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Adrienne Dellwo

FDA Urged to Pull Fibromyalgia Drug Off Market

By January 21, 2010

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NEWSBRIEF: A nonprofit group called Public Citizen is asking the FDA to immediately yank the fibromyalgia drug Savella (milnacipran) off the market. The group's petition says the drug's dangers outweigh its benefits.

The side effects listed by the group include:

  • Raised blood pressure
  • Increased heart rate
  • Suicidal thoughts

The petition also states that Savella offers "only a marginal effect on pain."

Savella became FDA approved for fibromyalgia in 2009. It's a serotonin-norepinephrine reuptake inhibitor (SNRI), similar to Cymbalta (duloxetine), but unique in that it raises norepinephrine more than serotonin. Both of these neurotransmitters are frequently low in people with fibromyalgia.

On its website, Public Citizen describes itself as "a national, nonprofit consumer advocacy organization founded in 1971 to represent consumer interests in Congress, the executive branch and the courts." Its Health Research Group focuses on drug safety and public health.

Public Citizen has criticized Cymbalta over liver toxicity. It's also placed Lyrica (pregabalin) on its "do not use" list for neuropathic pain, saying risks outweigh benefits. Savella, Cymbalta and Lyrica are the only drugs currently FDA approved for fibromyalgia.

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Comments
January 21, 2010 at 10:40 pm
(1) Jodith says:

I’m willing to bet not one of those idiots in that organization has fibromyalgia. I’ve been using milnacipran for almost 3 years (I was part of the clinical trial). It’s been used in Europe for over 10 years. So what if it’s only marginally affective for pain. Without it, my pain is almost uncontrollable. With it, I can actually function. And that doesn’t even take into consideration it’s effect on the fatigue and cognitive dysfunction, which is even greater than it’s pain relief.

These folks need to just leave other people alone. There are few enough effective treatments for fibro out there, and they want to take away *all* of them. Like I said, total idiots.

January 21, 2010 at 11:33 pm
(2) Kelly says:

I haven’t taken Savella, but I have taken Lyrica AND Cymbalta. After having been on it 11 months, I had to stop taking the Lyrica, as it caused me to gain 30+ pounds, and my hands, lower legs and feet were so swollen…I couldn’t get my rings off and had problems getting shoes on. My skin was so tight from the swelling. So then my dr tried me on Cymbalta. Worked better for the pain, but caused me to become depressed! So I won’t even try Savella because of that. They need to come out with more drugs that work, and with LITTLE TO NO side effects!

October 9, 2011 at 2:04 pm
(3) Kim says:

Kelly,
I had the same exact experiences as you did with both Cymbalta and Lyrica. I never suffered from depression, and although Cymbalta helped the pain, I was soooo depressed from it! The side effects were just not worth it. Lyrica made me very tired, and really did not help the pain much for me.

I just started taking Savella a week ago, and I am already feeling better. It does not have the depressive effect on me that Cymbalta did. It helps the pain, and also I feel more “normal”. I think it’s because I am not in pain that I have more energy and feel like my old self again.
It may not work for you, but you might want to give it a try because I had the same experiences as you did on the other alternatives.

January 22, 2010 at 3:35 pm
(4) Cindy says:

I lasted only three days on Savella. I was really sick and had periodic “blackouts” which was pretty scary. I am doing pretty good on the Cymbalta. It has reduced the Fibro pain, but no help for the CFS. Bottom line is, we all react quite differently to different meds.

January 22, 2010 at 3:58 pm
(5) Joanne says:

My doctor recently put me on Provigil for fatigue and it is working pretty well. Anybody else had experience with this drug?

January 22, 2010 at 4:19 pm
(6) Geraldine says:

I think Public citizen is right these are very dangerious drugs for many. I speak from personal experience!

January 22, 2010 at 4:26 pm
(7) barbara says:

I’ve been using Provigil (100mg/day) for a year now. It has helped tremendously with energy level and even pain relief. It is prohibitively expensive. You can usually get a month free from your Dr. (Provigil or the new version-not any better, just gives the drug company patent rights longer-Nuvigil). So, you can try it. If it works, get ready for the shock. It’s $12-15 a tablet (200mg)!

