Is there really any meds that can help?

Good evening or morning, which.in my case is 437 am because my husband runs out of pain meds and is now "jumping out of his skin"...all I can do is stay awake with him....He still.works...such a strong man, he wearsbraces, but is in pain now more than ever...the CMT IS progressing...his doctor has him.running through hoops in order to receive pain meds(purcocets 10's, )...I just don't understand why they won't give him anything stronger or figure out SOMETHING anything...he seems so close to.wheelchair sometimes...he told me tonight"I wonder if its less pain if I cut my legs off?"...wth?...
I'm at a loss..

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I know what your husband is going thru, and I feel bad. My neurologist retired last month and had to find someone I went to pain clinic for spine because I had bad back pain also and was recommended to him. He wants to give me a shot in back for pain and wants me to go pt to get muscles stronger He gave me one month supply of meds and said I might not need them. He does not know what cmt people go thru. In fact he was so surprised to see someone with cmt he called the other dr in to watch me walk. I have to get more meds now and hope I don't have a hard time. Good luck

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I has a back MRI and my neurologist said much of my leg pain and walking difficulty was from thr back. PT for that is helping a little but I've only had a few sessions.

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I went to the CMT clinic at Johns Hopkins then needed to see another neurologist for my "word finding problems". I am really lucky to have found a very progressive neurologist. She asked about pain first, gave me Gralise to try at night, then Savella morning and night. I am medication sensitive (dizzy & nausea) so I limit my dosage. It helps as long as I respect my limitations. I also get IVIG infusions 5 days every month. After the first month I got weaker, month 2 I regained strength in my left thumb and right ring/little finger and more stamina in my legs. The good progress last about 2 weeks; but I don't slide back completely. month 3 I felt great after infusion for the week after. My doc at Hopkins encouraged my not to pursue IVIG because of risk factors, ie stroke. This is a therapy - not a cure. I give up a week for infusion to gain 2 weeks of a better quality of life at age 49.

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Has your husband tried Lyrica? I've had good luck with it, especially for the pain at night. Is his doctor a neurologist familiar with CMT? it's bad enough to be sleep deprived without being hassled about getting the right pain meds.

Bonnie D - I, too have word finding problems. Any info about it?

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I had a loads of blood work then a lumbar puncture and brain MRI; results showed 2 deep white matter lesions. I have CMT 1A, strong genetic history. My cousin who is 6 years older than me also has word finding problems, he has not had a brain MRI though.

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Hi. Did your husband try gabapintin(sp). That works for my leg pain from being a diabetic.Nurontin(sp) is the brand name. My muscles are tight and very sore w/o the medication.I lucky i found a young dr who believes in treating pain. 37 yrs. old. I hope you find something for him. Best of luck to you both. Bobb

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There meds and he needs to find a doc a neurologist who knows CMT. It can be trial and error which ones work for him. Also supplements are important. I tried Neurontin but it had bad side effects for me. I do take Nortryptiline and it really helps. I also take percocet occasionally. Has he tried aleeve or ibuprofen? I used those for years but can't take it on my stomach anymore. Percocet alone will never be enough and can cause dependancy issues like the jumping out his skin you mentioned. Good luck
Lisamarie

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Also stretching is so important and swimming is the best exercise. We have a fb page look up cmtus and join us!

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My neurologist prescribed Lidoderm patches, they are typically for shingles pain, but work for other nerve pain as well. Is his pain muscular or nerve pain or what? Gabapentin/Neurontin works well for nerve pain too, but it makes me very tired during the day. I still take it at night, just to help me sleep. The patches seem to be working well for the burning pain I feel. I use Dilaudid for back pain. It is VERY hard to find a doctor to prescribe narcotic type pain meds, but I think if they improve someone's quality of life then so be it. I hope your husband finds some type of relief.

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Wow!!! Thank you all!!...its so comforting to know we are not alone...my husband hadn't been seen by the new neurologist yet but at least now I know what to ask for...honestly my husband didn't know why his primary was even sending him to neurologist...today a had docs appt and I asked why...she said "well I don't know how to.treat CMT" , his pain is where he has no muscle his lower legs and now fore arms, pain meds are his only sign of relief or to even have a "normal" day..:(...He's 54 and is so frustrated with the awareness that isn't here.STILL, he comes from 13 children 6 of them.have it, aSophill different degrees, his he didn't even know what degree he is in...More research on our behalf I can see is a must...again THANK YOU ALL...I hope all of you get the help you all need.:)
Sophia...

