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

@brayimee

Sometimes I think it is best to ask about personal experiences. What works for some might not work for others or what works for someone might also work for you. I have my own care plan lined up and if it's a fail, I will be contacting Mayo. I personally feel doctors are leaving bits and pieces out or are not looking at all my tests these last 5 months. I have some theories about my issues, but my doctors don't want to hear them. They dismiss it when I bring it up, so how can I get help from them if they do not listen? What is happening to me is NOT normal and if they look back, they will see that I was never in the office asking for help until now. So frustrating.
I love myofascial release and I too use marijuana at times. It helps!

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@brayimee Atta girl! Go with your gut and keep pushing. You know your body best.

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@brayimee

Sometimes I think it is best to ask about personal experiences. What works for some might not work for others or what works for someone might also work for you. I have my own care plan lined up and if it's a fail, I will be contacting Mayo. I personally feel doctors are leaving bits and pieces out or are not looking at all my tests these last 5 months. I have some theories about my issues, but my doctors don't want to hear them. They dismiss it when I bring it up, so how can I get help from them if they do not listen? What is happening to me is NOT normal and if they look back, they will see that I was never in the office asking for help until now. So frustrating.
I love myofascial release and I too use marijuana at times. It helps!

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Hi @brayimee I'd like to add my 2 cents to reaffirm what has already been said by Rachel @rwinney and Chris @artscaping I have read at least a couple thousand posts on Mayo Connect since I found it in January of this year. Two conclusions that you are leaning toward are that 1) your doctors have been less than extremely helpful and 2) that you want the input of other people who are going through similar issues as yourself. With just the experience I have had on Connect so far I think your belief that many (not all) doctors are not that helpful is shared by a lot of other people. And I can tell you for a fact that most of the contributors to this forum have had a LOT of experience with their respective illnesses, and they have learned a lot about what works for them, doesn't work for them as well as many of the pitfalls of various ideas people have tried for their illnesses, whatever they may be, in this case neuropathy. Rachel, Chris, John, and a host of others will offer you great insights here if you just hang out. I am certain that you can profit greatly by reading the posts, discussing your issues and contributing your own knowledge and experience in order to help others as well. Best of luck! Hank

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Hello Hank,

My primary and Cardio have been my best doctors. However, things move slowly and I must be patient. It's tough when I went from lifting weights, running and just being overall active to resting 90% of my day. They seem to not think that us urgent ( weak legs, urinary&bowel issues). I have my theories, but I hate stepping on doctors toes. I might have to start another thread aside from my original post "internal vibrations & nerve firing", but I did a search and didn't see anything for hemangiomas.
I absolutely love connecting with all people who have similar symptoms or advice. It makes us feel less alone.

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@brayimee

Hello Hank,

My primary and Cardio have been my best doctors. However, things move slowly and I must be patient. It's tough when I went from lifting weights, running and just being overall active to resting 90% of my day. They seem to not think that us urgent ( weak legs, urinary&bowel issues). I have my theories, but I hate stepping on doctors toes. I might have to start another thread aside from my original post "internal vibrations & nerve firing", but I did a search and didn't see anything for hemangiomas.
I absolutely love connecting with all people who have similar symptoms or advice. It makes us feel less alone.

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Since my previous post I discovered that (unknown to me) you had had another whole conversation yesterday under a related discussion and I see my previous comments were unneeded. I also am now able to grasp the gravity of your situation. Just very weird. It sounds like you were totally normal and fine one day and woke up the next with this whole raft of strange unpleasant symptoms. Was it almost that sudden seeming? Your doctors seem to be unable to put this all together into any sort of comprehensive explanation and I guess they are perplexed as you are. Your symptoms affect your heart, your BP, your bowels and urination, your left side nerves, your legs, your spine, you have intense sweating (in conjunction with the nerve/vibration sensations?). Your discussion of the T14 and T1-4 vertabrae seems like a good place to be thinking about. With so much going on all at once involving so many different systems it seems like looking at places that have an affect on all of these things is where to be looking, someplace where they have an overlap. I think you are on a good track with your thinking and research. I am sure you have thought back to before this happened and examined every possible thing that happened in your life that might provide a lead as to where this all came from, correct? Did you come up with any ideas or possible incidents in your life or occurrences that seemed suspicious in relation to causing all of this weirdness? Like others have expressed, my heart is with you Aimee. I hope a breakthrough comes soon, either in assessing the cause itself or in finding a cure, either for some of these symptoms or, preferably ALL of them! Hank

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@artscaping

Good Afternoon @brayimee, I am so sorry that your chosen clinicians have appeared to be inattentive. The brain MRI is a necessity as well as the many skin, tissue, and blood tests. Before an Rx can be written there has to be verifying test information. My neurologist explained what might be called a process of elimination. Gabapentin was the first for me…..and I notice you are wondering if Gabapentin would help you and that it could be increased if necessary.

