Fibromyalgia

[Leah]

So I'm not sure if I've mentioned this to anyone here or not...?
Back in the fall, as soon as the weather started to get cold, I started having issues with my left hand. It would burn, as though someone was holding a flat iron to the top of it. And it would swell up, so much so that I had to stop wearing my rings. The tops of my feet would hurt, feel sore, I can't really describe it. Anyway, at first I thought carpal tunnel in my hand and who knew about the feet. Except that my left hand is not my "mouse" hand and it's not the hand that I do everything with (I'm right-handed). I've also had really sore shoulders and neck, my knees ache and I'm exhausted, like all the time. I'm not sleeping well and even when I medicate myself, I'm still tired. Like wiped. And constant headaches, the kind that I've resorted to codeine to help with and even sometimes that doesn't help. I've also had these weird episodes like my skin is over sensitive. Not rashes or anything, but sensitive to touch.

Now, I'm overweight, not grossly, but still. I'm carrying about 30-40lbs. more than I should. So I kind of attributed all my aches and ailments to that.

However, my family Dr. referred me to a rheumatologist for further testing.
My appointment was this past Tuesday. He thinks it's fibromyalgia. I'm not entirely sure what this means exactly. My Mom said that it's similar to Lupus (she has Lupus), but it affects everything. Kind of like my body is allergic to itself.

I'm going to have to do some research on my own and figure it out, but I am wondering if anyone here has or knows someone that has this? What's it like? Is it constant or are there flare-ups (kind of like my Mom's Lupus)?

In the meantime...guess who joined WW on Wednesday? lol

[marlathrall]

They thought my mom had fibromyalgia because she had lots of aches and pains and was sore all the time. Lupus runs in our family and they thought she might have that or MS, too.

Finally, they thought to check her thyroid and that's what was wrong. She finally got her medicine all regulated and the aches and pains are gone. This might not be your problem, but it wouldn't hurt to get it checked, just incase.

Good luck. Pain is a terrible thing.

[kim21673]

I have been living with it for YEARS. For me...it's major flare ups....some days are great, some weeks are great and then BAM...I am in constant pain for a while. It has mostly affected my elbows, legs/hips and back/neck. I know someone who has it and she lives with constant pain.

Fibromyalgia is normally brought on my some sort of trama to the body...like a car accident. I was in a really bad roller blading accident back in 1998 and have never been the same. Flare ups can be caused by a variety of things like stress, lack of sleep, etc....

I get very painful burning in my back (like someone removed my spine, lit a match and sewed me back together) and in my hips....to the point I can't sleep.

If I am having a flare up, I can't put any pressure on my elbows...they hurt so bad.

My neck pretty much always hurts though and I have very frequent headaches.

I also suffer from Restless Leg...pretty much all the time...all day long....it sucks!!!



Good luck!!! I hope you find relief!!! Congrats on joining WW too!!! YAY!!!

[Leah]

Originally Posted by kim21673

I get very painful burning in my back (like someone removed my spine, lit a match and sewed me back together) and in my hips....to the point I can't sleep.

This is EXACTLY how it feels - in my neck and my hand too!

Hmmm....I rolled our truck back in 2009, but wasn't seriously injured or anything? Oh and we were in an accident back in 2007 as well, but again, no serious injuries, not even whiplash. That's the only major incidents that I can think of. The severe burning just started this fall, in my hands, feet and my neck has been off and on for years, but has gradually gotten worse over the past year. My hips, particularly the left, has been bothering me for as long as I've been an adult. lol

[MandaT]

My mom has had it for years. She has all sorts of issues from it. I know if she's stressed, hasn't been sleeping well or it's cold, it's way worse. If she does a lot of activity it's also worse.

She was in a couple different severe accidents between 1990-1995. She also has to take thyroid medication (hers doesn't function at all).

I hope that you can find something that works for you. :

[Sherri Tierney]

I don't know a lot about fibro but I do know my aunt used to suffer from it. She went to a three month long clinic where they did all sorts of exercises with her and different treatments and she came home cured. She went from constant pain to the point of not being able to work or clean house or do much for herself to no pain at all. Its amazing!

[jk703]

I was told I have it in my knees, and in my back... though I'm not totally convinced. For me, I have flare ups depending on the weather, and stress. Lately, my neck has been giving me trouble. It is not fun.

For my knees, I did some physical therapy, and then I lost a bunch of weight. A lot of the pain was minimal for a long time.... and then when it was painful, it was mostly flares from stress and weather related, that I noticed. It flared up when I was pregnant as well, which was funny to me... cause my other ailments all were better when pregnant!) .

With my knees, I cannot get into a squat position, or in and out of a car, or even up and down stairs without some pain. When my weight is down, I notice that the pain is much less... which helps keep me in check. I'm still about 10 pounds more than I'd like, but so far, keeping it consistent helps. My pain is a constant low key vibe, and then when a specific action bothers it at random times, it is like a slow burn that doesn't stop, and soreness. Then on top of that, mine seem to make my muscles feel tired, even though I'm not.

I hope you find some relief. Good Luck to you!

[joelsgirl]

Sorry, Leah. : ( My dad has it, but he's been able to manage it a lot with diet and exercise.

[Melissa Bennett]

I was told many years ago that I had it. I feel that it is a label they have given something they cannot for the life of them figure out at all. I think they are still unsure of what causes it and what they can do exactly for it. I have just learned to live through the flare ups and just recently was told that I have restless leg syndrome, which I kind of figured I did. I have a hard time sleeping at night because of the pain in my legs and have to always move them trying to relieve the pain. I do notice when I go through long spells of crappy sleep and let my iron levels drop that the fibro flares up for me.

