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#463254 - 02/26/07 06:51 PM newly diagnosed with fibromalgia, need advice and info?
moodylee Offline
Member

Registered: 03/23/05
Posts: 134
as if things couldnt get any worse,along with chronic pain everyday, i was just diagnosed with fibromyalgia as well.the doctor said elavil, an antidepessant works for alot of people, and a good multi-vitamin, and exercise.if theres anyone else in here who has this, i would like to know what im dealing with, and what works best for you. any info would be appreciated, thanks.

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#463255 - 02/26/07 07:35 PM Re: newly diagnosed with fibromalgia, need advice and info?
trixxie Offline
Pooh-Bah

Registered: 05/23/03
Posts: 1079
Loc: ID
And what about your tethered cord? are they suggesting surgery?
I am sorry that this is a new curve ball thrown atcha..Hang in there..
_________________________
Dream outloud

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#463256 - 02/26/07 08:52 PM Re: newly diagnosed with fibromalgia, need advice and info?
mynose Offline
Member

Registered: 01/04/06
Posts: 127
IME, the best thing you can do is get a second opinion. and a third and fourth and so on...A fibro diagnosis is a tricky thing. some doctors see it as a convenient clearing house for people with "unexplained" chronic pain. some dr.s don't recognize it as a diagnosis at all. it may take a while but try to rule out EVERY other possibility. unfortunately, the usual course of treatment is anti-depressants. this works for some people, but maybe works isn't the right word. i think that it addresses the symptoms, rather than the underlying causes, which continue to elude many people. there is no one profile of fibro; many people suffer for many different reasons, in many different ways. anti-depressants don't make you hurt less, they just make you kind of goofy and happy about being in pain. the thing that has worked trememdously for me, after myriad courses of treatment over a decade, is establishing good sleep hygiene. i'm sure you'll read more about this as you become familiar with your dr.s recommendations. zanaflex works for me, whereas all kinds of other things, benzos, cyclobenzaprine, ssri's, skelaxen, vicodin, etc. just took the edge off. their's a huge wealth of info on fibro here- i think the current thread goes back for several years. good luck.

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#463257 - 02/27/07 06:37 AM Re: newly diagnosed with fibromalgia, need advice and info?
moodylee Offline
Member

Registered: 03/23/05
Posts: 134
as far as the tethered cord, the surgeon had no answers. he said my spinal cord was stretched way down, he wouldnt tell me anything until he consulted with another doctor, i had to leave my films with him, and hes supposed to call me in a week or two.i have no idea what hes going to recomend yet.

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#720928 - 06/28/08 02:38 PM Re: newly diagnosed with fibromalgia, need advice and info? [Re: moodylee]
surly Offline
Newbie

Registered: 10/14/04
Posts: 32
I'm not sure if many of you people know it, but taking an antibiotic in the fluoroquinolone class usally causes all the syptoms of FM and more. Pain, insomnia, tendon aches, muscle aches, anxiety attacks, P.N., depression and many more are all related to taking either : Cipro, Levaquin, Avelox, Floxcin and others in this class. These antibiotics can have devastating effects on your CNS and your body.

There are many forums filled with people injured by these
so called "safe" antibiotics.

Dr's are not aware of this problem and the drug makers are covering it up. The FDA is doing nothing to make them put warning labels on these antibiotics.

Public Citizen is now in the process of suing the FDA to make them enforce the warnings. Many of these side effects come on months after taking the drug, and can be permanent.

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#1012823 - 03/05/10 08:00 PM Re: newly diagnosed with fibromalgia, need advice and info? [Re: surly]
SilverCloud Offline
Enthusiast

Registered: 12/27/09
Posts: 212
Loc: Down Under
I take Immune Booster tablets. The make is System Well, Nature's Way. They work on 7 different areas of the body's different systems. I buy them on ebay. I think they help a bit.
As well as:
opoid pain killers
tricyclic anti-d
paracetemol
stretching
exercise
and massage

Vitamins have never done anything for me but since I've been taking these immune boosters I haven't had a cold in 3 years.
_________________________
Every cloud has a silver lining.

