New here/diagnosed 5 years ago - Fibromyalgia Message Board

anstar · 01-25-2005, 02:43 PM

I've just found this board and am grateful to have found others who can understand. I am not a hypochondriac. Even having a diagnosis of fibromyalgia isn't enough for some people. I hurt worse in the winter and seem to be fighting depression more now.

I stopped taking all the medicine when I realized that I was still in pain, only in addition to it, I was dealing with the side effects. I've tried St. John's Wort but didn't have any luck with it. About all I take now is Melatonin. I take it every night, hoping for restorative sleep so I won't hurt so much. It worked for a while, but now I'm afraid I'm becoming used to the dosage. I've had to up it considerably. I'm up to 1200 mcg's a night.

I've recently been told I have something called de Quervains, which has caused severe pain in my thumb. I ignored it for months because I assumed it was related to the FM. Turns out to be caused by repetitive stress.

I was just wondering what things people in here have tried that actually worked for them and how you cope with the constant pain.

luv2read · 01-25-2005, 05:37 PM

Uh, hi there. I don't mean to sound rude...but, what do you mean by having a dx of fibro isn't enough for some people??

I know you're not stating anyone in particular, but I would like to defend those of us who DO search for other dx's besides fibro.

Let's see....I was dx'd in 96. On one hand I had dr's believing in fibro. , on the other hand I had dr's not believing in fibro back then.

Even last year, my emg dr told me fibro was a waste basket dx.
This year my psychologist tells me that fibro is real and that chronic myofacial pain syndrome is the same as telling someone they have fibro.

I sleep soundly. If I wake up to go to the bathroom...I'm back asleep as soon as my head hits the pillow. (not so with many fibro people)

The only pain med that I take is tylenol (and that's maybe 1 a month)...And now effexor for jaw clenching. This is very unusual for someone w/ fibro to not be in such pain.....

Nobody called you a hypochondriac in the first place.....but some of us who do have more unusual symptoms than most fibro's and wish to make sure the dr's aren't missing something don't think of ourselves as hypochondriacs.

I myself do not have any secondary issues with my fibro (like arthritis, lupus, ms, mg,....I was not in an accident, nothing fell on my head, etc) I think that this had me questioning the dx also.

But, I know you're not picking on anyone in particular with your statement. Just wanted to let you know that there are a few of us who have searched for other causes of our symptoms....but, that doesn't make us a hypochondriac.

kcgage · 01-25-2005, 08:48 PM

Hey,

First off, when going through the process before you get a fibro diagnosis, you are being tested for SOOO many different things, it's hard not to think "what if".....but that is very different from being a hypocondriac.

To those who believe they have something other than FM, I say keep looking. Only you are the one who knows your body best and if you don't truly feel it's FM, keep searching for further answers.

The thing about FM is that even with so much more information on it now, there still isn't a lot. And a lot of doctors still aren't belivers. Instead of bouncing from dr to dr I choose to accept the diagnosis of FM (I've had all other mimicking conditions ruled out) and try to move on with my life the best I can and get treatment for what works for me (chiro, massage and acupuncture).

The confusing part is we are all so much alike but so different at the same time. You probably won't find two fibro patients EXACTLY the same.

luv2read, i too take Tylenol but also Trazodone to help with sleep (i used to be able to sleep so much, i wouldn't hear 3 alarm clocks!) and Zoloft for anxiety (had it on and off for years). Like you, I had no accidents at all. The rheumatologist said that was unusual (not impossible, but unusual). I also have no secondary issues (well, unless you count the anxiety). That's very odd, I've never heard of an FM patient able to get by on 1 Tylenol a month. I've improved a great deal and still take Tylenol daily. GOOD FOR YOU!!

Either way, the whole point of this is, we are all different and to each their own. If we don't listen to our bodies, who will??

bluelakelady · 01-25-2005, 09:22 PM

dear anstar,
it is sad to be called names by those who lack knowledge. have pity on them and their ignorance.
have you tried ambien for sleep? it has very few side effects and you wake rested not hung over. i sleep now thanks to that little white pill.
coping with constant pain is easier than you think. when my hands hurt i walk. when my legs hurt i paint. when a concert of pain is playing thruout my body i hop in my movie theater and snuggle down with popcorn in hand and watch a flick. staying active is the key to having less pain. swim, walk, garden, anything you derive pleasure and activity from. i like to walk down to the lake and feed the ducks each morning. rain or shine i bundle up and go. often i watch the sunrise with my duck friends.
it is pouring rain and winds whip the tall pine trees. i wonder how the storm will look with the moon to back lite it.
sweet dreams.
peace,
bluelakelady
ps i think your post was misunderstood. hope i got to where you wanted.

anstar · 01-26-2005, 08:11 AM

Luv2read, you completely misunderstood what I was trying to say. I wasn't accusing anyone here of calling me a hypochondriac, I was stating that I've been accused of it myself IRL and thought that here I would find people who understood what I'd been going through. I'm glad you can sleep soundly, and get by on only Tylenol. I, unfortunately, cannot. I'm lucky to get 5 hours of sleep a night, and Tylenol may as well be M&M's for all the good it does me. My grandmother was diagnosed with FM about a year before I was (by a different doctor in a different city), and my mother has been showing some sensitivity to the trigger points as well. I'm not sure how you were able to conclude from my very short post that I had accepted the first dx given to me, or that I hadn't suffered for years before I got a diagnosis.

Bluelakelady, I also think my post was misunderstood. The very first thing I said was that I was grateful to have found others who would understand.

I took amitryptaline for awhile, but really hated the side effects so I stopped that one. I've discovered an extreme sensitity to cold, so icing just makes matters worse, but heat will help sometimes. I have an electric blanket to keep my bed warm, and a hot bath will sometimes help to ease the pain. I took ambien for a while too, but my doctor discontinued it because she said it's best to use for only 7 days, so as not to become dependant.

I wish she'd put me back on it, but right now I'm out of luck. With my insurance, I have to have a PCP and the only one in my area is kind of "old school". She and I don't really have a great rapport. I'm hoping to be moving to another town soon and maybe I can find a doctor I like better.
As far as trigger point massage: I'm not sure I could do that. Whenever anything touches those spots, I come out of my shoes.

The pain is so out of proportion to the touch it's not even funny. I still go to work every day, and take care of my boys, but I've noticed a bigger drop in quality of life recently. It's always worse in winter (such as it is in south Texas) and I'll be better when the weather turns warmer. Sometimes it's just hard to think that far ahead. I think I'll try the capzasin, see if it will work for me. Thanks for the suggestions.