Fibromyalgia

[eclectic]

I was just curious if anyone else has fibromyalgia?

I was diagnosed and started treatment for it about 6 years ago. (I call it my little miracle pill)

Mostly I would like to know how you treat it, what your recovery times are like, how you are able to train and pace yourself.

And I wanted to "come out of the closet" Not that it is anything shameful just I always feel I should be able to do what everyone else does and not use FMS as an excuse. Since I have started cycling more and weight training to get my muscles stronger I have way fewer "FMS days" and less pain.
But I am frustrated that I can't get as strong as others.

Also does anyone know if it can go into remission? My Dr. isn't too helpful, I just go once a year, get a script for my miracle pills and leave.

[KnottedYet]

I don't have fibro, but I worked in a clinic where we had a specialist in PT for fibro. I helped with a lot of fibro patients, but I'm no expert.

Fibro can go into "remission" and it can get worse. Got a mind of it's own! Like many autoimmune diseases it seems to be aggravated by stress and helped by exercise.

Did you do PT for a home exercise program specifically for the fibro? The therapist can look at what parts of your body and aspects of your strength are most effected and give you exercises and stretches for those areas. The home program is in addition to your usual activity. The therapist can also help you figure out how to pace yourself and how to gauge recovery times.

[mlove]

I was diagnosed with fibro in 1993 but my doctor was sure I had already had it for a long time. If you have a miracle pill, I envy you. I have tried lots of prescriptions and still have pain and sleep issues. However, once I actually started exercising, I felt better. I still hurt but I do a lot of cardio, ride my bike, and just try to keep active. If I hurt, I take more pain killers.

Fibro doesn't always get worse. I am about the same as I have always been. I haven't gotten better either. Everyone progresses differently. I just see my rheumatologist twice a year and my internist twice a year.

There are some great books out on fibro, especially the ones by Dr. Mark Pellegrino. If you haven't been reading up on the subject, that's a great place to start.

Just keep riding.

[han-grrl]

I have trained clients with FM

It means being patient, moving slowly and using rate of perceived exertion rather than heart rate zones. many of the meds my clients were on affected HR so using zones was essentially useless.

it also means taking it one day at a time. some days are good and some days they might call an hour before to cancel.

i had one woman actually break down in tears with me because she was so deconditioned. we did basic leg lifts and just simple movements to get things going and she was having a hard time. i told her it was ok, and to take it one day at a time, and not to over do it. this was at a gym, and i kind of wish she would have bought some PT just for the extra coaching and comfort.

anyway that is my experience with FM.

[eclectic]

Thanks for the great responses Once again the TE ladies pull through. I should have said something earlier.

As of now I am just going blindly on my way and trying to figure things out exercisewise.

Like you mlove I figure I had it for about 12 years before being diagnosed - After many different types of dr. visits it was finally a psychiatrist that diagnosed it, he said mentally I was fine (some of my friends may beg to differ ) and sent me over to the rheumatologist.

I have tried to read what I can find about it but I have never read anything by Pellegrino - thanks for sending it along. My daughter was also diagnosed at 17 years old (she is 19 now)

My pain can be very much weather related and fatique related (mainly not enough sleep vs working out too much) I started going to bed earlier and have felt much better. 8-9 hours of sleep vs 7. I used to swim at 6am and was exhausted all the time - now that I have switched to evenings I feel much better - I have always said "life begins after 4PM"

One of the best things I have done is quit all caffiene products, I will drink 1/2 and 1/2 coffee once in awhile but not often enought to get addicted again.

Very interesting han grrl re heart rate - I have never heard that - are rates usually higher or lower? Mine is usually above target even though I feel fine. I have been blaming my asthma meds for that

Knotted Yet - I have never heard of using a PT for FMS. WOW! makes sense, how is one able to do that? Do I need to go through a physician? I suppose so. I will check w/ my ob-gyn practicioner vs my rheumatologist - as I said he just gives me the once over, fills the script, says i am doing great, keep it up and sends me on my way. The former one we had was much better.

Mlove I am glad to hear that you too are not opposed to pain killers. I have friends w/ fibro who refuse to take any. They are also overweight and out of shape because it hurts too much to do anything. I figure a few pain killers a day aren't going to hurt me as much as not being physically active. All my Dr's said as long as I stay w/in daily limits I will be fine. most days are 2tabs, some days are 4 and in extreme circumstances 6.
I am taking 5 milligrams of cyclobenzaprine (flexerol) before bedtime - that is my miracle pill. Apparently it works for about 45% of people - I lucked out. My daughter is on Ametrypteline (different dr's) but she doesn't like it I need to see that she switches meds.

