Fibromyalgia

[mimilizz]

i have had it for quite a while and i hurt all over and am sick with one thing or another dose any one else here have it and what are some of the yhing you have wrong withyou.and what to do for what kind of treatment .i just take over theecounterstuff and sleep when i need to .

[luvcub]

I think I have this,Im in pain all day long,I spoke to my doctor about this,he didnt seem to know how to test me,will ask again when I go back in to see him.

[Lild]

There are pressure points on your body that will be sensitive to the touch...
I am only 24 and my Dc diagnosed me with it.
Google it. There is a lot of info and symptoms...pretty much they just make you do a checklist and then the pressure point test...also, everything else is ruled out luvcub before they say you have it...

[ElleGee]

I have constant neck pain, headaches, sinus problems, ibs, neurological tingling in my arms and hands.. cracking joints..and just feeling plain awful...

[Pepsi4me]

My joints seem to be constantly sore lately. I am hearing more & more about Fibromyalgia.

[ahippiechic]

I have constant neck pain, headaches, sinus problems, ibs, neurological tingling in my arms and hands.. cracking joints..and just feeling plain awful...

Same here. And tired! I was diagnosed with it a few months ago but my Dr suspected it way before then. He just wanted to rule out it being anything else. Right now, the neck and shoulder pain is bothering me a lot.

He gave me new exercises to do that don't aggrieve it, also diet changes. (just eating healthier in general) I take Motrin for the pain and sometimes Tramdol. We discussed trying Lyrica but I'd rather not if I can help it. It isn't too bad at the moment. I get a B-12 injection every 2 weeks also, that helps with the tiredness and having no energy. My Dr thinks my last round of chemo is what triggered the fibro, because after that is when I started having most of the symptoms.

I have really good days and sometimes some bad ones.

[ElleGee]

Lyrica NEVER helped me..It made everything worse.I'm serious I thought i was going to die..All I am on is Amitrityline and klonopin.. and excedrine extra strength for my headaches, but if i am in too much pain it's percoset time.

I used to give myself panic attacks because I'd get a new pain or forget what a pain felt like the last time and my head starts with 'omg what if it's not fibro what if I am having a heart attack' (from the costochondritis).

I get good days and bad as well and there are days when I sleep all day..

[newwiccan]

I was diagnosed in early 2006. I was seeing my regular doctor but he said he thought it was fibro but he wasn't qualified to diagnose it so he sent me to a Rheumatologist. He didn't believe in any type of treatment for it other than a positive attitude and Tylenol if I felt I needed it. I only have noticeable symptoms when I'm extremely stressed which is usually only when Kevin is gone for extended periods.

[ahippiechic]

I've never had a panic attack I don't think, but I do get to thinking like that sometimes.

I have a friend who has it also and the Lyrica has seemed to help her, but her symptoms were much worse than mine. Part of it is that I have taken SO MUCH stuff with the chemo and all, that I hate taking any kind of medicine. I figure if I can control it pretty well with what I'm doing, I'll stick with it.

[ElleGee]

My joints seem to be constantly sore lately. I am hearing more & more about Fibromyalgia.

Fibromyalgia is a LOT more than just sore joints. A hell of a lot more.

[hblueeyes]

Doctors used to think Ebstein Barr was not real either but now they can detect it.

Me

[msmom79]

Doctors used to think Ebstein Barr was not real either but now they can detect it.

Me

my younger sister has fibro and my older sister and myself were diagnosed (sp)with ebstein barr.my younger sister has lots of pain,all over her body-i feel so sorry for her-but e.barr can give you pain also and make you extremely tired,and not want to eat or anything.i am glad that doctors are figuring this stuff out.

[nightrider127]

I have some cousins with this, one has it especially bad. He says he hurts like he has been run over with a truck. He can't do much of anything. When we try to chat via computer, he can't type so we have to use a microphone.

Last I heard, he was going to try Aquatheraphy. I don't know what he takes for the pain.

I feel sorry for people with this condition. A lot of people accuse them of just trying to get attention or just being too lazy to work.

[IthinkNOT!]

My joints seem to be constantly sore lately. I am hearing more & more about Fibromyalgia.
As someone else has said fibro is alot more than sore joints, alot more!

[IthinkNOT!]

