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Regular readers know I’m very skeptical about the claims of new drugs, especially those advertised on TV with a voice at the end of the commercial reading the side effects at the speed of a tobacco auctioneer (I always listen carefully for “death,” that ultimate side effect).
You’ll see no commercials for either Savella or Xyrem on TV, the first because its manufacturer, Forest Laboratories, doesn’t believe in direct-to-consumer ads. The FDA hasn’t yet approved Xyrem for fibromyalgia, though it will likely get an FDA blessing by year’s end. However, many fibromyalgia physicians are prescribing Xyrem off-label, informing their patients about the pending FDA status. The Xyrem story is especially interesting, I think, but let’s take a look at both drugs.
Savella (milnacipran) has been used in Europe for fibromyalgia for about five years with excellent results. Though they’re largely unaware of it, Europeans are guinea pigs for the American pharmaceutical industry, trying drugs before they’re approved here. Savella acts by raising brain levels of stress-buffering serotonin and a second neurotransmitter, norepinephrine, which is involved in focus and energy. Although milnacipran is a unique molecule, the effect is theoretically similar to combining an SSRI antidepressant (like Lexapro) with a psychostimulant (like the attention-deficit disorder med Adderall).
The clinical results in US studies, which had to be completed before FDA approval, have been impressive. Researchers tracked about 2000 fibro patients, 95% female, after three and six months of taking Savella. They asked about improvement in pain, improvement in overall perception of “positive change,” and improvement of physical function. In all categories, Savella scored significantly greater than a placebo (dummy pill).
Researchers knew what the main side effect would be before anyone swallowed the first pill. When you do anything to raise norepinephrine, you feel nauseated, and nausea did turn out to be the number-one side effect. To avoid this, patients start at a dose one-tenth of the maintenance dose and gradually increase it. Headache and constipation also occur, but less often. Anticipating your next question, no weight gain occurs with Savella.
If you start Savella, any drugs you’re taking that raise serotonin need to be tapered down (not necessarily discontinued, but lowered). Otherwise, Savella can be used with most other medications.
In my own practice, I’m seeing very positive results, with fibro patients reporting significant pain reduction as early as 2 to 3 weeks after starting Savella. The nausea component, if it occurs at all, seems to go away after ten days or so.
Xyrem It was almost 20 years ago when I first learned from a massage therapist that the chemical that would ultimately be released as Xyrem could help fibromyalgia patients. “It’s pretty hard to find these days,” she said. “You know, it’s got a terrible reputation.”
“Terrible reputation” was an understatement. Gamma hydroxybutyrate, or GHB, was available over-the-counter, but was rapidly being withdrawn by the FDA because of its high abuse potential. If you’re thinking, “I’ve heard of GHB…” you’re right, it’s the date-rape drug, a Mickey Finn of a sleep med that’s easily mixed with an innocuous drink for nefarious reasons.
How could GHB be helpful in fibro?
Researchers discovered what fibro patients already knew. On those rare nights where they slept deeply and well, people with fibro had less pain and more energy the next day. With GHB, you undeniably sleep deeply, and back when it was widely available fibro patients who tried it were telling their massage therapists (but not their physicians!) how this drug was helping them.
After years of FDA negotiations, a small drug company got the rights to GHB, sensibly renamed as sodium oxybate. They got rather quick approval for Xyrem’s use in people with narcolepsy, an uncommon condition in which you uncontrollably fall asleep during the day. Over the past year, word leaked out that the company was testing the drug for fibro, but FDA regulations forbade them from talking about it. Recently, however, the clinical trials have been published, with excellent results.
Just as my massage therapist advised two decades ago, get the fibro patient to sleep deeply and she’ll start feeling better.
However, when I first learned about the Xyrem dose schedule, my response was “You’ve got to be kidding. No one will do that.” I was wrong. Despite the strange dose schedule, which follows, patients are willing to put up with it because they do feel better.
