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Discussion Wall Archives, ending March 14, 2006

July, on March 10
KAYSEE, you've been much on my mind. I'm sorry about your father's passing but I know he was very sick and probably ready to leave that body. I AM SO HAPPY FOR YOU that you are at peace with yourself and that relationship. I know exactly what you mean after my experience with my mom. We weren't close, but I did all I could, and that's what matters in the end to both of you. I hope you have much time to rest and recover and ponder and grow. HUGS to you.

SARAH, your dream and your trip sound like a grand adventure, but quite a hardship to someone with Fibro. It's not just the making it through the hardships that will take a toll on you. When you get back, you will be even more depleted than your winter was, especially if you just had the flu. I hate to be a wet blanket, but consider that everything takes five times the toll on you: what if you get bitten? What if you get sick from the water? (I know, you're careful, but it always happens to me anyway.) You would become a huge liability to the group and for months and months of recovery after. I would say if you had luxury money and were traveling as a tourist, staying in an American hotel, go for it. But I think the heat and humidity would knock you out. I know that as soon as I got off the plane, I would long for the nearest air conditioner and be catatonic until I got home. And I've been pretty sturdy this winter! Take care. HUGS to all.

Doris 3/10/06
Good morning all! Hope you all wake up feeling better today physically and mentally! I had a wonderful day yesterday with my daughter and grandson and my mom. We went out all day to run some errands, 2 dr.appts.(1 for me ,1 for my daughter), out for lunch, then last stop was the grocery store. Then I took mama home and we came back to my house where my daughter's b/f picked them up after he got off work. We had fun together BUT afterwards I was exhausted! I fell asleep in my chair really early! I didn't cook supper so Jason made him some sandwiches and I didn't even eat cause I was so worn out. I was so achy and tired........wow! He woke me up later and I took my night pills and went straight to bed, kissed him goodnight and fell right back out. I was wiped out. But I had a great day!!! I love spending time with the people I love!!!! I barely remember Jason kissing me and telling me he was leaving for work this morning. Then when I got up later this morning, he had washed some leftover dishes that were in the sink.....he is such a sweetie. So thoughtful. He has been so good to me thru all my sickness.

Now let me tell you the fun part. I went to my dr. appt at 8:00 and he gave me a shot in the hip for what he believes to be bursitis ( I actually think its part of the fibro,but if it helps....hey that's all good). I walked around all day, up and down , in and out of the car after that shot, can ya believe it? We didn't get home until 4:00. I don't know how I did it except by the Grace of God.....and I just won't question it any farther. I had to get a new Topamax prescription to keep my migraines away. That med is wonderful!!!! I never get migraines now....NEVER!!!!!! BUT I will have to take it the rest of my life is what my neurologist told me. I don't even get those little pains across my head anymore like I used to. Everything has completely cleared up. NOW if I could just get rid of this blame old sinus junk that is driving me up the wall. I am taking OTC meds for it and it is helping slowly. I hope summer doesn't mean more sinus problems for me. Also my back and both hips are hurting some this morning but its a mild pain so I can handle. Oh I had to go yesterday and get a printout of all the meds I have taken since 2003. Its for my disability hearing next month. My lawyers's office called and wanted it so I am mailing it today. I can't wait for my hearing ! I pray I win!

Sarah, I must say that I think that trip will be way too much for you honey! I am sure you would love to go but YOU have to think of your health first! I don't think you will be able to hold up under those conditions. YOU really need to think about this ! I know I could not do it. Please consider everything before you go and do it. I am only thinking of your health dear.