As someone else has said fibro is alot more than sore joints, alot more!
My Mom has fibro, was diagnosed in 2000. Her first symptom was an ache in her shoulder that never went away. So many doctors told her that they couldn't find anything wrong with her and that she was faking. After a trip to the ER she was referred to another Dr, and she almost didnt go because of the others telling her that she was faking. This was the Dr who finally diagnosed her by using the pressure points. He explained that there are x amount of pressure spots and you have to be sensitive in most of them before you are considered to have fibro. And she was sensitive in all the spots. The pain for her is all over with the part which is worst varying. Somedays her arms hurt more, somedays it's her legs, back, etc. Drugs she has taken: Alleve (still a staple), Amytripiline, Zoloft, flexeril, a few others that I can't think of right now, and finally lyrica. The lyrica is helping more than anything else right now. With that she is able to function more on a daily basis. She still works, is on light duty at wal-mart. Can't lift her arms over her head repeatedly, limps when she walks and can't lift over 15 pounds. She has tingling in her limbs, her hands fall asleep at strange times. She also experiences a "fibro fog". Thats what we nicknamed it. She can be talking and try to say one thing and something else come out, forgetful and sometimes confused. The lyrica has helped with all of the above. She used to have a "bad day" everyday, now she has them maybe once a month.

[Pepsi4me]

As someone else has said fibro is alot more than sore joints, alot more!



I never said I had it/never said my sore joints could be it. I just stated my joints were sore...good god.

[IthinkNOT!]

I never said I had it/never said my sore joints could be it. I just stated my joints were sore...good god.
As someone who has dealt with someone with this on a daily basis it really bothers me to hear someone say "well my joints are sore it must be fibro". Because it is so much more than that. You will never understand until you have been there.

[Pepsi4me]

As someone who has dealt with someone with this on a daily basis it really bothers me to hear someone say "well my joints are sore it must be fibro". Because it is so much more than that. You will never understand until you have been there.


I never said anywhere that I thought it was fibro.





I will not argue with you anymore. This is the OP's thread & I will not participate in another arguement with you thus spoiling there thread.

Have a wonderful life.

[IthinkNOT!]

Then why did you come put your 2 cents in a thread if you had nothing to contribute??? What exactly do your sore joints have to do with the convo if you are not implying that you may have it? And I was not arguing with you, I was simply stating as someone else did that fibro was way more than sore joints. I notice you didn't go back and pick them to argue with, you picked me. And now you will not argue anymore??? Can I get that in writting? Because from what I have seen of you so far, you will be back, because you have to have the last word in everything. SOOOOOOOOOOOOOOOOO Argue this: :thefinger:


And: as for you edited part, when has spoiling a thread ever bothered you before???

[ahippiechic]

Before you all get going good, stop now. Or you'll not post. I am sick of this crap in almost every post I go into.

[IthinkNOT!]

I am sorry Hippie. I really wasn't trying to be argumentative until my last post. And in that one I will admit that I was. But as I have said it bothers me to hear ppl talk about sore joints and fibro, when thats not what it is about. And when I posted that it bothered me, I wasn't trying to argue, I was trying to explain. I'm sorry if it came accross as argumentative.

[evrita]

Oh I have sore joint and my RA dr told me I have fibro but I also am tired and have to stop and think about what I was going to say and my whole body hurts and my sinuses and lungs and well I could go on. I had the pressure point test and i flew thru the roof. My test are coming back very high imflamation levels and right now they have me on hydroxychloroquine because stuff like alive and the NASDA will make the polyps (sp) in my nose worse. I am waiting on one more test and I pray it comes back negitive.

[msmom79]

i feel so sorry for you ladies-my baby sister cries with this affliction so much,she says sometimes she hurts so bad she cant do simple things like pull weeds,out of the flower beds-she swells up in her knee's,elbows,she says even her toes hurt her,i so wish there was something to make it just go away for all of you,thinking of you all:grouphug

[Army-Mom]

I have fibro and alot more..but I found this an interesting read.

LETTER TO NORMALS
by Claudia Marek
Here is my letter to Normals. You are all welcome to use it, either as is, or as a basis for writing your own. Obviously not everyone will be interested enough to read through it, but for those who will, I hope it helps. Remember that you have a responsibility to tell those close to you what is wrong and communicate as clearly as you can how you feel and what you need. The best time to do that is when you are not upset!

