Fibromyalgia Support Group
You're not alone in your pain. Fibromyalgia is a condition that can be difficult to diagnose and manage. If you're trying to cope with pain throughout your body, sleep problems, general fatigue, or other common fibromyalgia symptoms, you're in the right place. The community is here for you to talk about therapies and share your challenges.
Well hi there,
I have recently been diagnosed with Fibromyalgia. Or, should I say, "officially" diagnosed, by a rheumatologist. I have been suffering for the last three years with crushing fatigue, sleep problems, and pain. Due to all of these factors it became increasingly difficult to work, and finally last spring had to give it up. Now at home, life is settling down a bit for me...and I have started to realize that I need to listen to my body.
The problem is, that for the last three years, none of my complaints were recognized, and sometimes not even taken seriously. Because I was peri-menopausal, the doctors believed that all my symptoms were caused by hormonal changes, imagination, or depression. When consulting several different doctors on several different occasions, at a medi-clinic, I was told to "just take more sleeping pills" after complaining of severe and prolonged insomnia. My crushing fatigue was written off as "hormonal" or " depression", and none of the doctors were able to link my symptoms to Fibromyalgia.
Finally, a kind collegue arranged a consult with a psychiatrist for me. After a thorough screening, I was diagnosed with Generalized Anxiety Disorder, and after a few months of observation, with Fibromyalgia.
Well, I need to shorten my story here, because of FM can only be on the computer for as short while, get burning eyes and muscle pains.
My anger: Why.....in three years.....no doctor even considered the possibility of FM???
My confusion: the Rheumatologist says that I need "to get over" this through exercise. I am failrly active, but cannot exercise longer than 10 minutes, or will pay for it with a terrible flare!
I am sure that many of you have experienced some of what I have been going through. It would be great to hear your stories, advice and encouragement...
Thanks,
Scootermom.
I have recently been diagnosed with Fibromyalgia. Or, should I say, "officially" diagnosed, by a rheumatologist. I have been suffering for the last three years with crushing fatigue, sleep problems, and pain. Due to all of these factors it became increasingly difficult to work, and finally last spring had to give it up. Now at home, life is settling down a bit for me...and I have started to realize that I need to listen to my body.
The problem is, that for the last three years, none of my complaints were recognized, and sometimes not even taken seriously. Because I was peri-menopausal, the doctors believed that all my symptoms were caused by hormonal changes, imagination, or depression. When consulting several different doctors on several different occasions, at a medi-clinic, I was told to "just take more sleeping pills" after complaining of severe and prolonged insomnia. My crushing fatigue was written off as "hormonal" or " depression", and none of the doctors were able to link my symptoms to Fibromyalgia.
Finally, a kind collegue arranged a consult with a psychiatrist for me. After a thorough screening, I was diagnosed with Generalized Anxiety Disorder, and after a few months of observation, with Fibromyalgia.
Well, I need to shorten my story here, because of FM can only be on the computer for as short while, get burning eyes and muscle pains.
My anger: Why.....in three years.....no doctor even considered the possibility of FM???
My confusion: the Rheumatologist says that I need "to get over" this through exercise. I am failrly active, but cannot exercise longer than 10 minutes, or will pay for it with a terrible flare!
I am sure that many of you have experienced some of what I have been going through. It would be great to hear your stories, advice and encouragement...
Thanks,
Scootermom.
This illness can be tricky to diagnose in that the symptoms vary and other illnesses have some of the same symptoms, so there are other things to eliminate as 'wrong'. I do agree that it is frustrating. I probably had it way before I was dx'd, too. I used to get flares that would last for a couple of weeks or so and then I would get better. It wasn't until I had a bad injury a few years ago that the fibro for me became a chronic flare that I just have not been able to get out of.
There is a recent post here on The Five Stages of Fibro. It's a good post, and one of the stages is listed as Anger. You may want to look it up just to realize that what you are feeling is perfectly normal :)
Another good place to read other's stories and what has helped them is The Fibro Puzzle. If you go to the Group tab (menu item across the top) click on that and then in the Search window type The Fibro Puzzle, it will bring up the place where lots of us posted our info.
I'm glad you are here! It's a really good board with lots of caring people and knowledge.
