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texasgal48 posted:
A while back my doctors decided they should take me off my pain pills because "studies had shown" that fibro responds better to Cymbalta and Lyrica. I have been on these two drugs for a while now and still have terrible pain and somethin I call "electrical shocks" that shoot through different parts of my body (particularly my head and basck) and cause very extreme pain.

I've done what they asked and it isn't working. WHERE DO GO FROM HERE?!?!???
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newgrandma1953 responded:
I also am on Cymbalta and tried Lyrica which did nothing for me. I am seen by a pain specialist due to the terrible pain I suffer with after trying acupuncture, physical therapy, pool therapy, message therapy, spinal injections, Iv therapy with no results. I continue to live with pain between a level 6-9 all the time everywhere mainly in my back and lower extremities. My only relief is obtained from pain medication. I recommend going to a pain specialist.! I also have pain everywhere else except the top of my face thus far. Please see another specialist your the one living with the pain. God bless you.
 
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fibroinsd responded:
Hi texas gal...sorry you are going through so much...I don't know a lot about the electrical shocks..except that they are usually due to nerve damage..not necessarily fm...I was on Cymbalta for awhile and it was a great help..others have had a very hard time with it..and had to get off it immediately..

I hope you can find some good advice ...might take some real work on getting your nerves cleared out...

cece
Let's put the fun back in dysfunctional !- Mary Englebright
 
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saillady responded:
I am so sorry you are having this pain. I would start with a neurologist. This may be something more than FM.
I will pray for you Texas gal.
 
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missist replied to saillady's response:
Hi... I am not a scientist but looking over data from cymbalta study-- it seems to say that about half of fibromyalgia patients found some relief from it. there is no data that says anyone was totally pain free. They are talking about 30 to 50% reduction in pain after about 12 weeks.

As for Lyrica--I use gabapentin--which is a lot cheaper and does take a notch out of my pain but certainly does not make me pain free.

I sometimes get the feeling that doctors listen to drug sales people more than they do to patients.

If you are not getting any benefit from these things you need to tell your doctor that -- possibly several times. If they don't listen after a reasonable attempt to tell them-- then yes--move on.

Mary
 
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missist responded:
Here is an interesting article about the drugs that are now advertisted for fibro.

http://www.cfah.org/hbns/2013/drugs-to-treat-fibromyalgia-just-as-likely-to-harm-as-help-

you might want to print it out and talk to your docs.


The electric shock sensation you are describing--that's not fibro--as others have said. You should tell your dr that it needs to be addressed.
I had a hard time getting my old dr to take some symptoms seriously too--he had chalked up some symptoms to anxiety that were actually epilepsy. So-- you knw--sometimes you have to insist.

As for treating the symptoms that are fibro-- that is really ultimately up to you-- get suggestions, try things, find out what your vitamin D level is-- that helps some. find out what kind of exercise you can handle, learn to pace yourself, experiment.

Mary
 
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katmandulou responded:
Hi texasgal48,

I'd go right back to the doc and say, "These aren't working. I want to go back to the (drug) I was taking successfully." If your doc tries to convince you otherwise, find another doc. Everyone here has their fave; mine is a rheumatologist with a wonderful PA, and they're both great!

The shooting pain is not part of FM. Have you been checked for muscle spasms, nerve damage (like sciatica), or anything else? My doc regularly takes X-rays, and for other pains I've had CT scans and MRIs.

I had a terrible 'spasm' last fall, so I made an appt to have a trigger-point injection. My doc looked at my back and sad, "that's not a trigger point - it's shingles!" He gave me lidocaine patches for the pain, and it took a month to clear up.

I hope this helps!
Lou
 
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Anon_10089 responded:
Hunt up those studies. Most studies say that those meds help only a percentage of patients. So if even 30% of people do not get help by those drugs (and that's low, it's more like 50-70., that means that 30% out of a few million people do not receive benefit. That's a lot of people!!

Those meds fall very short. I know they help many people. But the commercials and drug companies want us to believe they are more of a "cure" than they really are. So while they may help, most doctors versed in FM will agree that any med is just a small portion of our treatment.

Like the others have said, go back and tell them you gave these meds a try. I think in many states, doctors are only supposed to prescribe opiates once other therapies have failed. Well, you tried other therapies and they failed. You know something out there does work. As long as you take it as directed and know the risks, you should be allowed to have it. We all deserve quality of life!
 
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bette_kaffitz responded:
From here, you go back to your doctor and try the next thing. And the next. And the next. Until you find something that helps you. Sorry, but that's the way it is.
Back in 1990 when fibromyalgia first got its name a study came out saying how the combination of Elavil and Flexeril was a new, wonderful treatment for all of our woes.

That's what the abstract for the study said, at least. But when you went into the body of the study, you found that 16 % of the patients found at least some relief! 16 %!!!!! Some marvelous scientific breakthrough. And, oh yes, that 16 % got SOME relief.

That's the way it's been all along. And that's why all these big pharmaceutical corporations are still looking for something that does work. Sooner or later, there will be something that works for EVERYONE BUT 16 %. And there will be a lot more than SOME relief.

Until that day, we just have to try each version of what is available. We have to give it a fair trial. We have to let our doctor(s) know what did or did not work. And, unfortunately, we have to be patient.

Personally, I'm running out of patience. But then, I've been dealing with fibro since 1972. I think it's time.

Bette
 
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diiidiii responded:
I'm going through the same problem. No one really understand how painful fibro is. Now I'm on Cymbalta, Gabapentin and Cyclobenzaprine. Not working for me at all!! And I don't understand why would the doc replace one medication that relieves you of pain, and help you go on with your life by three that don't do anything at all!! Even now my arm and fingers hurt just trying to type... It's really frustrating!!!!
 
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missist replied to diiidiii's response:
Hi... I don't know what particular med you were on. I think I know that there are drugs that if used long term-- they are not good for you. I had to reconsider one lately cuz it is dangerous for me if I take it too many years. It was much better for pain control than what I take now, but in the long run what I take now hopefully won't harm me and will work for a longer time. Also it is not addictive. (I haven't taken addictive things though so far)

In time things change..When you get to be in your 60s or so-- narcotics are more commonly less dangerous than nsaids for instance-- but you only need small doses.

My mom and her sisters used morphine for arthritis as elderly women but did not take ibuprofen or things like that.

You need to ask your doctor and listen, hear them out--- and then also if what they give you doesn't work-- tell them and expect them to hear you out too.

Some of us try all kinds of things before we find good solutions--and then sadly-- sometimes our good solution won't work as well after a while and we have to try again.

Its a really difficult balance.

Be sure to advocate for yourself but let your dr have his/her say too--- you can then weigh what they say and decide if it makes sense or not.

Mary
 
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missist replied to missist's response:
Also--I'm on cymbalta & gabapentin too... so I do understand. Its not perfect for sure--although I'm ok if I pace myself and if I am sure to rest sore areas.
mary


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