Fibromyalgia isn't all in my head, and it isn't contagious. It doesn't turn into anything serious and nobody ever died from fibromyalgia thought they might have wished they could on really awful days. I can't control how often I feel good or how often I feel terrible. If you want to read articles or books about fibromyalgia I can show you some that I think are good. If you just want to learn as we go along, that's fine too. This is definitely going to be a process. The first step is for you to believe that there is an illness called fibromyalgia and that I have it. This may sound simple, but when you hear about some of the symptoms I don't want you to think I'm making it up.

Fibromyalgia is a high maintenance condition with lots and lots of different kinds of symptoms. There's no way to just take a pill to make it go away, even for a little while. Sometimes a certain medication can make some of my symptoms more bearable. That's about the best I can hope for. Sometimes I can take a lot of medication and still not feel any better. That's just the way it goes.

There's no cure for fibromyalgia and it won't go away. If I am functioning normally, I am having a good day. This doesn't mean I'm getting better because I suffer from chronic pain and fatigue for which there is no cure. I can have good days, weeks or even months. But a good morning can suddenly turn into a terrible afternoon. I get a feeling like someone has pulled out a plug and all my energy has just run out of my body. I might get more irritable before these flares, and suddenly get more sensitive to noise or just collapse from deadening fatigue. Othertimes there may be no warning, I may just suddenly feel awful. I can't warn you when this is likely to happen because there isn't any way for me to know. Sometimes this is a real spoiler and I'm sorry.

Fibromyalgics have a different kind of pain that is hard to treat. It is not caused by inflammation like an injury. It is not a constant ache in one place like a broken bone. It moves around my body daily and hourly and changes in severity and type. Sometimes it is dull and sometimes it is cramping or prickly. Sometimes it's jabbing and excruciating. If Eskimos have a hundred words for snow, fibromyalgics should have them for pain. Sometimes I just hurt all over.

Besides pain we have muscle stiffness which is worse in the morning. Sometimes when I get up out of a chair I feel like I am ninety years old. I may ask you to pull me up. I'm creaky and I'm klutzy. I trip over things no one can see, and I bump into the person I am walking with and I drop things and spill things because my fingers are stiff and my coordination is off. I just don't seem to connect the way I should. Hand-eye, foot-eye coordination, it's all off. I walk slowly up and down stairs because I'm stiff and I'm afraid I might fall.

Because I feel bad most of the time I am always pushing myself, and sometimes I push myself too hard. When I do this, I pay the price. Sometimes I can summon the strength to do something special but I will usually have to rest for a few days because my body can only make so much energy. I pay a big price for overdoing it, but sometimes I have to. I know it's hard for you to understand why I can do one thing and not another. It's important for you to believe me, and trust me about this. My limitations, like my pain and my other symptoms are invisible, but they are there.

Another symptom I have is problems with memory and concentration which is called fibrofog. Short-term memory is the worst! I am constantly looking for things which I have no idea where I put, I walk into rooms and have no idea why. Casualties are my keys which are always lost, my list of errands, which I write up and leave on the counter when I go out. Even if I put notes around to remind myself of important things, I'm still liable to forget them. Don't worry, this is normal for fibromyalgics. Most of us are frightened that we are getting Alzheimer's.

I mentioned my sensitivities earlier and I need to talk about them again. It's more like an intolerance to everything. To noise, especially certain noises like the television or shrill noises. To smells like fish or some chemicals, or fragrances or perfume. I also have a problem with heat and cold. It sounds like I'm never happy but that isn't it. These things make me physically ill. They stress me out and make my pain worse and I get exhausted. Sometimes I just need to get away from something, I just don't know how to say it. I know that sometimes this means I will have to go outside, or out to the car,or home to sit alone and that's really all right. Sometimes when I feel lousy I just want to be by myself. When I'm like this there's nothing you can do to make me feel better, so it's just better to let me be.

I have problems sleeping. Sometimes I get really restless and wake up and can't get back to sleep. Other times I fall into bed and sleep for fourteen hours. I'm sure that's confusing to be around, and I know there are times when my tossing and turning and getting up and down to go to the bathroom disturbs you. We can talk about solutions to this.

