FMS & CFS

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sunshinejenn
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FMS & CFS

Postby sunshinejenn » Sun Apr 20, 2008 11:10 am

I was diagnosed with fibromyalgia and chronic fatigue 2 years ago after having some blood work come back with a +ANA with a speckled pattern indicative of Lupus but further testing was negative. I have debilitating fatigue and pain, a sleep disorder, RLS, IBS, GERD, migraines, and I catch everything coming and going as far as colds and flu viruses. I was taking Lyrica and Cymbalta but didn't get any relief so I stopped taking them due to the cost. I take Lexapro, Mirapex, Prilosec OTC, Topamax, and Ibuprofen and/or Tyelnol.
A month ago another ANA was done and it came back with a higher reading with a speckled and centromere indicative of lupus and scleroderma. It was suggested that I go to a rheumatologist again for further treatment.
My question is.... Why is my ANA coming back with these patterns, my sed rate is always high, and yet there's nothing that helps me? I'm miserable and I'm at a risk to lose my job due to the time I have had to take off for this problem. I just don't know what else to do. Rheumatologists keep telling me it's fibromyalgia, give me drugs that don't work, and tell me to follow up with my primary dr.
Please help or give me some advice.
Thank you.

glenp
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FMS & CFS

Postby glenp » Mon Jul 21, 2008 3:42 pm

Sorry to say that there is nothing they can do. Research yourself and try what you think might help, the physicians do not know. You can go the micoplasma route, take antibiotics and see if that works, or try any of the other theories. You may also want to do a full thyroid test inclucing parathyroid. Sometimes there can be abnormalities in the heart that an echo gram with an oxygenated injection can pick up. There is a wonderful support group that chats privately on yahoo that you may want to join. Eddie Bauer is the moderator. I am sorry that no professionals answered your posting, but the genuine ones will tell you that they do not know. I think that we as sufferers have to stick together and it just might be one of us that finds something that really does help.
God bless

sunshinejenn
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Joined: Sun Mar 09, 2008 6:08 pm
Gender: Female

Re: FMS & CFS

Postby sunshinejenn » Sat Jul 26, 2008 1:35 am

Thank you for your response and my opinion as to why the "professionals" did not answer my post is that because they themselves do not have an answer, just as you said.
Thank you for your time though.

Jenn

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Debbie Miller, RN
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Location: USA

Re: FMS & CFS

Postby Debbie Miller, RN » Tue Jul 29, 2008 2:41 pm

Hello,
This site is made up of volunteer professionals. If we currently have nobody on staff with this specialty, the post is out there in case someone with expertise comes online and wants to tackle the questions. I'm sorry we weren't able to answer as you would have liked. Hopefully, as we grow, we will have even more available professionals. We encourage doctors and nurses to join out team so we can help more people without cost involved.

And, as glenp said, sometimes there are no answers. Even with our best medical knowledge and intuitive efforts, there is no clear diagnosis or treatment. We sometimes just have to experiment with different therapies, hoping that one of them will help alleviate the unpleasant symptoms. We continue to hope for better answers and I would love to one day see the Star Trek type diagnostic feature - wave the wand over the body and the computer tells all.

Good luck with this frustrating condition. CFS and FMS are some of the most exasperating conditions of all. In the meantime, moderate, regular exercise with stretching and excellent diet can help to some degrees.
The answers in online forums are for information only and are not intended to substitute for medical advice and care. Please see your personal health care provider for further evaluation of your individual case.

Debbie Miller, RN


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