Discussions By Condition: I cannot get a diagnosis.

searching for a drug to replace Klonopin in the treatment of Myofascial Pain Syndrome

Posted In: I cannot get a diagnosis. 10 Replies
  • Posted By: Anonymous
  • September 26, 2007
  • 05:51 PM

This is a bit lengthy, so please bear with me ...

I have myofascial pain syndrome. I've had it for a while, since mid 1994. Until early 2006, my pain was managed semi-successfully with the benzodiazepine Klonopin. Relocation to a new city necessitated a new pain management doctor. The new doctor wanted me off of Klonopin as he doesn't believe that benzodiazepines are appropriate for pain management.

I was on a high dose (3 mg daily, equivalent to 60 mg of Valium daily) for over ten years. The doctor had me taper to zero in just under a week and a half. What followed was the worst two weeks of my life ending with a seizure and an ambulance ride to the hospital where Klonopin was reinstated.

I commenced a much slower, safer taper over the next half year, but I began this second taper before recovering from my ill-advised first taper. I became so sick that I felt life was no longer worth living. Finally I put myself into the hospital to get off of the Klonopin safely.

In the year following my release from the hospital, my major health concern was the multiple symptoms of the benzodiazepine protracted withdrawal syndrome, which I won't go into here. Finally, those symptoms have mostly abated and I'm ready to get back to living my life. Just one problem, I no longer have an effective treatment for my myofascial pain syndrome.

I have seriously considered simply reinstating the Klonopin as it was once the most effective treatment for me. But however ill-advised my doctor's too fast taper was, he was right about one thing. Benzodiazepines aren't appropriate for long term pain management. The reason is that the body becomes tolerant to the drugs and they no longer work leaving you physically dependent on them (as I was) despite no longer providing any benefit.

Last week my husband and I went out to dinner. There was a long wait for a table which we spent in the bar. Consequently I got drunk ... and my pain decreased dramatically. Now I've been told that alcohol hits on the benzodiazepine receptors of the central nervous system. In other words, the alcohol was doing the job that the benzos once did. This set me to thinking.

Since taking up a life of alcholism isn't really an option and going back onto benzodiazepines presents its own set of problems, what OTHER medicines work by the same mechanism and might they help me?

Reading on the Internet suggests that benzos inhibit sustained repetitive firing of nerves by inhibiting the sodium channels. Other drugs that work by the same mechanism may include phenytoin (Dilantin), mexiletine (oral Lidocaine), lamotrigine, zonisamide, etc. So my question is, is anyone out there taking one of these drugs for myofascial or other chronic pain? And what has been your experience with the drug? Any and all replies appreciated. Thanks!

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10 Replies:

