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Discussion Wall Archives, ending March 22, 2006

Lee Ann (packrat/MI) 03/20/06
Good morning to all! Doris, amen to what you said. I have such a struggle some days just keeping the faith but HE is faithful even if I am not. I am having one of my achy days. I went and did the grocery shopping, ran some errands and over did everything. Now, I am paying for it. I fully understand what you mean that it will take all week to recover but life goes on and we must keep trying to do what we need to do. Hey, Richard, I hope you aren't overdoing things. I haven't seen your postings for a couple of days. From one newbie to all the others, please keep posting as someone is reading what you post. Have a good day today, my newfound family.


Richard in Tucson March 20, 2006
Good afternoon Every one: I am back for a short while, I had a vision test a little over an hour ago & I can't see very well because they dialated my pupils. Supposedly this will wear off soon.
Coco from the west: The same thing was happening to me, I was told to hit refresh or F5 key and that usually helps bring up the new posts. What part of the west are you from?
Lelie: Can you tell me what mps stands for in your fist diagnosis? About your insurance problem just have your Dr. perscribe you Fibro Medicines with a slitely different diagnosis, ask him if he can do something like that, when you aquire other Insurance. You deserve the best care you can get. I agree with the others about your attending your Sons Concert. You are doing the best you can.
Dee good to see you back. I am so glad to read of your excitement about your 2nd Great Grandson's shower.
Rose: Don't think of a message here as going unnoticed, energy is limited & we sometimes are not able to address everyones needs all the time, it dosn't mean we don't notice it. Feel free to e-mail someone here if you feel the need they will respond, this is a wonderful group of people.
Diana: I feel for you, I have felt I was going to collapse @ times & die. The Fatigue is so great @ times. I hope you come out of your slump soon, we are here for you. Ther are other alternatives to Ambien, try herble sleep preperations, or Lavender oil spay mist on your pillow at night. when I get the time I can list a few on this sight if you want.
Barb (Pa): I have had a terrible tiome with my feet, dry itchy all over the bottom & in-between the toes, I also get this on my thighs. My doctor says this is related to my Diabeties & Candida or fungle infection of some sort. Good Luck with your Truck show.
Lee Ann(pack)/MI: I hope you can drop the packrat soon. Call yourself Lee Ann(Joyful/MI) or some thing that is attractive as your name. I am greatful for your concern about me overdoing things. I am not able to post on the week ends my wife doesn't understand my need to talk with you all here, so I don't come here when She is home. In addition it is my family time & our kids are always on thge computer then. I have to finish my income tax & go see the Tax lady by 3:00pm. I will come back soon, Gentle hugs from Richard in Tucson .....

Lisa May, March 20, 2006
Good Evening to all on Monday, March 20, 2006 I am a new "poster". I have been dx'd w/FMS for 3.5 yrs and feel like I have done it all. I found a clinic that I thought would have the answers I seeked, only to be disappointed yet again. Tomorrow I am having a MRI of my pituatary gland and brain looking for any tumors. It appears (via blood tests) that my body is under producing one thing and over producing another. Mostly I'm just scared that I'll be "normal" and have to start a box #1 all over again. When does it all end?

vea
Today is March 20,2006. It has been 2years being with my friend Fibromyalgia there are day I cry because it hurts and days I feel will it ever get better. I feel thatI am falling apart piece by piece. Can anyone hear me I need a shoulder to cry on. Vera from Delaware

Jaime 3/20
Hi Vera,

Welcome to the wall. I too am from Delaware, I'm out in Hartly. What part of Delaware are you from? I can understand about needing the shoulder to cry on due to the pain. It has been very difficult for myself too, about a month ago I was in the hospital for 5 days for pain control. Although the docs found that I also have psoriatic arthritis, and psoriasis on top of the Fibromyalgia. If you ever want to email me please do. I'd be happy to email back and forth. Hang in there.