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#1017660 - 03/16/10 06:33 PM Re: newly diagnosed with fibromalgia, need advice and info? [Re: moodylee]
MarkhW Offline
Enthusiast

Registered: 04/20/06
Posts: 253
Your doctor is suggesting the stuff they usually try first. If they are helpful for you, great. If they don't work then there are other many things to try, more or less in the order they are likely to be helpful. Unfortunately, doctors currently don't have any way of knowing which of various treatments will work best for a particular person.

Also, opioids are usually one of the very last things they try if they ever try them at all.

I would also just mention that I like the book "From Fatigued to Fantastic," which is a very detailed, but also very accessable book about the treatment of fibromyalgia. The name of the book it probably a little puffed up, but the content is very good -- lots of useful information, at least some of which your doctor probably doesn't know. The book is currently in it's third edition, so if you decide to read it make sure you get the latest version.


Edited by MarkhW (03/16/10 06:34 PM)

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#1021067 - 03/22/10 11:20 AM Re: newly diagnosed with fibromalgia, need advice and info? [Re: moodylee]
BryansFan Offline
Board Addict

Registered: 08/07/07
Posts: 301
I just got diagnosed today and I am in the same boat! Overwhelmed for sure, but also somewhat relieved. The symptoms I have been having have been going on for years, but in the last year or so have gotten very bad. I have had two Dr. treat me as if I were crazy but then I found a new GP that did some testing to rule out other things and then sent me to a PM with directions to "dig deeper". I also have ruptured discs and degeneration in the "L" and "C" areas, which is being treated by the same PM doc, but after doing many things and tests, they said today they were for sure it was Fibromyalgia. They scripted me Savella, flexeril and lortab. I was actually already taking the flexeril and scripted 30 lortab 10 a month, but they increased my dosage of lortab to 4 a day...120 a month. I was shocked that they increased that much, but again, I have been going through EVERY treatment they suggested without much results and I kept a detailed "pain log".

My question is this.....has anyone had results with Savella? Does anyone have any non-medication treatments that work for them, etc. Will fibromyalgia just continue to get worse and worse or is there a chance that I could get better?

Any advice, suggestions, etc. would be much appreciated. I am excited to finally have a diagnosis, but also scared to death!!!! Need the DB family's advice!!! smile

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#1021081 - 03/22/10 11:58 AM Re: newly diagnosed with fibromalgia, need advice and info? [Re: BryansFan]
MarkhW Offline
Enthusiast

Registered: 04/20/06
Posts: 253
There are lots of non-medical treatments you can try. Among others are: yoga, aerobic exercise, various herbal remedies, etc.

Other medical treaments you may or may not have tried yet include addressing any sleep disorder may have(insufficent deep stage 3 and 4 sleep, frequent awakening, sleep apnea, etc.). Poor sleep generally makes fibromyalgia worse, causing more muscle pain.

Again, the book "From Fatigued to Fantastic" is cheap and well work the investment. I don't understand why people don't read it.

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#1021095 - 03/22/10 12:30 PM Re: newly diagnosed with fibromalgia, need advice and info? [Re: BryansFan]
martind Offline
GRAND Pooh-Bah

Registered: 05/01/08
Posts: 4223
The early reports about the effectiveness of Savella in fibromyalgia treatment have been very encouraging.
The drug is similar to Cymbalta but appears to have a much more pronounced effect on slowing norepinephrine uptake.
Without getting into all of the chemistry, I have read reports that increased norepinephrine lessens the effect that fibromyalgia can have on hypersensitive pain receptors which are a hallmark of this condition.
I hope your experience is similar to the positive reports of success.

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#1021103 - 03/22/10 12:49 PM Re: newly diagnosed with fibromalgia, need advice and info? [Re: martind]
BryansFan Offline
Board Addict

Registered: 08/07/07
Posts: 301
I hope so too! My hope is to "get it under control" with this med so that I can reduce other meds for emergency use only. The information out there on the net seems to focus on Lyrica more, so I have not found anyone personally that speaks of this drug one way or another.

