Drugs for Fibromyalgia & ME/CFS - The Cart Before the Horse?

It seems like the drugs they are approving are drugs developed for other conditions and somehow found to benefit fibro or me/cfs in some way????

Problem being we all really have different issues and no Drs. know anything definate about what we have. The same drug is going to help one individual and could potentially kill another…

This is not kidney disease or heart disease or arthritis or cancer. They don’t really know what it is so how can they possibly give you something to fix it.

Does anyone here have only the symptoms of Fibromyalgia…or only the symptoms of ME/CFS…anyone??? NO, not of those who post here anyway. Everyone seems to have other conditions…. The Drs are just handing out pills to keep people happy and as pain free as possible…sorry that does not help you.

Drug companies make more money and so do the doctors…Tell me, how many of you feel better ?????

Suzanne

I was diagnosed 13 months ago with fibro. At that time, I was waking every hour at night, exhausted, in horrible pain everywhere, and at a total loss as to what was wrong with me. I tried ambien and it did nothing for me. So my doctor did the pressure point test on my and I almost punched her, that’s how strong my reaction was! It was an instinctual reaction, just like when they test your reflexes with the little hammer on the knee. Anyway, she prescribed flexeril morning and night and elavil at night. Oh my goodness, the pure joy of sleeping through the night!! It was a fantastic thing to take a couple pills and feel so much better. Then we had to figure out the pain part. I ended up going to a rheumatologist, and he gave me tramadol and lyrica. My pain levels have gone down, and I only use the Tramadol sparingly- usually when storm fronts move through my area. He had me try Cymbalta and it made me sick. I stopped after two days because my throat was closing up and my heart was racing. I don’t care that they are using us as guinea pigs as long as they find something that helps in the meantime. I am upset about the lyrica causing water weight gain- I went from 125 up to 140 and I am battling it with exercise and lots of raw fruit. Over all though, I do feel better.

Compared to other antivirals Ampligens has a remarkably safe safety record. There are numerous stories of CFS patients who’ve had their life changed because of that drug and advocates have been hoping for FDA approval of it for over 20 years.

Your comment on serotonin suggests your knowledge of CFS is a bit lacking; most studies suggest serotonin levels in CFS are probably low. Dr. Murphree, a rather well-known CFS physician finds 5-HTP to be quite helpful. Even Dr. Natelson, a physician who rarely uses alternative medicines, uses 5-HTP. Yes serotonin syndrome is a danger but hardly a large one in this population.

Lyrica with its side effects obviously poses challenges but it was the first drug approved for FM; that legitimizes the disease in a big way. Pharmaceuticals are in the business to make money no doubt about it and buyers must beware but a statistically significant is (usually!) a statistically significant outcome.

That is a good point about diagnostic tests – a huge problem but the money’s just not there. So we take what we can get and be careful with what we got.

Cort,

Actually, studies are split as to whether serotonin is high or low in people with CFS. That’s why I said “you might have high serotonin levels.” The irregularities in studies on just this one condition show how dangerous it is to use a “one size fits all” approach.

Hopefully the legitimacy brought by drug approvals will get more funding for things like diagnostics tests.

After many years of suffering with pain, exhaustion, and a host of other symptoms, I finally found a Dr. who understood FMS and CFS. I did have to try many different meds before arriving at a regime that works like a miracle for me. The thing is, it’s true everyone is different but I think you’ll find that people who suffer these two syndroms have inability to get a quality night’s sleep, in common. Anti-depressants such as SSRI’s work because these people make Serotonin but can’t use it properly. I have been on Remeron, Nuerontin and Klonopin for several years and have become a person again. My Dr. sent me for a sleep study and it was determined that I never went into stage four sleep and didn’t have enough REM sleep. That’s the reason for the Nuerontin and Remeron. What a Godsend! I slept for 12 a night for almost a year when I first went on it and slowly began to gain back my strength and ability to withstand stress. I tried every natural way to deal with my symptoms, known to man, before the meds and for me I say, let people have access to drugs that will help their symptoms whether or not we ever discover the actual cause. I am monitored regularly for liver and kidney function with no adverse affects after 5 years of treatment. I feel so much better that I would fight anyone to the death who would try to take away my meds. I am a normal person again (almost) and loving it.