Judy Mondy, March 20, 2006
Hello everybody. Vera, I feel for you. Today is a painful day for me as well. The storm is coming and I feel it everywhere. The temp is about to drop thru the bottom too, they say and that will make it even worse for me. But who are we gonna complain to about all that? Each other I suppose. My husband is very understanding and an angel about this fibro stuff, but the rest of my family seems sort of stand-offish about it all. Even my folks. When they call tho, they always ask if I'm feeling better, as if it will go away and never bother me again! I try to explain to them there's no cure but they're really old and they don't get it. The rest of the family is totally unconcerned as if there's just nothing wrong with me and nothing's changed. They look as me and go "Hmm" when I try to explain to them about fibro. I don't know what they're thinking but I really could use more than just a "Hmm" from any of them. Does anyone have any suggestions as to how to get thru to my family? I love them and really could use their support in all this and not just have them avoid the topic and me too. It really hurts to have them sort of shun me like I have the plague or something and just turn away. Before you ask, yes they do know it's not contagious! ;.) I thank God for my hubby tho. He's the one who keeps me sane. Without him I'd feel like I was serving a life's sentence here.
Vera, trust me, you're definitely not alone in all your pain, sweetie. If there's any way I can support you, know that I'm here for you too. Pain is one thing we all have in common. The only way we're different in that is the way some of us cope I think. But we're all here for one another. I'm fairly new, but I do know that much about the Wall. I've read the posts every day since I found it, sometimes even twice, just to feel their support of one another. As many here on the Wall do, I pray for everyone here. So feel encouraged, Vera. The power of prayer is amazing. God is faithful.
Hey out there! Can we just have a big, huge, but soft, cuddly group hug for Vera? Let's make this a group effort fellow fibros! Here's mine...>HUG< Great to meet you Vera! God bless you all! Judy

03/21/2006 OmahaSandy
Hell-o all.
I found this sight quite by accident and have spent the last hour or so going through the posts.
I have had FM for about 5-6 years but some of the things I read amazed me and I never thought they were related to FM.
I also have CF.
I have learned to live with the discomfort even while on medicine and like most of you I have good and bad days.
I was shocked when I read the post regarding the dry feet and especially the burning in the soles of my feet and toes.
It is extremely annoying.
My feet can feel very cold yet feel like the soles are on fire.
I hate it, but what I have found is if I curl and uncurl my toes several times it will help the discomfort.
Also, rubbing the pads on my feet helps alot.  

I do have a question for the group...I have noticed that my knees are starting to hurt more when I twist or turn and also my ankles feel like they are about to give away when I stand up after sitting.
I have almost fallen several times lately because of this.
Does anyone else experience this?  

I also want to say that I have a very supportive husband.
He seems to know when I am not feeling my best and doesn't push me.
I love him for that.
Thanks all and take care.

OmahaSandy 03/21/2006
Vea..I too remember early diagnosis and how frustrating and painful it was. The pain was excrutiating. After the first year, I went to see a rheumatologist and it was he who diagnosed the problem. I thought I had RA. He has been a godsend for me. Working with me we found some medicationt that helps ease the pain quite abit. I know it works because if I miss a days dose, it takes me 2-3 days to calm the pain again. If you haven't seen a specialist, I recommend you do. Good Luck and hang in there.

mymichelina 3/20/06
I attended the FAME (Fibromyalgia Awarness Means Everything) conference this past weekend in California. Info can be found on the National Fibromyalgia Asssociations website www.fmaware.org. The authors of many of the books we have read were there ie: Dr Mark Pelligrino..Dr Daniel Wallace....Dr Silverman. They and many many other doctors and researchers presented workshops both for us patients and laypersons as well as separate workshops for the hundreds of doctors attending. I am posting this to let all of you know that hundreds of doctors and researchers are working very hard to find a cause for this and of course a treatment. They said that Fibro research is an exciting field that has exploded and they are proud to be a part of it. So there is hope!

Doris 3/21/06
Hello everyone. I just been reading the posts and we are getting so many new people all the time. I think it's great. But I don't wanna lose our old friends on here either. LeeAnn that sounds so much nicer of a name,please use that honey. Richard, I don't know why your wife wouldn't understand you posting on here............my b/f knows I post and I sometimes post on the weekend when he is here and he is fine with it. We have to talk to people who really understand what we feel like inside. This is like our little "vent" time to get things out and express how we feel aand whats going on in our lives.

I feel like the Cymbalta has been doing alot of good for me. I can feel a difference. Now if I could get some relief for this bad back I have.... It seems to be getting worse everyday. Back pain is so awful. It just makes it hard to do so many things. Can barely do any housework as it is. I had to wash 4 loads of laundry yesterday. Took me half a day to wash,dry,and get them all put away. So glad its all done now. Gonna ride over to sit with Mama awhile today and visit with her some. Also gotta pick up a prescription at the pharmacy. Well take care all and have a good day. It's a little rainy here today. God bless and hugs to you all.


