ask: Has anyone out there been suffering with "Fibromyalgia" longer than a couple of years? I have been for 5. Help.
I was diagnosed with Fibromyalgia about five years ago and have had very little relief since. I have seen numerous Drs and all say that this is Fibro. I hurt all the time and very little seems to help. Does anyone out there know what to do?
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Are your doctors absolutely sure it's fibromyalgia? Have you been tested for other conditions?
The reason I ask is because, before my doctor was able to diagnose me for lupus, he tested me for fibromyalgia to rule that out (among other conditions). The two conditions are completely different; lupus is an autoimmune disorder, while fibromyalgia is not. However, lupus can be mistaken for the other. I get the burning leg sensations; sometimes my legs feel like lead.
I'm just hoping your doctors are looking at other possibilities and that you'll finally get some relief.
Fibromyalgia vs lupus http://www.webmd.com/video/exercise-at-your-desk-overview
Robert Bennett, M.D. on fibromyalgia and lupus
May 13, 2008 - 5:43pmhttp://www.myalgia.com/lupus.htm
This Comment
Thank you very much for your information. Yes, I have had all the tests, even for Lupus. I still think there is something they are missing. How do I find a Dr. who wants to find out as much as I do? I have had a run of bad luck with docs.
June 26, 2008 - 6:01amI was told that there are no tests for Firbomyalgia. All blood work was done and nothing came up. Therefore, I received a dx for fibro.
March 28, 2010 - 6:08pmI have also heard that some women who are diagnosed with fibro may actually have another condition. While your doctor is also your first line of defense when it comes to handling your condition. You may also try the following resources:
Advocates for Fibromyalgia Funding, Treatment, Education, and Research
P.O. Box 768
Libertyville, IL 60048-0766
Phone: 847-362-7807
Fax: 847-680-3922
Email: info@affter.org
Website: http://www.affter.org
Fibromyalgia Network
P.O. Box 31750
Tucson, AZ 85751-1750
Toll Free: 800-853-2929
Website: http://www.fmnetnews.com
National Fibromyalgia Association
2200 N. Glassell Street, Suite A
Orange, CA 92865
Phone: 714-921-0150
Email: nfa@fmaware.org
Website: http://www.fmaware.org
National Fibromyalgia Partnership, Inc.
P.O. Box 160
Linden, VA 22642–0160
Toll Free: 866-725-4404
Fax: 866-666-2727
Email: mail@fmpartnership.org
Website: http://www.fmpartnership.org
National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS)
Information Clearinghouse
National Institutes of Health
1 AMS Circle
Bethesda, MD 20892-3675
Phone: 301-495-4484
Toll Free: 877-22-NIAMS (226-4267)
TTY: 301–565–2966
Fax: 301-718-6366
Email: NIAMSinfo@mail.nih.gov
Website: http://www.niams.nih.gov
National Center for Complementary and Alternative Medicine
National Institutes of Health
P.O. Box 7923
Gaithersburg, MD 20898
Phone: 301-519-3153
Toll Free: 888-644-6226
TTY: 866-464-3615
Fax: 866-464-3616
Email: info@nccam.nih.gov
Website: http://nccam.nih.gov
Social Security Administration
6401 Security Boulevard
Baltimore, MD 21235
Toll Free: 800-772-1213
TTY: 800-325-0778
Website: http://www.ssa.gov/disability
American College of Rheumatology (ACR)
1800 Century Place, Suite 250
Atlanta, GA 30345-4300
Phone: 404-633-3777
Fax: 404-633-1870
Website: http://www.rheumatology.org
Arthritis Foundation
P.O. Box 7669
Atlanta, GA 30357-0669
Phone: 404-872-7100
Toll Free: 800-283-7800
Website: http://www.arthritis.org
They may offer some tips for dealing with the pain that accompanies fibromyalgia. Are you taking any medications? Please update us.
May 13, 2008 - 8:00pmI was FINALLY diagnosed with Fibromyalgia 15 years ago. I know now that I have had it longer. I have a lot of other conditions with it: Chronic Fatigue, Srojens (autoimmune), Restless Legs, Irritable Bowel Syndrome, poor short term memory, Arthritis and Insomnia. I also have Migraines, Vulvodynia, Esophageal Reflux, Hypertension and had a total Hysterectomy 24 years ago at age 31. Over the years I have become worse; at 55 I feel worn-out. I am now applying for SS Disability because I lost my 5th job of 6 (in 3 years) because of the combined symptoms. I am hearing about Thyroid therapy. Would that be a smart direction to pursue for help? THANKS!
June 24, 2008 - 10:41amI have all the symptoms you have and have been diagnosed with all the symptoms as a seperate entity. But after reading everyone's information, I have concluded that all the symptoms are related to fibro. Good luck with trying to get disability for this condition. I was declined 2 times. Keep in touch with me to let me know how you are fairing with disability.
SS administration indicated to me that this is a curable anomily. Can you image being told that? I don't think anyone there is or has suffered from this. At least they are not recognizing that it is dibilitating.
The only reason that I'm still working is because I work for my mother-in-law and can stay home on days that I can't go in without getting fired. If I had to work somewhere else, I know that I would be in the same shoes you are.
June 26, 2008 - 6:13amHi Steph - i cannot believe that you cannot get disability for fibromyalgia. I have been suffering now for 2 years and just know exactly what you are going through. I have been working for my company for 19 years and they would easily board me because of my pains but unfortunately being a single mother with a daughter doing 7 years varsity, no student loan, no bursary, no help and a large bond on my house i cannot afford to take boarding. I suffer endlessly with pain and sometimes dont want to get up once sitting or lying down. At night my legs throb all nite from pain but i just have to put up with it. I wish i could find a cure or medication to help with the pain.
January 9, 2012 - 12:33amI Myself have many of the same symptoms that you have described.. I have not tryed to get any type of disability..
August 21, 2010 - 12:32pmI was diagnosed 7 yrs ago, still feel at a loss and confused.
I have also recently linked Fibromyalgia to agent orange... and plan to do extensive research.
Any help would be greatly appreciated.
Tiffany - You can find information on what's covered at the link below. The VA covers 11 diseases presumed to have been caused by Agent Orange, but fibromyalgia isn't one of them. http://www.workworld.org/wwwebhelp/veterans_affairs_va_benefits_disabili...
In your research you may want to take a look at peripheral neuropathy which is covered. This causes damage to the peripheral nervous system, which consists of the nerves that transmit information from the central nervous system to the rest of the body. The peripheral nervous system carries sensory messages and motor impulses. When this system is damaged, it can cause numbness and weakness in the limbs and nerve pain.
We wish you the best. Pat
August 23, 2010 - 5:31pmHi everyone. Oh my gosh, I was diagnosed with fibromyalgia back in the
December 13, 2008 - 3:04amearly 1980's when it was still called fibrositis. Have been treated for it since then. I have been tested for lupus as well as ms and a number
of other diseases. My laundry list of other illnesses is just too
much to go into in one post.
My fibromyalgia has gotten worse over the years, has anyone else experienced worsening of the actual fibromyalgia/trigger points.
Also, are there any people who have many more trigger points than
the classic ones on all the charts? I have trigger points where
no one has heard of. This is a very painful condition. From
what I understand it is recognized by Social Security Disability now.