I have been on every pill that doctors thought would help. Including the ones pulled off the shelves. I have taken Lyrica that was a trip and a half. I could not control my eyes 24 hours after I took it. The day I did take it my husband told me I looked and acted high.
The only things that have help is prednisone but that has many side effects. Right now I am on Tramadol. It helps keep the pain bearable but I have never been pain free in 7 years except for right after surgery and I had a morphine drip.
My suggestions is if you are going to try a new pill do it when you have a couple of days off. If I when I took the lyrica there would have been NO way I could have walked little alone driven safely for 48 hours.
There needed be more research done on this dieses.

If this illness is not treated with the medications as they become available, then many will continue to endure their pain on a daily basis. After all, the only thing that can be treated at this point are its symptoms. I would do just about anything to improve the quality of my life until they find the answers.

I believe that much of what is happening, while implementing treatments with medication, can be contributed to the chemical sensitivities we have. Some can not tolerate certain meds. I was taking Lyrica, with wonderful results, months before the warnings of suicide came out. My concern here is why they did not test the drug for a longer period of time to determine this potential effect, prior to releasing it. I have taken antidepressants for most of my life and have often wondered if that isn’t what ‘kicked’ off the fibro to begin with.

I am somewhat concerned about the side-effects of Lyrica…but my life would be horrible had it not been for this drug. It’s not perfect now; at least I can move about with less pain and not have to spend 3 days in bed because I ran my vaccum cleaner.

While we don’t know what is going on with our bodies, yes…treat the symptoms. It will be many years before they know the true cause of FMS/ME…if ever.

Using the Lyrica/Cymbalta combination, I am finally pain-free for the first time in 13 years. The change has been unbelievable. For me, it was well worth working through the initial side-effects of getting used to the meds for the end results I’ve encountered.
While I appreciate that better diagnosis is of course warranted, I shudder to think that no attention was being paid to treating the pain we fms/cf’ers suffer.

I am taking (and have been for a few years now) Gabapentin for my FMS. Have any of you tried it? It really helps control my pain to a level that is very tolerable. At bedtime I take Cyclobenzaprine which thank goodness lets me sleep pain free thru the night! I tried Lyrica but I had rapid weight gain after 3 months so stopped taking it. Any comments on these drugs?
Debbie

We can’t wait for a diagnostic test. Many of us have already given up 15 to 20 years. Somethings they just don’t know yet and the best available is to treat the symptoms. We often have to try several things to see which ones work for us. What works for me may not work for you, because we don’t know what we are dealing with.
I long for the day when a diagnostic test is available, but until then we can’t wait around and do nothing.

a recent therapy that has made a difference for me is plain old Armour Thyroid. (not syn thyroid)
Just because your thyroid blood test falls in the normal range doesn’t mean you personally don’t need more or will not benefit from Thyroid medication. My doctor is now prescribing large doses which increased a little at a time, to gage side effects and test blood levels.

Just try to remember that M.D. stands for “more drugs”. Enough said.

From all that I have read and all that I have experienced, the only thing that I can say for sure is that CFS/FM is an unmeasureable toxic bodywide condition. Down on spending more for drug studies. The drug companies are profiting much more than the CFS/FM patient. Many patients end up compromising their health further due to the toxic nature of medication and the general lack of medication “side effect” knowledge and follow up by patient and doctors. The spending should be primarily devoted to molecular biology in order to find the cause/s and develop tests for diagnostic purposes. I have been down a medication road I would not wish the devil himself to experience. Today, I only use 10mg of morphine, roughly every other day to help with vasomotor dysregulation. I have tried some 50 or so medications and it has been a rough ride. I have also tried as many alternative therapies and many of those are equally unpleasant. Also, for the serious CFS/FM sufferer, existing medications may be not only inadequate and toxic (some combinations are deadly), a person claiming CFS/FM may be denied disability based on the non-use of medication. The SSA looks for every therapy loop hole they can.

Ampligen is an antiviral/immune regulator. A subset of people with CFS have astronomically high viral levels and immune dysfunction. Ampligen has been shown in study after study since the 1980s to improve these symptoms. In addition to being effective, it is also safer than the drugs currently being used (experimentally)to treat this patient population. So what about this is putting the cart before the horse? All drugs have side-effects. Personally, I’d prefer the non-toxic effects of Ampligen versus what I’m taking now (very toxic antivirals). I’m anxiously awaiting approval of this medication, since if approved it will be covered by insurance and more readily available. Unlike FM, there IS no approved treatment for CFS, and we deserve one asap. The only thing preventing Ampligen from getting approved at this point is politics.