Richard in Tucson March 21, 2006
Good Tuesday Morning to you all:
I was reading the posts, Welcome to all the Newbies, It is great you found this place keep coming back.
Leslie: I am sorry to have left out the "s" in your name, I feel so dumb some times when I make mistakes like this.
Lisa May: A warm welcome to you, I want you to know that if they don't find tumors be glad, I had an MRI a few years ago, & they discovered my blood vessles on one side of the brain were very small, I was then concerned about anerisms clots & other such things & I realized I was stressing myself for nothing. We will get through this, I know it may take a while, but we will make it.
Vea: Welcome to the wall, there are lots of shoulders here, they may be sore shoulders but there here for you.
Judy: I would love to have that big huge, but soft cuddly group hug, welcome to you too. I am not sure if you are new to the wall, but welcome all the same. Suggestions for family the best one is, A Letter for Normals found in one of the resouce files on this wall.
Omaha Sandy: Warm welcome to you. This is the best accident you could have had. Keep coming back.
mymichelina: Thank you so much for the positive & informative info on the FAME (Fibromyalgia Awarness Means Everything) conference, was soon as I get a free moment I will lok it up. Doris: I am ambaresed to say this, I have been unfaithful on a couple of occasions in the last ten years, I addmitted this to my wife & she really dosn't trust me anymore. I am really trying to stay faithful to her, but I get so lonely when she is at work all day. I come here to the wall for the support for my FMS & to make friends. She will not understand that. I hope what ive said won't make anyone here, dislike me.

This morning I found out my Building permit is ready for pick-up down town @ the County. I will finnaly be able to finish my deck. I also have my dentist appointment at 12:00pm today, to get my permenent crown put in. I send warm gentle hugs to everyone here. Take care, I will post again ASAP. From Richard in Tucson...

Lee Ann/MI 03/21/06
Hello to all! Vera: Honey, don't feel like you are all alone. There are others who understand the pain and frustration that you are facing every day. I wish that we could all be there face to face with you but this will have to be the best that we can do right now. I am fairly new to the Wall and also to the struggle with fibro. I have only been diagnosed within the last three years and it has been a real struggle. I have found that finding others who really understand that struggle takes a little of the burden off your own shoulders. The ones around you try to understand but they just can't. I went through many years even before being diagnosed of my friends and family treating me like I was a nut case, lazy and just plain difficult to be with. Since the diagnosis they have done a little better with their understanding but there are some who still don't believe that I can help how I am feeling. In time, I hope this will change. Hang in there and remember that we all need each other to make it through this challenge we have been handed. Omaha Sandy--I have trouble with my knees especially after having sit for any length of time. My balance does seem to be effected at times also. I try to be careful when I first stand up to balance myself before I try to move forward. Thanks to all of you who took up the cause of solving the burning feet issue. It helped to know that others understand and thanks for the tips. Doris and Richard, I bow to your request and will from now on be known only as Lee Ann/MI. Hugs to all and wishes for a good day.

Diana 3/21/06
Hello everyone. Great big WELCOME to the ones who have started posting, when I first started I didn't like being called a "newbie." Call me wierd, been called worse. The burning feet topic was one of my biggest complaints when I was diagnosed. I remember saying that I wasn't even wearing shoes or hadn't been on my feet even! I agree with the moving around of the toes, it has helped mine a little. Along the pain topic- my worst is the headaches because it seems to mimic my original injury, I should say injuries because I've had multiple injurues to my neck. In fact I was reminded of one when I was a toddler, I was too small to remember but my dad says I stepped out of the car & misjudged the distance & landed with a jolt. It was so hard that my head tilted sideways with my ear to my shoulder & I couldn't lift it up for about 3 days after multiple gentle chiropractic adjustments! It was stuck to the left which is the side I have the worst pain. Imagine that! The fibro headache feels just like the last injury though that put me flat on my back for 6 months. When it hurts like that I become very afraid that it will happen again. Give it to the Lord honey!! He can do amazing things with it!
Richard- I have never had to take anything for sleep & I was desperate for relief when I went to the dr's. I had no idea I would have that type of reaction. I love the lavender idea, it's my favorite scent! I purchased a bottle of Melatonin yesterday. I've never used that either. I plan on buying a sleepy time tea as well. My husband & my doctors know never to let me take any prescription sleep aide again! As for your wife, I know where she is. My first husband was unfaithful. Unfortunately that was the last straw for me but also he was not willing to go with me to get help. Yours doesn't have to end that way if you are both committed, I will pray for you both! By the way, and I hope I'm safe in saying this, "May him who is sinless cast the first stone!" I know I have plenty of "things" in my closet that I'm not proud of, so how dare if I were to judge others. We are not here for judgment but for support, talking about it to others is a major step in the right direction. Little secrets will eat you alive! We love you! TTFN Lots of luvs & little hugs!