All these symptoms and the chemicals in my brain can me depressed as you'd imagine. I get angry and frustrated and I have mood swings. Sometimes I know I'm being unreasonable but I can't admit it. Sometimes I just want to pull the covers over my head and stay in bed. These emotions are all very strong and powerful. I know this is a very hard thing about being with me. Every time you put up with me when I'm in one of my moods, secretly I'm grateful. I can't always admit it at the time, but I'm admitting it now.

I have other symptoms like irritable bowel and pelvic pain that will take their toll on our intimacies. Some of these symptoms are embarrassing and hard to talk about but I promise to try. I hope that you will have the patience to see me through these things. It's very hard for me too because I love you and I want to be with you, and it makes everything worse when you are upset and tired of dealing with all my problems. I have made a promise to myself and now I am making it to you: I will set aside time for us to be close. During that time we will not talk about my illness. We both need time to get away from its demands. Though I may not always show it I love you a million times more for standing by me. Having to slow down physically and having to get rid of unnecessary stresses will make our relationship stronger.

www.fibromyalgiatreatment.com

[Army-Mom]

These are the things that I would like you to understand about me before you judge me...

Please understand that being sick doesn't mean I'm not still a human being. I have to spend most of my day flat on my back in bed and I might not seem like great company, but I'm still me stuck inside this body. I still worry about school and work and my family and friends, and most of the time I'd still like to hear you talk about yours too.

Please understand the difference between "happy" and "healthy". When you've got the flu you probably feel miserable with it, but I've been sick for years. I can't be miserable all the time, in fact I work hard at not being miserable. So if you're talking to me and I sound happy, it means I'm happy. That's all. I may be tired. I may be in pain. I may be sicker that ever. Please, don't say, "Oh, you're sounding better!". I am not sounding better, I am sounding happy. If you want to comment on that, you're welcome.

Please understand that being able to stand up for five minutes, doesn't necessarily mean that I can stand up for ten minutes, or an hour. It's quite likely that doing that five minutes has exhausted my resources and I'll need to recover - imagine an athlete after a race. They couldn't repeat that feat right away either. With a lot of diseases you're either paralyzed or you can move. With this one it gets more confusing.

Please repeat the above paragraph substituting, "sitting up", "walking", "thinking", "being sociable" and so on ... it applies to everything. That's what a fatigue-based illness does to you.

Please understand that chronic illnesses are variable. It's quite possible (for me, it's common) that one day I am able to walk to the park and back, while the next day I'll have trouble getting to the kitchen. Please don't attack me when I'm ill by saying, "But you did it before!". If you want me to do something, ask if I can and I'll tell you. In a similar vein, I may need to cancel an invitation at the last minute, if this happens please don't take it personally.

Please understand that "getting out and doing things" does not make me feel better, and can often make me seriously worse. Fibromyalgia may cause secondary depression (wouldn't you get depressed if you were stuck in bed for years on end!?) but it is not caused by depression. Telling me that I need some fresh air and exercise is not appreciated and not correct - if I could do it, I would.

Please understand that if I say I have to sit down/lie down/take these pills now, that I do have to do it right now - it can't be put off or forgotten just because I'm doing something. Fibromyalgia does not forgive.

Please understand that I can't spend all of my energy trying to get well. With a short-term illness like the flu, you can afford to put life on hold for a week or two while you get well. But part of having a chronic illness is coming to the realization that you have to spend some energy on having a life now. This doesn't mean I'm not trying to get better. It doesn't mean I've given up. It's just how life is when you're dealing with a chronic illness.

If you want to suggest a cure to me, please don't. It's not because I don't appreciate the thought, and it's not because I don't want to get well. It's because I have had almost every single one of my friends suggest one at one point or another. At first I tried them all, but then I realized that I was using up so much energy trying things that I was making myself sicker, not better. If there was something that cured, or even helped, all people with Fibro then we'd know about it. This is not a drug-company conspiracy, there is worldwide networking (both on and off the Internet) between people with Fibro, if something worked we would KNOW.

If after reading that, you still want to suggest a cure, then do it, preferably in writing, but don't expect me to rush out and try it. If I haven't had it suggested before, I'll take what you said and discuss it with my doctor.

Please understand that getting better from an illness like this can be very slow. People with Fibro have so many systems in their bodies out of equilibrium, and functioning wrongly, that it may take a long time to sort everything out.

I depend on you - people who are not sick - for many things.

But most importantly, I need you to understand me.