That is wonderful Dian…congratulations to you for finding a combination that works.

Debbie – the Gabapentin is along the same lines as Lyrica or Neurontin…they all are meds. that treat seizures, but work well on nerve pain. I’ve heard many say they gained weight with Lyica, but my gain has been minimal. I take Trazodone for sleeping and it works well.

Susan – You are correct about the thyroid testing not always showing a problem, but most doctors won’t treat thyroid probs. with medication unless they see it. There is a specific blood test that can be done for the thyroid, but it has to be requested by the physician. I hope your treatments work well for you.

Dr. Mom – I always thought M.D. stood for Medical Doctor.

Anne – I do believe there are continuing studies and research being done to find the cause of these illnesses. The drug companies are marketing whatever products have been shown to improve the symptoms. I wish I could find a doctor who would prescribe morphine. Maybe then I could discontinue a few meds. I have to take to cope with my pain. Since they are hesitant to do so, because of the addictive potential, some of us have to take what is available and pray that it helps. What the SSA would be looking for is a medical condition which is severe enough for a person to be on medication in order to control the symptoms or treat the disease. The SSA may be overcautious due to those who seek unwarranted benefits through the same loop holes.

This is what needs to be said loud and clear by every person with FMS and/or CFS. It should certainly be yelled into the ears of the pharmaceutical industry. They keep making pills because it brings in money. We are their guinnea pigs, and when it doesn’t cure us, they’ve got another drug in the pipeline ready to take it’s place. We hurt so bad we’ll take anything.

Until enough money is spent to find a cause for FMS and CFS, this little economic game will continue. We are making the pharmaceutical industry fat and happy with our suffering.

I sincerely believe that many of the people ‘helped’ by the various drugs passed out to us have been misdiagnosed and do not suffer from CFS or FMS. I’m very happy for them, but it’s rather hard to know if a drug helps CFS and FMS when the people taking it may or may not have the diseases.

If we could all put our suffering to the side for a moment and use what brain power is left us, we could demand more research and refuse any medication which has not proved successful in treating people whose diagnosis was made by the only criteria we have now.

The same thing can be said for the alternative medical treatments. I read so many of you telling the complicated regimens you are under, some making you a little better, most giving you more side effects, and my heart bleeds for you.

Doctors are not gods, though many of them think they are. Neither are the big money pharmaceutical companies. But folks, there are more of us than there are of them. Use your remaining brain power and demand more research and better care. If vicodin stops your pain, demand it, unless or until you have a problem with it. Remember that using such medicine for pain is just not the same as using it for getting “high” and your doctor knows that. If yours doesn’t, get another one. If fatigue is your main problem, drop the doctor who tells you to exercise. Exercise intolerance is the mark of CFS. Use your common sense.

You have a disease with no known cause. If a doctor tell you to take something, make him explain how it works and why in the world does he think it would work for you. Don’t accept the philosophy that says if you take enough things, maybe something will finally work. Use your common sense.

If something gives you a side effect, don’t take something else to cover the side effect. Stop taking what is causing the problem. Use your common sense.

And I could go one, but I’m tired & I hurt. :>)

Alice Campbell

Hi Dr. Mom,

I agree with you. M.D. does stand for more drugs. But the reason it does is that doctors are human too. They got into the profession because they wanted to help people. They don’t like it when there is nothing they can do. It hurts them because they do care. So they bring out that prescription pad and write, write, write, hoping that something might maybe help. They are human, they care, and unfortunately they just can’t stand to say they don’t know what to do. We, like sheep, eat everything they hand out with high hopes, and have them dashed when nothing gets better, and sometimes new problems are added to our sufferings.

Alice Campbell

Hi Susan,

I’ve had FMS for 22 years, and CFS for 20 years. Both properly diagnosed by the CDC definitions. There is no known cause and no known cure. I finally accepted that, so I have not ‘given up’ 22 years, only about 5 years. After I was able to accept that the medical profession could give me only very limited help, I got my life back. Not the life I had before, but a different life. And considering the alternative, it is a good life. I’m not waiting around and doing nothing. I’m living my life as it happens to be. I do any and everything that I am able to do and enjoy the fact that at least I can still do that.