1. You’ve got to get completely ready for bed, emptying your bladder, turning off the TV and lights, and getting into bed before taking Xyrem (it works fast).
2. Measure out two doses of Xyrem (it’s a liquid). Slug down the first and turn out the light.
3. You’ll have previously set an alarm clock to wake you in 2 to 3 hours.
4. Wake up, take the second dose, and go back to sleep. (Yes, it’s a re-enactment of the old hospital joke where the nurse wakes you up to give you a sleeping pill). Because the Xyrem is metabolized so quickly, you need the second dose for a full night’s sleep.
5. When you awaken 5 hours later, you know you’ve slept well.
Work with your doctor to make dose adjustments, which are required during the first month.
After about 3 to 4 weeks of sleeping deeply like this, fibro patients sense improved energy and less pain. Side effects are for the most part minor. Some patients report nausea and headache, probably from having such deep sleep. Xyrem can be used with other meds, although naturally any previously prescribed sleep meds become unnecessary and would be discontinued.
Be well,
David Edelberg, MD
CBD helps me enormously, as does a few thc drops at night. It seemed subtle but the first time I went off I quickly realised how well it works. .Genestra EFA has helped my brain and I’m thankful. I take tylenol for pain as needed. I eat well, no red meat, no processed foods, and I meditate and also exercise when I can. This as I also have severe osteoporosis. I’m allergic to muscle relaxers, oxycontin etc and antii flammatiry drugs so had to find other way. I also find massage therapy, acupuncture, exercise and being with friends, being outside, being creative helps me . It can be a difficult journey ..best wishes to all
Brenda Bannerman
Hi Brenda,
Massage therapy, acupuncture, exercise, friends and fresh air sounds like a wonderful plan!
Best wishes to you as well!
WholeHealth Chicago
What can I use to help with my migraines. I do take an anitdepressed but i get them alot. Need help asap
Dawn Wonogas
Hi Dawn – Migraines can be so different from person to person, it’s difficult to make a useful recommendation without knowing more. Lots of us diagnose and treat headaches of all types at WHC, and we’d be happy to see you. Please give a call to our patient services staff and schedule a telemedicine visit. Headaches are actually one of my areas of clinical interest, and we can certainly get a good idea of what might be helpful over a video telemedicine visit. Our scheduling staff can be reached at 773-296-6700. Looking forward to helping you sort this out!
-Dr Maurer
cliffmaurer
Today is my first day of taking Savella and I’m having palpitations, weakness, dizziness and a burning sensation in my breasts. I’m going to talk with my cardiologist about continuing this medication because I already have an irregular heart rhythm. I’m pretty much out of options of pain meds for fibromyalgia. Guess I’ll continue living with the pain and try to ignore it as I always have.
Rhonda S.
Milnacipran (Savella), o Xyrem (GHB), e inclusive o Sativex (CBD Oil), estão dando muito mais resultados aos pacientes que estão os utilizando. Eu tive a oportunidade de usá-los na Bélgica e realmente diminuem surpreendentemente nossos sintomas. Mas infelizmente vivemos em um País atrasado e manipulado pela indústria farmacêutica. Digo isto também aos médicos, que não fazem NADA pra melhorar esse sistema podre, que não tem a mínima intenção de nos ajudar de verdade. Apenas somos mais um paciente cobaia pra eles….
Cátia Magali da Silva
As to the FDA being responsible for our pain Drs. cutting back on our pain meds; I actually think it’s due to Medicare putting their oar in. Do these people ever suffer constant pain themselves? They must not or they wouldn’t be so quick to complain to our pain management Drs. about the doses prescribed.