  • This is a bit lengthy, so please bear with me ... I have myofascial pain syndrome. I've had it for a while, since mid 1994. Until early 2006, my pain was managed semi-successfully with the benzodiazepine Klonopin. Relocation to a new city necessitated a new pain management doctor. The new doctor wanted me off of Klonopin as he doesn't believe that benzodiazepines are appropriate for pain management. I was on a high dose (3 mg daily, equivalent to 60 mg of Valium daily) for over ten years. The doctor had me taper to zero in just under a week and a half. What followed was the worst two weeks of my life ending with a seizure and an ambulance ride to the hospital where Klonopin was reinstated. I commenced a much slower, safer taper over the next half year, but I began this second taper before recovering from my ill-advised first taper. I became so sick that I felt life was no longer worth living. Finally I put myself into the hospital to get off of the Klonopin safely. In the year following my release from the hospital, my major health concern was the multiple symptoms of the benzodiazepine protracted withdrawal syndrome, which I won't go into here. Finally, those symptoms have mostly abated and I'm ready to get back to living my life. Just one problem, I no longer have an effective treatment for my myofascial pain syndrome. I have seriously considered simply reinstating the Klonopin as it was once the most effective treatment for me. But however ill-advised my doctor's too fast taper was, he was right about one thing. Benzodiazepines aren't appropriate for long term pain management. The reason is that the body becomes tolerant to the drugs and they no longer work leaving you physically dependent on them (as I was) despite no longer providing any benefit. Last week my husband and I went out to dinner. There was a long wait for a table which we spent in the bar. Consequently I got drunk ... and my pain decreased dramatically. Now I've been told that alcohol hits on the benzodiazepine receptors of the central nervous system. In other words, the alcohol was doing the job that the benzos once did. This set me to thinking. Since taking up a life of alcholism isn't really an option and going back onto benzodiazepines presents its own set of problems, what OTHER medicines work by the same mechanism and might they help me? Reading on the Internet suggests that benzos inhibit sustained repetitive firing of nerves by inhibiting the sodium channels. Other drugs that work by the same mechanism may include phenytoin (Dilantin), mexiletine (oral Lidocaine), lamotrigine, zonisamide, etc. So my question is, is anyone out there taking one of these drugs for myofascial or other chronic pain? And what has been your experience with the drug? Any and all replies appreciated. Thanks! I am going to suggest a non drug therapy - acupuncture. Have you tried it or considered it? Acupuncture releases endorphins in the brain and is very relaxing. It can also help treat the pain and promote a state of balance. Please consider this I think it would really be helpful.Best wishesDOM
    acuann 3080 Replies
    • September 26, 2007
    • 06:42 PM
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  • I tried acupuncture twice in the past, once with a pain management doc who was trained in acupuncture too and once with a woman who was trained in China and came highly recommended. I gave each practitioner a fair trial, seeing them for multiple sessions, but never perceived any benefit from the treatment. I'm not opposed to giving acupuncture another trial at some point in the future, but I can't do it now as it's not covered by my health insurance. Having been out of work for almost two years now, I can't afford anything except covered treatments.It isn't my intention to rely solely on a medication to solve my problems. I just need something to provide a little pain relief so that I'm able to be more physically active, which I'm convinced is the true path to being the healthiest that I can be.Thank you for your response.
    Anonymous 42789 Replies
    • September 26, 2007
    • 11:50 PM
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  • I am in need for somethinf to help me sleepa dm with my anxiety. Problem was that the Klonopin was grat, but ot I wane off and withdrawaling...helo me!!! Contact me on 111.myspace.com/dayanalunamoonordmendsemn@yahoo.comThank youBrightest BlessingsDevin
    Anonymous 42789 Replies
    • November 18, 2008
    • 11:54 PM
    • 0
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  • It's been over amonth since your last post,but I thought I;d try anyway.Yes,Dilantin has been used in chronic pain syndromes.I'm not familiar with the other meds you mentioned.
    richard wayne2b 1232 Replies
    • January 2, 2009
    • 05:05 PM
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  • The standard treatments include: · medications such as anti-inflammatory agents and muscle relaxers · physical therapy utilizing such modalities as cryotherapy and electrical stimulation · treatments directed toward reconditioning of the muscle such as myofascial release, stretching, reeducation, and strengthening.Trigger point injections (see Injections) can provide excellent results. In general, if the problem is only muscle, relief should occur on relatively short order. If pain persists there is usually another underlying source that is causing the muscle to stay in spasm. This may include torn ligament, nerve irritation, arthritis, disk disease, hormonal imbalance, stress or mechanical problems. Your doctor must first diagnose the underlying condition, and then treat it along with the muscle component. Even in the presence of a second condition that perpetrates a myofascial component, the majority of people do well.
    Anonymous 42789 Replies
    • January 2, 2009
    • 10:45 PM
    • 0
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  • It's been almost two years since I started this thread, so my circumstances are a bit different now.When I made the first post in September of 2007, I was seeking a way to avoid reinstating Klonopin because I knew that, while it would give me immediate relief, there'd be a price to pay down the road. However, by the end of November 2007, the pain and depression had become too much for me and I DID reinstate the Klonopin.Almost overnight things improved for me. I enjoyed the holidays that year, I moved to a new residence, I got a part-time job, I went on vacations and I moved again. Then, in June of this year, I became tolerant to my Klonopin dosage, just as I knew I would. I had hoped it would take longer to happen.So now I STILL don't have an answer to my problem and, even after I find one (a seemingly impossible task), I face another terrible taper off the Klonopoison.In Mena's response from earlier this year, she says, "If pain persists there is usually another underlying source that is causing the muscle to stay in spasm. This may include torn ligament, nerve irritation, arthritis, disk disease, hormonal imbalance, stress or mechanical problems. Your doctor must first diagnose the underlying condition, and then treat it along with the muscle component."Lack of diagnosis has been my challenge going all the way back to 1994. I've lost count of the number of doctors I've seen, the tests and procedures I've had done, and the medicines and therapies I've tried. And God only knows how much money I've spent (and lost as a result of not being able to work) chasing after my diagnosis.An honest doctor once said that the reason that people like me have trouble finding a doctor who'll take them on as a patient is because we're "high maintenance, low reward." Doctors go to medical school because they want to help people. A patient that they can't help is fundamentally unrewarding. In frustration, they decide that "we must not want to be well. That somehow we're doing this to ourselves. Perhaps we like the attention."I don't see how I'll ever arrive at a diagnosis when no one even wants me as a patient. I know I'm not the only one. A forum whose name is "WrongDiagnosis.com" is probably busting at the seams with people in similar circumstances.Some stories about how you found a good doctor might be very helpful for those of us who haven't yet.I may repost an edited version of this as a new thread since it likely won't receive much attention buried here.How do we find a doctor who's willing to work with us?
