Anyone here dealing with peripheral neuropathy?

Posted by rabbit10 @rabbit10, Apr 9, 2016

Anyone here dealing with peripheral neuropathy?

Interested in more discussions like this? Go to the Neuropathy Support Group.

I think it’s possible to slow or stop the progression of neuropathy as was the case with John Bishop. Everyone’s body and immune system is different and just as with people who have gone into remission or totally recovered from things worse. I also think positive thoughts help. Just my 2 cents

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@rwinney

Thank you @fredjan2016 for sharing your observation of hydro. Its a confusing mess and for me, psychological warfare. I shouldn't put myself through it but, always trying to do what's right. Drs and even Mayo preach to get off opiods and find holistic ways of helping. Well, in my opinion, holistic takes me just so far. Maybe it's time to explore new pain relief options as hydrocodone gives me 1-2 hours of take the edge off relief and I fight through til the next dose is allowed. Idk...maybe this is normal for most meds.
Rachel

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Your doctor shouldn't like that your pain medication isn't lasting long enough. When I had that issue, I left a voicemail with my pain medicine doctor's nurse telling them that I was in a lot of pain before time for my the next dose and what I should do about it. They were very good and called me back that day. They didn't want me to be in pain and they increased my pain medication. (I've learned never to ask them for more pain medication. If you do they think you are a junkie.) I hope they take care of your pain soon.

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@terrydclaar

Thanks for the info fredjan2016. What types of foot PN pains does the methadone hydrochloride help with?

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I have idiopathic small fiber peripheral neuropathy in my feet. The methadone takes care of all the pain: burning, stabbing, pins and needles, shooting pain, extreme sensitivity. Sometimes it feels like someone has a nail and they are trying to run it through a spot on my foot. It is a different spot each time. Sometimes I just have to laugh when that happens cause nothing is touching my foot. The numbness is always in my feet but it doesn't bother me.

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@fredjan2016

Your doctor shouldn't like that your pain medication isn't lasting long enough. When I had that issue, I left a voicemail with my pain medicine doctor's nurse telling them that I was in a lot of pain before time for my the next dose and what I should do about it. They were very good and called me back that day. They didn't want me to be in pain and they increased my pain medication. (I've learned never to ask them for more pain medication. If you do they think you are a junkie.) I hope they take care of your pain soon.

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@fredjan2016 @rwinney

I made the mistake of voluntarily cutting back my dosage of ms contin from 30mg tid to 15mg tid, and now he's told me that (in his mind) I've become tolerant and raising the dosage wouldn't help, so he refuses to increase the dosage. He's also said that if I ever start using any cannabis products he would stop prescribing any pain medication. I understand that he has to follow the guidelines set up by his clinic, but that seems to be irresponsible medical care by denying me access to the medications that actually treat my pain, that are meds he has been prescribing for more than 5 years. Until a few months ago it had been the only medication that did anything for my pain. Adding imipramine in November has given me some pain relief without unacceptable side effects, but I know that the ms contin is doing its part. I've been trying to take it only once a day, in the morning, but it's not enough, so I had to start taking one at bedtime as well. I keep up with getting the prescription filled every month so I have enough ahead to last me for 3 months if my pcp refuses to continue prescribing it. As if dealing with the pain isn't enough. I just hope the irrational panic of opioids goes away so we who take it responsibly for chronic pain won't be treated like druggies.

But that's one of my soapboxes and I'm now climbing off it.

Jim

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@jimhd

@fredjan2016 @rwinney

I made the mistake of voluntarily cutting back my dosage of ms contin from 30mg tid to 15mg tid, and now he's told me that (in his mind) I've become tolerant and raising the dosage wouldn't help, so he refuses to increase the dosage. He's also said that if I ever start using any cannabis products he would stop prescribing any pain medication. I understand that he has to follow the guidelines set up by his clinic, but that seems to be irresponsible medical care by denying me access to the medications that actually treat my pain, that are meds he has been prescribing for more than 5 years. Until a few months ago it had been the only medication that did anything for my pain. Adding imipramine in November has given me some pain relief without unacceptable side effects, but I know that the ms contin is doing its part. I've been trying to take it only once a day, in the morning, but it's not enough, so I had to start taking one at bedtime as well. I keep up with getting the prescription filled every month so I have enough ahead to last me for 3 months if my pcp refuses to continue prescribing it. As if dealing with the pain isn't enough. I just hope the irrational panic of opioids goes away so we who take it responsibly for chronic pain won't be treated like druggies.

