Newbie with a few Questions

Discussion in 'Fibromyalgia Main Forum' started by Teflon, May 27, 2006.

  1. Teflon

    Teflon New Member

    Hi

    I was just diagnosed on Wednesday, but I've probably had it for 2 years. It looks like I developed it after a febrile illness, did any of you? I also have Crohn's disease - are a lot of you also dealing with autoimmune issues? Do any of you have any suggestions on where I can find some good information on FM? So is this a life long thing or do people get better? I'm 25 and I have a lot of plans!

    How do you deal with the stigma? I'm in the medical field and I lot of people I work with consider FM to be phony... I still do not know what to make of it.

    Also... any ideas about working shift work? And strenuous exercise?

    Thanks!

    Teflon
  2. mamie43

    mamie43 Member

    Hi. Sorry to hear of your diagnosis. I was diagnosed in 92', but I've had symptoms since I was in a car crash at the age of 15. Its been really severe the last 2 years and I'm now 46. I worked shift work in 89' and 90', and that was a big mistake. I became more disabled because of the sleep disturbance. I couldn't sleep after my all night shifts.

    My daughter is 27, and was diagnosed 3 years ago. She's working in telecommunications and raising a 7 year old but she's looking forward to quitting soon. Her hubby works so she hopes he'll be at this job for a long time.

    I suffer from Migraines, Irritable Bowel, Multiple Chemical Sensitivities, Depression, T.M.J, O.A. etc............the list is very long. The fibro pain and the exhaustion, are my two most severe symptoms. I was an avid exerciser doing weight training exercises and aerobics 5 to 6 days a week until 2 years ago when I became so ill that I was out of breath climbing a flight of stairs.

    You may hear or have already heard that deconditionning is one the risk factors or triggers of fibromyalgia. Thats just a lot of bull!!! Most of us are known as being perfectionnists or have a type A personality. I graduated college with a 4.00 grade point average. I know others who were mountain climbers, sky divers, tennis pros and the list goes on. Decondition should be taken out of the AMA and all descriptions of F.M and C.F.S..

    There are thousands of websites on the net and right now I'm fogging so I can't give you a specific one. Typing it in a search engine would give you many results.

    As far as the stigma, there has been physical scientific evidence of this disease found in the research labs. We have in our cells, anti-polymer-antibodies. Which proves we have an autoimmune disorder along with an abundance of substance P found in our spinal fluid which explains the intense pain that we deal with daily. Normals, have a lot less of this substance. You can educate your colleagues if they ask for proof!

    Ignoring them is another option. lol Our medical society ridiculed people with M.S. not so long ago. They would tell their patients it was all in their heads or treat them with exercises and valium.

    I hope you were misdiagnosed. Some are. Then they begin to preach to the rest of us sufferers how we must be doing something wrong.

    Good Luck,
    Mamie43
  3. Teflon

    Teflon New Member

    Thanks Mamie43 and Ouch

    Your words are educational and thought provoking.

    I too have chemical sensitivities. Is there anything that can be done about them? (I was allergic to nitrile gloves and the photocopier, the sun and something in the basement where I work). I'm not as sensitive now, but I still break out at odd times. I used some steroid cream but that just perpetuates the problem I think.

    Is the "mental" aspect of this disease a product of dealing with all of the negative effects of FM or is it caused by FM... or are they still trying to figure that out?

    Any info would be much appreciated.

    Thanks again,
    This board is cool!
    Teflon
  4. rachel432

    rachel432 New Member

    i also work in the medical field and i know what you mean about people in this field considering fm to be phony. i wish this weren't true but it seems to be a problem all over the medical field. honestly, i'm sad to say, how i have dealt with this problem is i don't tell people my diagnosis. this may be easier for me because i work through a nursing agency so i'm not in the same place all the time and i don't have a close relationship with my co-workers. it just seems like the path of least resistance. at times i feel like it's a cowardly thing to do, to basically hide my medical problem from the people i work with. however, it is my issue and from a privacy standpoint and also to reduce my strss i have found that it is the best way for me. i am not saying that everyone should do this. you may have some people you work with who your good friends with and you really trust them so you feel you can share this part of your life with them and gain support from them. if you can that's wonderful.
    it's a decision you'll have to make based on your relatioship with your co-workers.
    i hope this helps.
    rachel
  5. suzette1954

    suzette1954 New Member

    because we come together with this disease. I didnt work in the health field although Im a public health Educator myself. I worked in a high school when I was diagnosed and it was the hardest thing I ever did to leave work.

    My sister is battling Crohns now and it is truly awful for her. She has a very stressful job as a daycare director.And she doesnt have a supportive family.

    Ive always had severe allergies and I think I have IBS but I havent talked to my dr about it yet. I dont want all of those tests.

    Again, welcome to board.

    Suzette