I plan on reading everything I can get my hands on so I will read your suggestion, too, Mark. The more knowledge the better.

I currently do yoga once a week and take three 30 minute walks a week. I have to force myself to do those things, but I think they benefit in the long run, so I make myself forge ahead.

As for sleep, I would love to have a sleep study done and they are trying to get insurance to approve it, so maybe I can get one. I know I am lacking in deep sleep, as I am up every hour.

Thanks for the advice and information!

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#1024144 - 03/26/10 11:31 PM Re: newly diagnosed with fibromalgia, need advice and info? [Re: BryansFan]
Code21 Offline
Veteran

Registered: 07/05/07
Posts: 669
Loc: K-Pin Highway
Taking good care of your body is number one in fighting it. I have seen the transformation in my own illness just from changing my habits. My body LIKES the exercise, the nutrient rich diet, the meditation and yoga, the TONS of water! No more cigarettes, caffeine, needless medications. Getting up and moving despite the pain leads to less pain - trust me. smile

PS - whoever tells you that opiates are NOT the answer is right.* Trust. <-


*for most people.
_________________________
Ahh Klonopin, sweet nectar of the gods!

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#1025502 - 03/29/10 09:16 AM Re: newly diagnosed with fibromalgia, need advice and info? [Re: Code21]
BryansFan Offline
Board Addict

Registered: 08/07/07
Posts: 301
Thanks for the input.

I know the exercise is key for me too and even though I am too tired most of the time to "want" to do, I make myself because I know if don't, I will only be less mobile in the long run. Even if I hurt, my body can still do most of what I need it too and I doubt it would if I quit exercising.

I need to get serious on the diet, though. I do overall pretty good, but I do have a sweet tooth and I think I will die without my cup of coffee in the morning!!!

Do you use any supplements or vitamins on a regular basis that feel help you? If so, what?

Again, thanks for the advice!!!

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#1025516 - 03/29/10 10:01 AM Re: newly diagnosed with fibromalgia, need advice and info? [Re: BryansFan]
leftovers Offline
Member

Registered: 02/01/10
Posts: 180

Exercise if great, but I find that if I over do it then it acutally makes it worse. Vitamin D is also reccomended. Many people, not just the ones that suffer from FM have low amounts of vitamin D in their systems. If you are like me, I stay out of the sun which makes the problem worse. Lyrica, Tramadol, and Provigil are all drugs along with Cymbalta and Savella that may or may not give you some relief.

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#1025522 - 03/29/10 10:19 AM Re: newly diagnosed with fibromalgia, need advice and info? [Re: leftovers]
BryansFan Offline
Board Addict

Registered: 08/07/07
Posts: 301
I stick to "low key" exercise. Yoga, peaceful walks, swimming when I can. If I do anything that exerts too much, then I do have extreme pain and fatigue. If I am careful, though, it seems to keep me moving better.

I will try to add the Vitamin D. Do you take Vitamin D separate or just as part of a multi vitamin? What dose is suggested?

I had been given a month sample of Savella last week to start and I had to end it on Saturday due to an extreme increase in blood pressure for me. I talked to my doc this morning and he is switching me to Lyrica. I will give it my best shot and hope for the best!!!

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#1025734 - 03/29/10 03:50 PM Re: newly diagnosed with fibromalgia, need advice and info? [Re: BryansFan]
MarkhW Offline
Enthusiast

Registered: 04/20/06
Posts: 253
Vitamins and suppliments that are likely to help (as well as prescription meds) are covered in great detail in the book, "From Fatigued to Fantastic."

Anybody here ever read the book (besides me that is)? The reason I ask is because nobody can type over 400 pages of stuff people with fibromyalgia need to know in a forum like this. If people would read, then we would have a really good starting point for discussion. Maybe people just don't read anymore -- I know my kids don't. Is that it?

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#1025780 - 03/29/10 04:39 PM Re: newly diagnosed with fibromalgia, need advice and info? [Re: MarkhW]
BryansFan Offline
Board Addict

Registered: 08/07/07
Posts: 301
I have ordered the book but it is not here yet. Reading is my favorite hobby, just don't have much time to indulge.

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