Toni Pozios
[…] Two New Drugs for Fibromyalgia That Actually Work […]
2 New Drugs That Actually Work Against Fibromyalgia | Health Pedia
Aiden Lucas
I was diagnosed with fibromyalgia for 3 years, and it was very painful some days. I was taken methocarbamol to relieve the pain. Sometimes it helps and other days it doesn’t. it was killing me for 3 years, doctor said there was no cure. So I tried to live with it and it wasn’t easy.My childhood friend introduced me to Dr George (Good health herbs home),Dr George fibromyalgia herbal remedy cured me within 6 weeks of usage ,am fibromyalgia free now 100%.for more information visit www goodhealthherbshome com
lucas
I was put on Savella back in 2009 and it did help with the Fibromyalgia pain, however…half of my hair fell out over just one week of taking Savella. This happened to approximately 25% of the women in the practice who were put on Savella. I stopped the Savella but my hair did not all grow back. You can now see my scalp on top of my head, and the diameter of the hair shafts of the hair that grew back is half the thickness that it was previously. Definitely NOT worth the pain reduction I got. I have no idea what happened to any of the men,but then most people with Fibromyalgia are women. I went to a different pain management physician and he uses a device that goes by the name Hakomed. This device was invented in Germany and has been used in Europe for decades. In a year I have gone from taking six Nucynta 75mg , six Methadone 10mg,and six Tramadol 50mg each day just to get the pain down from a 9, down to a 6.
Now I am only taking half of a 75mg Nucynta four times a day. Hopefully I will be able to get off pain medication completely. They call the therapy by the name Horizontal Therapy.Each session is 45 minutes long, they put large pads that look like the ones used with TENS units, but the electrical signal put out is completely different.
At one point, I had bilateral carpal tunnel syndrome. The electrical nerve conduction test that my neurologist did showed moderate on the left hand and severe reduction on the right hand. The extreme cold pain in my right hand was unbelievable, and I had to have immediate surgery to save my hand is what the neurologist told me. My appointment with my pain specialist was on the same day, and when I told him what the neurologist said, the pain doctor insisted I try the Hakomed machine. He had wanted me to try it for the Fibromyalgia pain a year earlier, but I refused as TENS had not helped me at all and I thought of the Hakomed as just another TENS unit. After one 45 minute Hakomed treatment the pain in the left hand was gone and the pain in the right hand was at a 2. It took only a few treatments to have the carpal tunnel to totally go away. Every few months it started to come back, and all it takes is another few treatments to send it away again.
I wish that it was available for at home treatments, but you have to be a doctor to get the machine. They also have to have the knowledge to use the machine properly, it took a few treatments to find which program would work best on my Fibromyalgia pain. There is no one size fits all, but when they find what works for you it really works to reduce pain.
Aelxa Hill
R these meds expensive n would Humana plus pay for it?
Janet Rose
Cost of medications is always variable based on your pharmacy benefit. We recommend patients call their insurance company with questions like this. Your pharmacy may also be able to help determine cost.
Best,
Dr M
cliffmaurer
Hi Marcy
Savella can’t be taken with other psych meds unless cleared by your psychiatrist.
Xyrem has become so expensive ($4,500 a month!!!) that no insurance companies are covering it
Dr E
Does this mess with a person that takes meds for bipolar disorder and board line personally disorder and depression
Marcy Ensminger
Please help me I have fibro so badly I have been taking flu piton for 6months I feel a bit better but can’t even clean my house I’m on so many tablets but I never get a good nights sleep the cremation sounds so good but how do I go about getting it and what about all my other medication
Sue jones
Hi Sue
The Savella, Lyrica, Cymbalta group has been found vastly disappointing and now Lyrica is being linked with birth defects.
