Fibromyalgia - VeggieBoards
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#1 Old 02-21-2007, 11:01 PM
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Have any VeggieBoard members been diagnosed with fibromyalgia?



I'm curious to read how other people that have it cope.



I was diagnosed with it about 6 months ago...but I don't know anyone else who has it nor have I ever met anyone that has it.
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#2 Old 02-22-2007, 05:02 AM
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I was diagnosed about six years ago....I've done all the 'right' things to try and help the symptoms. I've been exercising regularly for about three years now, but have had to cut back somewhat because too much exercise actually makes the symptoms worse. Brisk walking about 30 minutes a day, 3-4 days a week is the max my body can take. I cannot lift weights, use stretchy bands, etc. I also do pilates but have to minimize that as well. I have not seen any difference with regard to diet. I was hoping giving up dairy/eggs would have helped. I just recently started taking Cymbalta as my doctors have been pushing that for the past two years. So I decided to give it a try. I'm only taking 30mg and I'm not seeing much improvement in the pain, but for some reason I can tolerate it better. Supposedly, 60mg of Cymbalta is recommended for depression (which I do not have) but 120 is needed for fybromyalgia pain. I'm not willing to go that high. At least not right now. The 30mg and some ibuprofen is fine for now.
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#3 Old 02-22-2007, 09:05 AM
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a lot of my clients have fibromyalgia and cfs. most of them do daily yoga (either yin yoga or some other restorative form. this is to support their other movement/work--walkng or whatever else they do.
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#4 Old 02-22-2007, 08:23 PM
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i was dx'd a couple months after you were. i wouldn't say i am coping well, more like maintaining. heh. how is your sleep, and have you tried anything for it? i am on my second muscle relaxer(almost four months now) and it is starting not to work. i went to mayo clinic cause i was misdx'd with something else, and that ortho said i might not have fibro. apparently my gp and rheum didn't run every test they could have. i haven't been back since, but i wonder if he isn't right...my symptoms are moderate, but i don't think any of my tender points are positive. the rheum seemed to think a few of them were, so i dunno. pm me for the name of a great fibro support board.
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#5 Old 02-23-2007, 06:08 AM
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I didn't realize so many people on this board were dealing with this. I was diagnosed almost a year ago. My mother also has it, along with systemic lupus and chronic fatigue syndrome. At first I was very angry, but I didn't really realize it. My mother dragged me out of the house one day, took me out to lunch and told me, "You are going to have to find some way within yourself to cope with this." It was a wake up call.



I am now on Nortryptilene (sp?) at night, Paxil in the morning, and Tramadol for when I can't handle the pain anymore. I also try to eat a balanced diet and twice a day I have several stretching excersises I do, based on the recommendations from a very helpful physical therapist. And I don't know how I could ever live without my bathtub and my heating pad. Stay out of the COLD.



Some people have noticed that I do odd things, like wear three sweaters and a pair of knit gloves at work. If they ask me if I am sick and I feel I can trust them well enough, I smile and say "Yes, but I like to pretend that I'm not." The important thing is to make a conscious decision to fight it, and not let it fight you. I'm sorry that you have to deal with this.
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#6 Old 02-23-2007, 06:59 AM
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if you're affected by cold with your disorder, i would recommend hot yoga. bikram is a good series, and it is very warm in the room. baptiste style yoga is usually in a cooler room (about 90 degrees instead of 105), and some other studios offer hot yoga at 85 degrees.



be sure to contact them and see if they have an hour long class, rather than the usual 1.5 hour or 75 minute class. this will be helpful in combating the chronic fatigue--if you have it. the movement can be a 'but much' and i recommend starting slowly. even if you only participate in about 1/2 or 1/3 of the class (doing some poses, but not others) until you build more strength/stamina, it's a good idea.



typically, i heat my home studio to about 75-80 degrees for those clients with fibro and CFS, but some of my other clients must have it below 75.
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#7 Old 02-23-2007, 07:25 AM
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I've always wanted to try yoga, I just haven't had the money to start attending classes. Some of the stretches I have been taught are based on yoga excersises and they really do make a big difference.



