Does anyone have Fibromyalgia?

A

Amadeus

Cathlete
It would appear as though I have it. I've got a constant aching throb through the shoulders/upper back. It's possible that it's Chronic Myofascial pain, too.

Please let me know how you cope with this and how exercise affects you.

How long does a flare-up seem to last?

I really am kind of floored by all this. But it certainly does make a whole lot of sense out of all the quirky things I had going on. Inability to sleep was definitely one of them.

I'm seeing the Chiropractor next week. I'm certain she will understand much more about this than my MD.

Thanks everyone,

julie
 
I don't have it, but I read a recent article in Muscle and Fitness Hers about a woman who had it and she said the only thing that helped her was exercise! It made a world of difference to her. On days when she didn't exercise and stretch she was in a lot of pain.

Keep us posted as to what your chiropractor says. Hope you feel better soon!
 
Julie,

Hi there. I am now 44 years old. When I was 22 or 23, I was told that I had fibromyalgia. As far as I know, that is when they were first starting to learn about it. (I could be wrong). But anyway, in all honesty, what helped me more than anything in the world was exercise. If I go more than one day at a time without working out, I am in pain. I try to take two days off a week, but only one at a time. It is like my muscles tighten up and I just hurt all over. Especially my neck and shoulders. I used to have the "sand bag" therapy, but that never really helped. I also soaked in hot baths at night, and I use the heating pad when I first go to bed for about 1/2 hour. I try not to take Advil, Tylenol, etc. very often but if it is very bad I take it before bedtime with my heating pad. But.....the best medicine for me is exercise. It has been a lifesaver.

Good luck. Hope you find a way to manage your symptoms!

Linda
 
Julie,
I HIGHLY recommend a rheumatologist over a chiropracter. A rheumatologist is a specialist in this disease and would know far more than a general Dr. They would be able to diagnose it and help you to manage the pain. A chiropracter is not an M.D. and does not have as much training esp in fibromyalgia.

Good luck and I hope you find a way to manage your pain.
 
Linda,

Nice to hear from you. I'm curious, does weight training seem to make things better for you? I'm noticing now that the total body workouts I do, Power Hour/MIS/Muscle Endurance seem to be too much and make me ache. If you do weights do you use a split like PS series or are you okay with total body weights? The reason I ask is because I am determined to keep weight lifting. I just have to find the magic formula for me.
How much cardio and how often? I'm liking 30 minutes intense cardio 3-4 times a week.

Amy,

Thanks for the Rheumatologist suggestion. I'm slowly coming to that conclusion.

I'll look for the M & F Hers article!

Thanks all! Have a great weekend.:7
 
Julie,

Good morning!

I started very slowly on the weight training. I didn't start using weights until 1987. Before then, it was just "aerobics". Then I started using the Firm. When Cathe started putting out her strength tapes I started using them. But I always lifted very light compared to Cathe and everyone else. The reason for this was because I felt that it caused pain, especially in my neck. And it did seem as if the total body workouts were worse than the split routines. But over the past year I have progressed to using weights as heavy as Cathe. I do a combination of split routines and total body, ie, this rotation will be Pyramids and then either PH or ME. I have to be careful not to overtrain or I am in pain again (and not the good muscle soreness pain!) And another thing, for me, is that if I do more than 2 total body workouts in a week, that causes me to feel bad (unless one is light). I either have to do one split and one total body, or just two total body in a week. Does this make sense? I hope I am not rattling! For cardio, on the days that I do weights, I do 30 minutes of intense cardio, then on the days that I don't, I do an hour (such as IMax 2). Most of the time, I workout 5 days a week, once in a while six days, but usually that feels like too much for me.

But, yes, I agree with the suggestion of seeing a Rheumatologist. He can also advise you more on the benefits of exercise in helping to manage your symptoms. They have learned so much more about this disease since I was first diagnosed. I am sure that if I would have had the proper treatment and advise years ago, I would have been led a much more comfortable life. But....knock on wood, I have basically felt great for the past several years!

Linda

Sorry so long! I wish you lots of luck!
 