Allow yourself your frustrated anger, but then realize it won't change anything... time to research, study up and learn all about your illness and what it is you can do to help yourself. (and forcing excess exercise ain't it! LOL) As you read the wisdom on this site, you'll fine more and more of what works for you...
Welcome to the 'family' here...
I'm glad you finally got diagnosed and are no longer doubting how not "normal" your symptoms are for menopause. Your symptoms are real and life altering. No question about it.
You have every right to feel angry and confused. It's a crazy confusing disease.
There are many wonderful supportive knowledgeable people here ! Hope u find it as helpful as I have.
Now, after my diagnosis, I can look back at all those times that I thought I was sick with the flu.......they were flares. That was over one year ago, and I used to get some good days in between. I am worse now, but have a few hours on most days that I feel good enough to go out. I am learning to pace myself.
I will be doing a lot of research, that is for sure! I used to work in health related research, so I have an understanding on what to look for in medical journals, articles etc.
My next appointment is with a physio clinic, for FM rehab, as referred to by the Rheumatologist. I am open for new ideas in regards to staying fit, but have encountered this idea of "exercise every day for 3 hours and you'll be cured..." I'll wait to see what they reccommend.
So sorry about the diagnosis, but glad you have found DS....it is a wonderful place for info and support! It has been a Godsend for me.
Like you, my fibro was undiagnosed for a long time....for me, 20 yrs....during that time, I learned, through trial and error, many things that would help or aggravate my symptoms....It will be the same for you, as none of us is exactly the same....treatment don't affect fibro patients the same way....
I'd suggest keeping a daily diary of everything....what you eat, how much you sleep, how much you exercise, pain levels, fatigue levels, etc....look for patterns. For ex, I found eating processed sugar sends me straight into a flare....I found that if I wake up and my left foot is numb, it will be a bad day...You get the idea.
Thanks, sunsetzzz, for the tip on the Fibro Puzzle....Its a sub-group we started so newly diagnosed could read lots of our stories, located all in one place....please check it out.
As for the exercise for three hours every day and you'll be cured.....I've been a "gym rat" for many years....not quite to that pace, but two hours, four days a week....treadmill and heavy weights for 15 yrs....not a cure for me. My rheumy recommended Yoga, Pilates, or swimming after I was diagnosed. Those are good exercises that help fibro patients keep stretched and loose, and don't put too much stress on the body....
You've hit the nail on the head with the "listen to my body" idea....it is critical....And do research on diet, supplements, etc.....There are lots of things you can do to help ease symptoms.
Again, welcome, and hope we can help!
HUGS from down south :)
Ditto Tiger's comments!
I exercise 45-60 min a day 6 days a week, but alternate yoga and mat workouts with weights and cardio, to stay lean, flexible, and keep my baseline health good. (As much as possible!) It does make flares more bearable, I will say that!
I got lucky with my dx of FM. My GP was a crank, but referred me to a rheumy who happened to himself have a soft tissue disease... So he took my symptoms seriously and had heard of fibro!
Good luck!
Hugs,
Leo
Exercise is a tricky beast. It DOES help - BUT it takes a while and at times it is infuriating and no doctor will tell you this. I had to stick to a 10 minute exercise regimen and experiment with what worked for me for about a month before I started to get pain free results. What works for you may not work for anyone else. I know people who benefit from stretching and light weights - however I don't. I do best with higher paced smooth cardio and I'm pretty much addicted to the elliptical because it's smooth, it works both my arms and legs and I get a good work out. I just got back from one not to long ago, After 2 weeks of excruciating pain from moving and while driving to the gym I was like "I hate this, I hate this, why am I doing this" I am so glad I decided to go. Now I can do 20-30 minutes on the elliptical and I am starting to run again and it does make a difference.
You may want to see if you can get into some sort of physical therapy. I found out I also have myofascial pain syndrome which can only be treated with trigger point therapy because there are physical knots in our body. If you have MPS, then exercise will not help you and you gotta get those knots treated.
The reason why I started exercise was a.) modern medicine wasn't doing anything for me and b.) my physical therapists said it would be worth it and c.) I figured I'm already in pain, what will it "hurt" if I give it an honest try for about a month or two? Can I really hurt anymore than this?
