anyone feel more burning/numbness when sitting

Posted by notborntoburn @notborntoburn, Jul 27, 2020

Hi I am getting beyond frustrated! Laying down puts my pain at 110% ,sitting in a chair puts the numbness and burning way over my threshold of pain. I can hardly sit at a table to write,eat,carry on a conversation,within minutes I question if my feet and calves actually look as painful as they feel! They look fine yet oh the nerves just go nuts firing in all directions with a bed of hot coals. I have been on every medication to to man,even some unknown! Thanks for your knowledge Marianne

@notastall78

I’m looking for relief from the burning tingling feelings of sensory neuropathy. Does the electrical stimulation seem to help – has anyone had good results – this has been the most uncomfortable feeling. There is also something called calmere pain scrambler therapy. Has anyone tried that? Any info on this would be great.

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@notastall78 @jesfactsmon @wisfloj Just to confirm, I did have Calmare (Scrambler) therapy at 2 separate times, of 10 treatments each. Each session, if I remember, was about 45 minutes long. The first group of 10 sessions lessoned my pain considerably, and in that time, I was able to stop taking Gabapentin. However, the effects only lasted for about 3 weeks, tops. Then I got another group of 10 treatments, and it did absolutely nothing. I do know that everyone is different, and some do get tremendous relief from this treatment. However, I do think many have to get the treatments repeated over time. It was so disappointing for me to get such good relief, but only for a short time. Lori Renee

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@johnbishop

@avmcbellar I had the same problem last week. My email address was being hard bounced back to the Mayo Clinic Connect's mail server. @colleenyoung our Director was able to get the problem fixed. If you have any problems receiving notifications in the future, please let us know by using the Contact Mayo Clinic Connect form. The link is at the bottom of the left footer column on every Connect page. Here's the actual link – https://connect.mayoclinic.org/contact-a-community-moderator/

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@johnbishop, Thanks John! I am surprised to hear you had the same problem. I will keep the contact info handy in case I do have issues in the future. Good to know. Thanks again.

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@lorirenee1

@notastall78 @jesfactsmon @wisfloj Just to confirm, I did have Calmare (Scrambler) therapy at 2 separate times, of 10 treatments each. Each session, if I remember, was about 45 minutes long. The first group of 10 sessions lessoned my pain considerably, and in that time, I was able to stop taking Gabapentin. However, the effects only lasted for about 3 weeks, tops. Then I got another group of 10 treatments, and it did absolutely nothing. I do know that everyone is different, and some do get tremendous relief from this treatment. However, I do think many have to get the treatments repeated over time. It was so disappointing for me to get such good relief, but only for a short time. Lori Renee

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@lorirenee1 Lori, I have to hand it to you, you get out there and try things! Calmere, DRG stimulator, a variety of pharmaceutical drugs, alternative drugs, practically every OTC product ever invented. My question for you is, did you ever try cayenne pepper? Also have you ever tried going to a chinese medicine practitioner or an acupuncture specialist? Just curious. Best m'dear, Hank

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@jesfactsmon

@lorirenee1 Lori, I have to hand it to you, you get out there and try things! Calmere, DRG stimulator, a variety of pharmaceutical drugs, alternative drugs, practically every OTC product ever invented. My question for you is, did you ever try cayenne pepper? Also have you ever tried going to a chinese medicine practitioner or an acupuncture specialist? Just curious. Best m'dear, Hank

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@jesfactsmon Hi Hank, Yes, I have tried just about everything under the sun. Very first thing I ever tried was acupuncture, and it did nothing. I tried a Capsacian (cayenne pepper) cream, and it did nothing. I even tried a homeopathic med, that really was only St. John' s Wort, and it did nothing. Now, I must research Chinese Medicine and Neuropathy. I have a new quest!!!! You never know when one may help. And of course, due to my willingness to try anything, I did discover that one alternative herbal tree that does help. I hope Linda is willing to try everything she can, as well. We have to try!!! Best to you as well, Love, Lori

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@jimhd

@brayimee My extended version of the scriptural reference is that God never gives us more than we can bear "with the power of the Holy Spirit who lives in your heart". It's when we try to do the hard things in our own strength, as Hank referenced, we get into trouble. So, do everything within your power to help yourself, and give God the chance to work with you.

Jim

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Amen! 🙏

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@lorirenee1

@jesfactsmon Hi Hank, Yes, I have tried just about everything under the sun. Very first thing I ever tried was acupuncture, and it did nothing. I tried a Capsacian (cayenne pepper) cream, and it did nothing. I even tried a homeopathic med, that really was only St. John' s Wort, and it did nothing. Now, I must research Chinese Medicine and Neuropathy. I have a new quest!!!! You never know when one may help. And of course, due to my willingness to try anything, I did discover that one alternative herbal tree that does help. I hope Linda is willing to try everything she can, as well. We have to try!!! Best to you as well, Love, Lori

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Hey Lori, I would be curious to know how chinese medicine might be able to help. Of course the first thing is to find a person who is both talented and skilled in the art. But I have heard that it can be very powerful. We went to a chinese herb store once in the eighties in Vancouver BC looking for an herb to help Linda's menstrual cramp, which she found (called Shu Ling or something).