Oh, forgot to add....please know that it took a lot of years of experimenting and tweaking before I learned what worked for me. I know that I am not an expert and cannnot recommend anything for anyone, but this was just my experience.

Linda
 
Linda, Thank you!

I was so afraid I'd have to bust down Kathy Smith or Denise Austin instead of Cathe. It's great to hear you're succeeding and have for so long. You've inspired me;)

I know I'll have to find my own way here, but sometimes it's good to hear what what works for others.

Thanks again,

Julie:7 :7 :7 :7
 
I agree! It always helps me to hear what helps others! Just listen to your body! Just don't quit movin'! ;-)

Linda
 
Hi Julie,

I don't have Fibromyalgia, but I do have Atypical Facial Pain that
is on both sides of my lower jaw. It all started with a root
canal and has been nothing but a nightmare for the last year.
I did not sleep for the first two months and then started taking
Tylenol PM every night for a few months, only to get about 4 hours
sleep a night. Very frustrating. I never knew how involved nerves
were to every aspect of your well being. It took me until last
month to finally be diagnosed. I went from possible bone
infection to MS or trigeminal neuralgia. I guess I should consider
myself lucky that it wasn't any of those. I just wanted to let
you know your not alone. I wanted to mention that my neurologist
put me on Amitriptyline for the pain and for sleep aid and it has
worked wonders. I don't know if Fibromyalgia is helped with this
medication, but it was worth a mention. I almost feel that the pain
is directly affected by sleep. The more quality deep sleep you can
get, the less the pain is the following day. (In my case anyway.)
I know it's been a very dark year for me, and to hear there are
others who suffer similar things is (oddly) a huge comfort. I
hope your able to get all the answers you need.

Tina
 
Austin Powers quote: Vanessa! You're a Fembot!

Love your moniker, Fembot. My reading on this topic has recently turned me on to Trigger Points. It seems nerves get tangled/choked inside of muscles and cause pain from mild discomfort to the point of misdiagnosis and unnecessary surgery. When I read your post, I was thinking you may have a trigger point that needs to be released. I don't have an exact spot for you, but IMHO it may be worth researching to see if it could help. If you want further info on this let me know.

I'll keep the pills in mind. I didn't like the muscle relaxors the Dr. gave me. They didn't wear off for about 16 hours. Way too long, and left me irritable and depressed all day.

Julie:+
 
Hi,
OK, I admit I am a little biased toward seeing rhuematologist because I am married to one. I know that he is very very passionate about trying to help his patients manage their pain. In fact he even convinced his nurse to teach a water aerobics class one afternoon a week! Even if you don't like the person you see, at least it will help you to get a proper diagnosis. I know my husband has told me many many times of patients who went from Dr. to Dr. and was wrongly diagnosed. Excercise is such a wonderful thing and hopefully the Dr. you see will be able to advise you in this also. Excercising keeps the joints flexible.

Just be careful about the chiropracter. I have heard a lot of horror stories from my DH and his friends who are MDs. I don't want to put them all down, there must be some honest ones out there but I know that among my DH and our circle of friends (which includes a lot of MDs, the majority of MDs will not recommend or refer to chiropracters)

Keep us updated. You will definately be in my thoughts. Having untreated pain is the worst.
 
Okay Julie,

I owe you a big apology. I was a total idiot and thought it was
MYOFACIAL pain you had. I just learned that MYOFASCIAL has a
totally different meaning. I'm such a boob sometimes. Sorry
that I confused this condition. This is why I don't post often.
Open mouth, insert foot. I wish you all the luck and hope you find
a way to be pain free w/o medicating.

Tina
 
RE: Pillow & exercises

Okay, so what is the difference? I may be about to put my foot in my mouth, too. But I'm still going to say this because it might be helpful to someone.

I discovered a massage therapist who's worked with Olympic, NHL, NBA, athletes. He does a different type of massage than the relaxing Swedish massage that I had experienced. It was a deeper massage, not always comfortable, but it really helped! (And not just the day of the massage.) I think it's called myofascial.

