Discussion in 'Fibromyalgia Main Forum' started by gypsy101, Oct 4, 2006.
please. Tell me what to expect. I'm scared.
Sorry you have FM but glad you decided to join us. This is a really nice place. If you stay awhile and read some of the posts you will find a lot of really good information.
To help us perhaps you could tell us a little bit about yourself or fill out your profile.
Let us know what kind of questions that you have.
I hope you come back and post some more.
Expect that you will have to listen to your body, and rest when you need it! Give up the idea of what you "should be able to do", and focus on what you can do right now to get better.
The most important thing to get is sleep. I went to a seminar about FM in California last March, and Dr. Teitelbaum stated that if you had to take 8 things to get to sleep, that's what you do. Apparently he had fibro and chronic fatigue in 1972, and he's established a protocol to get better. I spoke to him personally, and he seems to be able to maintain a pretty rigorous schedule. He's written several books and has a website.
It's also important to find a good doctor who will work with you. I'm taking lots of supplements, had my hormones tested, and am doing better in six short months. I feel that we can get better. You can manage this thing, just keep trying all different avenues.
Hi gypsy and a big welcome....
This is a greta site to come too for info, support or when your just in need of shoulder(s) to lean on.
There are alot of knowlegable people here and nice too.
So keep posting, we are here to help each other.
parent and function? I was so scared when I read that it's as debilitating as ra. Can a person with fms get better? Or kind of forget they have fms if they take ultimate care of themselves?
I know that you sound cofused and scared right now. So much to take in.
I have worked with my FM have two girls(see my Bio) and yes some days seem so difficult yet you will learn to pace yourself according to the way you feel. Some days I do say know, rest more, and not push it as I know this will cost me...
Right now you may never think there will be a normal and maybe the "normal" will have changed as it has for most of us. Its important to try and get restorative sleep, everyone here will probably tell you, no sleep...equal fatigue, increased pain and a lower tolerance level both physically and emotionally.
What has your doctor advised, has he put you on meds or suggested supplements. A good start is a high complex B vitamin, Eating healthy non processed foods, using your tuba as much as you want to relax tight muscles. You may want to look into mediattion tapes.
There is also a great book by Devin Starnyl Coping with Fibromyalgia and Myofascial pain a survuavl manual.
I bought the year I was diagnosed, it helped and made sense.
keep posting, and rember Breath...Things will come together.
Hugs for wellness,
Do you live in PA? Your experience sounds exactly like mine when I was told I had FM. Was wondering if it was the same doctor.
I'm calling a massage place today. I went once and I'm not sure if she knows about those trigger points, but she was really nice adn may try to figure it out for me.
I'm kind of freaked out myself. I was diagnosed about two weeks ago. I just couldn't take the pain anymore. The doc did a bunch of blood tests to rule out lupus and rheumatoid arthritis. Those all came back fine. I'm glad, of course, because those diseases can cause organ and skeletal damage.
It is the most bizarre syndrome I can imagine, though. For example, yesterday I was in so much pain- my neck, shoulders (always the worst), ankles, knees, wrists, hands, etc., and I was really tired. I didn't even have enough energy to do a light workout. Today I am fine, nearly normal. I rode a stationary bike for 25 minutes at 90+ RPM and did a number of weight machines. There is no predicability to this. I don't know if I am just at the beginning of FM and I am going to get progressively worse or if it will continue to be this up and down kind of thing. If I do get worse, how bad will I get? I have a very active life- I'm a teacher, wife, mom, and an auxiliary police officer, and I am into fitness. I'm so afraid this will turn me into an invalid or something.
About a year and a half ago, I had something called Fifth Disease, which is a virus. I got it from one of my students. It's also called Slap Face Disease in kids, because in children it causes a rash on the face that looks like the kid has been slapped. Well, in adults, this disease settles in the joints. In my case, it caused severe shoulder and neck pain, a rash on my legs, and fatigue. It disappeared eventually, although my neck has been rather tender ever since (I thought this was due to arthritis at an incision site that I got as an infant to correct a birth defect). Well, the symptoms came back, and now I have FM, and the worst pain is where it was when I had the Fifth Disease- it's also called Human Parvovirus, which I forgot to mention. I believe that somehow this virus made me susceptible to the FM, but I have no proof.
In case anyone wonders, I'm 48 years old. I guess this is slightly older than most people who get a diagnosis of FM. I'm a vegetarian and am of average weight. My doctor prescribed Naprosyn, but it's metabolized in the liver, which scares me. I stopped taking it, because it's an anti-inflammatory, and I can't figure out why I'd take an anti-inflammatory, if my blood tests showed no inflammation in my body. I'm taking Tylenol Arthritis, when I need to. I was already on two anti-depressants, Lexapro and Trazedone (the latter is wonderful for sleep, and it's nonaddictive), and I take Allegra D, Allegra, and a nasal spray for severe allergies. I take hycosomine when my irritable bowel acts up (yep, that came back- I had it a lot in my "younger" years). Anyhow I'm probably boring you all to tears, but that's my story.
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