Unfortunately, with fibromyalgia, what works for one person doesn't necessarily work for another. Many people have had good luck with pool therapy. It made me worse. Yoga is one thing that most people seem to agree on.
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#8 Old 02-24-2007, 04:20 PM
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I had to go into treatment last week because the medication I was on was causing me to have vision loss, panic attacks and sucidal thoughts.. While I was there I was finally properly diagnosed and medicated, and also, I was diagnosed with pretty severe Fibromyalgia. Yeah, I'm only 20, and I've been in pain, pretty much all over my body, since I was a teenager. I have 13 of the 15 points I think. But it's not really the pain that gets to me as much as the IBS, sensitivity to light and sounds, and depression.



Anyway, I was told by my sister, who is a doctor at John Hopkins, that Fibromyalgia is a pretty broad diagnosis for people with chronic pain, but all I can say is it is nice to finally have a medical diagnosis for my years of pain. One with which I can use in employment situations, etc. to receive aid.



I was told during my treatment that many people who have been physically or sexually abused as children, or for an extended period of time in their lives, often develop and struggle from Fibromyalgia. Sadly, I am one of those cases as were many of the women that were in the treatment facility alongside me. It's just so sad how we internalize our pain to survive the abuse, then have to work all our lives to relieve that pain.



As part of my treatment plan I've made a commitment to stretch daily and to receive regular massages. So far they really have been helping me. But I still can't, and never have been able to, many of the physical activites I'd love to like run, do yoga, etc. I can't even do some of the easy yoga stuff without folding over in pain. Swimming has helped me, but sometimes that even can be too much for me.
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#9 Old 02-26-2007, 05:33 AM
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I have Sjögren's syndrome (another autoimmune condition) with flares that sometimes mimick fibromyalgia symptoms.



What helps for me is

- sufficient sleep (I believe that the whole condition in my case was developed through chronic sleep deprivation)

- hot water (showers)

- walking (unfortunately haven't been able to jog for a year now), lots of stretching

- ibuprofen

- reducing dairy and alcohol intake, haven't had much caffeine in ages so that's probably not a factor for me



I instinctively believe yoga could relive a lot of my symptoms too. I have been looking for a good yoga class near me for several years but no luck. We'll be moving in a few months and I hope my new community center will offer Pilates or yoga classes...
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#10 Old 02-26-2007, 09:50 AM
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Quote:
Originally Posted by kristin_22 View Post

Have any VeggieBoard members been diagnosed with fibromyalgia?



I'm curious to read how other people that have it cope.



I was diagnosed with it about 6 months ago...but I don't know anyone else who has it nor have I ever met anyone that has it.



I don't suffer from fribmyalgia, though sometime I suffer by fibromyalgia, as I treat people with fms.

If you ask people, what helps, you run into lots of information on what didn't help. Treatments that help all aren't available.



(give some time to let it sink...)



but: (in the colour of hope)

there are treatments that help, but they have to be used in an individualized manner. Sometimes sports helps, some people would set themselves under pressure. Minimizing selfexploitation helps. Some people do well on drugs (most don't, however). Be critical with cns-active painkillers as they may get you addicted (though some people kill their pain effectively and do fine with them).

Very effective in selected patients is using behavioural concepts to learn to cope with fibromyalgia.



Try to find someone to help you with the treatment. Some rheumatologists do fine, others do better with patients suffering from rheumatoid arthritis.



If someone suggests, FMS is easy to treat, better run ...



Wish you all the best, stamina, and that goes for all of you.

Lothar

If I'm not answering quickly enough - leave a note on Twitter for @Rheumatologe
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#11 Old 02-27-2007, 01:37 AM
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Thanks to everyone that has replied!



I wouldn't say that I have been coping very well...I miss a lot of class and I sleep at least 12 hours a day. The pain is pretty bad...I can't afford to get massages. I try and walk outside during the day for exercise.



I also noticed the abuse/trauma connection...at least from what I had read about fibro sufferers. I always thought that it was interesting.



When I eat well I tend to feel better. It is hard to eat well everyday...and even the littlest bit of sugar/caffeine/artificial whatever sends me into pain/fatigue.
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#12 Old 02-27-2007, 10:31 AM
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Quote:
Originally Posted by kristin_22 View Post

...

When I eat well I tend to feel better. It is hard to eat well everyday...and even the littlest bit of sugar/caffeine/artificial whatever sends me into pain/fatigue.



It might not work for others, but try to keep a log of what is helping you and what's increasing your pains. Leave out the things that aren't good for you: as sugar/caffeine/artificial - I myself would miss coffee, but I wouldn't miss it so much as to pay for it with pain.

If I'm not answering quickly enough - leave a note on Twitter for @Rheumatologe
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