January 22, 2010 at 4:45 pm
(8) Wendy says:

I have been taking Savella for three months, and oh baby what a difference. I feel ok most of the time. Still have pain but not nearly as bad as it was. I am tired of people telling me what to do, and trying to take things away from me that work, “for my own good”. Good grief, if it bothers you that much then JUST DON’T TAKE IT! NO ONE HAS A GUN HELD TO ANYONE’S HEAD AND FORCED HIM/HER TO TAKE ANY MEDS. What is the problem with folks who feel the compulsion to “protect me” from myself or from these meds? public citizen can just mind their own business and bodies, and keep their minds off of me and mine.
They may be allegedly “very dangerious drugs for many” but for many more they are helping. ALL meds have side effects. The trick is to balance benefits/risks. For many people the benefits far outweigh the risks. public citizen does not represent me and they have no business trying to get a drug off the market that helps me and many others.
Sheesh, some people must have too much time on their hands. If they have nothing else to do besides being interfering busybodies in other people’s lives, maybe they should help out in a soup kitchen and direct that time and effort to something that will actually help the people they are forcing themselves upon.
Sorry folks, had to vent but this whole “I have to save you from the evil (insert word here…med, group, company, etc) because you need protecting and you don’t know any better” thing gets under my skin like nothing else. These morons have no idea what kind of pain and suffering they could inflict on many many people if their hair-brained scheme works.
Jodith, I’m sure you are right. If any of those clowns had Fibro Savella would be a non-issue.

January 22, 2010 at 5:30 pm
(9) Susan says:

I think you ought to send your positive and negative comments to Public Citizen. They are a good organization but are not considering the fact that Savella does help SOME people. Anyway, the FDA will decide and the FDA is staffed by members of the pharmaceutical industry. Not to worry…too much.

January 22, 2010 at 6:46 pm
(10) Lucie says:

I have been diagnosed with Fms/CFS/and alot of other ailments as of 2001. I tried amitryptiline, anti depressants and other things as well..I had to be weined off all meds because I had a seizure from being “over medicated”….that affected my driving for 6 months, and although i continue to fight every day with pain day in and day out, I also manage to look for alternatives..AFter awhile, no matter what does work for anyone, you can’t stay on any meds forever becuase then there’s your liver to think about, your body can only take so many toxins..Even now, as I type, my back feels as if someone is ripping off the layers of skin off and it’s burning but I’ve learned to deal. Try other things…I find that Toradol, taken in moderation, helps alot more than anything I’ve tried throughout all my years of pain and then some. And believe me people, I got stories, just like you all do..You’re not alone..I’m only voicing a simple thought for those of you who are on all these meds…Just consider natural alternatives and find a great physical therapist that caters to our conditions..I am in heaven with mine becuase not only is he “knowledgeable” about these conditions, but he does help me “get by” for the week and I’d rather do this for the rest of my life than to have all the pharamaceutical companies ruin my liver, gall bladder and my heart too…At the end of the day, everyone has to weigh the difference on what is the better way to go for thier own…Good luck to you all and god bless.

January 22, 2010 at 7:16 pm
(11) Maria says:

I’ve been on Provigil for the last year for CFS. Works rather well but as Barbara said, it’s quite expensive. $400.00 for 30 day supply. My insurance at first denied it as it’s not approved for treatment of “said condition”…..gee what a surprise. I finally got it approved after having a sleep study that showed I had mild sleep apnea. Provigil is approved for that condition along with narcolepsy. Two months ago when my Doc diagnosed me with the beginnings of Fibromyalgia he wanted me to try Savella. I did a ton of research first, as I do with everything before trying, and the overwhelming negative comments about several severe side affects has kept me from trying it. I have PVC’s and my heart rate is the first thing to go crazy on a bad CFS day so I remain cautious. Will be interested to see what direction this recall action will take.

January 22, 2010 at 7:41 pm
(12) judy says:

What are you? Some kind of Watch Group? Find a new hobby.If Savella [Millnacipran] works thats great, leave us alone. This is a very hard to manage disease. So your blood pressure went up, are you stupid? You stop taking a drug that Maybe causing a problem. You may also suffer from White Coat Syndrome. A placibo could send you into orbit. I have no patience for this type of contol fantasy.
You need a life..leave others to live their own. Try a cross wrd puzzel, go for a walk, put together model EMS Trucks , leave people alone that are benefiiting and know that we are all on a journey and we are not stupid.
judy

January 22, 2010 at 7:46 pm
(13) Vera says:

It’s taken me a couple weeks to get over an extremely severe reaction to Savella. But if it helps others, for God’s sake, leave it alone. We have so little that helps. Also had a reaction to Tramadol, and I am unable to get Medicaid or Medicare to pay for provigil so that’s out for me too. And I absolutely refuse to take Lyrica due to its common side-effects of weight gain and poor vision. Consequently I have a marginal existence because of severe pain and mind-boggling fatigue. And medical “help” do not want to hear about it. So I say, if it makes you feel better USE IT.