Jaime, I know you are having a hard time. I pray you can find some peace and comfort and live in the present and let the past go. I know it's hard when you see a person who has hurt you. BUT to me , there is only more pain if you dwell on it. If the only way you can find peace is to confront this person, I think you should do so! Let him that what he did to you makes him the weaker person...not YOU! You are strong lady and stand up and be proud of who you are and NEVER feel ashamed!!!!! The people that do these things are weak! They are nothing and deserve nothing. Trust me, someday they will get what is coming to them! I know Jaime cause I have been in your shoes! I was raped when I was 18! BUT unlike you, I let it make me stronger and I looked at it like the way I am telling you! So I hope my words give you some comfort or some peace! May God bless you and help heal you from this awful thing you struggle with. Hugs to all and love and smiles.

Tip Of The Day ~/\~ March 10, 2006

~*~*~ If You Fall Down 10 Times...Stand Up 11 ~*~*~

carrie 3/10/06
aren't you just all sick of hearing "I can't do anything for you"? i went to rehab for a month for fibro and mostly the chronic neck pain. i asked her if we could work on my knees and she looked at me like i was crazy. my dr never put fibro as my dx. so she could not treat me for fibro. anyway, my neck pain seemed to get alittle worse with the rehab. last night they discharged me and said the dreaded words. so now i'm on to yoga. i just felt soo alone with this therapy. everyone in that room was getting better and pain free, then there's me, who kept pretty much getting worse. you feel like such an outkast sometimes and that of course no one believes you. i do have to say last night i had a full blown panic attack driving to rehab and all thru the session. i talked my way thru the whole night. i'm so proud of myself. a few years ago, i would've turned around and gone home. but i kept going. i didn't even have my ativan cause i left my purse at home. it was a pretty big step for me.

'Chele
I have FMS, Lupus, MS and heart problems, I'm 38 year old and still have two daughters at home, ages 14 and 12. I found this site surfing the internet, and I'm hoping maybe someone has some advice. I live in SC am on disability and state Medicaid, and there are NO doctors here who will see you if you have FMS and Medicaid. Does anyone have any suggestions? I am doing water therapy and it helps, but the pain in my neck, back and legs is so intense, it's hard to deal with this much pain on a daily basis. The only thing I've ever been on that helps at all was Oxycontin, I know there is a lot of talk about this drug, but it really seemed to help me. I'd appreciate any advice or suggestions. Thanks and God Bless!

Kaysee 3/10
Hello everyone. Yes, July, I am happy that my father left his ill body. While I miss him, I do not miss seeing him in so much pain. I'd rather let him go than to see him suffer and stay with me.

Sarah -- What happens if you get sick in South America? I don't think you'd have any medical coverage and I don't know how well their medical system is. One time I had to arrange for an ill person to fly home from France -- I almost needed to hire a nurse so the airlines would be happy. It's made me leary of getting hurt or ill in another country.

Carrie -- unfortunately, I don't know what hints to give about biofeedback/meditation/self hypnosis. I've learned so much and can't break it down. You may be able to Google the subject and read more about it.

Well, I'm just sitting still these days. I'm waiting to "crash" -- and if I don't, just as well. I hope you each have a great day.

Davana Friday March 10, 2006
Hello To All, I just happened on to your site and do not know if I have fibro or not but I do believe I have what is called Dercum's Disease and very little is know about it either and I have the same horrible time with Dr.s making me think I'm a hypochondriac or insane becuz I hurt all over at times. I wanted to tell you about it becuz they ( fibro and Dercums) seem similar to me. Both have something to do with viruses and immune system. I have many many fibroids or benign fatty tumors that hurt when I barely touch them . I just had one removed from the back of my knee/leg area. The dr says never heard of Dercums but if I have any more tumors that bother me he'll be glad to just cut em out!! If I have them all removed there wouldn't be much left of me. You'd have to read article to understand probably. So, I hope you do and I am going to continue reading about your dilema's too...Hugs & Prayers DLM http://www.associatedcontent.com/article/11375/dercums_disease_a_painful_existence.html?page=3

Sarah/NY March 11, 2006
Dear Friends, Thank you for your kind words of advice. Upon reflection and a call to my doctor, I have decided not to go. I am sad to say good-bye to a dream and once more be the poor little thing who has to stay home. There are much harder things to lose I know, but when it's your thing it hurts. Thanks again and my condolences to the woman who just lost her father.