Basically all the facts you make in your e mail are correct including the one on overdoses. I agree that carefully taken opioids should not be classed with heroin overdoses. In my book Healing Fibro, I discuss the bad behavious of male physicians toward women in pain. If you simply have no access to methadone and hydrocodone, you might ask about time release tramadol combined with tme release cyclobenzaprine
Dr E
I’d had Fibro since 1997, and read nearly every book out there, and my husband, a Pharmacist watches for new drug development for Fibro on multiple sites. I found out that Lyrica caused dependency before it was labelled for it. My insurance company insisted that I try gabapentin, so I was being slowly weaned of Lyrica & got terribly sick. My husband realized that I was in withdrawal, so he got ahold of my doctor.to slow thing down further. The Gabapentin was horrible, so back on Lyrica. A couple of years later, I went off Lyrica completely and didn’t feel any different than when I was on it, but it had helped in the very beginning. Then I lost the 35#’s I’d put on with the Lyrica. My knees appreciated that! I am on a lot of meds for multiple medical problems including severe IBS. After the CDC decided that patients with Fibro, Migraines and chronic back pain are not helped by narcotics, so they should all be taken off of them. After many other meds, my provider put me on 5 tablets of 10 mg Methadone for my fibro pain and 10/325 mg Hydrocodone(1-2 tabs bid) for break through pain. It wasn’t perfect, but other than flares, this regimen reduced the pain enough to function many days. The day after the CDC’s draft report came out, my clinic Essentia Health decided that regardless of how well a regimen was working and whether or not the person is at risk for an overdose, providers had to immediately start weaning every single patient off all narcotics. Just as I am very angry, so is my provider. I asked my husband who are all these people overdosing on Methadone and he told me that the vast majority are getting liquid Methadone for several days at a methadone clinic and they drink the entire bottle at one time. Then it’s easy to overdose. So I asked about all the talk on TV about the opiate overdoses, and my husband told me that from what Pharmacists read and are told, those are deaths and overdoses from Heroin. Why those deaths are impacting me, I do not know why. If I wasn’t being helped by my medications, I would go back to my doctor, not pop extra pills. Chronic constipation is a problem that we are working on, and I wanted to drop my dose of Methadone so that if I have a surgery, my Doctors can find something to help me with pain. My doctor refused to drop my dosage immediately because I was clearly in the middle of a flare. He’s been trying to find a way to wean me very, very slowly after prior problems, so I am down to 4 tablets a day, and I am already having problems with the pain. I hate having to take the Hydrocodone, so, I try to only take one HC, and one Tylenol. That isn’t helping the pain enough for me to function. Any ideas?
Sue Horoshak
This is great news for those of us who have suffered from fibromyalgia. Could you please send me as much Information to share with my family doctor. It really makes sence to take Savella and Xyrem in the treatment of fibromyalgia.
June Gates
June. Take a look at Dr. Edelberg’s book, “Healing Fibromyalgia”. There is a section in the book for your doctor.
https://store.wholehealthchicago.com/shop/healing-fibromyalgia/
Dr. R
Hi Linda
Both Savell and Xyrem are prescription only. Your doctor simply writes an rx for Savella and your pharmacist fills it.
Xyrem is trickier. You need to find a doctor trained with Xyrem and he orders it directly from the drug company. They in turn mail it to you. Insurance companies hate to pay for it because of price, almost $6,000 a month (!!) so they will ask a lot of questions about your need for it. You’ll need to have had a sleep study since it only approved for chronic daytime sleepiness. It never got FDA approval for fibro and your insurance company uses that as an excuse to not pay for it
Dr E
How and where can it be purchased
linda
I could never use that. We have frequent power outs here and no alarm clock would wake me up reliably.
Nancy Smith
My wife has been on Butran patches for about 5 years now. They start at 5mg and go up to 20mg. They have seemed to be the only thing that works for her. They are like a nicotine patch as they release a narcotic into your system as needed. So if u do alot of hard work it works faster and the patch runs out. She changes hers once a week and near the end sometimes has to change a day early or takes a tramadol to help get her to the next day. I dont know if anyone else has tried these but if not they sure have helped my wife. Check with your doctor about this option.