January 22, 2010 at 7:55 pm
(14) Paula says:

I want to be informed if something is dangerous! Wouldn’t you listen if there was a recall on your car that you drive and trust your safety with????

January 22, 2010 at 7:57 pm
(15) Paula says:

I want to know if something is dangerous! Wouldn’t you listen if it was a recall on your car you trust your safety with???

January 22, 2010 at 8:46 pm
(16) 2 Tired says:

I have fibro, CFS and lupus. I’ve tried Cymbalta, narcotics, muscle relaxants and am on Lyrica for my fibro.
My sleep study showed that I woke up >200 times during the night & was told that this sleeping disorder is seen in some people for with MS, fibro or lupus. The waking’s due to pain. So although you think you’re sleeping, you’re really not getting *real* sleep, therefor, I *sleep* 18 hrs a day and lost my life.
Provigil DID help me stay awake during the day, but I was useless: I was physically awake, but unbearably tired and unable to sleep.
The ONLY med that has given me some quality *real* sleep so I can function a bit during the day is Xyrem. It helps with fibro-related pain too. But talk about “cost prohibitive”! My monthly prescription for Xyrem is $2,300.00!

January 22, 2010 at 8:53 pm
(17) judy says:

UH yeah, if my car was recalled i would take notice..Goood point. There are only 3 drugs appoved for FMS, Big Pharm has provided us with Lyrica which is only 50% effective with side effects out the Ying Yang. Then we have Cymbalta ..About to be recalled . We now have Savella , sucessful in Europe and japan under a different name. I have tried Lyrica..put me in a comatose state. I tried Cymbalta ..made pain worse for me, have not tried Savella. Who am I to try to stop the precious souls who benifit from these drugs? We do not have much to choose from without going down the Opiod trap.
Just think a little deeper, live and let live .We are not automobiles, we are suffering and must take responsibility for our own actions.. the drugs we take ,we must read the side effects and the pray for success. I hope the best for everyone facing the big GORILLA
judy

January 22, 2010 at 9:03 pm
(18) Sita says:

I don’t agree with the FDA pulling the drug but I do think there needs to be more education about the side effects for both doctors and patients. When I tried Savella, I asked my doctor (at the time, no longer seeing her) if there were side effects and she literally said “I don’t know, it’s a really new drug”! I was only able to tolerate it for a couple days and then had to stop due to the side effects (completely lost my appetite, horrible migraine, horrible joint pain, “regular” fibro pain magnified by 10). My doctor had absolutely no idea about the potential side effects.

If folks are able to tolerate it, while knowing the side effects, well I’m glad that it’s there to help them.

January 22, 2010 at 10:22 pm
(19) fogmom says:

what is the matter with people. If it raises your blood pressure don’t take it. Do they think we are stupid. That’s why the Dr. checks our blood pressure. savella has helped me more than any of the other things that are out there. Am I 100% no but at least I’m not in tears from the pain and I can have somewhat of a life.
The last drug I took what helped this much was phen/fen which the gov took off the market. Then I went into a deep depression. It works on some people, for god sakes leave us alone and let our doctors decide what is good for us!

January 23, 2010 at 12:33 am
(20) Donna says:

I’m an online activist for Public Citizen, along with other consumer advocacy groups. I also have fibro. But, my issues are more fatigue than pain. Anyway, I read about medications since I have worked as a med nurse in the past, this area does interest me. So many meds have such serious side effects that it surprises me that they get approved. People with fibro have dysfunctional immune systems as it is. What’s to say one of these medications won’t really hurt a person?

January 23, 2010 at 1:09 am
(21) Judy says:

I have been “diagnosed” with Fibro since 2004. I have run the gammet on all the meds, and let me tell you Savella has been a God-send. I am taking the maximum dosage and does ease or take the edge off – - believe I still have lots of pain and fatigue but the Savella is the first med in a long line of meds that is offering a little bit of help. And lets face it, just about every single medication on the market has “side effects” – - just deal with it. And this Public Citizen group they need to shit down and shut up cause probably not one of them has suffered even one day of what us Fibro people have. FDA leave it on the market!!!!!!!!!!!!!!!!!!