Diana 2/11/06
Hoooowdie! Wow we have so many new people! Welcome to all! I'm newly diagnosed with FMS & fairly new to this forum, I've found a lot of great info & support here. I just have to keep reminding myself that God gave me 2 ears & 1 mouth, some times I overstep my boundaries, I also have a severe case of hoof in mouth disease!
Kaysee, I'm so proud of you! You did right by your dad when your chips were down. I hope you can really spend some time on just you. That's what I'm trying to do now. I'm not very good at it & I mess up a lot, but I try to remember baby steps will lead you farther that giant leaps! My best friend has MS & is trying to handle her aging mother who lives by herself & is about 87. Her mom has become more forgetful lately but my friend still relies on her for many things. It's a tough spot for her to be in & I try to help as much as I can. So I told her how strong you were & how good you now feel about it.
I haven't posted for awhile because I had a small mishap, which we all know is a major disaster with FMS! I was on my way to my car last Thurs., on my way to a church luncheon, when I slipped on an icy patch on our driveway. I did't fall, just jarred my whole body trying desperately to stay afloat! My middle name should really be Grace! I've been on extra meds & extra bedrest & fumbled about being humble to let my friends at church help with meals. That part was kind of fun too, we never knew what we were going to have, they were all delicious!
Richard- I didn't even notice that you had posted the same thing twice, awhile back! Just kidding! That's something I would've done but never noticed!
Well I still can't sit too long & it took me some time to catch up on all the posts. While I've been in bed more, I have remembered all of you wonderful people in my prayers! Hats off to everyone! Luvs & little hugs!

Doris 3/11/06
Hi everyone. Sarah, I am so glad and relieved to hear that you are not going on that trip. I do understand your disappointment. I could tell how much you really wanted to go BUT I also knew that you were not physically up to it and sometimes it is good to ask advice from people who can be more objective about it. I don't think you will regret not going in the long run. Trust me, we all here on the Wall are all looking out for each other and we try to help others make the best choices and decisions when they ask our opinions. Thats's why we are like a second family to each other. We really care and want the best for all our friends on here. So cheer up Sarah cause we all know you made the right choice! Special hugs to you today and God bless you and I hope you aren't feeling too down.

Jaime, how are you today ladybug? Had you on my mind alot. Hope you are feeling much better physically and mentally. Wish I could personally give you a big hug and tell you face to face that you are gonna be just fine! YOU are, ya know. You have to believe in yourself and be more confident in who you are. Don't let the past haunt you forever....it will destroy your future if you do! I just want you to know that you can go on BUT you have to heal yourself from the past and let it go. It's excess baggage that is weighing you down..... it's all over now so just release all the hurt and pain and start fresh!! You can do it and I know you can!!! I been there and I came back...you can too! So my best to you and feel free to email me anytime if you wanna. Take care and hugs to you today. May the Angels guide you as you struggle thru this.

Richard,hope you are doing better. You just won't slow down will you guy? LOL! You have so much to do and I can't believe you try to accomplish so much. But I have to give you so much credit for all you do everyday. I still think your wife is a very lucky lady. You can even tell her I said so.....lol. Everyone else take care and God bless you all and have a great Sunday! Hugs to everyone!

Barb(Pa) 03/11/06
Hi FMily, Just a quick post to welcome all the newbies and to offer my sympathy to kaysee on the death of her father. You will NEVER regret the time you gave to him in his final time on earth,its time that can never be relaced.I know the final time spent with both my parents in their final months and days is priceless to me.

Richard,I got your number,but it was very late when I came by the Triple T Friday night...maybe next time my husband and I can meet you and have coffee.