[tsbegley]

In all honesty, I would seek a second opinion from another rheumatologist. A thorough rheumatology visit (especially given your family history of auto-immune disorders) would usually lead the rheumatologist to run some tests at least.

Like Melissa mentioned above, it is sometimes given when they do not know what else is wrong. Fibromyalgia is considered a diagnosis of exclusion, meaning that they have ruled out everything else that could have been wrong before they SHOULD give the diagnosis. There are some pressure point tests that assist them with the diagnosis but your bloodwork and test results for other conditions should come back clean before you are 100% given the diagnosis of fibromyalgia.

I'm also interested in what recommendations the rheum. gave you in terms of treatment options. Some more holistic-minded physicians and treatment providers claim a link between wheat sensitivities (or gluten intolerance) to fibromyalgia. Additionally, while they will typically prescribe medication to assist with the pain, almost always exercise is prescribed rather than becoming more sedentary.

If you have not done so already, I would recommend keeping a detailed activity and food log for a week. Write down each hour what you do and what you eat and then record when your pain starts to flare and where the pain is. It might help you find some patterns or triggers that you can avoid.

Best of luck!

[julifish]

I've wondered myself if I might have fibromyalgia as I experience pain throughout my body all day off and on. I'm constantly tired and feel like taking a nap. I've chalked it up to being overweight and I've been afraid to say anything to my doc. I'll be interested to see what the rheumo says for you. A second opinion is always a good idea if you can swing it with your insurance.

I've heard that some of the anti-depressent meds help with Fibromyalgia too.

[Kiki]

I was diagnosed with it last summer, after suffering from flare ups of pain not related to any illness for a long time. But last year I got hit with the fatigue, like my shoulders are too tired to lift my arms, or my ankles feeling like they are going to break from just standing.

I do hope that the rheumy sent you for bloodwork at the very least because rheumatoid arthritis, lupus and other illnesses have markers they can check for in the blood work. They ruled that out with me and have me on two medications - one for sleep (fibro patients don't get into the deepest level of REM and so wake up tired and usually sore) and one for pain.

Honestly I didn't understand it at first but had to come to terms with it. I'm still figuring out how to live with it without flaring up again to the point of not being able to work.

I hope you get the answers you are looking for and find the support you need.

[Kiki]

Originally Posted by julifish

I've wondered myself if I might have fibromyalgia as I experience pain throughout my body all day off and on. I'm constantly tired and feel like taking a nap. I've chalked it up to being overweight and I've been afraid to say anything to my doc. I'll be interested to see what the rheumo says for you. A second opinion is always a good idea if you can swing it with your insurance.

I've heard that some of the anti-depressent meds help with Fibromyalgia too.

Julie, I'm on one of the anti-depressants (low dose) to help with sleep. Often a low dose is prescribed to help that way, since fibro patients don't usually get a good night's sleep.

[calvinawalsh]

I hope you get the answers you need, Leah. Fibromyalgia is a pain in the neck (quite literally I've had it for over 25 years and have suffered through all kinds of weird aches and pains and fatigue. For the first 5 years I just lived with it and then a new doctor prescribed Rx for me. Thankfully it helped a lot. I also take an RX to sleep-I wouldn't sleep otherwise. A couple of years ago I found this website Fibromyalgia Treatment Center to be the most informative and helpful. I've been following their protocol for about 3 years now and have seen a change for the better. I still have fibro and fatigue but have a better understanding of my strengths and weaknesses. Hope this helps.
Calvina

[kendallt]

I don't have any experience with this particular health issue but just wanted to say hang in there, and I'm thinking of you!

[Leah]

Thanks ladies. Yes, the Dr. did send me for blood work and xrays. He said he would call if there was anything abnormal. I have started keeping a journal, of exhaustion, soreness, food, etc.

[neenee]

I have it Leah. I was diagnosed in 2009. I swear I have more tests than I can even remember, seen 10 or more specialists, tried tons of medications, etc. I still to this day have a hard time accepting my diagnosis because I am the type of person who wants to see the issue on xrays or in concrete results. However, I accept that it is the best answer I have and try to move forward as best I can. I have great days, good days, bad days, horrible days and horrible weeks/months. I typically have some kind of pain from it every single day but, I have learned to live with it. It is amazing what we just learn to accept as normal because we are tired of fighting it. I just had my worst flare ever after we sent our daughter off to Hawaii for her USAF assignment, then went on a 10 day vacation, then I went to visit my Mom, etc. I was in so much pain all of the time. Over exerting, stress, anxiety all makes mine worse. I have learned through the years finally how to manage mine with my daily routine. I still always get thrown for a curve though if something abnormal comes up in my life. I can workout my 4 or 5 times a week but that is about all of the physical stuff I can do. I better be resting after that. I only go out and do errands once a week maybe by myself. And then I keep it to two stores or less. I could literally go on and on about this disorder. My pain is mostly in my legs, arms, back and hips. Just about everywhere, eh? I did go off of all my medications about 6 months ago. Except my sleeping pill. It is the only thing I still take. I was on over 6 different meds and felt like a zombie all the time. It was terrible. I didn't exercise at all for 2 years because my doctor had me convinced that I couldn't. However, I have been exercising for over a year and if anything, my flares are less frequent now. I work out when I can and when I am having a flare, I take it easy. I get back to it as soon as I can. I have lost 33 lbs. in the last year as well which I think has helped my fibro overall.
I would be glad to ramble on some more about it and answer more questions if you have any and I can. I know how you feel right now. I sympathize with you.