Mike
My name is Mary and was diagnosed with fibro about 10 years ago. With all the hullaba with this diagnosis I did not believe this is what I have. Now, 10 years later the medication I was taking for pain just up and stopped working (sorry, can’t remember the name of the drug). Now my new MD (the old MD retired who gave me the drug) told me that I needed to be taken off this drug because of heart issues. Have been on Paxil for many years at 40 mg daily so now the MD had me decrease to 20 mg/day which I did for two weeks and now I’m on it every other day. As I sit here and type this comment the pain in my feet, ankles, legs, entire body is really very painful. I see my MD on 12/28/15 and hope she will give me something like Lyrica (does that work)to help me. The only way of course she would give me Lyrica is to be taken off the Paxil. I do have more health issues but will discuss later.
Mary Hansley
Have any of you tried Ketamine infusion therapy.
Joy
I need this drug!
Kathleen Sowers
thank you dr e…flexeril doesn’t do anything, nor does skelaxin…like i said, i’ve tried everything & combos over the last 20+ years…just wanted to hear that these doses won’t kill me! which i already knew! i will try and keep up with your blog & maybe learn something i don’t already know about my body & fm…good luck to those who suffer…
thanx again for answering so quickly!
loretta s
Hi Regina
Since I wrote about these in 2009, there have been some changes. First, Savella has turned out to be disappointing–not as effective as originally thought and a high discontinuance rate among patients because of side effects. Second, although Xyrem does work for fibro, the company was never able to clear the hurdles for FDA approval specifically for fibro. Without FDA approval, insurance companies simply will not cover it. In response to fewer potential customers, the manufacturer had to raise the price to (ready for this) $3,500 a month! (over $100 a day!)
While not using either of these meds, I have had better success with Amrix, a time release muscle relaxant, combined with TramadolER, a time release pain med.
I discuss these in my book “Healing Fibromyalgia.”
Dr E
I am very interested in these 2 new drugs for Fibromylagia. Will you keep me posted? TY Regina Brewington
Regina Brewington
Hi Loretta
Your combination isn’t going to “kill” you but all those pills can simply be inconvenient. You probably could get by on three Somas and three Flexerils (a different muscle relaxant) and for pain, use a time release pain med oral morphine called MSContin which is dosed every 12 hours and gives you continuous pain relief. The flexeril and MS contin are both comparatively inexpensive and would allow you to reduce your total number of both Soma and Norco
Dr E
would like another doctor’s opinion…i am almost 57 and have suffered with fibro for approx. 1/2 my life…was diagnosed in ’95…and have been on a multitude of medications and combos of meds. i’d try anything and get ideas from other fm sufferers!! the last 8ish years i have have been on a regimen of somas (10 daily) & norcos (6 daily), also gabapentin, lexapro. i have been able to do a job that is very physical…i have always had sleep problems and over the years have tried many different meds…i now have a doctor that is telling me i cannot take that many somas & norcos because i could die…REALLY???! i’m functional & happy! at 1 point i was bedridden for 3 months…i DO NOT WANT TO GO THERE AGAIN!!! i currently have NO insurance..i have had the same pharmacist for 15+ yrs and do not doctor shop! i think i’m going to be completely hopeless…any thoughts?! thanx
loretta s
I find this very interesting indeed. An old and dear friend sent me the link to this article. I wondered about taking this while also taking Nucynta CR and IR for breakthrough pain, but I noted a comment by the doctor about taking it with additional pain relief medication. I will ask my doctor about this and refer him to this article. My sleep is sooo very erratic, I have a backwards circadian clock to boot. I cannot remember having a refreshing, deep sleep. I just cannot even fathom it anymore. Thank you so much for writing this. I wish it was common knowledge.
There are so many of us who suffer brutally, with no support system. We must be our own advocates and do the research ourselves, or suffer the consequences. IF we can even find a doctor that will take us on, uttering the words “chronic pain patient” seems to be some horrible, dirty words. Doctor’s offices would immediately tell me, “No, we are not taking new patients!” And promptly hang up. Took me 3 years to find another doctor when mine moved away! 3 years of needlessly suffering without pain medication beyond a lot of Aleve (900mg + per day).