But that's one of my soapboxes and I'm now climbing off it.

Jim

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I have never told any of my doctors that I take medical marijuana. I know that they don’t understand it because they have never bothered to study it.

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@darlingtondoll

I have never told any of my doctors that I take medical marijuana. I know that they don’t understand it because they have never bothered to study it.

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@darlingtondoll

My pain specialist who is with a different group than my PCP, is supportive of cannabis use, but, again, his group doesn't permit him to prescribe it.

Jim

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@fredjan2016

Your doctor shouldn't like that your pain medication isn't lasting long enough. When I had that issue, I left a voicemail with my pain medicine doctor's nurse telling them that I was in a lot of pain before time for my the next dose and what I should do about it. They were very good and called me back that day. They didn't want me to be in pain and they increased my pain medication. (I've learned never to ask them for more pain medication. If you do they think you are a junkie.) I hope they take care of your pain soon.

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I agree with you there. On 3 occasions over the past year I've approached my Dr on hydro not working well enough for me. I'm by no means a junkie and he knows that about me personally. I elected for lidocaine infusions in hopes for additional relief but, no. His one response was to consider medical marijuana which I tried for months and don't care for on a daily basis. The next was an option to switch to methadone which I didnt feel comfortable with. The last and most recent was to try Nortriptyline which I tried for one week and hated it. This suggestion came on the heals off me letting him know I thought it was almost cruel that I suffer this way. I have finally asked, after 1 year of trying other
things, to be bumped to 7.5 hydro but, he avoids an increase like the plague. I understand his reasons as opiods are taboo so, I took matters into my own hands and decided Mayo's Pain Rehab program may help/teach me how to live with my pain or reveal just how screwed up my body is. I'm presently in the process of getting accepted and feeling a bit disappointed that coronavirus may impact me getting there anytime soon. Discouraged with increasing pain no matter what I do so, back to square one. Thanks for hearing me out and the advice. I do make mental notes to self of all the meds others have success with and maybe its time I come right out and suggest other options. Ughh.
Rachel

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@rwinney

I agree with you there. On 3 occasions over the past year I've approached my Dr on hydro not working well enough for me. I'm by no means a junkie and he knows that about me personally. I elected for lidocaine infusions in hopes for additional relief but, no. His one response was to consider medical marijuana which I tried for months and don't care for on a daily basis. The next was an option to switch to methadone which I didnt feel comfortable with. The last and most recent was to try Nortriptyline which I tried for one week and hated it. This suggestion came on the heals off me letting him know I thought it was almost cruel that I suffer this way. I have finally asked, after 1 year of trying other
things, to be bumped to 7.5 hydro but, he avoids an increase like the plague. I understand his reasons as opiods are taboo so, I took matters into my own hands and decided Mayo's Pain Rehab program may help/teach me how to live with my pain or reveal just how screwed up my body is. I'm presently in the process of getting accepted and feeling a bit disappointed that coronavirus may impact me getting there anytime soon. Discouraged with increasing pain no matter what I do so, back to square one. Thanks for hearing me out and the advice. I do make mental notes to self of all the meds others have success with and maybe its time I come right out and suggest other options. Ughh.
Rachel

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Rachel @rwinney that is definitely a bummer. I think my annual check up will be postponed also as I just saw this news from Mayo.

https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-deferring-elective-care/
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@johnbishop I've been working on getting a referral for a late-April or early-May appointment with Mayo's Pain Medicine department. I hope things are up and running normally by then.

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@steeldove

@johnbishop I've been working on getting a referral for a late-April or early-May appointment with Mayo's Pain Medicine department. I hope things are up and running normally by then.

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You know when they will be taking new patiences? Really glad to hear the Pain Department may become a real possibility. John

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