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In addition to my neurologist, Cymbalta, Neurontin (Gabapentin), physical therapy, I've also been to a pain clinic -- the doctors there were trained in pain control, whether it be finding the source of the pain and correcting it or treating pain separately, as a symptom.

Good luck.

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Hi :) I go to Physical medicine and Rehabilitation clinic and Dr. has me on 100 mg when i get up, 100mg at noon, and then 1500 mgs at night plus I'm on Celexa, sinemet, and suppose to be on Meloxicam but it killed my stomach so I took myself off it (shhhh dont tell dr. lol) but instead I take Ibuprofen during the day. I'm thinkin about trying the meloxicam again for all this arthritis pain..cmt is heck on your joints! I hope your husband gets some relief soon.. it's terrible to go without sleep. Even with all these meds. I'm still awake each night until around 2am or 3am :(

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My husband has tried 3 different meds for the nerve damage but unfortunately nope they did not work. He has appt with pain clinic abed it seems that pain meds n diazepam are the combination for him...but we are going to ask for what other meds.he would be able to try. He's been.getting his rest lately and started working out again he goes boxing club at least 3 times week but noticed his artistwrists are much worse...so physical therapy will help right? I just wish there was more arrangeawareness about CMT ...NONE of the doctors so far seem to want to do any.research..so when tasks to then.about it to me it just falls on deaf ears so to speak...ugh...but can't give up not when their are so many out there giving their support, Thank you you all!!

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oops!! LOL I just noticed that I forgot to write that dr has me on gabapentin... I described the dose but not the medication LOL. I sure hope the doctors will listen to you and also will have knowledge of cmt.. a lot of drs just look at me like "you and your kids have WHAT?" lol And I'm terrible at explaining things well !

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Oh @tryntobepositve....we.know the.feeling only.his.doctor.either acts like they know what it is and then start asking questions that really don't have anything.to do with it or they bring in other doctor "you got to.see this" we call it, but yea usually.they dint.know anything about.it or want.to hear what.we have has info.for them...we've bright in pamphlets to help but honestly.they just look the Luther way. So disgusting how they just.brush it under.carpet so to speak. But.were not giving up yet...they.have him.a list.of people.to.see and I got.him.all the appointments.he needs...but.financially its also.a struggle...I myself am on disability but really thinking of going.bk to work full time because I know he's.not going.to be able to much longer...Sundays he's great other days he.can't.get out of bed...

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Oh @tryntobepositve....we.know the.feeling only.his.doctor.either acts like they know what it is and then start asking questions that really don't have anything.to do with it or they bring in other doctor "you got to.see this" we call it, but yea usually.they dint.know anything about.it or want.to hear what.we have has info.for them...we've bright in pamphlets to help but honestly.they just look the other way. So disgusting how they just.brush it under.carpet so to speak. But.were not giving up yet...they.have him.a list.of people.to.see and I got.him.all the appointments.he needs...but.financially its also.a struggle...I myself am on disability but really thinking of going.bk to work full time because I know he's not going.to be able to much longer....I just hope he doesn't leave me even though I don't want him to hurt anymore....
Sigh

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If he is taking 10 percocet a day, he is definitely on the wrong path. Take it from me; I know. If he needs narcotics, speak to his doctor about buprenorphin. I found it really works for me without the side-effects.

It sounds like he is suffering from neuropathic pain, in which case, a pile of percocet may not be a good choice at all.

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For 2.5 mg Percocet or 5 mg Percocet, the maximum daily dose is up to 12 tablets. Only 6-8 tabs/day depending on the mg. SO, for 10mg tablets, the maximum daily dose is 6 tablets/day.

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Also keep in mind that pain medication, even spinal injections, are NOT a "cure" for the pain, only a "band-aid".

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Thank you ....we will see...again the doctors here....ugh....but he goes to neurologist this month...so hopefully we can get some answers from him...thank you all again.
Moses n Sophia Giron

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