    Anonymous 42789 Replies Flag this Response
  • okay, I have the same story exept with military background,I am actuaaly in the va hospital for the condition myself. Combine valium with an opoid to get you through until you find a pain doc. most wont agree, but i know what helped me. then, find a doc to inject botox in the trigger points. dont do it more than 4 or 5 times, than atrify will start. oh, and nothing is going to let you live pain free. in fact, if u can get ur pain down to a 5 or 6. ur doing good. the trick is to get the injections to loosen up the trigger points, get ur pain down, oh and the botox will cure u for a while,100%. but the pain will come back, just not as bad. a lot of docs dont agree, but i've been through it,still am. oh yeah, pot and valium is good to if u ever move to cali
    Anonymous 42789 Replies
    • February 25, 2010
    • 03:41 AM
    • 0
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  • Hi Vita,Can you give an update on your Klonopin reinstatement? I cold turkeyed on the drug several months ago and am wondering now whether I should go back on and taper off the drug?thanks so much,Adam
    Anonymous 42789 Replies Flag this Response
  • I won't waste time explaining my years of nerve pain and eventually doctors turning on me like an addict freak.I found an amazing answer to pain: Buprenorphine. I've been off all opiates, all benzos for 3 years now. Burprenorphine in the form suboxone blocks pain at the mu-opioid and kappa opioid receptors witout inducing addiction and physical high.In order to get prescribed suboxone or burprenex you must go to the suboxone mfg website and do the "find-a-doc" because it requires special licence to prescribe it.Its amazing - my pain levels have dropped by half witout any side effects and the best part is the drug does NOT I repeat does NOT lose it's potency over time. Because of it's special agonist-antagonist properties your body does not grow used to it.3 years later - i get the same relief I got day one.good luck. it changed my life.RandyIt's been almost two years since I started this thread, so my circumstances are a bit different now.When I made the first post in September of 2007, I was seeking a way to avoid reinstating Klonopin because I knew that, while it would give me immediate relief, there'd be a price to pay down the road. However, by the end of November 2007, the pain and depression had become too much for me and I DID reinstate the Klonopin.Almost overnight things improved for me. I enjoyed the holidays that year, I moved to a new residence, I got a part-time job, I went on vacations and I moved again. Then, in June of this year, I became tolerant to my Klonopin dosage, just as I knew I would. I had hoped it would take longer to happen.So now I STILL don't have an answer to my problem and, even after I find one (a seemingly impossible task), I face another terrible taper off the Klonopoison.In Mena's response from earlier this year, she says, "If pain persists there is usually another underlying source that is causing the muscle to stay in spasm. This may include torn ligament, nerve irritation, arthritis, disk disease, hormonal imbalance, stress or mechanical problems. Your doctor must first diagnose the underlying condition, and then treat it along with the muscle component."Lack of diagnosis has been my challenge going all the way back to 1994. I've lost count of the number of doctors I've seen, the tests and procedures I've had done, and the medicines and therapies I've tried. And God only knows how much money I've spent (and lost as a result of not being able to work) chasing after my diagnosis.An honest doctor once said that the reason that people like me have trouble finding a doctor who'll take them on as a patient is because we're "high maintenance, low reward." Doctors go to medical school because they want to help people. A patient that they can't help is fundamentally unrewarding. In frustration, they decide that "we must not want to be well. That somehow we're doing this to ourselves. Perhaps we like the attention."I don't see how I'll ever arrive at a diagnosis when no one even wants me as a patient. I know I'm not the only one. A forum whose name is "WrongDiagnosis.com" is probably busting at the seams with people in similar circumstances.Some stories about how you found a good doctor might be very helpful for those of us who haven't yet.I may repost an edited version of this as a new thread since it likely won't receive much attention buried here.How do we find a doctor who's willing to work with us?
    Anonymous 42789 Replies
    • September 10, 2010
    • 02:12 AM
    • 0
    Flag this Response
  • Your experience with Klonopin really mirrors my own. I stated using it for sleep and then found it useful for chronic hip pain. A very small amount, .25 X 4 per day but it really helped. I really could not walk for more than about 15 minutes continuously without it. However, as you noted, after a while, I could only get benefit by temporarily increasing the dosage, e.g. going on vacation or for a hike or bike ride. Yet, the side effects were still there, i.e. daytime drowsiness, impaired memory and slow thinking. Getting off Klonopin was ***l and took months of a gradual taper and then many more months after that to get off the residual effects such as restless legs.Like, you I have have been to every kind of doctor and alternative therapist (chiro, acupuncture, Rolfing, all kinds of massage), even had hip reconstruction. Nobody can see why I can't be much more functional. I have resorted to using Klonopin sparingly when I just can't stand it any more. It's not the severity of the pain, but the chronic nature of it and the limitations of not being able to enjoy a simple thing like a walk around the block.Anyway, I am currently trying a muscle relaxant called Baclofen, which supposedly takes a while to help. I also found a myofacial pain specialist that I will see next week, although I think I have tried this type of stuff before.This thread seemed to most closely match my experience so I was glad to see it. Is there somewhere else you can point me to as well?
    Anonymous 42789 Replies
    • January 11, 2011
    • 06:45 PM
    • 0
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