[Unicornmom77]

This thread brings tears to my eyes. I am not ready to share my story about Firbro, I use online resources a lot and I am learning to manage and watch for triggers. I watched my Mom deteriorate with Fibro years ago before many ppl knew about it. She takes Amatriptlene (SP) and other meds to manage. Mostly she just does things in little steps instead of all at once. Like she will do the dishes and then rest, then wipe the table, just in small chunks.

[Army-Mom]

This thread brings tears to my eyes. I am not ready to share my story about Firbro, I use online resources a lot and I am learning to manage and watch for triggers. I watched my Mom deteriorate with Fibro years ago before many ppl knew about it. She takes Amatriptlene (SP) and other meds to manage. Mostly she just does things in little steps instead of all at once. Like she will do the dishes and then rest, then wipe the table, just in small chunks.

That is what I do..I do somethng then sit down then do something then sit down..takes me all day long to do something..sending hugs to you.

[msmom79]

my sister gets down on the floor to do some dusting on a table,then cant get back up,she has to yell for her hubby to help her get up-she is younger then me,so i cry often for her,i hate to see her going through this,after seeing her so full of life,and now this-oh for a cure to help you all

[SLance68]

I wanted to thank the OP and others that have listed what this disease is really about. I had never heard of it until a year or so ago and I am thankful that I don't have it. I can only hope that those of you with this have more "good days" than the really bad days. Sending you all some very soft hugs.

[galeane29]

My mother has it. Well, she says she has it, I think she is a hypochondriac. You even think of an ache or pain, she automatically has it.

[xtrememom]

I was diagnosed with fibro 7 yrs ago along with lupus and rheumatoid arthritis and let me tell you it ain't not picnic having all 3. I knew I had fibro probably 10 maybe even 15 yrs ago but I got the whole its all in your head your getting older and gee your working 2-3 jobs no wonder your tired and hurt all over crap from the Doctors. I saw what was supposed to be one of the best Rheumatologists in the area until 2006 when I got tired of waiting for hours for my appointments and switched to another one who took me off the drugs that were making me worse, he basically had me doped up like a zombie. I dont take pain killers except on really bad days, I am on lyrica and it has did some good although I have recently started with some numbness and tingling in my hands and feet that I have heard others get once they have increased the dose and been on it long term, trust me if you could see how I am typing and keep having to backspace to correct you woudl realize how hard even that is now, I used to have a voice program but it doesnt like XP or Vista very much. Its a horrible ailment and some recent studies show that it could be caused by epstein barr virus of which I have sitting dormant in my system and it will come out and wallop me sometimes really bad and I aint worth beans then. I hate this disease just like I hate lupus, I cant live my life how I want to because I have to live it around the disease and adjust it for the disease or the medications effects and it plain sucks and I cant always get people to understand I dont want to go out it wont help me feel better I feel better on my couch or in my recliner, dont force something on me because it isnt helping me one bit. I take each good day as I get it as a blessing each bad day as a curse and go on with life sometimes hating it so much I wish I would not wake up but there is onviously a reason I keep waking up I have a 9 yr old who has known nothing but a sick mom since birth (kidney disease too) I hate he has to see some of what he has seen me almost dying of a blood clot in my lungs and numerous hospitalizations for the various medical problems, but he does well and excels in school. I will continue to hate these diseases and continue to try to get people to understand their is no cure and may never be a cure.

[Dorthy]

I also have fibromyalgia. It is caused by an injury/trama to your body. Stress can aggravate it. My PT explained it to me as a person has spindles on their muscles that are straight, but a person with fibromyalgia, the spindles wrap around the muscle. Fibro is more than an ache or pain. It involves your muscles, ligaments, and tendons. The joint pain is where the ligaments and tendons come in. I started with fibro in 1996 after a nurse messed up during a blood drawing. I have had many fibro flairs lasting months and months. Then I have had times where it has gone into remission, only to come back out in full force again, I can sympathize with all of you, it is not pretty to have this. The best advice I can give is to go walking, I know you may be in excruciating pain, but walking is the best thing you can do for fibromyalgia. Even if it is only for a few minutes at first. Walking gets the endorphins, and natural pain relievers going. I find that if I walk for 15-20 minutes the pain subsides, and stays away for hours. I know it may be hard, especially on a real bad day, but force yourself. You will be glad you did.