fibromyalgia?

has any one been diagnosed with this chronic pain disorder... my doc said it might be possible for me (and i know its an umbrella term for "we dont know what it is") but i have been through several MRIs, bone scans, blood tests, etc etc and nothing seems to be wrong, but im in constant back, neck, shoulder and hip pain....

someone said that working out is good for this, and being active is the best way to take care of this,  but i thought id just see if anyone on CC had it and wanted to comment? thanks....

21 y/o female who can't move half the time....

laurie16

there have been several posts about FM on this site, you may want to read them....

I also had FM and what worked for me was exercise and restricting yeast in my diet.  There has been some research that suggest a yeast overgrowth can be the underlying reason behind FM in some of the cases. 

I had a friend who ended up having some food allergies that caused hers. 

I would get some allergy test done and exercise as this seems to help a lot. 

I have chronic severe pain throughout my body that they have not been able to diagnose. Nothing seems to help so far except pain meds. My healthy diet has improved aother areas of my health, but not the pain. Some things do make it worse though, like statin drugs.

I have FM and CFS.  I am in pain most of the time, but mostly ignore it.  I do take some pain meds, but mostly tough it out.  The worst part of it is the exhaustion.  It seemed to get better once I had lost weight (have lost 58 so far) but I have just had a really bad week.  It's up and down.  I live with it, that's all. 

I was diagnosed with CFS and alos had joint and musle pain after 3 years I was diagnosed with a high mercury and lead load which can disrupt your immune system and Lymes disease and food allergies. I began treatment last Dec. and have my life back I am 95% better and stil improving.

While at my docs office I have met sooo many people who were misdiagnosed with FM and or CFS. Two of them for 30 years. One had arsenic posoning and the other had Lymes. Both are doing much better now. I highly reccomend finding a Lymes specialist to rule that out ( I was tested and found to be Neg. when I first became ill so find someone who knows what the are doing) and someone who knows the correct way to test for heavy metals.

Also when I cut out all the foods I was tested allergic for my joint pain was reduced by 50% or more and my sleep improved almost immediatly. 

Don't give up. It took me 3 years, lots of research and finding the right Doc. who truly believed there was a physical cause and he would keep testing untill he found what was going on.

hey thanks-- as for lymes, i have been tested literally 10+ times... i had mono when i was a young teen and they started then... since then its been several times since then... ive had overlyactive thyroid my whole life and joint pain for more than 5 years with unknown causes other than trauma, which was followed by physical therapy, trying different kinds of drugs, muscle relaxers, heat compressed, ice wraps.. u name it, ive done it.... i am just sick of this never ending not getting better! well i have several blood tests coming up this week an a thyorid ultrasound on july 12.. hopefully someday soon this will be put to rest.... what is CFS?? by the way :)

CFS is Chronic Fatigue Syndrome

Laurie....I know some doctors who don't have any answers may misdiagnose FM but it IS a real disorder and can have tremendous consequences on one's life.  I was diagnosed with FM 2 years ago along with Lupus and I have had a terrible time controlling the pain, exhaustion, and brain fog. I'm a teacher so I have my summers off and this seems to help as I can arrange my day around how i'm feeling. I have also begun to lose weight and trying to figure out an exercise routine that doesn't throw me into a flare.  I think Im feeling better but won't know for sure until I'm back at school. I have found a great doctor who understands that this IS a "physical" problem.  My best advice is to find a doctor who is willing to try different treatments because what works for one may not work for another.

I've seen reference (a few years ago) to studies that indicate sleeping more helps with fibromyalgia. The theory was that soft tissue repair happens during sleep, and not enough repair was occurring in those with fibromyalgia to offset each day's wear and tear on the tissues. Try getting another hour or two of sleep a night for a week to see whether the symptoms reduce, was the suggestion.

Athene, that would be great, but for me - I'm also a terrible sleeper!  I get anywhere from 3 to 6 hours each night. 
And Laurie, my doctor says stretching, not necessarily exercising, is the best.  I was getting a frozen shoulder like every other month and it was costing me a fortune at the chiropractor, so finally I asked him if there was any stretches that I could do.  He gave me a stretch exercise or two and I haven't had to go to the chiro since and that was about 2 months ago!  So, yea...definately stretch it out when the muscles start tightening up.  Hope this helps.

mindysmith, so have you addressed the sleep problem(s)? Enough good sleep also helps with weight loss, too, you know!

I do know that.  It's difficult though.  I have been using a few mind games to help me fall asleep better and to help me go back to sleep when I wake up, but I'm sure I'm still not getting enough sleep.  I can't go and do any sleep studies because our insurance won't cover it for me.  They will cover the Dr. visit but not the actual sleep study program, and we are, unfortunately, paycheck to paycheck people.  So, I am actually considering myself a better sleeper now with the average of 3-6 hours asleep a night!  There was a 4 year period where I got no more than 1.5 hours on any given night and that was a combined, interupted sleep.Very rough 4 years.