January 23, 2010 at 2:47 pm
(22) judy says:

It is my understanding that Cymbalta is being recalled for making false and inflated statements concerning the effects it has on fibro.
My experience was terrible with Cymbalta, so i stoped the drug.
I don’t think the Citizens Group will have much of an affect on recalling Savella.
Big Pharm is BIG biz. until lawsuits start coming down as was the case with phen phen, you will see savella out there until it reaches the end of it’s patent.
Dubya put an end to the phen phen lawsuits, furthur investigation shows Bush 41 sold his soul to Pzyzer [spelling] later to change the name to Wythe.
Be responsible for your self, dont judge others and be very wary of the way our constitution is being manipulated. Massachustes just submitted a bill to require all citizens to receive the H1N1 shot, a $1000.00 per day fine to anyone who does not comply. Yes I can back this up with website documentation and I am a Democrat, a very weary one.
take Care,
judy

Guide Note: Cymbalta is not being recalled — the FDA just sent a warning letter to the manufacturer over some misleading magazine ads: Cymbalta Ads Called Misleading

January 23, 2010 at 3:06 pm
(23) Shelley Moyer says:

I’m really upset. Savella is the only medication that has lowered my pain level. Going from a 9 down to a 3-5 in less than one month. I haven’t had any side effects with it.
My BP is a bit high,but it has been since I was diagnosed with Chronic kidney disease and I take lisinopril for that. I was diagnosed with bi-polar depression in 2005 so sometimes occasionally I go a little lower in a depression stage but never suicidal! I pray they don’t take it off the market just because some people react to it.
I had horrible side effects with cymbalta and Lyrica.

January 23, 2010 at 8:34 pm
(24) Paula says:

I too care about people who suffer. I think it’s definitely up to them if they want to take a drug, and do get relief. I personally just want to know if something isn’t safe. I would never try to stop anyone who benefits from a med.
I take Cymbalta, and every time I’ve tried to reduce it or stop it, I feel worse. I hope it isn’t recalled. I’m also getting some “less painful pain” with plaquenil. Tried stopping it and hurt so much more! I test negative for Lupus, but this lupus drug helps me. Rheumy is okay with that….

January 23, 2010 at 9:30 pm
(25) becky says:

IVE BEEN TAKING DEXEDRINE FOR HOEENDOUS FATIGUE FOR 7 YRS. IT WAS SO HELPFUL FOR ABOUT 5 BUT IT SEEMS THE PAST TWO YRS ITS BEEN HAVING A NEGATIVE EFFECT. HEADACHES AND ALOT OF FATIGUE AND SHUT IN DAYS. PROVIGIL GAVE ME HORRIBLE NAUSEA. I WAS TAKING SERAQUIL FOR YRS FOR SLEEP IT WORKED GREAT BUT NOW DOC WANTS ME OFF IT CUZ OF LIVER PROB ETC. PUT ME ON LUNESTAR-ITS NOT STRONG ENUF.ANYONE KNOW IF SOMA WORKS WELL 4 SLEEP? WHAT UPSETS ME IS THE PAST FEW YRS I FEEL LIKE IM GETTING WORSE WITH THE FATIGUE. HAS ANYONE ELSE HAD THAT EXPERIENCE? willit ever get better again???I NEED HOPE. IM BEGINNING TO THINK ALL THE DRUGS IVE TAKEN ARE BEGINNING TO CATCH UP WITH ME AND MAKE ME SICKER??? HAS ANYONE ELSE HAD SIMILIAR FEELINGS??? THANX, BECKY

January 24, 2010 at 12:05 am
(26) Edna Harper-Gilbert, RN, BSN, MSN says:

