C. I got your e-mail. i have been on the phone with the goofy internet user we have and so has Ernie ans they wouls say e-mail is fixed. to day my son came over and they told to him to turn on the t.v. and it told all about what is going on with the change over of internet servers. so when i went to my e-mail i had one from Robin so i sure hope it is ok. I want think all of you that tried to send me e-mails and they would not work i am sorry and so now maybe we can start over. I read the latest posts from you all. Sounds like we are all having pain and dr. and finacial difficulties. I hope all of you are better today. I know i am still alive cause i hurt so much today. Yesterday due to baby-sitter problems we had no choice but keep our precious grand-daughter 2yrs. old. My husband is the best person any one who gets to know him always says so.he said how hard can it be to keep her? I will help you, about 2hrs into the day i found him shut up in the computer room. I not a violent person but just for a sec. i wanted to hit him.Thankfully he saw my hair having bed head and so he helped me after that. we made the day and and i took my pain pills but, they were like candy for all the good it did to take them.I have whined too much so i will shut-up.please all of you have a good a day as you can. I have a few of your e-mails so i will send to the ones i have.please e-mail me when you have time. Thanks
Nicole AZ April 28
Hi to everyone, i've been reading posts this past week but, have been to tired to post myself....
i get to hurting so bad i can't stand it. sitting hurts, lying down hurts, you all know the feeling huh. Someday's i get to feeling so sorry for myself and get so mad about not being able to work i miss working so much. but, you know if i did have a job i would be fired for taking too many sick day's.
i will be seeing a new neurolagist on may 11th and will be asking him if i have fibro and multiple sclerosis too. double whammy. i will also see about getting another mri to find out how the MS is progressing.
i like so many here on the wall have applied for ssdi and the 1st time i went about it alone and was denied. so now i have a lawyer and it will be 2 yrs in oct. thankfully i have a good friend that helps me. we aren't married so i can get state funded medical ins. thank goodness for that. as so many i see on here that don't have insurance for one reason or another.
well thats all the energy i have for now. gentle fibro hug from me (((O))) ~nicole~
Cheryl PA 4/28/07
Cheryl PA
Hi to everyone, Thanks, Donna, for commenting on yr stress related problem. Mine is different and yet yrs is concerning too. I will soon see my doc & talk about it. Right now I am fine.(How long - who knows).
Sharon IL...yard work and pain later...that I relate to after the other week when I did some mulching. My massage was perfect timing and biofreeze. Yet I would like to try some 024 pain killer-it sounds great.
Eugenia...having my soon to be 2yr old grand daughter next weekend. Look forward to it and am glad for my husband's help. She's a joy and yet I admit that we both are ready to say goodbye. She stays over one nite and then goes to church with us. In June the 2nd one is coming. Another girl. Then will try two overnite. Techs are very familiar with me too I believe. I must admit I am learning alot. They continually seem patient. What they say when I am off is none of my busines. I learned that in Alanon. What other people think of me ....is none of my business. It's their job I say. I am glad it's free and I call after nine to use free air time on cell. Well bye for now we are about to go out to dinner. Cheryl
Dee ~~~ April 29, 2007 ~~~ Sunday
Hi everyone....looks like we have some more newbies here at the Wall. A warm WELCOME to you and am looking forward to getting to know you better.
Richard....are you feeling any better? Last I read you were having a rough time doing the everyday normal activities. Last year you were so productive and active. I've always admired you for staying strong and always being there for the rest of us. Just so you know, we can be there for you too.
Sharon/Il....I do love to work in my yard, but yes the pain follows it. It seems that I hurt if I work outside or stay inside. At least I feel better about myself if I've got something done while I hurt...lol. I no longer plant a veggie garden but I do have a few flowers and they still need some attention in the spring. Hubby bought me a new mower last year so it's more like cruising than mowing.
Eugenia....has your email got straightened out yet? What a pain!!!
Yolanda....how did it go at the Chiropractor? Have you got any relief from the swelling? I too have had swelling in feet and hands but it's not from fluid so water pill won't help. Let us know how you are doing.
I will try and get back here tomorrow. I have others I wanted to talk to but am tired for now. You are all very special people....hugs
Joy 4/29/07
Joy in Denver - I am a newbie here and am looking for someone who has fibromyalgia and hypothroidism. I have lots of questions and would love to meet a new friend for support. Thank you.
Kate/NYC April 29, 2007
Sunday, April 29 Hi, this is the first time I've posted; I just discovered The Wall. I've had fibro since high school (about 16 years) but didn't get properly diagnosed until 2003. They said it was juvenile arthritis before. My pain levels are very high right now and I just saw my pain specialist a couple of weeks ago. She increased my Robaxin dose to 750 mg 3x a day, and added Ultram ER 100 mg at dinnertime because my pain is worst at night. I also take Lyrica 50 mg 3x a day. Three days after I saw her, I went to aquatic therapy and when I got out of the pool my whole body just tightened into a big knot and the only thing I could do is scream for an ambulance. I stayed in the hospital for a week, with a morphine PCA and various other painkillers, and when I got out I could barely walk. I attribute it to a nine-pound weight gain to my already quite overweight body. I took a taxi to a Weight Watchers meeting and signed up. Lying still= bad. Stretching, moving gently=good. For me, anyway. I also have a very painful injury to my left shoulder sustained while sleepwalking--an impinged rotator cuff. It can take months and months of therapy, injections, and medication to fix an injury like that. I want something that can be fixed by a simple surgical procedure so I can be done with it. The pain is getting to be too much for me and sometimes I just lie in bed and scream. I have a good roommate who gives me heat packs and asks me if there's anything she can do. My partner is equally supportive--she helps me divert my attention from the pain by playing board games and watching DVDs with me on my computer. And if I can stand to be touched, she holds me. I can see that this is a very supportive, loving community and I hope I can be part of it because I have a lot of support to give, and once in a while I need someone to talk me out of jumping off the Verrazano. I live about 300 yards away from it. :o) love kate/nyc "it's a bird. . .it's a plane. . .oh, never mind, it's just Kate levitating."