Shannon
Hi Judith
Tramadol for pain and cyclobenzaprine as a muscle relaxant are both available in Australia. Taking Ambien (zolpidem) with the cyclobenzaprine should give you a decent night’s sleep
Rx’s from your doctor are needed for all three
Dr E
I live in Australia & the thing Doctors give here are anti depressants which I cannot take. Love to hear of anything the lack of sleep makes life miserable.
Judith Lay
age65,FMS,CFS, IRRITABLE B S, 15YEARS.TRAMADOL LONG100MG MORNING, LYRICA 75MG EVENING,WORKS WONDERFUL FOR ME. FASIGYN, TINIDAZOLE SHORTENED THE DIAROHHEA.
MUSCLE RELAXANT , DIAZEPAM , MAKE ME FEEL WEAK. SYMBALTA DID NOT WORK FOR ME. PRACTISING BREATHING MEDITATION (ANAPANA BUDDHIST METHODS) PLAN TO TRY ,GOOD NIGHT SLEEP AND CHIROPRACTICE CONSULTATION FOR NECK PAIN. STARTED TAICHI CHINESE MARTIAL ARTS FOR SNR CITIZENS, WATER 6GLASSES A DAY. JUST SHARING MY EXPERIENCE.
A T Thein Dr.
Hi Ashley
If you’re in the Chgo area, just schedule with WholeHealth Chicago and we can try to get the Xyrem. It actually is a safe medication unless misused
Dr E
I am 29 years old and I have suffered from insomnia pretty much my entire life. I’ve been to numerous doctors and am currently on a cocktail of Ambien (it stopped working years ago for me) xanex, and 18 (not exaggerating!) supplements a night to fall asleep.. This keeps me asleep for a few hours and then I naturally wake around 2-4am for the rest of the day. I am completely miserable and I don’t feel like there’s light at the end of the tunnel at this point.
Is it hard to find a doctor in Chicago that would switch me from the cocktail I’m on now to GHB? Is this something that is addictive or life threatening in any way?
Thank you!
Ashley
Ashley
Hi Mary
Xyrem still remains an excellent med for fibro (unlike Savella, Lyrica and Cymbalta which have been very disappointing). The only problem is that very few doctors are willing to prescribe it and even fewer insurance companies are willing to pay for it. As of this month, Xyrem is $4,000 a month. That is not a misprint. Most of the patients who had been using Xyrem were told by their insurers it would no longer be covered. That said, it’s not totally impossible to get Xyrem covered but you and your doctor can expect to jump through a lot of hoops
Dr E
I have fibromyalgia, advanced tmj, degenerative disc disease the fibromyalgia has taken over my life I am a Mayo patient but my primary dr is stuck on what I have been using for 3 years I am very interested in the Xyrem I am in so much pain that I don’t know what to do please help
mary senterfitt
I was in a study with Zyrem. Took the drug for about 4 or 5yrs. Had dangerous & very crazy side effects. One if many was sleep eating, I decided to go off the med. when I got up to eat, sitting in kitchen on my bar stool I feel asleep, feel forward & flat on my tile floor, busting my noise. I decided I was done with this crazy drug
Tammy G
Lyrica and Cymbalta did absolutely nothing for me. Just because a drug is “approved” doesn’t mean it’s actually effective.I started with Savella about 3 yrs ago & it’s been great!!!! There is one problem that I learned the hard way. If you drink an adult beverage, the combination will result in severe nausea and vomiting. Otherwise I highly recommend it. I have been with a pain management specialist for quite some time and we’ve learned that you have to find the right cocktail of meds to work together. A little of this and some of that. Small adjustments to tweak the levels for the individual person. My husband has severe nerve pain from surgical nerve damage. His wonder drug is Gabapentin. Everyone has to figure out what works best for them.
Liz Ott
Fibro patient 14 years suffering
Victoria
As any fibro patient, always desperately searching for answers.
cheryl
I would like to have information about anything new about Fibromylagia .
