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sotired73 - April 21

My doctor told me today that i have fibro. It is a relief to put a name to my relentless pain and suffering. As I am typing this my arm and my back are in tremendous pain. I have been dizzy and "lazy" for almost a year now. I have a very physical job and work with all men. They all think that i cant take the job, but i have been doing it for 10 years now. How do i make my coworkers understand that what i have is real and not just to get out of working. Also how do you show your kids that its not that you dont want to do things with them, you just physically cant?

 

JOEGIRL - April 21

Sotired73,, Sorry to hear you are in so much pain. Beleive me I know where you are coming from.
It is hard for other people to understand what we are feeling unless they are going thru it to.I wish I could tell you the right answers to your questions but I deal with the same thing. I look healthy so no one knows what I am feeling. and the pain doesn't show.
Maybe if you put a artical about Fibro on the bulltin board at work for your coworkers to read maybe they will have more compassion for you'A lot of people have never heard of it .I never did until my dr. told me what I had.
How old are your children? If they are old enough maybe they can read it also. I am sure someone here can give you better advice .Goodluck.

 

Fantod - April 21

I am so sorry to read that your diagnosis is fibromyalgia. You have a long road ahead of you in dealing with this syndrome.

It is a pretty tough proposition to make anyone understand what it is like to live with fibromyalgia (FMS). First of all, it is a syndrome as opposed to a disease that is recognised by the Center for Disease Control as well as the National Arthitis Foundation. You can get some accomodation at work with your doctor's support. The better educated you are about FMS the better you can explain it to others and deal with it.

Essentially, fibromyalgia is a short circuit of the central nervous system. Your pain receptors get stuck in the "on" position and stay there. The mechanism that causes the problem is not understood and there is no cure. FMS can be managed but it takes time and contstant tinkering with medication to find the right balance for each individual. I usually describe it as having the flu 24/7.

One of the biggest problem with FMS is lack of restorative sleep. You need REM sleep to allow your muscles to repair themselves from the activities of the day. If you do not get REM sleep, than your muscles become quite sore. You will need a sleep aid such as Amitriptyline to help with this problem. It is important to get plenty of rest wherever possible. If not, the more you "push" yourself, the worse your level of discomfort will become. As the old saying goes, "paybacks are h*ll" and that applies to FMS with a vengance.

Once you get on an established drug regimen things will be somewhat better. The best thing you can do is communicate openly with out whining (easier said than done :) )to your family about why you are unable to do some of the things you could in the past. When dealing with kids, especially younger children be very clear that you are not dying. Information eliminates speculation.

An dfinally, you did not say if you are seeing a rheumotologist. This is the doctor who is best suited to treat FMS. If you need to find one in your area, go to the National Fibromyalgia website and ask them for a local referral. Believe me when I tell you that not rheumys are created equal when it comes to FMS. There are still too many doctors out there that don't think FMS exists. You will have to be your own best advocate when it comes to patient care.

If you have further questions or just want to express your frustration, we've all been there. Let us know how you are doing and how we can help.
Take care.

 

sotired73 - April 21

Thank you guys so much for your advice and replies. As I am reading all of these post I see so many of my symptoms that i have had for over 18 months. I feel like I now have a place to go and be understood. I was in the doctors office today telling my husband i need glasses because my right eye is going blurry. Who knew that was a symptom. As a 35 year old mother of 2 ages 6 and 13 this sickness is so hard to accept and deal with. Hopefully i will be able to get the correct meds and get better. My children have already had to deal with me having a brain hemmorhage a few years ago, they dont need to have a sick mom again. Again thank you very much for being there for me to vent and get advice. Great Health To You

 

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