Amber In S.C. , April 30,2007
Hi everyone! Hope everyone is having a good day. I haven't written in a while on the wall, but i have been keeping up with the postings. I have been having weeks of severe insomnia and my doctor just put me on Lunesta 3mg. It makes me a little dizzy and slightly relaxed, but does not make me sleepy at all. It's almost like i didn't take anything and that's the stongest milligram! I used to take Ambien about a year ago and that did ok. I tried to get back on the Ambien because my insurance covered it. Now my insurance has changed it to Lunesta. I am hoping that one day they will change it back to Ambien (my pharmacist said they might or they might in the near future cover a generic Amben) I hope it's by the next time i need a refill on something for sleep. The bad thing is that Lunesta is supposed to be better than Ambien....not in my case that's for sure. Rozerem is also not covered by my insurance right now. What's even stranger is that nowadays i'll go 4 days on 3 hours of sleep and feel like i don't even miss it even though i know i need sleep so bad for my health. It's scary. I'll be up all night some nights and be tired a little, but not the usual sleepy tired that you get when most people are up all night feel. It's frustrating. It's like my brain and body don't want to turn off at night no matter what i do. Anyway....i know all of you are tired of hearing me ramble on and on about this..i'm sorry. Hope all of ya'll have a nice day and i'll check in later. Take care!
Kate/NYC April 30, 2007
Hi everyone, today is a beautiful day but it has been so hard. :*o( One of my best friends who I've known for about five years (she was my therapist for one year but we realized we were better suited to be friends so she waited two years and then saw me in person again--SW rules) suddenly won't speak to me and I can't figure out why. Last text message I got from her she said she was overwhelmed and she hoped things were looking up for me. (I had asked her for a lift from the bus station) Then nothing for five months. Ignores everything I txt, email, and voicemail her. It's heartbreaking, devastating because I love her so much. I miss her terribly. Our initial separation was what triggered my first real fibro attack so you can imagine how I'm feeling physically right now. :o((((( I've sent her a couple of emails telling her how much I miss and love her and that it hurts really bad to not see or hear from her, but I haven't heard anything from her and I don't want to harass her. I have to admit that in addition with all the other garbage going on in my life and the outrageous pain levels I have been feeling quite suicidal. Maybe I just want to make her sorry she ignored me--that's a waste of my life. But as for the pain, that's another whole can of worms. *sigh* I hope everybody is having a better day with as little pain as possible, Love, Kate/NYC
Richard in Tucson 4/30/07
Good Monday Afternoon to all my good friends here at the Wall.
I have a couple of minutes before I need to get my daughter at her School Bus Stop. I hope you all had a pain free weekend, or if not at least less pain.
I had a nice weekend kind-of busy though. I went to a Mexican Mariachi festival Saturday and church yesterday.
Donna: I agree with what you said about we can at least function with some dignity. We must recognize that and be appreciative of it, thank you for that reminder.
Dee: I am feeling a little better this week, I am not the same person I was a year ago. I have slipped more into the fatigue then ever. Thank you for your admiration, I will stand strong again soon, thanks for being here for me.
A warm Welcome to Joy in Denver and Kate/NYC: I hope you can keep coming back here it is a wonderful place in cyberspace.
Welcome Back to the Wall Amber in S.C. and Sharon IL: I am glad to read your posts.
To anyone else my Fibro Fog made me miss I welcome you too.
I must get going talk to you soon Love Richard...
Eugenia-TX.4/30/
Eugenia-TX.4/30/07 I just finished reading the last few messages on the board. please dont think i dont care about all of you i do and reading and hearing what is going on with you make me feel less lonly.So many of my best friends never return my calls anymore since most of them can run and play and i can sit and gain weight. Joy i am also an almost newbie. I have fibro, deteriating disc and hypothroidism. so if you want please send me an e-mail. I had a difficult time trying to e-mail different people and they all came back. finally i found out that we had to change our internet provider due to they sold it to the one we use now. i am hopefull they got it fixed. hi Kate/NYC. i am glad you found this site too because just reading from it i think evryone is sincere about caring and understanding. Kate a few yrs ago i went to the water joke!! it was for me anyway. no more of that for me.I also have a torn rotor cuff. unfixable so i have to live with that too. I just read what i have written and i sure am a whiner tonite. will try not to be whiney every time i post. Kate i see you have a sense of humor i like that. The ending of your post was cute. when we feel like it i think a sense humore helps us all. Hi to Richard in Tucson hope your monday was a good one. it is 1.a.m. and i need to try to go to bed. hugs to all of you