[mlove]

I take cyclobenzaprine too. It does help with sleep, especially if I take it a couple of hours before I go to bed. But I am lucky to get six good hours of sleep. I wake up a lot and unlike you I am an early riser. Once I started going to the gym early in the morning, I started exercising more regularly. After work I found I was too tired to do anything. That said, now I can go on evening rides in the summer without problems although I still tend to go to bed by 9 pm.

My doctor prescribed physical therapy when I was diagnosed and it helps. But after a while my HMO said I couldn't have it any more for the fibro because it is a chronic condition. If I ever need it again, my rheumatologist will have to find another reason. I do find that massage helps, but you have to find the right person. I have had a lot of bad experiences where I could hardly get off the table afterwards because the pain was so bad. But a good massage therapist can make a huge difference. If you decide to try that, check to make sure that the person actually works with people with fibro.

[han-grrl]

actually with my one client the meds wouldn't let her work hard if that makes sense. as soon as HR started to rise about 120 or so, she started to feel dizzy.

[mlove]

I would guess it depends on the person, the level of fitness, and the type of meds. When I started exercising, doing 3 mph on the treadmill was challenging and I couldn't work out for more than 10-15 minutes. Now I can actually run at 5.5 mph. Having my heart rate in the 150s for short periods is challenging but I don't get dizzy, sick or anything. I am 55 but I think that building up over time, and working with a trainer, really can help. I also managed through all this to lose about 40 pounds.

I do spinning classes, trainer rides, ride with the club, and do 5K walks (races) as well as working out on the treadmill. I also like yoga but I have to be careful with strength training. That is where I can develop real problems.

[eclectic]

My meds give me about 5 hours of good sleep but now that I am going to bed earlier I can sleep better the remainder of the night (wierd) I WISH I was a morning person - my body is in AGONY if I do anything w/ impact early in the day - even plain walking is too much, I can bike ride, however, and on long ride days in the summer have been know to leave at 6:45am

Just by starting the meds I lost 10 lbs. It seems like my "appe-stat" was off too, I was hungry all the time. Now it feels normal again. When I eat i can feel full.

I hear you about the massage. A good friend of mine is a massage therapist and she is pretty gentle. But the first time I had one I thought I was going to die the next day. At the time it felt so good. The next one was much better.

I am working up on the running - I run on the indoor track because I find my legs hurt more on the treadmill. It will be interesting this spring when I hit the trail outside and the surface is harder. yesterday I did 1/2 hour on the elliptical before running 1/2 hour. I timed my self and was doing an 11 minute mile for 2 miles (whoo hoo - for me that is REALLY good) I have absolutely no pain today so that is another really good thing.

I really need to do weight training. I use the machines because then I don't have to worry about form as much. I worked up to it slowly and do a medium weight and only 1 set of 10-15, I follow a prescribed program and have good recovery days. (although now I am trying an experiment of "mixing it up" 1 week of med. weights 1 set 10-15 reps, one week of light weights 3 sets of 10, back to med for a week then 1 week of heavy, 5-8 reps, 1 or 2 sets - I am on week 2 so shall see how it goes)

I stretch really well after each workout and that has really helped the residual pain. I would like to fit yoga back into the mix - guess I will just have to quit work

[EBD]

I hope you don't mind my chiming in - I don't have fibro but my cousin (with whom I am close) does. She is also a triathlete, so she has somehow found the key to being very athletic. She has had good luck with nutritional therapy - she saw a nutritionist in NYC who was very knowledgeable about fibro (rare, from what I understand). The diet she was given was very strict, but she said it almost completely relieved her symptoms. I don't know all the details but I know it involved basically cutting out dairy and wheat. There were also other dietary dictates and supplements, so don't go on my description - but if you can find a nutritionist who really knows fibro, it might be a big help. She no longer follows it strictly at all times (a girl's gotta have pizza now and then), but I think when she starts to get symptomatic she goes back on the diet (plus daily exercise) and feels better again.

[mlove]

Another thing to think about is sensitivity to cold with fibro. If, like me, you live in a cold place, you may need to experiment to keep your fingers and toes warm if you ride in the winter. So far I have figured out gloves but my feet are still a problem, even in the house with warm socks, etc. Outside I am just outside of frostbite, even at 45 F.

[Kalidurga]

I've read this thread with a lot of interest. My 63 yr old mother was diagnosed with fibro several years ago and still struggles to deal with it. I don't know what meds she's on, but I do know that part of her problem is diet and exercise, i.e. she won't. Part of the issue is that slothfulness seems to run in the genes of my family, and part of it is that exercise is uncomfortable and sometimes painful for her. I'm convinced that if she starts out slowly and patiently, but sticks with it, that it'll gradually get easier for her. I tell her about people I've met, like you ladies, who manage to deal with their fibro and live active lives. Her response is generally to become defensive or get upset.

