Fibromyalgia Support Group
You're not alone in your pain. Fibromyalgia is a condition that can be difficult to diagnose and manage. If you're trying to cope with pain throughout your body, sleep problems, general fatigue, or other common fibromyalgia symptoms, you're in the right place. The community is here for you to talk about therapies and share your challenges.
A day where you can almost forget that you have FMS? I know that I have some type of pain every day. But occasionally, I will have a day where maybe I just have a headache, or I just have pain in one hip and not my knees & ankles & back.
I hear some people talking about being in horrible pain from just being touched, or having the bedsheets hurt them, and I haven't experienced that level of pain.
Don't get me wrong, most days I hurt all day long, I'm on the verge of tears quite often. But then a decent day will sneak up on me, and here's the weird part...I start wondering if I really do have FMS?? I suppose part of that comes from going without a diagnosis for so many years; it's hard to believe that just maybe they've finally figured out what is wrong with me. That tiny part of me that doubts myself, and thinks there will never be a diagnosis or cure, because just maybe there ISN'T anything wrong with me, maybe I overreact to everything & exaggerate my pain, that maybe the way I feel most days really is the way most people feel. Does that sound crazy?
I suppose part of this thinking is because this is a new diagnosis for me, and I'm still adjusting to it. Also, when my dr said he thought it was fibro, he didn't go into alot of detail with me about what to expect or how we would treat it.
I hear some people talking though about being on disability & being in horrible pain all the time, and it makes me wonder if maybe this isn't FMS. Of course, nobody really knows the level of pain other people experience; maybe a 10 on the pain scale for one person is only a 6 for someone else. I guess I'm just trying to figure everything out still. I know I'm lucky that I'm not disabled most days, although there have been days where I would not be able to climb stairs to save my life. Part of me hopes I do have fibro, just to finally have a diagnosis & know it's not all in my head. Of course, the other part of me is screaming NO!, I don't want something that can be this painful, and there be no cure in sight, I don't want to be in pain the rest of my life.
Just my ramblings, and wondering if I'm alone or other people doubt themselves or question their diagnosis, etc.
I hear some people talking about being in horrible pain from just being touched, or having the bedsheets hurt them, and I haven't experienced that level of pain.
Don't get me wrong, most days I hurt all day long, I'm on the verge of tears quite often. But then a decent day will sneak up on me, and here's the weird part...I start wondering if I really do have FMS?? I suppose part of that comes from going without a diagnosis for so many years; it's hard to believe that just maybe they've finally figured out what is wrong with me. That tiny part of me that doubts myself, and thinks there will never be a diagnosis or cure, because just maybe there ISN'T anything wrong with me, maybe I overreact to everything & exaggerate my pain, that maybe the way I feel most days really is the way most people feel. Does that sound crazy?
I suppose part of this thinking is because this is a new diagnosis for me, and I'm still adjusting to it. Also, when my dr said he thought it was fibro, he didn't go into alot of detail with me about what to expect or how we would treat it.
I hear some people talking though about being on disability & being in horrible pain all the time, and it makes me wonder if maybe this isn't FMS. Of course, nobody really knows the level of pain other people experience; maybe a 10 on the pain scale for one person is only a 6 for someone else. I guess I'm just trying to figure everything out still. I know I'm lucky that I'm not disabled most days, although there have been days where I would not be able to climb stairs to save my life. Part of me hopes I do have fibro, just to finally have a diagnosis & know it's not all in my head. Of course, the other part of me is screaming NO!, I don't want something that can be this painful, and there be no cure in sight, I don't want to be in pain the rest of my life.
Just my ramblings, and wondering if I'm alone or other people doubt themselves or question their diagnosis, etc.
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Hi all! This is for those of you that have or have had the same neurologist for 4 years or more. I have been with mine now since 2009. He is one of the best movement disorder secialists in the midwest. I know he is extremely busy on the lecture circuit now and in fact not taking new patients there is a huge waiting list for him. BUT.... I feel like my visits are not what they use to be. He...
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theatre and I are there already. I'm having a very berry tea with crackers, cheese and cherry tomatoes and she's having a joint with some beer and we're both on really comfy recliners on thick pile carpet. we need some help with the decor if anyone is around??
so yeah i will say those days do come even though they are few and far between.
trish
It took me 22+ years to get diagnosed. I didn't even really think anything was wrong other than being a wimp who couldn't get a grip for 16.5 years. Once I started pursuing a diagnosis, it took 7.25 years to have them put a name on it, and only because I knew that's what I had and asked to be evaluated for Fibro.
I'm one of my journal entries from yesterday I discuss all the wonderful advice I was given by clueless doctors and family.
With pain, one of our problems is that so much of it is really chronic myofascial pain syndrome. Since our body doesn't get enough O2, lactic acid builds up in our muscles making us prone to myofascial trigger points, knots in the muscles that refer pain to other parts of the body. By breaking up the trigger point, the pain subsides.
Check out triggerpointbook.com for an overview of the subject. I use this book as a guide along with a two-headed percussion massage and have been able to control my pain 90% of the time. It's a lot of work, but I'm not on pain meds.
I've spent countless hours researching Fibro and am using my journal to discuss things I've learned. Check it out if you have a chance.
take care.
elavaney
I am a 54 year old mind traped in a 100 year old body... thats what I feel. Especially this past month.
It made me quite angry and cynical, I was like perhaps my grandfather is not really dead either, maybe his heart disease is not real either, I should end the joke and get him out of the cemetary lot.
I am sorry, I just get real pissed off when you are treated like you are a liar, and your not really having issues.
How in the HELL can you say its not a medical condition? They will do anything to not pay you, which WE paid into when the gvt stole all of that money out of our paychecks. Sorry yall, I just hate dealing with scandalous people.
I am relieved to have a diagnosies, But don't want this either! If I can do anything to get rid of fibro, I would. I worked all my life and raised 2 children and now can hardly make it to stand and put dishes in the dish washer. Oh. sorry for babbbling onnnn.
When I am reading through posts about people using walkers or canes and I think like you, maybe THAT is fibro and there really isnt anything wrong with ME because at least I can walk without having to use a cane. However, I have only had my dx of fibro since August 2006. It just seems to me like I woke up one morning feeling like I had the flu and the aches and hurts never went away.
I do have days when I dont hurt REALLY badly, but the pain never goes away and the stiffness is there everytime I stand up! I find I am sitting more in my classroom and not up walking around as much most days.
I will think of this post and try to be a lot more thankful for the days when I dont hurt as badly as others!
Rhonda