I, like several others, have been on various medications for fibromyalgia. I have been on anti-depressants such as Elavil (amitriptyline) and medication such as an anti-depressant approved for FMS, Cymbalta. I had to have the Cymbalta increase because it didn’t control my pain at first. Then, it began to make me nauseated and the dose was split in half and I had to take it twice daily. I was still nauseated and I gained 70 pounds. My doctor tried me on Savella. I loved it because there was a two-week starter pack that built the dose up and would keep one from getting nauseated as with the Cymbalta and had edema. My pain has been so much more under control and I thank God for the makers of Savella. Now, for the blood pressure issue. Yes, my diastolic (bottom) pressure has increased. However, I did gain 70 lbs. and I am not the healthiest eater. So, I can help myself with that. I’m good on the rest. I have a history of depression anyway, so the suicidal thoughts don’t bother me. I’m not going to do it, I have a beautiful little girl to live for and raise. I may think it, but there’s no way it’s gonna happen. Hopefully, the FDA will look at the drug and figure out if it helps the greater good. If more are helped than hurt, I say keep it. I mean, medicine is a practice and we have to do just that…PRACTICE. We work at something and try to figure it out. I mean, have you seen the side effects for Tylenol?! It is for pain and fever, but watch out liver….it can kill you!

January 24, 2010 at 4:02 am
(27) Marcella says:

I have Fibro/CFS. I have been on Lyrica since it came out. I noticed a positive effect almost immediately. Like others here I still have pain, but greatly reduced from what I had. What I noticed the most was the brain fog. It practically disappeared. I have been able to do so much more since I started on Lyrica. It is not perfect. I have my bad times but not nearly as many or as severe as before. I am still looking for the ultimate pill or cure that will eliminate the symptoms.

January 24, 2010 at 1:53 pm
(28) Blanche says:

What about Medical Marijuana?

January 24, 2010 at 4:22 pm
(29) Kristin says:

I had the exact opposite reaction to Savella it made me so tired I couldn’t get out of bed. No HBP or increased HR for me. I had a bad experience with Lyrica as well but you know what? I’m sick and tired of people trying to tell me what I can and can’t take for an illness that is debilitating on a daily basis. And, that includes narcotics. I don’t think anyone else has the right to tell me I have to be in pain when they have something that might take it a way. I know the risks and am responsible for my own actions. It’s no one else’s business.

January 25, 2010 at 6:40 am
(30) LiLi says:

So, pray do tell, just what are we “fibromites” supposed to take for our illness? Nothing? Aspirin? I can tell you without reservation, that those things will NOT work and that for some of us Savella, Lyrica and Cymbalta are our last hope. I take Lyrica and have done so for over a year now with no ill effects. Quite the opposite actually….I’ve lost weight due to increased energy with decreased appetite, my pain levels are quite manageable on the majority of days and I sleep better.

Perhaps this “Public Citizen” group would like to suggest some “safer” drugs that are effective?

January 27, 2010 at 9:48 am
(31) judy says:

To the hurting one asking about Soma. Yes, Soma will make you sleep and reduce muscle contractions that usually result in a pain increase. I have found some increduble news after visisting with a local scientist. I will post on A’s latest article today. Going for my new daily walk , back later, hang in there, truth is on the way

January 27, 2010 at 12:07 pm
(32) Jane says:

It might surprise some of you to know that there are those of us with CFS/Fibro that don’t take any medications at all and get along just fine! I’ve actually had it for 20 yrs. and I “manage” my pain and live a very full life, thankfully. It takes a lot of “work” on your part, but you can do it, and feel much better than adding side-effects from drugs. Try it!

January 27, 2010 at 1:26 pm
(33) Connie says:

I have taken Lyrica from day one it came out. My brother-in-law is my doctor, and he couldn’t wait for it to get approved. He knew it would help with my fibro. And I have to say I function so much better with it. It was amazing the change it made. I don’t understand why everyone thinks they have to have their hand in the pot. Leave it to those who know what they are talking about.

January 27, 2010 at 2:02 pm
(34) Margaret says:

My doctor prescribed Savella for me last year for CFS. I took it for almost 2 months and had to stop because of the severe depression I experienced as a side effect. I became almost catatonic; lost interest in everything and developed suicidal ideation. I have never experienced anything like that in my life. It was horrible. Like others, I think people have differing reactions to the same drug. If it helps, use it. But I also urge any potential user of Savella to be aware of the potential side effect.

January 27, 2010 at 10:58 pm
(35) lloyd says:

From my own experience, Lyrica helped initially somewhat, then it seemed to stop working but side effects became more pronounced. Rather than increase the dosage, I got off it. Now, occasionally, I try a little when supplements don’t seem to do the trick, and sometimes it helps–at least in zonking me. My experience with most other drugs has been even worse. Amitriptyline made me feel horrible; and Wellbutrin was hell on fast forward. I agree, Jane, that the fewer the drugs the better, but I also recognize that everyone doesn’t have FMS to the same extent. It’s clear to me that there are those who have it worse and those with milder symptoms. So each must deal with her own situation.