Athena - I know you mean well by pointing out that "more sleep" will probably help with the fibromyalgia and although you are correct in theory, it's not so simple.  Most people who suffer from this also suffer from terrible sleep disturbances as well.  It's just not as simple as "getting another hour or so of sleep".I sure wish it was.  I was diagnosed with fibromyalgia about 2 years ago and one of my main symptoms is that I had terrible insomnia.  Either I could not fall asleep or if I did I would wake up about every 40 minutes throughout the entire night. Your body repairs and regenerates itslef during REM sleep (or deep sleep cycle), unfortunately, my body was never getting this type of sleep at all.  I had two sleep studies done (they were checking for sleep apnea), and although I do not suffer from sleep apnea they did discover that I was having between 17-25 brain disturbances an hour...all night long! When I said I do wake up alot but not nearly THAT many times, I was told that I may not neccessarily be waking up and looking at the clock, but my brain WAS essentially "waking up" and therefore never gettingt o REM sleep. I was originally put on Ambien CR and then Lunesta but neithr worked for me. Then they wanted to put me on a scary drug (forget the name right now), but it is essentially like the date rape drug GHB.  There are all these scrict rules to taking it and then I found out it would cost me over $250 a month and that is WITH insurance! Needless to say I decided against it, which was primarily because of the money but it also scared the hell out of me. For the last three months I have been taking Rozerem and it seems to be working well for me.  I still have some trouble falling asleep but not nearly the trouble I had before, and I actually only wake up a couple times during the night now. Also, when I wake up I actually FEEL like I've gotten some sleep.

Whew....boy that was a wind bag response but I hope it sheds some light on the severity of the "getting more sleep" issue with this disorder. Mindysimth...it will probably take a lot of trial and error but if you have doctor willing to work with you hopefully you can find what works for you.

Godspeed!

Thanks Tony for the info and the well wishes!  I forgot to mention that I was also taking a muscle relaxer every night before going to bed, which I have now quit taking.  I didn't feel that it was doing me enough good to be addicted to it, so I quit.  I really have been trying very, very hard to tackle this issue without taking anymore drugs.  I have SO many bad vices already without adding an addiction!
Tony, also you were right on the money with the sleep issues and FM.  That was one of the first things my doctor asked when I began telling her about my pain. 

Mindy - Just wanted to let you know that I really understand about not wanting to drug yourself up or get addicted. When I took the Ambien CR and Lunesta I was worried about this too.  I felt like it jst knocked me out but that I wasn't realy geting good sleep. Then after awhile it seemed like a built up a tolerance to it.  I didn't like that at all, but the Rozerem is different (at least for me) My doctor explained it like this...those other drugs work on your CNS and basically they do "knock you out", but Rozerem helps build up melatonin in your body. This is what makes us sleepy.  My doc said that as we get older our melatonin level decreases which can make sleep more difficult. It can take up to a couple weeks to see results because it needs to build up in your system. For me it feels like I actually drift off to sleep and I don't wake up nearly as often. It is not an addictive drug...more like a supplement it seems. Anyway, it has worked for me so it could be worth a try. As for muscle relaxants...they knock me out and I'm a zombie the next day.  I only use these on days I am hurting too badly

Thanks Tony, I'll talk to my doctor about Rozerem.  I tried melatonin too to no avail, but if it too builds up, then maybe I didn't give it long enough! Will ask her about that too.

tonyafig:

"Athena - I know you mean well by pointing out that "more sleep" will probably help with the fibromyalgia and although you are correct in theory, it's not so simple.  "

It WAS that simple for me. I'm sorry it wasn't for you.

Well Athena, good for you, it's great it was easy for you...but for the majority of fibromyalgia sufferers it is not "that simple". For most of us it takes months if not years to find what works for us. Sure wish I was as lucky as you.

I was diagnosed with Fibro after years of suffering with chronic pain and lots and lots of tests.  It was a relief to know I wasn't dying and it wasn't going to kill me (although some days it can feel like it).  i've truly found that exercise, keeping moving and stretching have been by saving grace.  On the really, really bad days, I just remember they are the really really bad days and they pass. 

Good luck to you and it really can and does get better! 

Hi...I am new to this site and was reading your posts. I am 58 yrs. old and have fibromyalgia since I was 39.  The tiredness & fatigue are worse than the pain because it robs you of being able to do even the simplest of things when it is full blown.  Diet and exercise help but stress is a major trigger that can set you into a downward tailspin.  I find that getting out for a walk with a friend is very beneficial.....a combination of exercise and fresh air along with someone I can trust to confide in is a great release.   With Fibro it is nearly impossible to reach the desired level of sleep("R.E.M.") and without proper sleep the body continues to break down....add rhumetoid and osteoarthritis into the mixture and you can get a lot of down days that lead to depression and emotional eating.  It is hard to make people understand your limitations because people with fibro look "So Healthy".....others often think it is just a ploy for attention....this is the hardest thing to bare.  Talking to others with the same problem is a great comfort .....we all understand those "Days!"....Hope to get to know y'all.