I understand that fibro seems to affect different people to different degrees and perhaps she's severely affected, but I can't understand not wanting to do something as simple as exercise in order to alleviate it. I'd love to get the perspective of women who have this condition. Am I not understanding what she's going through, or is there some way I can help her to become motivated to get moving and keep moving?

[mlove]

It took me years to get to the point I am at now. The fibro makes you tired and you hurt, so you don't want to exercise. Besides, I had spent most of my life avoiding exercise. But because my family has such a bad medical history--heart disease, type II diabetes, high blood pressure, etc.--and I have been on meds for high blood pressure and cholesterol, I knew I was headed in the same direction.

I was also very overweight, which aggravates all of the above. In the end, because I didn't want to die at a relatively young age, I decided to do a program through my gym that helps you develop healthy eating and exercise patterns. One breakthrough was finding out the best time of day for me to exercise. Unlike many people with fibro, that was early in the morning. I don't sleep well (another symptom of fibro) and I get up early. Trying to go to the gym after work wasn't happening. I was always too tired and hurt too much. But early in the morning was great.

Maybe your mom needs to go through the kind of counseling that I went through. Hearing what you need to do from nonfamily members sometimes works better. And eventually you start to feel better and that motivates you to do more. When I started I found walking 10 minutes at 2.5 mph was hard. Now I start at 4 mph and can do some runs at 5.5 and I do 45 mins to an hour on the treadmill. I wouldn't have believed that if you told me at 50 that I would be riding a bike for more than 20 miles at a time and doing 5K races.

Maybe a gift certificate to try out some gym services would help. A lifestyle trainer rather than just someone who works out an exercise program might work better. It also helps to have a gym with a lot of older members. Young things in spandex usually put off older exercisers, at least at first.

I hope your mom can get through this. As my rheumatologist says--fibro won't kill you, you'll just wish it did!

[eclectic]

Another thing to think about is sensitivity to cold with fibro. If, like me, you live in a cold place, you may need to experiment to keep your fingers and toes warm if you ride in the winter. So far I have figured out gloves but my feet are still a problem, even in the house with warm socks, etc. Outside I am just outside of frostbite, even at 45 F.

Maybe that explains it - I am sitting at the computer w/ a space heater by my feet. Also I wear about 4 layers when riding in temps below 60 F

BUT I have skiied at -15 F.

I find if I keep my core really warm my fingers and toes will warm up.

My biggest problem is leg and foot cramping if I get cold while riding so I don't ride when it drops below 50 F

[eclectic]

I've read this thread with a lot of interest. My 63 yr old mother was diagnosed with fibro several years ago and still struggles to deal with it. I don't know what meds she's on, but I do know that part of her problem is diet and exercise, i.e. she won't. Part of the issue is that slothfulness seems to run in the genes of my family, and part of it is that exercise is uncomfortable and sometimes painful for her. I'm convinced that if she starts out slowly and patiently, but sticks with it, that it'll gradually get easier for her. I tell her about people I've met, like you ladies, who manage to deal with their fibro and live active lives. Her response is generally to become defensive or get upset.

I understand that fibro seems to affect different people to different degrees and perhaps she's severely affected, but I can't understand not wanting to do something as simple as exercise in order to alleviate it. I'd love to get the perspective of women who have this condition. Am I not understanding what she's going through, or is there some way I can help her to become motivated to get moving and keep moving?

I am so sorry to hear this - it must be difficult for you to watch
Exercise can be painful and recovery time very long.

Before I started my medication I would vacuum for 10 minutes and lay down for 15.

In order to start exercising there needs to be strong motivation and for each person it is different (mine was really dumb but hey it got me moving) - I received an email from a male friend who had a totally distorted view of females and dating and it p***ed me off so bad I went for a walk - outside, at night, at the end of January. I told a friend, she laughed and for the next 6 months she and I only missed 6 days of walking, by that summer I could run 5 k, joined weight watchers, dropped 30 lbs, and learned how to downhill ski - I was 45 years old at the time. Running, however, at this time was very painful and I needed a 2-3 day recovery period.

I started swimming, weight lifting (I think this was the key) and now when I run I don't hurt and my recovery time is much quicker. I have good running shoes also which is important.

If your mom would be willing check out the Easter Seals programs in your area and see if they have warm water aerobics. Water aerobics don't hurt and recovery time is minimal. Even regular water aerobics is usually pretty good. Perhaps see if she would go once to watch. She will see there are ladies of all makes and models there in swimsuits.

Re diet - I have now cut out white flour and and sugar as much as possible and I can't believe how much better I feel.
Also check out how much caffiene your mom drinks - a lot of what I was blaming on FMS was actually caffiene withdrawl everyday - once I got my allotment of caffiene in I felt way better. I still can't exercise in the morning very well but I don't hurt.

Remember preaching and telling them what they should be doing won't help at all Good luck and let's hope she finds something or someone to motivate her.