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Thread: Fibromyalgia

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    Default Fibromyalgia

    Well today I was diagnosed with fibromyalgia, although I was told that I may indeed have lupus... just in the early stages and not enough to give a "diagnosis." We all know how that is

    My ana was 1:320 and all but one of my other tests were normal, my red blood cells were a little low. We are doing some more testing for thyroid issues because of family history, but the doc doesn't really expect to find anything.

    My question is how many of you got the fibro diagnosis first, and later were given a diagnosis of lupus?

    Carrie

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    I was just the opposite. I got the Lupus diagnosis first. After my Lupus was downgraded to "Mild", I then got the Fibromyalgia diagnosis. Personally, I think that I had both all of the time, it's just that when the Lupus symptoms were not critical, the Fibromyalgia symptoms became much more evident.
    It is not at all uncommon for us to have both at the same time. The good thing about Fibromyalgia is that it IS NOT a disease of the joints, muscles etc. (like Lupus). But it is a chronic disorder characterized by widespread musculoskeletal pain, fatigue, and multiple tender points. Fibromyalgia mainly affects muscles and their attachments to bones. Although it may feel like a joint disease, it is not a true form of arthritis and does not cause deformities or loss of function of the joints. Instead fibromyalgia is considered a form of soft tissue rheumatism.

    Peace and Blessings
    Saysusie

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    Hi Carrie:

    I was dx with fibro about 17 years before they began to treat me for symptoms of an auto-immune disease, thought to be SLE but still not labeled as such, using UCTD terminology. Sometimes it is difficult to get a fibromyalgia diagnosis because after that they blame everything on it. This also included the rheumatologists. I had many joint problems for years that they continued to say was fibromyalgia only in the muscle. By the time they finally decided to look past that diagnosis, my knees were so deteriorated that I had to have two total knee replacements. Also my other joints are affected including my spine. Once they began to treat me with plaquenil, and MXT my symptoms began to get better something that never happened in the preceding 17 years no matter what I did to help myself. I am like you with only my ANA, SED, and CRP levels elevated, not enough to give a SLE diagnosis even though my symptoms meet the criteria.

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    I was basically told to get back to my exercise program, which was walking three miles a day five times a week until I REALLY started feeling bad. I have since put on 20 pounds, and the doc says I'll feel better if I get the weight off. Who has the energy to exercise and who wants to feel so bad afterwards if you make yourself do it?? I am taking trazadone to help me sleep and mobic for the joint stuff... but why mobic if fibromyalgia isn't a true arthritis? The doc says if I rested better I'd feel better, which makes sense, but he also said that he'd prescribe some phentermine (which we all know is a weight loss drug) to give me energy if I just couldn't get back to the exercise routine. Has anyone else ever heard of doing that?? I am starting to think he was saying that weight loss would solve all my problems... but I only gained the weight because I was feeling too sick to do exercise in the first place. :x

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    Fibromyalgia is not a true form of arthritis because it does not cause deformities or loss of function of the joints. However, the arthritic-like pain is very real and it is for this pain that you doctor prescribed the medication.
    Exercising is extremely important, both for Fibromyalgia and Lupus. It actually helps to relieve fatigue and pain. If walking three miles/day for five days/week causes you pain afterwards, then try walking two miles/day for three days/week. On the days that you do not walk, just do chair exercises (meaning leg lifts, shoulder presses with canned foods as weights, leg and arm scissors etc.). When you are washing dishes, do calf raises (up and down on your toes). When you dry off after showering, do leg and thigh stretches. Make everyday routine functions a type of exercise. The important thing is that you DO SOMETHING everyday to help your body to overcome some of your symptoms of fatigue and pain. Exercising also helps to build your immune system and hopefully help your medications to get you back to a form of normalcy.
    Please do try to get back to some form of regular exercise, it will actually do you much good!!

    Peace and Blessings
    Saysusie

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    Thanks for the advice, Saysusie... you guys are the best

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    I was diagnosed with FMS about ten years ago and then SLE in January. I think I had them simultaneously, but was simply undiagnosed for all those years. I work out twice a week with a personal trainer and that helps because she can usually gage if I'm overdoing it before I can. When I'm up to it, I also walk on my treadmill a couple of times a week, even if it is just slow and easy for a bit.

    I resisted the "working out will help you" theory for a LOT of years, but I'm slowly becoming a believer. The primary force behind that is that the more I workout the better I sleep the better I feel...

    Good luck with everything!
    AB

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    I do actually get a lot of exercise still... I work at a dry cleaners and I'm on my feet continuously walking 6-8 hours a day, carrying heavy clothes back and forth and then bagging them up. I guess I don't really consider it exercise since it's not technically an "exercise program," but it is a very physical job. I've walked over five miles a day many times, not to mention all the lifting. I like to wear a pedometer just to see how much I walk

    That's one of the reasons I haven't quit my job, because I know at least there I'm getting some exercise... as opposed to a desk job or something like it. I am convinced that getting back to my walking routine will definately help me though.

    Carrie

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    Intellectually I understand the need to exercise but physically I just can't seem to do anything. It absolutely exhausts me and then I'm down and out for a couple of days. It seems that anything more than a quiet life in my house produces debilitating fatique and a bright red lupus rash and overall body aches but mostly I just don't know how to get past the extreme fatique. Am I being a wimp?

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    I don't think so... by the time I get home from work I'm exhausted!! When I even try to do anything else I'm exhausted and ready for bed at 8pm... then I sleep every weekend away!!

    SO FRUSTRATING!!!!

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