Alexandra Marie, 3/21/06
March 21, 2006 I'm glad to have found this place. I'm 34, and some days feel like I'm 75. It's "mostly" just the fibro, but I have several of the associated issues (hypoglycemia, Raynaud's syndrome, IBS, thyroid problems, and probably ADD), and there are times I can hardly do anything but take myself to the bathroom and back to bed. I laugh about the laundry...I'm right there in the middle of that, myself. Piles and piles of it, and my husband isn't very supportive about doing housework. I can understand his view; he works ten or twelve hours, and I sit here or read a book, I could get up off my butt and pick up the dirty sock on the floor or the empty glass. I have trouble explaining that some days I just...can't. The good side is that I'm finding some medical relief; I'm on a very low dose of Zoloft, and that, along with taking Aleve, gives me almost perfect pain control. Except for one week a month. And I'm going on birth control pills to see if that doesn't level that out and make it so I just feel mildly crappy as opposed to losing four days. I've finally got a prescription for Lunesta; now to just find the money to get it filled! I'm seriously considering trying for disability, but I don't know if it's work to no purpose and the last thing I need to do is to waste effort. The fibro is bad enough for me that my kids are living with my parents; I literally can't do the day-to-day parenting tasks for a pair of normally active boys. This is, needless to say, killing me emotionally. I'm trying to get the medication balance worked out so that my sons can come home, but it's very hard, and every day seems to be something else.

Becky 3/22/06
Hi all I`m what you all call a newbie.
I actuall found this site a long, long time ago. I then stoped login on to the internet compleatly because
my hubby thought that by reading all of the "down news" on all the sites that I was making my self worse.
Then we lost our internet due to $$ woes. but we got it back & here is my first post on this site ever!
I`m about to turn 38 on the 29th of May, I have 4 kids 17 CJ/ 15 Kendra/ 12 Micheal/ 9 Dylan. We have 6 cat`s & 1 rat !!
my hubby & I have been married for 12 yr & 6 mo. I have many of the same painful & annoying alments you all do.
Fibro, OA, I.B.S, acidrefluex, Fibrodes, Endometreious ( spelling may be wrong ).
I found out I had the Fibro about 4 yr ago, been fighting disability for about 3 yr.
My hubby is supportive to a point. He him self has been Ill, He has battled & won (By the Grace of God) two times with cancer.
I`m not sure what else to say I`ve all ready have wrote alot. the last few weeks I`ve gotten worse again.
I have slept to much, I feel like I missing my kids so much & they need me. And I`m so sick of feeling so crappy.
I can`t even keep the house some what nice and the kids fight me so much to help me & my
hubby just dosent know how to do much plus now he can`t stand for long because of all the mess he`s been through.
Life just sucks right now & I just need some help!!On 3/21/06 in the pm I went to
hug my hubby & got a sharp pain/cramp in my right upper leg & all most fell
if it werent for him supporting me I would have, thats never happen befor & it was very scary. God Bless you all I know you all hurt like I do.
I pray we all have as good of a day as we can muster & keep holding on theres got to be Hope!

Doris 3/22/06
" For All My Fibro Friends " When you are having a really bad day and you just want to forget it all Remember we are here pulling for you, your friends at the Wall. There will be times that you hurt and are in so much pain We'll be here to listen if you want to complain. We know what it's like to feel alone and to hurt so much Cause all of us here are the same kind of bunch. Yes, we agree that life hasn't been fair to us too But we are still blessed that's also true. Just think, things could really be worse for you or me We could be paralyzed or unable to speak or see. Still we can't help but feel down at times I know It's something that I myself struggle with so. It's hard for others to understand how we feel They can't see the pain that for us is so real. So my friends,take each day and survive minute by minute And thank God for all the good ones you have in it.

