Mayo Clinic Connect
Anyone here dealing with peripheral neuropathy?
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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 Oh Peggy…I hear you and love the conversation with your nerves. I think we've all had it. Doesn't seem quite right, does it, that our body's nervous system can have it's way with us. It infuriates me sometimes! Days I yearn for distraction so my mind can catch a break from the pain that always exists. Im hoping this evening finds you distracted. Be well.
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I'm trying something new: taking Aleve tonight, because it lasts 12 hours, it might mitigate the pain I wake up with every morning. I've been taking 2 aspirins and stretching while waiting for the aching (like fibromyalgia) to subside. Peggy
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@waltermc here is a Sharing Mayo Clinic story on the treatment
Breaking Away From Pain With the Help of ‘The Scrambler’
Just catching up with all the recent posts. I read this lady's story @johnbishop linked to his post about her success with the Calmare scrambler system. Since I became aware of it a few years ago through online research I have read a number of stories about this machine. Many people or maybe even most/all have gotten significant relief from it according to their testimonials. My wife and I have thought about having her look into it in Hartford where they have one, since we have family near there. The cost has always stopped us, something like $5000 or so if I remember right. That probably would not stop us but then we read that a followup treatment would likely be required after 2-3 months and who can afford the money for that along with the extra travel, etc.? Maybe if someone offers this near Nashville we might be able to consider it someday. I would think for anyone that can afford it that is suffering with PN it would be of tremendous interest to pursue it, but I don't read very many people discussing it so I can only assume hardly anyone can afford it. Too bad, it seems so promising!
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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
@helennicola Hello Helen. What a lovely message to wake up to. Thank you for such caring thoughts. I hope you have a pleasant day today. 🌹🌷🌺
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Rachel, you are very welcome and thanks for the lovely bouquet, it’s not every day I get flowers!
@jesfactsmon Hi Hank, Wanted to tell you that I had Scrambler Therapy, here in Illinois. I had 2, 10 time sessions. The first group of 10 gave me significant pain relief for about 3 weeks. Then the pain came back. I then had 10 more sessions, and it did nothing to help. I asked for a reduction in the cost, before I started the second group of 10 treatments, and the cost was cut in half. The man who did my treatments is well known in Scrambler therapy, and people travel to him sometimes, when it has not been successful elsewhere. I met people there, primarily with CRPS, who swore by the treatments. One teenage CRPS patient had significant relief in one foot, but not in the other. Another said she could not walk without it. I have serious peripheral neuropathy in my feet, and I can be in agony sometimes. I wish it had worked consistently for me, but it did not. If you want your wife to try it, you might negotiate a price. Anyway, hope this helps. Sincerely, Lori Renee
@pfbacon I think you could talk to your nerves till you are blue in the face, and nothing would change. I tell myself I am ok all the time, and tell my nerves to stop screaming! I tell myself I am ok, I picture myself at the beach, my favorite place, and still, the stabbing, burning, throbbing….God, do I hear you, Peggy. Horrible stuff to handle…. Lori Renee
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@pfbacon I hear you about our pain. Im like you have fibromyalgia and 2 back fractures that cause neuropathy in my thighs . What I have to do is take Aleve and Tramadol together to get relieve . Its sad that the feds wont let us have our pain meds that worked for us in the past We aren't junkies.
It's stories like yours that give me pause Lori. If you are going to go to that much trouble and expense you'd like to at least have some assurance it will be effective. Like you I have read of several people who have sworn by this, but even with that they still need follow up within a couple months or less which would not be terrible if the machine were located near where you live. Unfortunately there is not one near us as far as I know right now. Well for now we'll just keep this in our hip pocket to maybe consider again someday. My condolences to you on your poor experience and lost money invested. It must have been devastating to have 3 weeks of relief and then have to go back to pain city again. One thing, if it's true pain builds character then this forum must be filled with them. 😉
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@lioness You mention neuropathy in your thighs. Read this and see if it rings any bells: Meralgia paresthetica is a condition characterized by tingling, numbness and burning pain in your outer thigh. The cause of meralgia paresthetica is compression of the nerve that supplies sensation to the skin surface of your thigh.Jan 16, 2020
@jesfactsmon Hi again, Hank, I do not regret trying it, at all. The man who does it in Illinois, (there is only one place in all of Illinois who does it!) is a true gem, and has helped so many people. He does say, there are people who he cannot treat. Their nerves are so far gone, that they don't even feel the electrodes. I do not know if you are a bit of a rebel, or pioneer, but one thing that does help is Kratom. Do not know if your wife has used this plant, but it definitely helps neuropathic pain. I use it 2 or 3 times a week. If you want to know more, let me know….Lori R.
@steeldove Thanks for this information and I do think this is the name for it . My Dr. after having Mri,s done is sending me to a neurologist end of month unless its cancelled by the covid-19 going on now .
Yes Lori I did get kratom for my wife about a year ago. She tried it but did not like it for some reason, something about it making her feel weird or something. She still has most of what I got for her. Well I am glad you feel the Calmare treatment was something you do not regret trying. If we come into a large sum of money someday such that it is not an object to this therapy we will likely try it as some people (like the story by the woman in John Bishop's link) do get a good benefit. I'd like to meet this man in Illinois someday. Where does he practice? (I grew up near Chicago actually).
@jesfactsmon Hi again, Hank…..I did Calmare therapy at a suburb close to Deerfield, Illinois, in a lovely north suburban neighborhood. I cannot, for the life of me, think of the name of the suburb. The man who owns the clinic who also does the treatment, is Norm Black. He practices out of Spero Pain Clinic. Norm is on face book, and his clinic is also. I know that people stay at nearby hotels from all over the place, to get his Scrambler therapy. He is very devoted and truthful. I still talk to him occasionally. If you look up Spero Clinic, you will find him. Had I got even 3 weeks relief the second time, I would have done it again. Another thing, for what it is worth, I discovered Kratom in pill form, rather than chugging the vile, disgusting, leaf powder. Now I taste nothing. Tell your wife she really has to experiment with dosages and sellers of Kratom. The stuff works well, without the high of marijuana. I buy the Kratom pills at ethanaturals.com You might want to buy the smallest bag of pills that say they are for pain or discomfort, and try them. I actually take 8 of the little pills, which is equivalent to 2 and a half grams of Kratom. Within about 10 minutes, the pain is gone for a few hours. Just don't take it daily, cause it is addictive. I think your wife should try these. Nothing to lose, and if you buy the little bag, it costs next to nothing. Best of luck to you and your wife. Neuropathy is intensely painful. Horrid. Go check out the Spero clinic, and Norm Black. One devoted man. And, there is a giant bird cage when you first come into the clinic, with the most darling little chickadees inside. I loved to go there, just to see the birdies!!! Take care, Lori Renee
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