I was carrying my stress in my shoulders & had chronic pain from carrying a bookbag on one shoulder for years. He recommended I get a chiropractic pillow (I think it was Normalizer.ca or Normalize.com.ca--it's a Canadian company). The pillow made a huge difference in my life. I recommend it!! It has different "heights." I use the shorter side when I sleep on my back & flip it over to the taller side when I sleep on my side. All chiropractic pillows are not equal, though. My mother-in-law bought a Beautyrest chiropractic-type pillow for when I visit, but it's just not as comfortable for me as the Canadian pillow. It's too tall for my short neck. There's another brand that an MD friend recommended to me after my neck was broken (her neck had been broken, too), but for the life of me, I can't remember the brand's name right now. I think it was around $100.

I know this is really long, but I also wanted to tell you about the physical therapy exercises I learned after my accident. They're great for the smaller, more often overlooked postural muscles. When you do them, keep in mind the point is shoulder retraction. (Cathe talks about it & it's really important.) I drape myself over a stability ball, face down, and lift my straightened arms, thumbs down--

I just found out my husband got hit by a car on his bike ride & is in the hospital ER now, too. I gotta run. I'll try to get back to this b/c these ex. are good.
juliee
 
Hi Julie,
gosh I barely even check this OD forum these days, so glad I did tonight. I have Fibromyalgia, and have had it as far back as 15 years old (I had chronic severe back and neck pain then). I was diagnosed at age 28 after a myriad of crazy seemingly-unrelated physical problems. I was actually the one that finally was able to put a face on the condition I had; this led to my diagnosis by a rheumatologist. This condition can be very disabling, believe me, I know, but healthy lifestyle has put me (mostly) in the drivers' seat (or at least in the front passengers' seat :) ). FMS affects just about every system in my body, but my nervous system seems to be hit particularly hard, and this requires so many different methods of treatment. I absolutely HAVE to exercise. It helps to such an amazing degree I'd say the saying 'exercise prescription' must've been written just for me. I have to eat healthfully, most of the time, and I take stress-reducing measures as much as possible (whether this be doing yoga, or making sure I have enough food in the fridge). i find that flares can definitely be triggered by many different things, but on the whole, when you're doing most things right, (and for reference, I do this most of the time) and you still have a flare, (and I definitely, without a doubt still have flares!!) you just gotta deal with the here and now at that point, and not analyze why it happened. I mean, my thought is, there is no rhyme or reason to the trigger factor when you are doing the best for yourself that you can. It's a weak immune system and nervous system - that's it. They can last from a couple of days to a week with me, and the flares have varied: sometimes it's debilitating fatigue with sensitivity to light and sound, sometimes it is a pain in my right leg
or right foot that has, at times, made me unable to walk (I have also experienced lots of swelling along with this contrary to regular FMS symptoms), sometimes it's a lower back pain where you can't get off the couch. (I have regular daily symptoms also, but these are mildly irritating compared to the debilitating flare-symptoms.)But suffice it to say, all of these are lassened to a great degree due to exercise and healthy diet / lifestyle. I still do Cathe!!! Just toonight I did Imax, and I love it. I just listen to my body and when it says 'don't push' I don't push. I know it is sometimes very difficult to obey your body's messages, but ultimately I learn (on a regular basis ) who's in charge here!!;-) I want to keep working out and having fun being fit and as healthy as possible, so it is important to listen up. Best of luck to you, and things can be contolled so you can live decently! Just takes an ENORMOUS amount of self-care and dedication to self-care. But it can be done.

edited to add: Julie, after reading some of the other posts, I hope you decide to see a rheumatologist. They are the ones considered 'fibromyalgia' doctors, the ones which FM sufferers go to for their primary FM care, in the world of western medicine. I was diagnosed by a rheumatologist, and he knew how to diagnose it, let me tell you. On one of my tender spots (that he touched when doing the test) I had a goose egg on the site which lasted for three days after. I'd say he knew what he was doing (ha ha, giving me a localised flare is what he ended up doing, LOL ;-))

Kathy
 
I don't have fibromyalgia, but am a nurse, and work at a medical spa. One of the treatments we provide is endermologie (which helps the appearance of cellulite). It is also used on a different setting for fibromyalgia pain. Some insurances even pay for the treaments, which are $100 a treatment, because fibromyalgia is a medical condition, and endermologie does help manage the symptoms. LPG has an endermologie (www.endermolgie.com) website where you can find out more about this. I agree with others that a rheumatologist is a must! I do think there are great chiropractors out there, as well as bad ones, just as there are with any health care professionals. I hope you will find someone who can really help with this illness. Keep us informed.
Lynn
 
Wow! So many interesting posts and so much info. Thank you all very much.