This has been a fast turn around to L.A. and back to Ct. for Tuesday morning delivery. Then its a quick stop at the house and off to Louisville to the Mid America Truck Show the 23rd to the 25th. This is a major event for our company every year since we are located in Louisville. Will try and write again soon. God bless all of you and take care of you. Warm fuzzy hugs

Jaime 3-12
Hi all, Doris thanks for your wonderful thoughts sweetie.

I am doing a bit better. Had a really rough week. Was having tons of flashbacks and remembering more and more of the attack. When I went to my family doc he tried to have me commited to a psych ward. I really went off on him, called him a few choice not so nice words, and told him you can't commit me due to the fact that I am not wanting to hurt myself or anyone else. He was going to send me somewhere out of state if he commited me. I got hooked in, thanks to my regular therapist, with a lady with SOAR. She has really helped with some visualization and calming techniques. So I am doing a bit better. Not been nearly as scared to go to sleep, or nearly as anxious. And even though this therapist wants me to quit the fire company, this morning the fire tones went off, we had a motorcycle accident, pretty bad, and I got up for the first time in a long time, and I went. Although I missed the ambulance to the scene I still went. And it felt good to be there.

With the warm front and rain and storms coming my knee and back are hurting quite a bit. But you all know how it is having the fibro, and then with the psoriatic arthritis in my low back doesn't help at all.

Hope you all have a good day, and stay warm.

NB: Currently there are no archives available. There are no archives for January. The archives for February are presently being formatted and will be available by the end of the week.
Thanks for your patience -- one of the trimming women

Sherri 3/12/06
Hi everyone! I haven't posted for at least a week. I just wanted to update any of you who may care... My husband still has no work, so I am working almost full time @ the library still. I am having a terrible fibro-flare up. Our insurance has been cancelled because of his job loss so I can't go to the dr. We are too tight on our money. Not able to buy any meds either. Please say a prayer for me. This is a real tough trial right now in my life... I love you all and all your support. Hugs <>< Sherri

Judy/Illinois
Hello everyone
This is my first time on here, having just found 'the wall'!
I've read all the ones posted right now and it seems like a good place for me to learn a few things maybe and hopefully help a few too, in time at least

I have been diagnosed only a short time ago as having Fibromyalgia, but I believe I've lived with it for years, not knowing what was going on with my body, which I understand is pretty common?
For about a couple months now I've endured a flare up that has nearly knocked the wind out of me
My mom was in the hospital for 3 weeks over the Christmas and New Year holidays and I suddenly had a great deal of weight on my shoulders seeing to it that my dad, 88, got up to the hospital every day and making sure he was taken care of as well
To make a long story short, in the middle of everything I began having pain in my right hip area, then up into my back rib area, and need I go on?
By the time Mom got home from the hospital I was having tremendous pain
Shortly before all this, I changed doctors, which turned out to be one terrific move!
My new doctor has understood my pain and after about 3 months of it we started talking about fibro
She has put me on pain killers(Vicadin and Naproxen)besides Cybalta and Flexeril to help me sleep
I, too, have had muscle cramps and charlie horses in my legs, my back and even my feet, therefore the Flexeril
The Cymbalta does encourage sleep but I'm not sure I like what I think are side effects of this drug
I've only been on it about a week so I'm not sure if these problems pass in time or not
The Naproxen takes the inflammation away and is a great help to me
But I couldn't get by without the Vicodin for the pain because it helps most of all

Reading that some of you at the Wall use a CPAP, I have to say as much as I hate the thing, I use one too, for sleep apnea
I don't have a mask tho
I have the type of hose that goes into both nostrils
I have always had such a time being hot blooded, sweating so much, that I got them to give me the alternative to the mask. I don't mind it much at all
It's just that blasted hose that has to follow me whenever I turn over at night
I find it helps me sleep much deeper, too, as someone expressed on here
I feel much more rested and refreshed by the time I wake up, provided I have actually had enough sleep>BRMy husband is accustomed to it now but still hates it when I'm not in bed with him, saying it bothers him when I'm not beside him
But now that he knows it's a part of fibro and not me just being difficult, he has accepted it much easier and understands about it at least, even if he never learns to like it

Well, I thank you for letting me pour out some of my complaints
You all seem so kind and understanding from what I've read here
I hope to get to come back again soon!
I'm a hugger too, so I'm sending them out to you all right here Hugs to you all!