So work with what you can do - if you can only do 10 minutes, do not push yourself more than that! Try the elliptical on very very easy for 5 minutes, and if you think you can do more, then go for it but don't go past your limit. Another good machine is the recumbent bike because you can sit and just move your legs. I use that when my back hurts. Or try yoga. I know how hard it is to want to exercise, and I know how even harder it is to try it when you're in pain. It might take you a good 2 weeks to a month of exercise before it starts to "click" and you feel the benefits. how frustrating is that? Honestly, the 2 weeks of pain I felt through exercise was worth it for the manageable pain levels I have now. Am I completely pain free? No, I just had a bad flare from moving and some personal things going on that were extremely stressful. But I am noticing I recover from flares much quicker than before. So I am telling you this to say, don't remove exercise from the table quite yet, but don't expect the doctors to tell you how or what you should do... because the doctors have no idea, sadly.
Also, look into vitamins and supplements. D-Ribose makes working out feel really good. Today because I was in a lot of pain waking up I took 10 mgs with soy milk and I know it helped me get through the work out and make me feel better. Magnesium is good for head aches. I take omega 3s, evening primrose oil, folic acid, vitamin B complex, biotin, resveratrol, CoQ10, and potassium. I am also finding that herbs like skullcap, valerian and kava help with the pain, or at least help me feel less depressed. I tried hops the other night because I am trying to find an alternative to xanax and the hops made me feel pretty relaxed. We have to manage the stress with the fibro because that causes pain too.
Well I don't know if any of this helps, but yes, we all understand how frustrating this is! I think its really insulting when these doctors say "exercise" and nothing else. A lot of my healing has come from this forum as well as my own research. Good luck to you!
I love the elliptical also. I was 'warned' against it when I first tried it out, but I find it to be MUCH easier than the bike. My problem lately is that my entire left leg goes numb and by about 15 mins I can't do it any longer or I'm not stable to walk after. But that is far and away the easiest machine to get a good cardio work out in the least time.
Glad you found us
Allow yourself to feel as much as you can for the things that are done to you incorrectly, your loss of independence and just plain dealing with the pain and torment you go through. But try to keep smiling as much as you can. It is easy to get depressed and stay there.
This support group is great and you will find it is easier to talk to someone who understands!!!!!!!
Your story is, unfortunately, all too typical and it totally sucks that things are the way they are. You are so right to be angry, but to what end, eh? Don't waste your energy. You need it for more important things.
May I suggest yoga or tai chi along with meditation to help you learn to listen to your body. Being smart about your diet is also helpful. I've found the Zone diet to be quite beneficial.
...and hang out here. I can't begin to describe how much helpful information and support I've received from other DS members.
Welcome
I also was overlooked by my doctor for many years. This was just not for fibromyalgia either, but for many conditions. However, I realized that I was expecting too much from my doctor. There are so many conditions out there that sometimes a doctor is unable to pinpoint a diagnosis. This can be the case with a primary care doctor. Since fibromyalgia is hard to diagnose and the diagnosing criteria does not involve specific tests or bloodwork, it can be hard for a doctor to say that it is fibromyalgia. However specialists are more familiar with it of course.
Exercise does hurt us, however light exercise will help us in the long run....things like short walks, stretching, stationary bike, water therapy and some kinds of physical therapy.
I have been trying to do more walking and it has helped me so much. At first it was so hard to get motivated to do it but once I did it, I realized how much it has helped. Stretching helps so much too. I try to stretch as much as possible.
I have heard that warm pool therapy is awesome for fibromyalgia. One of these days I am going to get around to signing up for it.
You will learn a lot on this forum, but remember that some things may or may not work for you. You just have to try and see what helps you the best.
HUGS
Is allot of caring and supportiveness as well as helpful tips & info. here.
I know that many of us shared the delay in diagnoses with this. But it is not something easy to diagnose at this point not having a difinite test like most other things. And unfortunately not the easiest of things to treat.
Although I agree that excercise is important I know that it also can be difficult and have to find your own pacing and balance.
Start out slow find what works best for you whether it be gentle stretching excercise, aqua therapy, yoga, walking etc,,, and listen to your body and take breaks as needed.
What works for one does not always work for another and is allot of trial and error to find things to help cope and manage the pain.
If all you can do is 10 minutes of excercise right now is ok... maybe later can increase it or do 10 minutes 2 x's a day ...
I wish you the best in finding the best treatment plan you can to help manage your FM.
take care
gentle hugs
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