Alice Campbell

I have suffered for 32 years from what doctors now call fibromylalgia. In my opinion, only those whose symptoms are not very severe would denigrate the use of medications in the absence of full knowledge of FM. I will be thrilled when they know more, but I am grateful to have the partial alleviation of some of my symptoms which allows me to have a somewhat functional life.

I’ve had FMS/CMP since I was a teen, but wasn’t diagnosed till 2001. I actually found out about it when a patient (I was an office nurse) came into our office with a booklet describing it, and I recognized all the symptoms in me! I was living in rural MT and had to drive 150 miles to find a Rheumatologist who officially diagnosed me. My own doctors wouldn’t do it. The same week I was diagnosed, I lost my job and my husband decided he didn’t need me anymore. Then I had to move to Texas to get treatment. I ended up being a research subject (for one of the leading FM researchers in the country) at the UT Medical Center in San Antonio. I worked with him for a couple of years, testing Cymbalta and Xyrem. I got the real thing with the Cymbalta, but the placebo with the other. After completing the testing, the drug company gave me Cymbalta until it was approved by the FDA. Shortly after that, I got a disability determination (on the 6th appeal) for the FMS and because I had a permanent lifting limit due to back and neck surgeries– and my “advanced” age (55!). I also couldn’t get anyone to hire me, even with 35 years of experience. Nurses have to be able to lift 50 pounds to work anywhere, and I was allowed 10. Now I have Medicare Part D to help with paying for the Cymbalta, gabapentin, thyroid, vytorin, metformin, metoprolol, cyclobenzaprine, loratadine, and TEN otc supplements. I’m allergic to all opioids, but can take small doses of generic Darvon for “severe” pain. I usually stay between 4 and 7 on the FM pain scale.
I’ve tried chiropractic adjustments, massage, acupressure, meditation, yoga, herbs, diet changes, vitamins, hormones, water exercise, you name it. Prayer does work.
I start with a new internist in the morning, so will see what she can do for me.
Does anyone have any other suggestions? I’m game to check out anything!

I’ve been taking cymbalta and lyrica both. I was diagnosed with fibromyalgia in 2003 and between these 2 drugs I’ve seen more relief than with any other drug(s) or pain medication(s) I’ve been on besides hydrocodone and somas (which I take for neck and back pain). And believe me, my dr’s have tried numerous different ones with little or no results. We even stopped lyrica because of the weight I’d gained (which was minimal) but the pain was back so bad I definately got back on it and have been happy again with the results. No other side effects. Of course everyone is different. As far as the cymbalta goes, I was put on it for depression. But combined with the lyrica it does wonders for my fibromyalgia.

Just my 2 cents worth

Donna Hill

doctors can’t help. go alternative.
you can be well. i did.

I wonder how many of you have read the study from the WSU-Pullman. It is giving me something to think about and I hope it helps all of you. http://www.google.com/search?sourceid=navclient&aq=t&ie=UTF-8&rls=GGLR,GGLR:2006-10,GGLR:en&q=Fibromyalgia+%26+Metoprolol

I would ove to hear from anyone that has had experience with any of the Drs listed towards the end of the study.
Regards, Long F M Sufferer

Wait just a minute. I was just informed that I have a high blood serum serotonin level. I was diagnosed with bipolar which I do not believe I have nor will I ever. I don’t drink, do drugs, perform illicit behaviors.I have been given cocktail drugs for years which I am deathly afraid to take since my mother died from Neuroleptic Malignant Syndrome – Look it up. We are guinea pigs in the medical profession. I will be having my urine tested for 5H1AA again. Possibly Carcinoid Syndrome. I just thank god that I have not recently taken these drug cocktails or I may not be writing this. Have a serum serotonin performed before a host of antidepressant drugs are dumped down your throat or drugs that increase serotonin or dopamine levels. Look up the list of those drugs there are loads as well as specific foods ie, bananas, walnuts, chocolate, tomatoes, high carb foods and the list goes on. Don’t play the Pharmaceutical game – they will kill you. By the way Lyrica is one such drug, gabapentin, and neurotin that increases serotonin levels. If you need your thyroid checked ask, don’t sit there like these people are gods they are not! The last Endo I saw I called an idiot and slammed his door because that is just what he was!
Tell them to order the TSH (thyroid stimulating hormone) & Free T4. And I don’t mean that test has no cost. Please, be aware of what you are putting into your bodies they are your own. Some drugs are more innocuous than others educate yourselves. the life you may be saving may be your own. And remember doctors bury their mistakes!!!!!!!