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mrsmadtux Posts: 9
New Member
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Good afternoon all. Love your forums here & I'm excited to join. Today is my 12 year anniversary--of pain & fatigue. I worded my introduction similar to what one might say in an addiction recovery group, because I feel like a prisoner of a "reverse" addiction. My pain is addicted to me. I have empathy & support for people recovering from addictions...I really do. But I cringe at the idea that addictions are validated as real diseases. But fibromyalgia is only a "syndrome" and usually one that is considered "in our heads" and a result of needing more exercise. Here's the ironic part--people with addictions made a choice, at some point in their lives--to take that first drink, or hit, or pill. I don't remember ever, ever, thinking "Pain? Fatigue? Weight gain? Random weird twinges & itches? Wheel-chair? Yes, please!" Until we all stand together & demand recognition and respect that our pain is real, there can never be a cure. Mrs. Madtux ~Fibromyalgia, Undifferentiated Connective Tissue Disease (pointing to Lupus, Polymyositis, and Sjögren's Syndrome).
Mother of depressed & addicted teen.
Raven haired super-hero
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hatbox121 Posts: 10493
Group Leader
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Welcome to the group. The thing with syndrome, disease, etc is that people get hung up on that. The only difference between syndrome and disease is that in a disease there is a KNOWN cause and disease has known anatomic alterations. That's it. Anyway, sorry that you are having to deal with this as well. Hope to see you around. Amy~ “When you come to the end of your rope, tie a knot and hang on.” ~Franklin D. Roosevelt
Current dxes-Ehlers Danlos Syndrome, Mitral Valve Prolapse w/regurg, 2 other heart valves with regurg, POTS, DDD, scoliosis, various OA, polyneuropathy of unknown origin, SI joint dysfunction/fusion/collapse, chronic rotar cuff tendonitis, impingement syndrome of the shoulder, chronic bursitis in various locations, degeneration of the sternum, vertigo, GERD, FM, CFS, CPS, various bone marrow lesions, brain lesions of unknown cause, migraines, TMJ, vertically bulging discs, Raynaud's, anemia, tinnitus, high copper levels, borderline glaucoma, colon polyps, intermittent RLS, Vit D deficiency, depression, Eye accomodation disorder, Essential tremor, recurrent kidney stones, sacral spine disorder, inflammed tendons, and inflammation of spinal nerves(no specific dx).
I'm am not a dr. I am not a substitute for a dr. All advice I give is based on research and my personal experiences. |
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ushie Posts: 1928
Senior Member
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Welcome! I agree with the idea of "choice," but I haven't heard much personally about it, as I shut down anyone with the bad judgment to try that around me. |
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mrsmadtux Posts: 9
New Member
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Hello hatbox121, thanks for the warm welcome. I'm not hung up on the labels--it could be called Feelalikecrapitis for all I care. My point is how many people with invisible illnesses deal with constant frustration on the part of doctors and insurance companies. There are so many people who wait years for a diagnosis, submit to thousands of dollars of tests, only to have their doctors write them a Rx for Motrin 800mg & an anti-depressant. ILyrica commercials are at least trying to educate people, but they make sound more like a migraine than years and years of pain. Cymbalta was approved for fibro a year before Lyrica was (I take both) and they do have some info on their website, but none of their commercials specifically mention fibromyalgia. They say, "Depression hurts" and "Do you wish you had less lower back pain?" I think it just further reinforces the stereotypes that fibromyalgia is just a form of depression. I would just to see more research and better treatments and for their to come a day when no one has to be embarrassed to say, "I have fibromyalgia" because the person on the other end might hear "I am crazy as they come." Mrs. Madtux ~Fibromyalgia, Undifferentiated Connective Tissue Disease (pointing to Lupus, Polymyositis, and Sjögren's Syndrome).
Mother of depressed & addicted teen.
Raven haired super-hero |
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hatbox121 Posts: 10493
Group Leader
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I agree. MS was stigmatized for years before it came to be what people recognize now. Hopefully with more time, research and people speaking up it will become something people recognize for what it is. Amy~ “When you come to the end of your rope, tie a knot and hang on.” ~Franklin D. Roosevelt
Current dxes-Ehlers Danlos Syndrome, Mitral Valve Prolapse w/regurg, 2 other heart valves with regurg, POTS, DDD, scoliosis, various OA, polyneuropathy of unknown origin, SI joint dysfunction/fusion/collapse, chronic rotar cuff tendonitis, impingement syndrome of the shoulder, chronic bursitis in various locations, degeneration of the sternum, vertigo, GERD, FM, CFS, CPS, various bone marrow lesions, brain lesions of unknown cause, migraines, TMJ, vertically bulging discs, Raynaud's, anemia, tinnitus, high copper levels, borderline glaucoma, colon polyps, intermittent RLS, Vit D deficiency, depression, Eye accomodation disorder, Essential tremor, recurrent kidney stones, sacral spine disorder, inflammed tendons, and inflammation of spinal nerves(no specific dx).
I'm am not a dr. I am not a substitute for a dr. All advice I give is based on research and my personal experiences. |
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mabri Posts: 4708
Group Leader
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mrsmadtux, We are so glad that you found this group. I agree that there is so many ppl that regard all of us with fibro as: drug seekers, depressed, looking for attention, crazy, whiners etc. This goes for families, drs, nurses, friends, and the general public. What is sad to me the most is families. There are so many ppl whose husbands/wives, children, parents, that refuse to believe that we have the pain, fatigue etc that we suffer with. I mean, if your own family won't believe you and ridicules you, how can you expect the general public to accept it? I am all for education and speaking up for fibro. I again want to welcome you, and assure you that we are a very caring, loving, helpful and supportive group. We look forward to getting to know you better. Jump in whenever/wherever you feel comfortable. HUGS Please do not take anything I say as medical advice. I am not a doctor.
**Becky** |
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