Lee Ann/MI 03/22/06
Good morning to my Fibro Family. I am on the downside today and was really touched by the posting by Barb. Thanks! I needed that today. I have all my life felt like an outsider and "different" because I also have chronic asthma. I know what it is like to live with a disease and to have to learn to accommodate for that disease. When I discovered that I had fibromyalgia also it was not so hard to start to "accommodate" for that also. However, this has really been hard because of the limitations that have been further put on my life. I think the weakness and the inability to care for myself is what is the most devastating. I live alone and can let some things go but the mere task of grocery shopping, doing the laundry and sometimes even the dishes seems so overwhelming and painful. I guess I am still learning to live with it because I am still embarrassed at what I can't do any more. I too, like so many others, have other issues like thyroid, high blood pressure, depression, etc, etc. I guess the main point I am trying to make is that I have learned that the best thing to do is to live minute by minute, to treasure that time and don't look at what you had and where you are going. It will only bring more frustration and feelings of despair. I hope my ramblings may have sparked some feelings of relief for others. I am in a real quandry right now. I am on unemployment, am doing much better for not working, but know that I have to go back to work because I really don't have a case for disability. It is a catch 22 type of situation in that I need to be on disability but because I was working full time at the time of my layoff I would not be considered for diability. Also, if I try for disability, I could lose my unemployment. Yikes! Please pray for me to find the strength to do what I must. Group hug to all.


Richard in Tucson March 22, 06
Good Wed.Morning To All Here & also to the ones who couldn't come to the wall.
Lee Ann/MI: how wonderful it is that you dicided to drop the other name you are too special for that name.
Diana: Newbie is just easier to type than new person to the wall, I had seen it so many times here, I thought it was cute, maybe we can come up with a better name. I was glad to read that lavender is your favorite scent! If you would like to try the pillow mist with lavender, It's called Anti-stress Pillow Mist By "Earth Therapeutics" Ive found it some times at Mervyn's if not there you might try Kohl's both stores you will find it in their lotion and soap area. I also have been having some luck with Valerian Standardized Exract by "Nature's Way" in combination with two capsels of Tylenol PM. check with your Dr. about the Tylenol. but the others are very Natural very gentle combination. Thank you for understanding me in my delema with my wife. I am really trying to not let Sin get it's grips in me, but at times life is so hard with this FMS that I just needed friends and to feel like I am worth something, that was all I was looking for, when the unfaithfulness began, Not sex or anything like that. I really appreciate your care & support as well as others on this wall.
Alexandra Marie: Warm welcome to the Fibro Wall, I know what you mean about the housework, my wife is the bread winner & she comes home most days and complains about the laundry not being put away after she folded it the night before. I struggle with it but I do hang the clothes up, I have to bring the baskets into our closet and set them one at a time on a vanity stoll with no back on it, to not over exert my body. We have a large walk-in closet wich makes this possible, but we have lots of clothes to hang up. Social Security is hard to get, but I did win it because I was persistant & I had a good Dr. that stood by me to help me win. It is worth it, because now we have income for me coming in as well as the children, each child gets a monthly check. All together it is like $1600.00 per month. In addition after six months of Disability you are eligable for Medicare Part "A" wich opens other doors for you. I have had Secure Horizans for the last three years. The premium of what ever part "B" would be I think it is like $50.00 comes out of my Disability Check and I don't worry about Medical Insurance.
Welcome Becky: You will find very uplifting people here, we have our days but we try to be positive. You have come to the right place.

Now that I am almost done with writting this novel I will leave you all with this, "I am learning to feel Joy" no matter how crappy my day is, no matter the pain I feel, no matter how little sleep I get, no matter who doesn't understand me and my limitations. I will look to our heavenly father and say. Thank you for giving me another Day to do your will. Thank you that my children are healthy, thank you that I can walk, sing, eat, & enjoy what is good in my life. I am not preaching it is just how I am feeling.
I have got to go shower and go down town. Until later Gentle Hugs, be well and have Joy in your day. Love Richard in Tucson...

