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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.

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Rachel, Volunteer Mentor | @rwinney | Mar 17, 2020
In reply to @fredjan2016 "I have idiopathic small fiber peripheral neuropathy in my feet. The methadone takes care of all..." + (show)
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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 Hah! I know what you mean...I've experienced knife slicing, sharp stabs and gun shots to various parts of my body. In the beginning stages of these happenings, I was so dumb founded that nothing was physically there when I looked, that I would bust out laughing in amazement.

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johnjames | @johnjames | Mar 17, 2020

Does it really help with the pain of Parkinson's- I heard from a friend of my wife ( a RN) that Zilis CBD oil 500mg) does stop most of her pain????? never have tried it-john

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Rachel, Volunteer Mentor | @rwinney | Mar 17, 2020
In reply to @johnbishop "Rachel @rwinney that is definitely a bummer. I think my annual check up will be postponed..." + (show)
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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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Hey John @johnbishop- thank you for the update. Common sense tells me I must wait and I understand completely. I hate to even bother my nurse about our follow up
Maybe I will email her verses calling. Bummer as well about your annual.

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Rachel, Volunteer Mentor | @rwinney | Mar 17, 2020
In reply to @jimhd "@fredjan2016 @rwinney I made the mistake of voluntarily cutting back my dosage of ms contin from..." + (show)
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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 I take a stand with you on your soapbox Jim!

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Rachel, Volunteer Mentor | @rwinney | Mar 17, 2020
In reply to @darlingtondoll "I have never told any of my doctors that I take medical marijuana. I know that..." + (show)
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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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True statement in some cases.

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helennicola | @helennicola | Mar 17, 2020
In reply to @rwinney "I agree with you there. On 3 occasions over the past year I've approached my Dr..." + (show)
Profile picture for Rachel, Volunteer Mentor @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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winney, laura, jim, steeldove, etc. My heart goes out to all of you when I read your posts, especially during these trying times.I have only had SFN for 2 yrs. and have manageable pain so far. I do have constant anxiety about my future but want you to know that you are all in my prayers. I can’t imagine what it must be like for you all trying to cope in a daily basis. I just hope you are often surrounded by supportive loving family and friends. Helen

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John, Volunteer Mentor | @johnbishop | Mar 17, 2020
In reply to @johnjames "Does it really help with the pain of Parkinson's- I heard from a friend of my..." + (show)
Profile picture for johnjames @johnjames

Does it really help with the pain of Parkinson's- I heard from a friend of my wife ( a RN) that Zilis CBD oil 500mg) does stop most of her pain????? never have tried it-john

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@johnjames -- @artscaping may have some CBD suggestions for you. I've never tried it because I don't think it helps when you only have numbness. Here's some information I found on Forbes website that gives a pretty good overview:

It’s National CBD Day: Have You Tried These Products? (August 8, 2019)
-- https://www.forbes.com/sites/jeannecroteau/2019/08/08/its-national-cbd-day-have-you-tried-these-products/

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John, Volunteer Mentor | @johnbishop | Mar 17, 2020
In reply to @steeldove "@johnbishop I've been working on getting a referral for a late-April or early-May appointment with Mayo's..." + (show)
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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 I usually have my annual exam in April and I have a blood test scheduled for March 27th so I'm assuming it will be rescheduled for sometime after April (if I'm lucky).

@johnjames -- I think the only way to know is to give them a call. You can find the contact information for the Minnesota, Arizona and Florida campuses here http://mayocl.in/1mtmR63.

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pfbacon | @pfbacon | Mar 17, 2020

rwinney and all - thanks for posting ! I have felt red hot fireworks plus flaming swords bursting up through my feet into my legs, swarms of wasps stinging me, and raging forest fires but when I look at my body, there are no wasps, no fire anywhere, no swords or fireworks - nothing. I asked my nervous system "Why don't you send out false messages of pleasure instead of pain? I'm sorry you're dying, but we could have a good time of it just as easily as a bad time." I got no answer. Peggy

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pfbacon | @pfbacon | Mar 17, 2020
In reply to @jimhd "@fredjan2016 @rwinney I made the mistake of voluntarily cutting back my dosage of ms contin from..." + (show)
Profile picture for Jim, Volunteer Mentor @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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Doctors take an oath "to heal the sick". Our pain doctors should do one thing: relieve our pain. I recently got a new pain doctor - he listens to what I say and tries his best to help me, even though he's young and doesn't have any pain issues. I have met doctors who think they are G-men in a B-movie and their job is to catch criminals/addicts. I was interrogated as though we were in a police drama on the telly. Three pharmacists did it too, and a clerk at the DMV. The clerks were threatened by the pharmacy board that their license would be taken away if they sold medicine to an addict. One of the doctors is clearly making as much money for her hospital as she can - even referred me for tests at the hospital's lab that are done for free in doctor's offices. The other doctor was very young, had recently graduated. Is that what they are teaching in medical schools now? Peggy

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