Hi All. I Was Diagnosed With Fibromyalgia/MFPS The Other Day. Can You Answer Some Questions?

[OPERATIONMINDCRIME]

Hi all. After years and years of pain and suffering I finally took the steps to get a diagnosis, and was determined to have high severity fibromyalgia. I always suspected such along with chronic fatigue syndrome (though CFS I guess is a component of FMS to begin with).

I don't have to tell any of you that suffer from the same how much of a torture every day existence is. I'm proud of myself for finally getting a diagnosis and seeking treatment for it. Now I'm a bit overwhelmed though.

To start, the doc put me on Zanaflex at night combined with a low dose of Elavil. This has so far seemed to give me a little bit less fibro fog the next day and it has helped a little. But it really doesn't do ANYTHING for the severe tenderness and soreness of my muscles, and the only thing prescribed for daytime is Provigil for fatigue.

So I have a few questions:

What medicines do you take during the day not for just fatigue, but also to relax the muscles?

Are any of you on actual Pain medication or do they just not prescribe them for FMS patients? (Lord knows, tylenol and advil don't really do jack shit)

What dosages of medicines are you on and which ones have been the most helpful for you in combating pain as well as fatigue?



Though I know right now there's no cure and the symptoms can only be managed, and even that only goes so far, I'm still going to try as hard as I can to continue to fight this ailment and be the best I can be for myself and my kids. I know the medications I choose or consult with my doc about will be a big part of that.

Thanks so much all!

OMC

[mopinko]

1. sorry to here this, but glad you are getting some help.

it is a suck ass condition.

i have taken a whole panoply of stuff. right now i am taking lyrica, which seem to really help, both with the pain and the fatigue. i have been on a lot of pain meds, and for the most part they work best when they are not used every day. they all help for a while, but seem to wear off after a month or 2.
i am also taking ambien for sleep. i think this has done me the most good of anything. i know that when i go to bed, i am going to go to sleep, no matter how wound up or bugged i am. it is a great relief to not toss and turn. definitely lowers the stress level. and although i sometimes wake up after it wears off, for the most part i sleep well and wake up feeling better.

i do feel a lot better after a couple of years of treatment. i still have my days, but they are fewer and farther between.
my doc told me that most people feel better within 5 years, and see docs less, and use meds less. i am not sure that that is not just because they give up, but....

[OPERATIONMINDCRIME]

2. Hi Mo!

Thanks for the reply. Suck ass condition indeed.

How much lyrica are you taking and how often, if you don't mind me asking?

Also, I wouldn't want to take pain pills every day. I just want them for the bad days (today's one of them. Muscles sore as HELL today!). What were the most effective pain meds for you?

As far as 5 years go, that would be amazing. Not sure I buy it though, since I've technically had this already for about 16 years (first started feeling this way at 18 yrs old). So I'm newly diagnosed, but a long time sufferer. I'm just thankful to finally be getting assistance with it and trying to manage it better; rather than just accepting defeat and resigning myself to feeling like shit every day.

But I appreciate your replies and thanks in advance for answering my two new questions, if you choose to :)

[mopinko]

3. yeah, i think i have suffered all my life.

have had an odd pain threshold since childhood. (i'm 54) remember many times as a kid having joint pain with no swelling or redness. got a lot of eye rolls from docs and mom. sleep depravation always really kicked my ass. the 5 kids nearly killed me! and every time i ever tried to get an exercise regimen going, i would end up with one muscle or another hurting like hell.
i had west nile virus a few years ago, and that kicked off a huge flair up. i was sick as a dog. i was barely pulling myself out of bed. had some bad shit to deal with along with it. i wonder sometimes why/how i am still here.

taking 150 mg of lyrica twice a day. have arthrotec for occasional bad days. i took it daily for a while, 75 mg twice a day. it wore off, but it is effective used occasionally. (today is one of those days for me as well)

but the biggest thing for me is sleep, sleep, sleep. sleep as much as you can/need. don't feel bad about it. i am just adjusted to the fact that i sleep 10/12 hours a night and that is just the way it is. ok, not really that adjusted, but i do it. yesterday i slept 14 hours. it just is.

good luck. how do you like your doc?

[OPERATIONMINDCRIME]

5. Glad This Forum Is Here.

Never knew it existed, to be honest.

Mine was likely sparked from living in my car at 18, and the trauma/loss of sleep that it caused.

Never heard of arthrotec, but I'm gonna read up on it.

I wish I could sleep more. I usually don't get to bed until about midnight and get about 7 hours of sleep a night. What I wouldn't give to be able to sleep 10+ hours! I do make the best of what I have though and fight as hard as I can, but Lord knows there are times I feel like just falling over, collapsing, and giving up, as I'm sure we all do. But something always keeps us goin right?

I like the doc so far. It was nice to finally see an expert in the field and have someone listen without judging or rushing me out. He actually spent almost 2 hours with me on the initial visit. I'm not used to that, so it was quite refreshing.

[Warpy]

4. This thread had some good replies

http://www.democraticunderground.com/discuss/duboard.php?az=view_all&address=317x3244

Sadly, there are still some docs out there who haven't caught up with the latest research. You might need to try more than one to find a doc who has.

[OPERATIONMINDCRIME]

6. Thanks Warpy! I Read It And Also Bookmarked It For Future Reading.

I appreciate it.

[Hekate]

9. OMC I just added a reply to that thread that includes links I found very helpful...

Best of luck to you and the kids.

Hekate

[OhioChick]

7. I'm sorry to hear of your diagnosis...

I was diagnosed with FMS approximately 15 years ago. I've tried nearly everything under the sun, to no avail. I tried Elavil (as you are) as well as many other anti-d's, anti-inflammatories and countless other meds. I also tried Lyrica when it became approved for FMS and I couldn't handle the side effects. It didn't seem to help any of my symptoms, either. (I'm not saying that any of these meds won't work for you....just giving my experience)

About the only thing that has helped me thus far is seeing a Massotherapist and participating in mild, low impact aerobic type exercise.

Good luck to you and let us know what you find that helps. :hug:

[DUgosh]

8. After five years

At age 50 now...

I am doing better taking Gabapentin. Tried lots of other stuff. Neurontin as it's also called is not new - just not used for fibro unless you ask for it. I started at 300 mg went all the way up to 900 mg then I started taking myself down and I'm doing fine at 300mg every morning. For extra pain I take Ultraset. Sleeping is still bad, if I could get that ironed out I'd be good. The best advice I can give you is to remember that carrying extra weight is all the more hard for us. I know it's hard to exercise because of the muscle pain that nobody can understand but us fibromites. But take a hard look at your diet, cut out soda's and drink lots of water. If you can loose two pounds that two less you have to cart around. :grouphug:

[WilliamPitt]

10. OMC

You've come into an excellent room here on DU. My fiancee was diagnosed with MS about 18 months ago, and I have been coming here ever since for information and support. She's doing fine, so am and, and so will you.

:hug:

[LibertyorDeath]

11. Good that you got a diagnosis

There's some good info here
http://www.dailystrength.org/c/Fibromyalgia/support-group

[Kerrytravelers]

12. Take a look at this website:

National Fibromyalgia Association

There is even a link to find doctors who understand Fibromyalgia.

[ohheckyeah]

13. I was diagnosed with fibro almost 30

years ago. I've tried many medications but I dont' react well to most medications and finally I just gave up. I take Ibuprofen when things get really bad but the thing that has saved my sanity is the hot tub.

I make sure I get plenty of calcium, magnesium, potassium and vitamin D and that helps a lot.

Good luck!