FM, MPS, CFS, IBS - Disability - Fibromyalgia Message Board

Glenda/Bill · 07-04-2003, 05:46 PM

Hello to All and a Happy 4th!! I am new to the board but was hoping to find some understanding from you guys that I can't seem to get from family members and friends. They just don't understand and want to constantly give me new "junk med's" to try. Anyone else out there have this problem?

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Glenda And Bill

debabc · 07-05-2003, 12:29 PM

Hi and welcome! What do you mean by Junk meds? Like supplements and herbal remedies? It can be so frustrating when the uninformed have "treatments" for you. It seems to me to be a kind of blaming the victim mentality. "If you'd just take this pill, adhere to this diet, exercise more, lose weight, gain weight........THEN you'd get well, right? I've been living with FMS, MPS for over 30 years, and you can just tell them from me to bug off!!

lol!!No really, there is no cure, and the you working in conjunction with your doc will do what you can to manage your condition, and no one can do that for you, no matter how good their intentions. They just want to see you get better. I have found that when you lose your health, you go through a grieving process similar to losing a loved one. And you keep cycling through the various stages of anger, denial bargaining, acceptance and depression. So tell them thank-you for your concern, but my doctor and I are working on managing my symptoms. Good luck!!

Glenda/Bill · 07-05-2003, 05:14 PM

Thanks! The "junk meds" are anywhere from drinking some herbal tea with a slimmy mushroom in it to taking
all sorts of vitamins. Plus they always say if you'd exercise! Please, I would love to if it weren't for this pain. They mean well I know but it really ticks me off cause they don't realize how sick I am. Its like FMS is just a name for something that is in my head. Well, the pain is real. Your right about greiving. Somedays I can handle it then other days I start to think that my husband will get tired of my illness and leave and no one will ever come see me cause when they do most of the time I am "sick". I had my grandsons for two weeks and they were the best little people in the world. They knew when Mimi wasn't feeling well and just made me laugh. My husband has his own illnesses and would never leave me because of that. He is very supportive and understanding.

Thanks for listening. How in the world have you handled this for 30 years? Do you have a great Dr. that understands you?

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Glenda And Bill

debabc · 07-06-2003, 06:20 PM

Great doc who understands me????Ha!!!Good one. Well I guess they do exist, but I have an HMO (Kaiser) and while my doctor does prescribe pain meds for me, she actually told me that FMS is not a disazbling condition (This while I was teaching from a wheelchair!!) The rheumatoligist I saw asked me a million questions, wrote it all down, then signed me up for a dozen classes. As if sitting in an uncomfortable chair listening to someone who doesn't have a clue telling you what to do is going to help! I really feel that I have reached a point of disability, but I know I will have to find a different doc to do that, I just haven't had the energy to go through that, and with Kaiser, you never know who you will get. I'd be afraid to get someone who doesn't believe in pain meds. I also am trying to hang on because I am the sole support of my family and don't think we could make it on disability pay. I've already seen by income cut by about 60% in the last 2 years due to my husband being laid off after 20 years at the same co., to make room for someone younger and cheaper. I've actually been seeing a chiroparactor through workman's comp because I injured my back on the job, and my experience there has been much more positive. I've really managed all these years because, one, I have no choice, and two, I've had a very supportive and understanding family who knows my limitations, even if they do drive me nuts in a myriad of other avenues!

Glenda/Bill · 07-08-2003, 02:30 PM

Start now collecting your information for the day you can file for disability. Keep a journal on your aches and pains and give them a # from 1 - 10 as the least to the greatest amount of pain. Theres a great chart on the internet that shows the body and gives the days of the week and you can circle the body part and the pain level for each day. It will help alot. Start collecting copies of your office visits to send too. It will make it alot easier.

My legs are giving me a fit again. This twitching stuff at night. It feels like an elec shock going thru my body starting from my navel. Its horrible, its right when I am about to fall asleep and then it makes my whole body hurt so I take half a pain pill to stop it but then that keeps me awake. I have been a zombie for the last three days.

My best friend is a teacher and she had knee replacement surgery last year. She got her a golf cart to ride around in at school. She is better but now her other knee is giving her fits.

Guess we have to hang in there. It helps to talk to folks like you.