Guide Note: It’s considered dangerous to take Lyrica occasionally. Please talk to your doctor and pharmacist so you know the risks. ~Adrienne

January 28, 2010 at 7:09 pm
(36) paula says:

I say to Jane, I HAVE “WORKED” AT FEELING BETTER! Who do you think you are??? Everyone has a different toleration level for pain and fatigue. You must be one of the lucky ones but lay off!! Everyone isn’t that lucky at “working” at feeling good. Live in my shoes 1 week and you’ll see…

February 1, 2010 at 1:36 pm
(37) MiMi says:

I have had FM and chronic fatigue since 2005…..and I have not found any medicine prescription that I could take without a lot of side effects….but after a lot of research on my part…..I have learned how to “control” my pain with vitamins and supplements….I take a magnesium and malate combination supplement, Omegas, Vitamin D, Calcium and Super B complex…..plus others….but these are the ones which help me the most….I do know that what works for one may or may not work for another….since we are all different….even my doctor was surprised to learn that I was able to manage without seeing him so very often….he even told me that he thought I was taking too many supplements and vitamins….(I guess he likes me depending upon him more)….anyway…I still have no energy…but I am still working on this part also…

I would also encourage everyone who has FM to ask your doctor to check your Vitamin D level….low Vitamin D can cause us FMers additional pain….which as I am sure you know…we do not need…this is so very important…and it is just a simple blood test…but YOU MUST ASK your doctor to run the test…it is not a normal test yet…low Vitamin D has also been associated with other illnesses as well….

The Vitamin D supplements help me a lot…my level got down to 12…which is almost non existence…

I hope that someone might read this email and decide to try some of the vitamins and supplements..
living with the wrath of the dragon, aka FM….is a trial and error process…and this takes a lot of time and effort….to find something that will also help your pain….you never know what will help until you try…and it does take 6-8 weeks on something to know if it is going to make a difference….

February 1, 2010 at 5:06 pm
(38) Laurie says:

Also to Jane – Your comments demonstrate a remarkable lack of sensitivity and a great deal of ignorance. This disorder is not a one size fits all and affects people very differently. Some people can sustain a fairly high level of function with or without medication, others struggle to sit or stand for more than 10 min. at a time. Hopefully a test will be available soon to identify the Retrovirus that is probably the root cause and you will be found not to have it – that won’t surprize any of us.

February 2, 2010 at 1:45 am
(39) Laura says:

I have been on Savella for 3 weeks now and it has been a life-saver for me. After Cymbalta, no effect and Lyrica, nothing but side-effects, I didnt think there was anything that would ever help me! Savella was the last try by my doctor who has been baffled by my “rarified” case of fibro. This disease has robbed me of my life as I knew it and I was sick for 1 year before anyone could possitivly diagnose it. For a drug to finally give some relief and give me my life back, I will fight for it! You cant really ever know how important a drug can be to you until you have the disease yourself. I would never wish fibro on anyone but for the people wanting this medicine off the market, you better hope you never get fibromyalgia, if you do you will wish the medicine was out there, believe me!!

February 19, 2010 at 8:44 pm
(40) Sherrie says:

I was given samples by my doctor and immediately had increased heart rate. I think that doctors need to really screen patients better before just handing out whatever drug reps give to them. I have orthostatic tachycardia so I should have never been given it. I have had so much side effects with all that I am trying to find natural medicine. Provigil is not covered by insurance because the FDA does not consider it treatment for Fibro and CFS.

April 12, 2010 at 1:32 pm
(41) Kathy says:

You are exactly right…some have only a mild case of FM/CF….others hurt all over their body like they have a bad flu and can’t stand anyone to even hug them most of the time…I take strong pain medication twice a day and Vicodon for back-up pain….Now I have some OK days that I can take a little walk….before I could hardly get out of bed….If you don’t hurt that bad….you don’t have severe FM/CF…Be thankful, you only have a mild case….

