Stay away from the narcotics as long as possible. Lyrica is being touted as the new fibromyalgia savior, but what the drug really does is control seizures. It is an antiepileptic. They have been looking at these epilepsy drugs for years because they found that not only do they interupt the siezure patterns, patients were reporting pain relief in other areas. Nerontin was one of the early seizure drugs, and in 1990 FDA allowed them to be prescribed for neuropathy, which is pain in the lower legs that many spinal patients and diabetics have. So moving up to 2007-8 you have Lyrica which is not moving well because folks with epilepsy were putting on 20-30 pounds and didn't like this.........in fact my doc told me to steer clear, But the studies showing that it really did help with the fibro pain, so although lyrica has been around for 7 years the general public thinks it is brand new. So my doc put me on topamax, which thank heavens causes some patients to lose weight. So I have epilepsy.....but I also have fibromyalgia. I have severe degenerative disc and joint disease in my cervical and lumbar spine with resulting neuropathy in my legs and arms. The cervical spinal arthritis will trigger a migraine if I sleep crooked.

The topamax has been a miracle for me. I take 100mg at night and 100mg in the am. And that is the low end of the dosing. It also enhances my pain meds so I was able to cut back on taking those. I was grateful for the epilepsy.

Big problem though if you don't have epilepsy or migraines is whether or not insurance will pay for this treat. It is due to lose it's patent and go genericbut for the time being it is just sold as brand in America for about $400.00 a month. So to make a long answer longer, best pain control topamax and Tramadol

So, if you wanted to go to a clinic for a comprehensive evaluation of, and treatment for, FM, where would you go? What are, say, the top five treatment centers for FM in the country?

I think it's time I really look into this. I was told many years ago that I probably had FM but I was in my early 30's and didn't want a "label" so I didn't pursue further evaluation. But, given how I've been feeling for the past few years, I think a thorough evaluation is a good idea.

I would suggest you first get a copy of the book "From Fatigued to Fantastic, 3rd Edition." (its important to get the latest edition) You can find it here for example:
http://www.amazon.com/gp/product/1583332898
(Be aware that some sites are selling the old 2nd edition at discounted prices, but it would be a waste of money compared to the current 3rd edition.)

Then if you like the general approach to treatment you find in the book, you could try getting an appointment at one of these places:
http://www.endfatigue.com/resources/practitioners.html

I went of them and I have to say they were very thorough. They took 28 vials of blood for analysis and found something wrong my other doctors never did. Also, they offer IV infusions that many people find help greatly. Mine did. I felt better for a week after having one. Unfortunately, that clinic is too far away for me to go get another infusion every month, but I would absolutly do it if I could.

Thanks, Mark, I will check out that book.

I take Neurontin, Fluoxetine for anxiety, Trazadone for sleep, Soma, Flexeril, and Kratom (for pain). My doctor did have me on Hydrocodone for a while but I'm done with that. All in all, I have to say that even with all of the stuff I'm taking, I'm still fairly uncomfortable, but a lot of it has to do with the humidity we're having right now. The bitter cold is bad, too. I feel like the tin man when he hasn't been oiled!!

Has anyone tried naltrexone (LDN) for Fibro / Restless Leg?
I found a site promoting its trial for many ailments.

http://www.lowdosenaltrexone.org/index.htm#What_is_low_dose_naltrexone

I've been off all meds for a few months but am beginning to sense one of those special flares coming. the 6 monther kind!

I too have fibro,(over 25 yrs.), tried all the meds but nothing works like Kratom!

Hi sadie,

Do you use Kratom everday? or just when pain flares are bad?

Wow this really illustrates how different peoples bodies are 100mg topomax one time paralyzed me for 7 hours trip to the ER whole meal deal This was the midication scare of my life. Lyrica …I was on that for one week and no effects until I stopped taking it I felt withdrawals worse than any narcotics I have ever been on. I have been scared of anything new since topomax dropped me in 30 minutes 1st dose
TM

Genethebean ,, One good thing currently doctors are getting more and more convinced it is a real deal there are still doctors that think it is a catch all diagnosis but there are many that are treating there pacients like they should with respect and compasion so you are in a better time to get a evaluation. Call do your research locally see what the doctors feelings are on fibro are first before you blow cash just to here some BS and given some antidepressant!!

Tm

I think I have fibro and my doctor has even mentioned it a few times but I don't want the label. I work in the ER as a nurse and I know what the nurses and doctors think of people with fibro and i don't want to go any where near that but I am getting to the point that the pain is affecting my life. I can barely clean my house and go to work. I leave work and spend all night awake with pain even when I take my ambien. I just don't know what to do.