Dee ~ ~''~~ March 13

Hey everyone...yes we have many "New Voices" here, welcome to you all.

I thought many of you would be interested in knowing where our Bonnie is. Yes we all expected her to return around the first of March but she hasn't been able to. She assures me she is working hard to get back with us here on the Wall. Bonnie returned from her vacation very ill, entered the hospital and is now home. The doctors have told her it will take several months for a complete recovery but she tells me she will recover and if Bonnie says she will....she will!!! Think I'll throw a little prayer in there just in case she's not in complete control. Love you and miss you Bonnie.

Hope For The Best, Plan For The Rest And Keep The Faith

packrat/mi 03/13/06 (Lee Ann)
Hi all! I haven't posted lately but have been reading off and on what everyone has been saying. It is comforting to know that others are facing trials because of their afflications just as I am. I have been having a rough time lately and haven't been able to do very much. I would like to know how some of you cope with not being able to do the simple things in life, like cooking, cleaning...etc. I get very discouraged because there are days I just can't do any of the things that I consider maintenance in life. A trip to the grocery store can be exhausting and it may take two or three days before I get everything put away. I have a hard time cleaning and things pile up to the point that it is discouraging and totally overwhelming. I know that quick meals from fast food places are not good for fibro but sometimes that seems to be just about all I can handle because I am too exhausted or hurt too much to cook. To the woman who had to give up her dream trip I want to send my hugs. I know how hard it is to give up a dream. I have had to face this many times in the past few years. I know that it will be hard to accept that you can't do the things that you want or wish to do but if you can learn to enjoy the small things that you can do it will make it much easier. I have a grand nephew that I adore and so want to take him places, like the zoo or other places that requires a lot of walking but I can't physically do it. I have learned to do other things that he is interested in, like building things with his construction toys or playing computer games. It gives me time with him and it saves me a lot of pain. One piece of advice, don't turn your disappointment inward because it will cause pain in the long run. Thanks to all for your kind words and being there as a listening ear. Hugs and prayers to all.

kathy march 13
kathy march 13 I'm new here, and would like somwone to talk to.I have had FM for 2 years it is all over. i can't work or mush of anything. I'm gaining weight very fast now. sometimes I feel like it is all in my head. I have seen 3 speicalest. They have all told me I have 18 of the tender points and I realy do have FM. I still don't want to hear them. I live with my Husband, my Daughter, 21 yr old and my mother-in-law 80 yr old. I still try to do things around the house. the med I take help some. I don't think my body works will with meds ultram ,vicodin I take two vicodin it 750 It real dosen't bother me. so I'm going to see if there is anything elce.

Deb Gregory 3/13/06
Hi Everyone, this is Deb form California. I am brand new to posting messages here, but I have read yours, so I know you all understand. I need help and suggestions, if possible. I am at a place with fibro/CF that has me very frightened. I have had fibro for about 10 years, but the last 3 have been horrendous. I have had to quit my job as a school teacher, let my beautiful vegy garden go to weeds, stop my favorite hobbies like jewelry making, sewing, reading(can't focus),traveling, walking my dog, swimming, cooking...the list goes on and on. Everything that defined me- as me-is gone. I feel like I am gone in spirit, just here in body...and the body aint so great now either. The pain is at a 10 out of 10 most days, the brain is in a constant fog, and the fatigue is overwhelming. I've seen dozens of doctors, taken hundreds of pills, tried every non-traditional therapy I know of...yet, my days have become unbearable. I am at a place where I am quickly losing hope of ever feeling better, and death has become an option. I am only 49. Please help any way you can. thanks for "listening"...Deb.

