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Johns Hopkins Health Alert

New Option for Fibromyalgia Treatment

Comments (12)

 

UPDATE

 

As part of our ongoing effort to ensure that this website is up to date, we have determined that the information in the article New Option for Fibromyalgia Treatment is no longer current, and has therefore been removed.   

 

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Posted in Arthritis on March 23, 2009
Reviewed December 2010


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Health Alerts registered users may post comments and share experiences here at their own discretion. We regret that questions on individual health concerns to the Johns Hopkins editors cannot be answered in this space.

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I tried Lyrica last year for fibromyalgia, which I have had for about ten years. It does sound good, and worth a try. However; It is a drug, and all drugs have side effects. I had to stop taking Lyrica because it affected my mood. I became irritable at first, then emotionally numb, and finally I began zoning nearly all time. I did not talk unless I was asked a question. I simply did not care about anything at all. My Doctor felt I was heading towards suicidal ideation. I felt better with-in 2 days after I stopped taking it. My current medical issues might have played a part in my reation. I have complex Post Tramatic Stress Disorder and abused Child syndrome, both of which are a result of 42 years in abuse. I take medication of course, and am working through the issues caused by my past. I do have a lot of self honesty, and have studied Psycology, Neurology, and some sociology most of my life in-order-to understand the life I was born into. So, I am very intouch with changes in my moods. I tell you that so you know I am not un-informed, nor am I just complaining. Lyrica does help many people, but it is nothing to play with. Be watchful of changes in your mood if you decide to take it. You are the only one who can really say how a medicine is affecting you. The Labs that make all drugs are companies in business to make money, remember that. I am not saying I know the makers of Lyrica are pushing a bad drug, but they are not Psycologists either. just be careful. I have found relief from Cymbolta at 90 mg. a day. I also take Magnesium, which helps. Don't give up looking for solutions, and you will find them. Ciao

Posted by: kam-A voice from the bottom | March 28, 2009 3:13 AM

Gabepinton and Gabatrel (sps?) both caused me to have panic attacks after just a few days.

When I was put on Lyrica, I couldn't believe how much it helped. After a few months, I began to develop a weakness that made it very difficult to get out of a chair, without something to pull or push upon. I read the really fine print of the info sheet, and found the statement that it can cause muscle weakness.

I stopped it and after a few days, started getting much stronger.

A pharmacist friend told me to try 100 mg of vitamin B1 - every day. He said it might take a month to see the difference. I just got B100, and it really has helped. I still have some problems during these changes in the weather, but all in all, I do think I'm better.

Posted by: quilts4you | March 28, 2009 11:17 AM

Greetings, Of those that have tried the drug, have any of you experienced problems with disturbing thoughts or ideas? I took Lyrica for over a month for chronic neuro-muscular pain in conjunction w/ other pain meds [MS Contin 60 mgm (BID), Oxy IR 5 mgm (PRN breakthru pain)] and HBP med [Cozaar 100 mgm]. Around the 10th day, I noticed a marked change in the type of dreams (more violent) and entering the third week, thoughts of violence towards strangers. After speaking w/ my doctor, he d/c the med and said that some abnormal thoughts were an "uncommon" side effect but noted in the literature. I was not under any undue stress at the time, nor did I experience any change in sleep habits, or any other stressor(s) that might suggest any underlying psychiatric condition. Since d/c, I have not had any violent dreams or thoughts. My doctor is believes that it was a result of the medication. Regardless, I was not on the medication long enough to determine its effectiveness in lowering my pain. Has anyone experienced anything similar? I would hate to think there is medication that might alleviate or lower my pain, but not take it b/c of these thoughts that might only be a temporary side effect.

Posted by: legman | March 28, 2009 2:19 PM

When I called the study on Gabapentin to the attention of my rheumatologist she said it helped only with peripheral nerve pain and not the muscle pain of fibromyalgia. I have been on Gabapentin for over 4 years but dosage has never exceeded 900 mgs/day. I'm not even sure it helps with muscle pain but when I have tried to quit it a few times in the past, I seemed to feel worse. I'm interested in hearing from people who have taken Gabapentin in dosages from 1200 to 2400 mgs/day and whether or not it has helped them with muscle pain and/or restorative sleep.

Posted by: rldsodak | March 28, 2009 3:38 PM

I,too, was diagnosed with Fibromyalgia. I was treated for this complex disorder for nearly 10 years, enduring all of the painful symptoms.

I was referred to a website, SweetPoison.com, where I learned about Aspartame poisoning that mimics Fibromyalgia and a host of other disorders. I eliminated aspartame from my life and am happy to report that I have been symptom free (and medication free) for the past year. It is tricky to find all of the sources of this harmful substance. Even some vitamin supplements contain aspartame. For me, the big culprit was diet coke!!

It certainly won't hurt to check this out. There are NO side effects to eliminating substances from your body.