Hi, im new to this part of the board.
I am on methadone linctus, cymbalta, lamictal and 1.5mg xanax daily. oh, and zopiclone for sleep.
the cold is bothering me a lot- its freezin here in dublin!
anyone else get annoying 'inability to control body temp'? not so much a hot flush- (im in my late 30s , not menopausal, dr checked.
damn it i cant use computers for as long as i used to. pain in my jaw and headache, dehydrated.
ill check back again on this fibro thread.
ps- anyone had cybalta be their 'wonder drug' for 6 months then poop out, allowing pain and depression in? happening to me atm. i hate going to my gp- its like 'you again?'. grrr, wish drs were better about it. (she does not write the methadone. i get that off my pain dr.)
take care all, anne marie x

I know I hate that but at least your doctor treats you. Mine just says it could be this or that and take ibuprofen and or tylenol. My liver and kidneys would of shut down years ago if I would of taken them every time I had pain. Why bother they don't work. Nor does any antidepressants I have give.

hi pnfree. im sorry, i had not thought of it that way. My old gp dx'ed me with fibro, then promptly retired.
this new gp is as cold and clinical as anything. really. its good i have a methadone prescriber, and a good psych team- (but they dont believe in fairies or fibro either).
the cymbalta that worked like a miracle for me for 6 mths my gp did give me, after much begging. she like ppl to beg. also on a reduction course from her of my zopiclone- got the same amount for 9 yrs now this cow has decided i 'need to come off them'.
this is why im joining the fibro thread- bad sleep plus then my cymbalta is pooping out. im crying, isolating, agoraphobic, lifes not a bed o roses tm.

I do see your point. i have 3 drs.(psych, pain, gp) 2 are good. and as meatloaf sings '2 outta 3 ain't bad'.

I never found any andi- d's of any use over 10 yrs, cept cymbalta, and omg was i cyncal taking it. next day, i had a headache and nausea, but i could lift my arms above my head again. i had not got constant joint pain. mind you, i dont seem to have typical reactions to meds ... most ppl dont like cymbalta. after i stuck w it for 5 days it was fine, no s/effects.

pnfree, i really hope somehow you get the treatment you deserve, you reminded me of how lucky i am and humbled me. thank you, and best of luck in your search.
take care, annemarie

I hope I did not come across rude but would be thankful for any help. I have to see the doctor in the clinic I go to because of insurance reasons so the only doctor shopping is just down the hallway. I should say that I have Tramadol for a back problem I have for the last 2 years but honestly I don't take it that much my a few times a week because it does not even work for the fibro pain. I have bottles and bottles of it because I get it fill every month just encase I do need it. Like yesterday I had to clean my house because it was so dirty. I took some b4 and after which I am sure I would of been miserable without. As it was I have not slept all night and I feel like vomiting. I watch kids running around and playing. I feel jealous of them and not having pain. I hope someday there is a cure or a better treatment because the thought of living to a rip old age makes me depressed. Sorry to go on and on. For you people that have an official diagnosis on your chart do you think if I can avoid getting it labeled on mine should I?

I totally go through that. I'm too cold when everyone else is fine. And if I get over heated I faint! I'm sitting here freezing and mad at my measely 4 hours of sleep last night!

Ditto to the body temp thing.

I wish I could find a dr who has Fibromyalgia.
Maybe then they would have more compassion towards people with the disorder.

I finally feel as though I'm not crazy.
My regimen:
Pain-Hydro
Spasms-Flexeril
Fibromyalgia-Neurontin
Depression-Celexa
Anxiety-Xanax 4mg/day

I prefer Darvocet for the pain, love the Neurontin which is also a mood stabilizer.

Careful with the Darvocet, Missymom, I am not a doctor BUT there are black box warnings about ODing on Darvocet. It also has a ton of Tylenol in it. Go to one of the sites that lists the patient packet insert or ask your pharmacist. They really should reconsider this drug as a pain pill. Again, I am not a medical professional. I would ask for either Tylenol #3 or stick with the Hydro.

dharma, she's not taking Darvocet. Just prefers it. Perhaps that's why the Dr isn't giving it to her. But good warning if she's getting it on the side..

My GP won't give me the some of the meds suggested my specialists because they may cause birth defects. Not pregnant (nor actively trying) but my DH refused too. But I get hydro. I must mention I'm a lactation consultant and currently lactating and not fertile. Oh well

The Oxycodone/Percocet work for me. However, the doctor I had wouldn't give it to me. Now I'm unemployed because I couldn't function at work, lost my family, no health coverage and have no support. Can't even do the day to day tasks. I'm 35 years old and have had this for 9 years, but they just figured out what it was in 2007. I also agree that if you ask for a narcotic they automatically see you as a drug seeker. Any words of wisdom?