About the Rheumatologist, I know that I should see one. I did call my Dr. and ask for a referral. Her office called back and told me I'd have to undergo a series of tests for Lupus, Lyme Disease, Rheumatiod Arthritis, etc. My insurance has a $1000 deductible. I am nowhere near meeting this.

But, what has happened is that I am learning how to deal with things. I have found an excellent massage **Therapist** (not just your 21 year old masseuse girl in a spa/beauty shop) who understands trigger point therapy who has helped a great deal. Also, I don't have symptoms as debilitating as some of you describe, I have very little joint pain and only two major tender points, the others are pretty quiet. More of my problems lie in localized neck/back muscle spasms. So therefore, unless things get noticably worse I will probably not seek a Rheumatologist.

My sister, who's also Fibro, has had success with acupuncture. I may give this a whirl. It's seems less invasive than drugs. Also, the Chiropractic treatments have helped. My shoulder no longer aches when I get up in the morning. I know my Chiro personally and she's a member of my church, so we're very comfortable together, she doesn't do anymore than necessary. I agree, there's good Chiro's and bad ones.

I feel so much better this week.:7 :7 :7 I've been reading Dr. Teitelbaum's book "From Fatigued To Fantastic" very interesting stuff.

Also, I switched over to a low glycemic diet, which was he** for about 5-6 days, btw. I think this helping me a lot, I am feeling better each day.

Thanks again all!:* :7

Julie
The Fibro-Maniac

PS-Is anyone interested in a monthly Fibro check-in?
 
I do have this and have for about 5 years. I have found you have to figure out what level and intensity of exercise to work at - i have found the best results by mixing up, a heavy bust my butt day alternated with a lighter weight work for my 2nd or 3rd weight workout of the week, with walking or lower impact cardio in between.
Also, massage, it is GREAT! Warm baths, or showers after your workout too, helps keep muscles from getting too painful, but find sometimes, it still happens, and a very warm shower any time of day or nite has helped. Adequate rest, for sure, and caffine, for me, makes it worse.
But I agree with many others here that weight exercise is a life saver with this disease, there were times before I started adding weight work of any significance to my routine that I would just cry in dispair of the pain never ending! Now it's very manageable.
 
hi Julie! i just read a few of the responses here and thought i'd add a little. i have had what we think is fibromyalgia since dec 1999. i've been to two rheumatologists and one thinks i have it, the other isn't so sure. in any case, exercise helps very much as other have said as well as cleaning up your diet, avoiding aspartame, etc. i would like to add also to not give up your chiropractor completely. i strongly believe in chiropractic care having recently started it a few months ago. its been a night and day improvement and i'm hoping by the end of the summer i'll be able to stop taking the anti-inflammatory i take to combat the pain of the "supposed" fibro.

just my two cents worth, good luck to you and take care! :)
 
RE: ball exercises

I also wanted to tell you about the physical therapy exercises I learned after my accident. They're great for the smaller, more often overlooked postural muscles. When you do them, keep in mind the point is shoulder retraction. (Cathe talks about it & it's really important.) 1)I drape myself over a stability ball, face down, and lift my straightened arms (w/light weights, if you want) to the side, thumbs down. 2)Then thumbs up, arms lifting to the side. I think of my general body shape in these two exercises as a capital T. Then there are 2 exercises in more of a capital-I or superman shape: 3)Still draped over my ball, face down, I extend my arms forward, thumbs up. 4)Then arms lift backward, by my side, thumbs down. Still always concentrating on shoulder retraction, I do all 4 exercises in 3 sets.

It took me awhile to notice much change, but after a month, I felt stronger & had more endurance in my shoulders.

I don't have fibromyalgia, but if you have shoulder fatigue maybe these exercises would help you, too.

juliee
 
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