May 10, 2010 at 11:07 am
(42) Sandra says:

I was diagosed with FM by a rheumatologist in 1992. It took almost 5 years for someone to recognize what was going on with me and give me a diagosis. Over these many years I’ve tried so many different drugs and therapies. Nothing worked. I did a clinical trial for milnaciprin that I heard about on the radio. When I started taking it, I felt better than I had in 20 years. I cried when I realized that this is how I was SUPPOSED to feel. Unfortunately, this particular trial was for a high dose of the drug. As they raised the mg, I started having heart palpitations and they had to stop. BUT, I watched for this drug to come on the market and asked my doctor to prescribe it to me in the low dose that I took in the beginning of the trial. I take 20 mg in the morning and 20 mg in the evening. I’m not going to say it’s been a cure all, but I can once again participate in my life. I don’t sit around and think about my pain/fatigue. I’ve worked all these years. I’ve been at the same job for 24 years. I am a lucky person to have had the management that understood and worked with me on this. Now, some idiots are trying to take away the one med that’s allowed me to go on. Everyone responds to drugs differently. I’m so tired of people meddling in our lives. I’m a big girl and my doctor and I can make decisions regarding my health a heck of alot better than some strangers who are trying to decide what’s best for me.

July 3, 2010 at 12:11 pm
(43) Bobbi says:

Becky, I am only 43 but have had CFS for 27 yrs. I’ve been on Dexedrine for 9 yrs. I have tried just about everything. The Dexedrine helps me stay out of bed, but it’s still a continuous struggle & I am rarely able to leave the apt. My fatigue continues to get worse ea. yr., but I personally don’t think it’s BECAUSE of all the meds. We can’t give up! Have you tried Xyrem? I finally found a Dr. who will consider trying it on me. He said it is the Date Rape drug & puts you in a really deep sleep, so you get better sleep. They keep coming out with new drugs, so there IS hope! Hang in there…

July 3, 2010 at 1:21 pm
(44) Bobbi says:

Becky – Are you taking “Drug Holidays” from Dexedrine? I go off it for at least 2 consecutive days/mo. to help offset my body building up a tolerance to it. Helps a little, although I just sleep the days I’m off it, & the first day back on Dex. is usually really hard (exhaustion). I did the same thing when I took Ritalin. Also, I used to take Luvox to counteract the frustration caused by the stimulants.

I switched to Savella 7-10-10 & took 50 mg./day for 2 wks. then went up to 50 mg. twice/day. Does anyone know how long it takes to start working? And I’ve read that it is never prescribed as an anti-depressant, so I’m wondering if it’ll even help my frustration/irritability caused by taking Dexedrine? My Dr. is on vaca. for the month…

November 18, 2010 at 1:33 pm
(45) Laurie says:

I was on Savella for 11 days when I had a heart attack. I am 46 years old with no prior history of heart problems. I am really tired of reading the comments from people that if it doesn’t work for you, then don’t take it. I had absolutely no prior warning and did not even realize what was happening. When you hurt all over all of the time, pain between your shoulder blades is not all that unusual. I was extremely fortunate that I had a healthy heart to start with and my husband, daughter and grandson will still have me here. My EKG shows anterior septal ischemia. The stress test I now have to undergo will give a true picture of the damage that was caused.
PLEASE stop saying if it doesn’t work for you – then don”t take it. It might be someone you love who is hurt by it next time!!

November 18, 2010 at 2:34 pm
(46) Laurie says:

Me again. I forgot to say I’ve had undiagnosed FM for at least 10 years. That is when the bruxism and low back pain began. The intense pain started my 2nd year of chiropractic college. I’m not sure how, but I was able to finish. Four years ago, I was diagnosed with hypothyroidism but still felt terrible even when my hormone levels returned to normal. After visiting 5 different doctors who each shrugged away my symptoms, I found my current doctor. She told me I had FM and she had a distinct understanding of the disorder and to trust her lead and she would have me feeling like a new person. No warnings — just a whole lot of hope. I feel really sgrewed and stupid right now.