I've had Fybro for years now. It gets progressivly worse. It goes in cycles. Narcotics help. I've tried Lyrica but had side effects. Heart palpataions, weight gain, vision problems. It's a shame though because I feel that it was helping. When I stopped taking it I went through withdrawals for several weeks. The doctors thought I was crazy when I told them that. Using Tramadol now and it helps to a degree.

Hi All
I'm new to this thread but I have been reading back through the pages, back to 2008!
Can't believe how honest everyone is and generous with sharing their personal information about their condition and treatments that work - or don't!

I have never mentioned FM to my doctor but she knows I complain about back pain and tiredness. She probably expects or is expecting me to mention it soon.

Why? because I'm in my early forties, been on Amitriptyline\Elavil and Nortriptyline\Norpress for over 10 years. I take beta blockers, Valium\Diazepam and codeine PRN.
I have complaimed to her about chronic tiredness. I need at least 9-10 hours sleep every night but still yawn all day at work. I spend most my weekend on the sofa listening to my MP3 player. But I do work out 4 times a week in a mini gym in our home.

What my doctor doesn't know is I bought Dihydrocodeine from Prescribe4u.com and use them a couple of times a week when I get to achy to do anything. They are great.

Does anyone else out there relate to this?

My other question is for the people who mentioned that they use Dihydro or Hydrocodone or Oxycodone is how often are people using it?
I try not to use it more than two days in a row because I get worried I might get addicted to them. So I save them for really bad days.

People with chronic FM - are you needing to use them everyday?
My doctor gave me 13 Buprenorphine tablets but I haven't used them yet. Interestingly she gave them to me for depression as I told her about an article I read on Wikipedia about their benefits for people with resistant endogenous depression. I'm saving them for a rainy day too.

Lastly, how do people cope with chronic tiredness? as I think mine is getting worse and it's stopping me doing things.

Can anyone tell me which is best or which do they find best for pain;
Hydrocodone or Dihydrocodeine?

While it is a very subjective question regarding which of these painkillers is "best" I can tell you that hydrocodone is typically estimated to be six times as potent as codeine on a mg to mg comparison.
The comparisons between IR DHC and codeine are all over the map but the most consistent ratio I've seen indicates DHC as 2X the potency of codeine PO mg to mg.
Thus, hydrocodone would be estimated to be 3X the pain killing potency of DHC.
By the way, supposedly the brand name "Vi-codin" came from the fact that hydrocodone is VI the strength of codeine. Good way to remember the comparative potency.

Thanks Martind, good way to compare them. Cheers

I totally agre, They say that you will get addictd. So they won't X it for you. Now your jobless. in pain, probably depressed and may become homeless. Which is the worst scenerio? Anyway, just wanted to let you know that there are other people out there with the same problems. Good Luck and take care.

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.

1fibro, I agree with you to but therein lies the conundrum. How much pain to tolerate before reaching for the meds?
I've had days with pain, aching all over and headaches where if I hadn't taken any DHC I wouldn't be able to get out of bed and go to work - period. So then the days turn into a week and two weeks and every day feeling like sh*t.
So what do you do?

Silvercloud, I totally feel for you. I have the same delemma I have

cycles that go from feeling what I would think is normal to total misery. Unfortunately when I have my better days they only last a day or two. Most of the time I battle constant fatigue, pain of varying degrees. This lethargy and pain will also vacillate even within a 24 hour period. One minute I feel kinda sh---y and the next I feel awful. Can't think. My mind is foggy. My eyesight is affected, I'm fatigued to the point that all I want to do is take a nap, and I hurt everywhere, especially all the places that I've have injured over the years playing contact sports and still practicing karate. Workouts help me with all of this to a point, although if I push the workout too far then all my symptoms are exacerbated. I hate taking any drugs, but I've have gotten myself into a vicious cycle of Tramadol 300 mg. daily and Provigil 200 mg. that I take sometimes when I just can't wake up or my mind is so foggy I can't think straight. My job is very demanding and stressful which doesn't help. I do a lot of stretching which is part of my karate training and meditate. The stretching and meditation help a lot. I didn't mention that I only sleep in 1 and 1/2 hour cycles. So I take 3 mg of lunesta to get to sleep and try to remain asleep. I still wake up 3 to 4 times a night but at least I can get back to sleep. Actually the sleep cycle problems without getting any deep sleep is probably compounding all of my problems. It's well documented that this will cause chronic fatigue, weight gain, high blood pressure, foggy mind, and general malaise. On top of all this, I supplement with opiates from some of these sites. I wish I had a good answer for you. Research lately has made some huge progress in identifying retro viruses that could be the root cause of
FM. Now how to treat these viruses and their recurring devastation is the question. Hopefully there will be a breakthrough. On top of everything else I'm getting older and with older age come all of the above symptoms that naturally occur with everyone. Good luck my friend. I do feel for your dilemma.