Dee / March 13, 2006

DEB:If you have FMS/CFS, you are a Survivor. Death is not an option that we can make. I understand how you feel and how you think. Three years ago, I was you. I had a doctor that recognized the symptoms of pain and depression could equal suicide. After a few years on a drug for depression and getting used to the idea a portion of my life is different, things are looking up mentally. No it hasn't eased the pain but I'm better equiped to deal with it. Even in this group, the word depression is sometimes taboo. I can't tell you how many times I've read, "What do they mean I'm depressed?"! Or, "I'm not depressed, I'm in pain!" Unless you're Superwoman or Superman, how can you deal with the pain and not be just a little depressed? When I first was diagnosed with FMS, I had never heard of it and rushed to the internet to learn all I could. The first thing I learned was the highest death rate in FMS patients was caused by Suicide. That has to change! No one should have to worry about that. That should never be an option....ever. Hang in there with us Deb and we'll hang in there with you.

For Anyone Thinking About Suicide Go To - http://www.metanoia.org/suicide

Jaime 3/13
Deb, honey please don't think of death and suicide. Please go see a therapist, one that is an M.D. who can get you on the right medication to make you feel better. The pain can get to be too much, and I understand how it can be way too much. Recently I was in the hospital due to such severe pain. I was in for 5 days. I have been put on some new medication today to help things. Then again right now I'm dealing with PTSD problems also. So you hang in there sweetie. If you want to email me please do.


Richard in Tucson March 14, 06
Hi all: It has been a while since I posted & I only have time for a quick one @ this time, because I volunteered to bring my daughter Nicole who is six years old on a field trip this morning.
I barely got any sleep last night because our son wrecked his car last night. I had to go get him at 1:00am he is fine but the car is totaled. I have to deal with the insurance company today also. I hope to come back to the wall soon, I will see how things go.
welcome to all the Newbies, take care all of you & Gentle hugs from Richard in Tucson....

Vicki
Hi everyone.
I am 51 and have been dealing with fibromyalgia for about 4 years.
I didn't know what the problem was for along time and after a couple months of not knowing what was wrong and feeling like I was going to lose my I knew there had to be something really wrong, not in my head only.
Finally I took a picture off the internet to my doctor and said, "THIS IS ME!" and this picture showed all the spots that are likely to be a problem with fibro. and I got this from a fibromyaliga website.
That was 2 and 1/2 years ago and I am still very tired, sore, and just having a daily fight to maintain and work.
I am on Duragestic 75 mg patches and have tried other drugs to no avail, morphine sulfate, darvocet, some sort of "pain" sucker (that was awful).
Then oxycontin and now back to duregesic patch which makes me stay in a fog most times and feel totally unconnected.I have put off turning to the support groug but now I know I need to know what others are doing to copy daily.
Now that I have a laptop at home perhaps I will be able to hear from others and see you are faring.

Have a great day. Vicki

Lee Ann (packrat) 03/14/06
Vicky - I am 52 years old and was diagnosed a little over 2 years ago. I went through the same thing in which I finally got my doctor to listen to what I was saying about being in pain. He then sent me to a specialist who confirmed that I had fibro. I struggle every day to get things done. My problem is not so much pain as fatigue. I cannot even do the simple things like cook and clean some days. I was recently permanently laid off of my job as they eliminated my position. It has been a blessing in disguise because I am feeling better now that I am out of the stress that the job created. I am going to have to find something again but for now the time off is the best. One thing I have learned is to listen to your body and don't push it to do what is too much. The one drug that helps me when I am at the worse makes me so dopey for days I can't take it very often. I really feel for you trying to find something to take for the pain. Please keep in mind that we are here. Hugs to you. Richard-I envy you for your energy. I am impressed how much you seem to be able to do. Hugs to you for the stress you are under because of the accident your son had. Thank goodness he is ok. Oh yes, the Feldene is not addictive as far as I know.