Thank-you
Regina
Regina Brewington
I’ve been on Xyrem for 2.5 years for narcolepsy. I had terrible chronic all-over body pain before starting and it’s gone. The schedule is very worth it. I actually divide the 9g into 3 doses/night with my doc’s approval, because my sleep was so fragmented, it only keeps me asleep for about 2 hours. But once I take a dose, I’m back out pretty quickly. My insurance shells out over $10,000/month for this which should be illegal as it costs pennies to make. I was reaching it’s use for fibromyalgia for a friend when I stumbled on this blog. I hope the FDA will eventually approve it for fibro. For me it was a God-send!
Laurie
Thank you for this information. I was diagnosed 2003 and was on savella 2010 for 9mos. Had to quit when constipation became a big problem, but it did work for the pain. I am not on meds now, advil when needed try now to over do it, 3-4 days a week but when a flair up comes use it 2x a day. I do take 10ml of ambien but often feel tired and in pain when I wake (like I have been fighting all night) I think it’s just the amnesia
makes me for get I have not been sleeping well. How can I try xyrem, how much will it cost, and what type Dr.
Thank you for your help. Pat Harris
Patricia Harris
To Pat.
Probably best to start with your primary care physician. Cost will depend upon your insurance coverage…
Dr. R
Hi Claudia
Which drug are you talking about? Between my article and the comments that follow, several are mentioned.
Dr E
HOW CAN I GET THIS DRUG? I am desperate!
Claudia Webb Elmore
I have migraines (since a kid), hypothyroid, asthma, fibromyalgia, lumbar disc issues, and myasthenia gravis. I am on Cymbalta, Lyrica, tramadol, levothyroxine, baclofen, singulair, and mestinon. My MG is mostly in remission, thank God, and I take herbal anti-inflammatories for pain. Because of serotonin syndrome I have to be careful with Imitrex for migraines. The big problem is sleeping. As noted here, when I sleep well I feel pretty good, comparatively. I can find NOTHING, even Ambien, which helps me sleep. This would be a Godsend for me. Of course, I’m 65, and I think my PC Doc and my insurance (am on disability) just want me to die. Well, not planning on it! My primary care doctor is more interested in my cholesterol than my fibro. Need a good doc east of Atl that can help.
Nancey
To Nancy. You might try looking for a functional medicine doctor at this website; The Institute for Functional Medicine. Good luck. https://www.functionalmedicine.org/practitioner_search.aspx?id=117
Dr. R
fibro and headaches for 45 yrs. 80 yrs old. sure could use some help.tried almost everthing.
thanks.
80 yrs old .headaches and fibro for 45 yrs.all i hear is buckel up. go home and live with it. sure could use some help. willing to be a quiney pig. thanks for being there.
john schoon
This sucks! I knew it was coming but N at such a jolt. I’ve been under close supervision for the last 2 years and I’m being dropped from 10 MG of oxy to Tylenol with codeine. I was on narcotics for 5 yrs for one broken bone to bulging disks. THE AFTER THE FDA CA ME DOWN ON MY DR, FOR FEAR OF HIS LICENCE (understand that part,)But I’m scared, am I going to go through some bad withdrawals He didn’t have time to explain. I’m tired and so disappointed. Nows not a good time. Don’t get me wrong I get it, but not now around Christmas. REALLY!
Maureen
To IDALYS
All the new meds that came out for fibro during the past four years (Savella, Cymbalta, Lyrica and Xyrem) have turned out to be very disappointing because of the side effects (many of which you described in your letter).