December 2, 2010 at 10:01 pm
(47) stephanie says:

I feel for all of you. It is such a difficult thing that we have to live with, or at least try to live with anyway.
I have been on so many things over the last 7 years for fibro and CFS I’ve forgotten most of them. I tried Lyrica but was allergic to it and had to stop taking it immediately. Savella is not recognized in Canada yet so no luck for me there. He put me on venlafaxine which is somewhat similar but not sure yet if it’s helping much. I currently take Elavil, cyclobenzaprine, arthrotec, venlafaxine, zopiclone as well as 320mg/day oxycontin. I still feel like I have no life just pain and it is frustrating to no end but without these meds I can’t even get out of bed. On a good day I can stand or walk around for less than 10 minutes before I can’t take it anymore. A bad day means never leaving bed. I am told this is one of the most severe cases my doctor has ever seen.
I go to the Pain Clinic and do a Rhizotomy every 3 months. I get varying degrees of help with those as well but the last almost made me feel human but it was only effective for about a month whereas some people get up to 18 months.
Good luck in your search for a painless day :)

March 23, 2012 at 1:45 pm
(48) Heather says:

You all have valid points and concerns, FMS/MFPS are very frustrating and dibilitabing and throw in the CFS and the cycling of constant flare up and those of us trying to live a somewhat normal life can certainly get overwhelmed. However, consumer advocacy groups are there for our protection as well. I have had FMS/MFPS/CFS since 2000 and it has been an up and down struggle with a laundry list of meds and I have been on several antidepressants because when I was originally diagnosis tricyclic antidepressants where the 1st line of treatment, when lyrics was in the first human trials I was so excited then I tried it and simply could not handle the side effects, went on Cymbalta & can’t for the life of me remember why my MD switched me after 2.5 years to Savella but 6 months into taking Savella I began to have seizures without any cause, none of the 3 neuros can give me a reason behind it and when you read the package insert (I’m a pharmacist btw) it mentions seizures as a possibility but upon speaking to the company, Forest pharmaceuticals, but they don’t have any information about the seizures they mention in their packing yet they want to call and check on me in a month. Remember all of these drugs in recent years that have been pulled from the market because they have been shown to cause adverse effects after the FDA approved them and where the drug companies showed they were helpful and they had been on the market being used by consumers for years! Vioxx, Avandia, Tequin, now Actos now found to cause bladder cancer, Topamax causes birth defects, Zoloft, Paxil causing birth defects etc. just saying some things and safeguards are needed because the FDA doesn’t really have our best interest as patients in mind, if you look at the history you will see that

October 5, 2012 at 8:17 pm
(49) cdavydude says:

You know, the FDA, and DEA, control all the drug now. PCP, dont even prescribe vicodin or perocets, because they are afraid the will get their office raided.The FDA let big Phama, make drugs that grow naturaly, like marajuana, opiates, coca leafs, kratom, But the FDA and DEA dont want you to grow your own plants, trees, because someone won’t be making money off you. All these drug they produce, some are exactly what grows naturally. Alcohol kills more people, and yet they won’t take that off the market,same with cigarettes Heroin and cocaine, were legal for thousands of years,until I believe the stamp act of 1918, made heroin and cocaine illegal in the US. People should be allowed to self medicate, as long as they don’t put someonelse in danger. People make meth in labs now,from psuedoephedirine and other chemicals. They drink and drive on this stuff, and you cannot stop them. I have been on Cymbalta for 2yr now, and I can’t get off them,because of the withdrawls, it was easier to get off the oxycontin from surgery

March 4, 2013 at 11:50 pm
(50) Heather says:

I have been taking savella now for three weeks I started getting swelling in my legs and I can’t stand for long periods of time, I have never had this problem before my pain was in my back and wrists before I have fibro but I’m in so much more pain now then before, I was on lyrica but I gained ,15 pounds in three weeks as a side effect to that, I’m so discussed with it all I’m going to see if their is a pain pill I can just take when I get flair ups beside these crazy fix all pills

May 15, 2014 at 7:18 am
(51) Jenny says:

I have had Fibromyalgia for over 10 years now and I must say that Savella is my miracle drug. For the first time in years I’m actually happy! I wake up with my husband and have coffee with him before he leaves for work. Something I have never been able to do in the past. I’m smiling again and talking, laughing and joking. Before I tried Savella I tried it ALL and some a few times. I was at the end of my “noose” and ready to take my own life because I couldn’t stand the pain anymore. I knew there were some dangers to starting this medication just like the rest I have tried, but like I told my hubby, I would rather die happy than die from hanging myself. The pain is that bad. The last thing we need is “do gooders” trying to take away our choices, rather small that they are to begin with. We as sufferers need to stand up and scream louder! Just because they “say” this disease doesn’t kill us doesn’t mean we deserve to live like this. In my case it was killing me as I daily thought of new ways to end my life and be free from the pain.

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