I knew if anyone had tried cayenne, you would have for sure. How about the acupuncture, did it do anything at all for you? Was the person an experienced acupuncturist? Best, Hank

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@jesfactsmon

Hey Lori, I would be curious to know how chinese medicine might be able to help. Of course the first thing is to find a person who is both talented and skilled in the art. But I have heard that it can be very powerful. We went to a chinese herb store once in the eighties in Vancouver BC looking for an herb to help Linda's menstrual cramp, which she found (called Shu Ling or something).

I knew if anyone had tried cayenne, you would have for sure. How about the acupuncture, did it do anything at all for you? Was the person an experienced acupuncturist? Best, Hank

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@jesfactsmon @lorirenee1 I've tried capsaicin as well. It didn't help me, either. The pain specialist told me about an application of it that's done in the office, a larger dosage than an OTC tube. I think the doctor doubted that it would work for me.

Jim

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@jimhd

@jesfactsmon @lorirenee1 I've tried capsaicin as well. It didn't help me, either. The pain specialist told me about an application of it that's done in the office, a larger dosage than an OTC tube. I think the doctor doubted that it would work for me.

Jim

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Hi @jimhd Jim, I have heard cayenne (capsaicin) mentioned a few times over the years. The idea as I understood it was that it would cause such an intense burning, like your feet are on fire, that it would "wear out the nerves" so they would calm down for a period of time, purportedly long enough to make it worthwhile to do. But I never heard about someone actually doing it successfully. And I do believe this referred to it being done in a medical setting, not OTC. Would still be interesting to hear from someone who had it done that way, i.e. by a doctor. Best, Hank

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@rwinney

@brayimee Ok. It ain't easy, I know that. I feel your despair. You can feel defeated, but you can not be defeated! Pick up the phone and call Mayo Clinic. Get the ball rolling, watch their videos on pain by Dr. Sletten. I can tell you from my experience, you need appropriate out of network insurance to get coverage at Mayo. I was denied once but, I was already diagnosed, you aren't. A Dr. or multiple Dr. referrals are best for your acceptance. You can also self refer and apply online today. Mayo was wonderful at calling back promptly. I was eventually accepted to their pain rehab program and in order to not pay 50K out of pocket, switched my insurance the first of the year to be covered. This all takes time. Begin soon if you are serious.
My best wishes and encouragement,
Rachel

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Hi Rachel, do you have any idea at all about how I would apply to be seen at Mayo since I have so many specialists now and they all say that I am a complicated patient? I wouldn't know where to begin! I think neuro and rheum may be the most important?? I have thought about it so often over the years and family members have tried to encourage me to go over the years but I don't know what they would do with me either! I would appreciate your thoughts on this very much. Take care, Sunny. 😊

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@sunnyflower

Hi Rachel, do you have any idea at all about how I would apply to be seen at Mayo since I have so many specialists now and they all say that I am a complicated patient? I wouldn't know where to begin! I think neuro and rheum may be the most important?? I have thought about it so often over the years and family members have tried to encourage me to go over the years but I don't know what they would do with me either! I would appreciate your thoughts on this very much. Take care, Sunny. 😊

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Hi @sunnyflower, Have you thought about asking one of your specialists/doctors for a referral to Mayo Clinic? You can also call and self refer for an appointment. If you would like to seek help from Mayo Clinic, contact one of the appointment offices. The contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63.

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@sunnyflower

Hi Rachel, do you have any idea at all about how I would apply to be seen at Mayo since I have so many specialists now and they all say that I am a complicated patient? I wouldn't know where to begin! I think neuro and rheum may be the most important?? I have thought about it so often over the years and family members have tried to encourage me to go over the years but I don't know what they would do with me either! I would appreciate your thoughts on this very much. Take care, Sunny. 😊

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Hello @sunnyflower. John has provided the starting point and info for you. I recommend having your most hands on , knowledgable Drs who are very involved in your health be the ones to refer you. My experience being referred by my Drs. was that I had been diagnosed already with things Mayo felt I could be treated for by my local Drs. Possibly I was no great mystery and apparently they felt they could not help. Or were too busy to take me on. Perhaps your multiple diagnosis and unique diseases will draw attention for treatment. You've got nothing to lose! Go for it!!
Many well wishes to you,
Rachel

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@rwinney

Hello @sunnyflower. John has provided the starting point and info for you. I recommend having your most hands on , knowledgable Drs who are very involved in your health be the ones to refer you. My experience being referred by my Drs. was that I had been diagnosed already with things Mayo felt I could be treated for by my local Drs. Possibly I was no great mystery and apparently they felt they could not help. Or were too busy to take me on. Perhaps your multiple diagnosis and unique diseases will draw attention for treatment. You've got nothing to lose! Go for it!!
Many well wishes to you,
Rachel

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PS: Check out your insurance first to be sure you can go out of network. Unless however you live near one of 3 Mayo Clinics

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