My current regimen is a simple one (and I discuss this in my book “Healing Fibromyalgia.” These are: (1) Amrix 15 mg in the evening, a time release muscle relaxant, (2) combined with any of several time release pain meds (Tramadol-ER, Nucynta ER, Opana-ER, Oxycontin). Because for some people the effect of the pain meds declines after three months, changing from one to another works well. Frequently increasing the dose is a bad idea because it leads to drug dependence and addiction. Keep pain med doses on the low side
Dr E
Finally some hope,about 2008 I read and researched SAVELLA AND TO MY RHEUMATOLOGIST SURPRISE I TOLD HER ABOUT THIS NEW MED.and at THE TIME SHE QUICKLY STARTED ME ON IT BUT FOR ME IT TRIGGERED MY IBS W/constipation so we had to stop it SINCE my constipation can become very difficult to control now I take lyrica but hatE how though it works it makes me VERY hungry within 8-12 hrs.of taking it and at 227lbs.this is the last thing I NEED I’M TRULY DESPERATE TO FIND SOMETHING THAT WORKS VERY WELL IVE HAD THIS CURSE ALL MY LIFE BUT WAS FINALLY DIAGNOSED IN 06,OCT.NOW I’M 50AND OFTEN FEEL AS IF I WAS dying WITH the PAIN and in N.Y. SOME HOSPITAL F O NOT CARE OR TAKE THIS CONDITION SERIOUSLY SO WHAT CAN I DO
IDALYS
I’m interested About new medications and studies
Robyn mogul
There is a drug now in 2b phase. It approaches fibromalgia by improving sleep quality. It is owned by Tonix pharma and may be finally approved next year.
sal_wer
This is the first time I’ve been to your blog. Like you, I always listen to the side effects and wait for “death.” I’m not real fond of a lot of drugs that are currently prescribed for Fibromyalgia for that reason. The weight gain of Lyrica, and the fact that it made me very squirrely, was enough to put me off. I’m now interested in Savella. I didn’t realize the fact about the weight gain. I have thyroid issues so I don’t want anything to add insult to injury. I enjoy your writing! Thanks!
Rosemary Lee
Seeking Equilibrium
Rosemary Lee
flare ups: always stress related
Lyrica reactions not good!!
Massage for Fibro patients not recommended
I’ve had this condition for many years diagnosed
by an alternative medicine doctor before my family
doctor had even heard of it. If doctors haven’t been taught in Medical School, they don’t believe it. Now even Mayo teaches it. Age 84 and better.
Rosemary Lowry
I have used Xyrem and lyrica for more than 5 years. My pain and exhaustion did not disappear, but they got good enough to function almost normally. I highly recommend them. I’m not diagnosed with Celiac Disease but, becoming Gluton free also helped.
Heather
I’ve been on Xyrem since 2005. It is my wonder drug! Without it I am bedridden. This is an old article because Xyrem was shot down by the FDA and not because it didn’t work. It works miracles. Studies were shown and people testified. The FDA turned it down because they were afraid of more GHB getting out on the streets but not about our lives. I’m sure many lives would have been saved if they had approved this for us. They felt there were too many with fibromyalgia so we get to suffer. They approved Xyrem for narcolepsy since the population is much smaller.
My insurance company has started messing with my medications it is only a matter of time before I lose my Xyrem. I can’t imagine living the rest of my life in bed! If someone could find something like this without GHB that would be such a blessing!
Carla
oh my goodness, can it be true, I had such high hopes for Lyrica, too. “When you wish upon a star…”
Deborah Myers
How you bay this from Canada .
I have severe pain for more the 10!years.
I use cymbalta-lirica- porcacet and oxyneo 20 mg .
Plus sleeping pills .
I hope something better help people with fibromyalgia .
I suffer so much!
Thank you
Magela
You’re right – I wouldn’t do that! First of all, if I am woken up, I can never get back to sleep because the pain comes rushing back and sleep is then impossible! I take half a sleeping pill and get 5 hours. I don’t see the benefit of this. And I never take new medication in a full dose, only 1/4 or 1/2. If a bad reaction happens, a full dose just makes the time until it wears off longer – a small amount is easier to manage. Sounds awful! Probably tastes bad too!
Linny
full steam ahead
ken
i suffer from fibromalatia phariatic arthritus and phoriasis
lorie hannah