Anyone here dealing with peripheral neuropathy?
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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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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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@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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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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@jimhd I take a stand with you on your soapbox Jim!
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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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@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/#5b3b99cc22c5
@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.
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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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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@jimhd
@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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