How does one find a doctor that will listen?
- lasaluv
- Jausten
- ______MarcellaGM
- LonnaG
- lasaluv
- Dan_Ellsworth
- lasaluv
- Dan_Ellsworth
- Dan_Ellsworth
- Dan_Ellsworth
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» lasaluv - Barb Takeda This site is a gold mine. I too suffer with Fibr
Barb TakedaThis site is a gold mine. I too suffer with Fibromyalgia. Blinding headaches, leg, ankle, foot pain that prevents me from walking very far or standing for more than about 5 minutes.
Cynthia Webber, it was wonderful to read that you have been successful in receiving disability. I am on the verge of going on disability as I cannot cope with the constant pain as well as the demands my job makes on me. I miss about 15% time at work on a consistent basis and if I don't do something soon, I think they will probably fire me. I would love to talk to you more if you don't mind. You can call me at work 800-263-1188 X3787 or send me your phone so I could call you.
What a joy to find others who are going through the same thing I am. I could go on for ever with this note, but for now I'll stop and say "Thank heavens, I found this site!"
Barb
-- posted by lasaluv
» Jausten - Kris, Your story sounds like your doctors are definitely from
Kris,Your story sounds like your doctors are definitely from a different planet than the rest of the world. They actually made you worse with their "treatment" of you. I certainly hope that you can find a doctor who listens and actually knows about fibromyalgia. I'd probably have reported all of them to their medical associations for malpractice. Not that it would do any good, but just letting someone know that there are doctors out there who haven't a clue about fibromyalgia would have made me feel better.
Marcella, I agree. Lawyers are sometimes needed in order to help us get what we need. It is sad, but until the medical community recognizes fibromyalgia as a disabling condition, we'll have to either fight for our rights or get a lawyer who will do it for us.
Barb, I believe that I obtained my permanent disability due to the strong letters that my doctors wrote. The key words that a doctor should write are: "This patient is unable to work at any job at this time." It is firm, to the point, and doesn't say that we may never work again. I was on Worker's Compensation for a back injury, and they didn't recognize my fibromyalgia any more than I did. It was during my 5 years of denial of my FMS that I continued to work and have back injuries. I was accepted for longterm disability because the hospital where I worked said that it was cheaper for me to be on longterm disability than to create a nursing job for me which didn't require lifting, or direct patient care which was very stressful. They could have created a teaching position for me, and I gave that information to Longterm disability. Permanent disability has to be applied for in Canada after someone has been on longterm disability for a certain period of time. I now receive permanent disability and longterm disability adds to what they give me to make it 2/3 of what my salary was 3 years ago. Not as much money as I'd receive if I could work, but it is better than nothing. And some of get nothing.
I believe that a lot of it has to do with how our doctors write about our condition, plus how we write about it. They have to be the same. If I said I couldn't work, and my doctor said that I could work part-time, it wouldn't work.
I'll email you privately rather than post a phone #. Not all 800 #'s work in Canada. Just another strange thing about this country that I live in..*g...But I must admit that the health care here has been good to me.
Cynthia
Jausten
Suite 101 Contributing Editor: Fibromyalgia
-- posted by Jausten
» ______MarcellaGM - I am off to see the my doctor tomorrow and I plan to be armed wi
I am off to see the my doctor tomorrow and I plan to be armed with information on Fibromyalgia plus my pain diary. Wish me luck. I am so glad I found this site. MarcellaPacific Northwest Garden
-- posted by ______MarcellaGM
» LonnaG - Lonna Grell I am trying to learn as much as possible about FIbro
Lonna Grell I am trying to learn as much as possible about FIbromayalgia. I was told 10 years ago I had a connective tissue diease. That was before it had a name. I need a doctor in my local area who understands this diorder. I live in Bend Oregon. Also support groups in the Bend/Sunriver area. e-mail me at douglasg@cmc.net Thanks Lonna-- posted by LonnaG
» lasaluv - Barb Takeda Cynthia, Thks for your reply both here and my em
Barb TakedaCynthia, Thks for your reply both here and my email. Your information was really helpful.
After reading through all of the discussions here, I feel right at home already. I agree we all need to fight for FMS to be accepted as a REAL illness, however I have been fighting with my company for over a year now to try to get job sharing so I don't have to go on disability. They refuse, so I don't feel like I have any alternative at this point. I'm missing so much work due to the chronic pain, fatigue and that flulike feeling FMS patients cope with almost daily.
I don't need to tell any of you how stressful these types of situations are. I find any types of stress put me down for days on end.
Anyhow, great to join this discussion group.
Barb
PS Has anybody heard of Guafinesin being used to reverse FMS?
-- posted by lasaluv
» Dan_Ellsworth - Guafinesin, on search engine "Metacrawler", yields a few entries
Guafinesin, on search engine "Metacrawler", yields a few entries but I saw no connection with FMS in any of them. Anyone else?Dan Ellsworth (e-mail, bio), Editor, "Christianity - Protestant"
-- posted by Dan_Ellsworth
» lasaluv - Barb Takeda With regard to Guafinesin, I discovered this on
Barb TakedaWith regard to Guafinesin, I discovered this on the Web at the site of a Dr. Devin Starlanyl. There isn't a whole lot of documentation to support his claim. There was a double blind study done which said women on guafinesin and placebo both reacted the same. So I'm not sure upon what data this dr bases his claim. This is why I wondered if anyone had any other information.
I spoke with my rheumatologist yesterday who made an interesting point. "If this actually reversed FMS", she said, it would be more widely published instead of just on one small site on the Web".
-- posted by lasaluv
» Dan_Ellsworth - Barb Takeda: Your furnishing of an unusual name like Dr. Devin
Barb Takeda: Your furnishing of an unusual name like Dr. Devin Starlanyl resulted in metacrawler finding some sites, one of which led in two clicks to a Web page on guaifenesin therapy. Interesting general quotes include "With most people, guaifenesin therapy seems to result in remission of symptoms. This is not a cure. The symptoms will reappear if you overdo." and "Point 4: The response to guai is not a placebo response. Placebos do not result in dark, smelly urine that cleans iron stains off the toilet bowl. Toilet bowls do not respond to placebo effect."Dan Ellsworth (e-mail, bio), Editor, "Christianity - Protestant"
-- posted by Dan_Ellsworth
» Dan_Ellsworth - Barb Takeda: Your furnishing of an unusual name like Dr. Devin
Barb Takeda: Your furnishing of an unusual name like Dr. Devin Starlanyl resulted in metacrawler finding some sites, one of which led in two clicks to a Web page on guai.... therapy. Interesting general quotes include "With most people, guaifenesin therapy seems to result in remission of symptoms. This is not a cure. The symptoms will reappear if you overdo." and "Point 4: The response to guai is not a placebo response. Placebos do not result in dark, smelly urine that cleans iron stains off the toilet bowl. Toilet bowls do not respond to placebo effect."Dan Ellsworth (e-mail, bio), Editor, "Christianity - Protestant"
-- posted by Dan_Ellsworth
» Dan_Ellsworth - I ... I ... guess I st-st-stuttered that time. <i>Dan Ellswor
I ... I ... guess I st-st-stuttered that time.Dan Ellsworth (e-mail, bio), Editor, "Christianity - Protestant"
-- posted by Dan_Ellsworth
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