Posted by: bacoyle | March 28, 2009 6:27 PM

I have tried lyrica and it comatosed me. I was only on lowest strength for three days and could not handle it. I know meds take time but I need to work and couldn't taking lyrica. I also had the gabe? and basically same thing. I take cymbalta in am and pm different strengths and ativan. The pain level is always high for me. They really need to find something for people who can't tolarate meds well. I know asking alot but I am ready to quit job and try for disability cause too much pain and too many other things now happening to me. Very depressed with my health right now.

Posted by: martyj | March 29, 2009 11:05 AM

My pain management specialist put me on Neurontin for nerve pain a few years ago. I've worked up to 800 mg and I've been lucky enough to be able to tolerate it (she says I'm one of a few of her patients who can). A few months ago, she noticed that I seemed stiff and sore. She checked all the fibro trigger points and sure 'nuff. I tried weening down the dose of Neurontin a couple of weeks ago and noticed that the hurt I feel all over got worse when I did. I'm back on the 800 mg. and feel better.

Posted by: ctrexler03 | March 31, 2009 9:46 AM

I also took neurontin and Lyrica for fibromyalgia. Both made my mouth get red and raw. I know that it was the meds because I stopped taking them and it stopped. When I restarted the meds, my mouth got red and raw again. It hurt to drink a carbonated drink even. The best thing I have found is what I am on now--nortriptyline. I take a 50mg capsule at night. I was on oxycontin 40mg 3 times a day and now I am on Percocet 10/325mg 3 times a day as needed. Sometimes I only need 2 a day. Amitriptyline also worked but it made me drowsy and just felt bad. I tried all the new meds that came out without help until my new internal med doctor tried me on the amitriptyline and then the nortriptyline. I felt better in about 3 days. If you haven't found anything to help ask your doctor if he/she will let you try one of these meds.

Posted by: zsazsa55 | April 3, 2009 3:53 PM

Hi, I have fibro (was diagnosed 9 years ago) and have tried all sorts of drug cocktails over the years as I'm sure you'll all appreciate. I have been on 600 mg Pregabalin a day for a year now and am currently weaning off it in an attempt to identify "what works" and t find out what is causing my sudden weight gain and ureology problems. I have experienced several off the side effects already mentioned including the violent dreams, sore mouth and others, but have to say I am finding that coming off this drug is hell! The neurologic pain is excruciating and I feel awful, at the present moment (half way through the weaning process)I'm really not sure if giving it up is a good idea .

I am booked in for a lithocain infusion late this month and wondered if anyone else had tried this?

Posted by: JayneL | April 6, 2009 3:49 AM

I was diagnosed with Fibro by my general doctor who admits he and most general doctors do not know that much about the condition. He sent me to a Rheumatologist for a second opinion and he diagnosed it with the pressure point test. I started on gabapentin and was on it for a year at the highest possible dose. I was groggy and in a severe fog all the time and it effected the right side of my face. It made my right eye droop and the droop was traveling down to my mouth and my smile was starting to look lopsided. My doctor took me off and put me on Lyrica. The side effects were horrible. Muscle weakness, headaches bordering on migraines, added pain, foggyness to the point that it was difficult to drive. I found by researching the web another med called SAVELLA. It was approved by the FDA for FIBROMYALGIA in January of '09 while Lyrica was approved in June '09. I am on it now but am not finding that I have the same side effects or much if any pain relief. I am going to see a Neuologist in April for a further eval and see if he has any ideas.

Posted by: dentalgroomer | March 21, 2010 7:31 AM

I was diagnosed with Fibromyalgia in 1999. I have tried many things to help with the pain and fatige. About 3 months ago I was referred to a pain management doc and he put me on Lyrica 50 mg, 3 times a day and increased it to 100mg 3 times a day. Since then I have gained weight and have not had any relief from the pain. I also experience dizziness often. My moods are unpredictable. I tried to stop taking it and that was not a nice experience. I had severe stomach cramping and diarreha for 3 days until I went back on it. I exercise daily (even when I hurt terribly) and eat healthy for the most part. I feel like I am at a loss when it comes to relief from the symptoms(as I know many of you do also).

Posted by: jennyc1970 | March 22, 2010 12:38 PM

I have been diagnosed with Fibromyalgia AND now Osteoarthritis. For the Fibro I have run the gambit of drugs. Neurontin, made the right side of my face droop and I was pretty much a zombie after a week. Lyrica made the miganes that I get much worse and more frequent. Savella & Cymbalta did nothing for me. My general doc is wonderful but is also the first to admit that he and most general docs do not know or understand much about Fibromyalgia. I was taking 2 mg of Klonopin (an anti anxiety drug) and Tramadol (this is one step down from an opiate but has no effect on me so I am weaning off) 50mg 4x per day. I am now seeing a Rheumatologist who has put me on Norflex 100mg (a muscle relaxer)for night time to help me sleep as the pain would wake me and keep me up 3-4hrs at a time. So far so good! I am taking only 1mg of Klonapin and the Norflex at night to sleep and it has made a HUGE difference in my sleep. I am planing to drop the Klonapin and only take the Norflex starting tonight to see how that works. Will keep you all updated on my progress. God Bless and I hope you all feel better. Marie

Posted by: dentalgroomer | July 7, 2010 8:31 AM

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