Rose
Good Morning to you all. I sympathize with the struggle to get up and moving regardless of the pain and fatigue. In New England where I live, it is still cold and overcast and raw. My aching joints hate this kind of weather. Don't mind the cool temps but when a "low pressure "front moves in, my body can forcast it faster than the meteorologists on TV. My hsuband and I were just discussing the pathetic state of our finances. Fuel and electric is devouring our funds. The end of this week we will be 60 days behind in the mortgage payments. Strictly speaking, they can begin forclosure. Somebody says it all "sucks"? Yes ma'am! I get so tired of telling everyone the problems we have in hope of some patience from them. The wretched fuel company will not deliver without cash on the line. They don't care that our tank is empty as well as the bank account. I was watching an afternoon TV show about homelessness. First, it was shocking to know how many thousands of AMericans are homeless. And then, how many of them are disabled. And THEN, they pointed out how most Americans are one paycheck away from losing everything and if they are lucky enough to have the car paid for, it will become their home. Yesterday, I had to go for a psychological evaluation as part of the process of determining elegibility for Medicaid assistance. We can't afford health insurance, since we both were self-employed. I feel for the woman whose husband had cancer. Mine did too and he is a walking (disabled) miracle. The private health insurance premium went up to $800 a month so we dropped it.Anyway, it was a real eye-opener to share with this psychologist such personal information and get so acutely in touch with my feelings of despair. I started crying...I haven't done that is so long. I was embarrassed. He was a decent man, but I still felt so vulnerable when telling him about what my life used to be and what it has become. I have to trust that his "evaluation" of me will be helpful in being approved for assistance. I was calculating all our medication costs if we had to pay for all of them out of pocket.(thankful for medication assistance programs!) The cost would be as much as our mortgage payment which is well over a thousand a month. Boy, sometimes I think a tent in the woods would be better than the stress of trying to live what appears to be a normal middle class existence. I try to do a "gratitude list" each morning so as to keep a perspective on it all. So, today I am grateful that I still have a roof over my head, some oil in the tank, hot water, electricity and phone(even though they are at risk for being shut off...again!) And we have $60 left on our foodstamp card until April 5th. Whose life am I describing here???? Still can't beleive it is mine. So humbling....yet maddening at the same time. Thanks for being there you guys...Rose


Sue H, NY March 22, 2006
Hi Everyone, I haven't posted in probably 6 months, but I wanted to update you on something. With the fibro, I had extreme fatigue. I was falling asleep driving to and from work, at my desk, in my car at lunch, and not doing a thing when I got home from work. I started going to the doctors for fatigue. i had a sleep study done and was dx with "upper airway restrictive syndrome". Since then I have been fitted for a sleep, dental appliance. It's a mouth piece I wear that holds open my airway by holding out my lower jaw a bit when I sleep. This prevents me from waking a whole bunch of times an hour (similar to the concept of the CPAP machine for sleep apnea) The news is that I do feel a difference and am not as fatigued. I rarely am sleepy driving and don't need as many naps. I have a bit more energy when I get home from work, I can cook or clean up a bit. I do notice a big difference with the fatigue and have less restless leg syndrome.

I haven't noticed a difference with the other fibro symptoms, but am happy to have more energy. It's funny because now I need to adjust again, I have more energy so I have to remind my self to take it easy, or I get worn out from the fibro. I am not completely numb anymore so I actually feel stress more which is a big fibro trigger for me. So once again I have to take it easy.

But anyone who has severe fatigue with their fibro, I would recommend going to a sleep expert. At least maybe you can get some relief from that symptom. If anyone has any questions about the dental appliance, feel free to email me. Be well, Sue

Richard in Tucson 3/22/06
Hi; I am back I usually don't post more than one a day. I felt I needed to. I am so relieved to have my building permit done and my income Tax done and behind me.
Sue H,NY: Good to see your post. I am so glad for you that you are getting such a good treatment for something that is so treatable as "upper airway restrictive syndrome". I myself have had some success with CPAP Treatment for my Sleep Apnea. I still think there is more to my sleep problems though. Maybe I could benefit from the type of treatment you are using. Let us know more if you can here on the wall, if not you can e-mail me and I'll pass it on here at the wall.
Anyway bye for now take care from Richard in Tucson....