Yes, Gabapentin was my first Rx for dosages morning and evening. I could not handle the morning dose so just kept the nighttime dose and added in a anti-depressent….a godsend for sleep issues. However, it had very bad digestive side effects and was considered an older medication so I did a retreat that lasted 3 months. The medication substituted is duloxetine because my brain was way too fuzzy from anxiety and increased pain. Please notice that these changes were all made because the neurologist was on it….asking the right questions, and listening with attention.

My next change was the introduction of medical cannabis with the knowledge and support of the other clinicians on what I now call my team. I wanted to avoid opioids. That journey has had many turns and ups and downs. Remember that our bodies begin to tolerate medications more the longer we take them. So a 1/2 dropper of medical cannabis was no longer working and it was time to figure out what might work better……another dropper or a stronger dosage ratio. And then when you kind of fix that issue, along comes the neuropathic itch. I am currently going through numerous tests again to see how the itch might be controlled.

Unlike @rwinney, I did not have Connect contacts. I was on Connect but only for my life partner who has gone through some dicey prostate cancer issues. One day while waiting at Mayo for his next treatment, I found a card in the waiting area that mentioned Mayo Connect. I gingerly tapped the keys and was off and running.

So how did things change? I learned about topicals and found that cannabis topicals are much better than the compounded ones from specialty pharmacies. I found out I really didn't need four 300 mg gabapentin and dropped one to be replaced by a full dropper of an appropriate medical cannabis.

So, there is no perfect menu A, B, C, or D that will be helpful. Each person is unique. Your presenting issues are different than anyone elses, at least until today. The more you interact with Connect, the more trails you will find that might be great for you.

Please remember that medical issues are resolved better when the decision making is shared…..your clinicians with their own specialized experience and knowledge, your family and friends who have observed your behavior and you who have been living it essentially by yourself.

May you have peace and ease.
Chris

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Gabapetin was my first medication, very low, so I might ask to increase. I am not sure if it has really helped.

I am always hesitant to use any medication because I want a diagnosis, not medication to cover it up, but I know if pain is bad, I can't function so I have to use medication to help get me through some of it.

I am lucky that I have my family who have vouched for me in so many ways saying "You don't understand.. This girl went from never stopping, to staying in bed!" And it is true. Doctors do not know me, they don't know how active I was and to wake up one morning in pain that has now last 5 months and no answers. Apparently I picked a hard case 🙂

I pray every morning and every night that I get answers, or better yet wake up feeling better, but nothing has come about yet. After the next few tests and doctors visits, I am asking for referrals to Mayo or U of M. I need help.

It's not just the pain, but I have a hard time with gas/BMs, urinating, weak legs, heart rate. My whole body changed abruptly. And no one can figure it out.

thank you for your kind words, Chris x

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@notborntoburn Hi, I think most people with foot neuropathy, or other kinds of neuropathy, have certain positions that are way worse than others. I have a terrible time putting my feet on the ground when I sit. I keep my feet elevated all of the time, even when I have just gotten a DRG stimulator implanted, and pain is not as bad as it was. I do not think neuro docs have a clue why certain positions, places, times of day, etc., make neuropathy worse. But I do think we all suffer in this way. I wish I had an answer for you. I too, look at my feet to see if they look normal when the pain is very bad. Of course, they look perfectly normal, as the nerves are going nuts. Part of this horrific illness…. Lori Renee

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@jesfactsmon Hi Hank, Found the Haelan info here! Thanks a bunch, and now I will go read your link! Lori

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@brayimee

Gabapetin was my first medication, very low, so I might ask to increase. I am not sure if it has really helped.

I am always hesitant to use any medication because I want a diagnosis, not medication to cover it up, but I know if pain is bad, I can't function so I have to use medication to help get me through some of it.

I am lucky that I have my family who have vouched for me in so many ways saying "You don't understand.. This girl went from never stopping, to staying in bed!" And it is true. Doctors do not know me, they don't know how active I was and to wake up one morning in pain that has now last 5 months and no answers. Apparently I picked a hard case 🙂

I pray every morning and every night that I get answers, or better yet wake up feeling better, but nothing has come about yet. After the next few tests and doctors visits, I am asking for referrals to Mayo or U of M. I need help.

It's not just the pain, but I have a hard time with gas/BMs, urinating, weak legs, heart rate. My whole body changed abruptly. And no one can figure it out.

thank you for your kind words, Chris x

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Hi @brayimee per our talk yesterday (on the other discussion) about the possibility that what you are dealing with is actually Guillain-Barre' syndrome, I would like to hear back from you after your doctor checks this out (please use my username @jesfactsmon so I will receive a notice) as I am very curious. Your symptoms really seem to coincide with GB. I also think it would be good for you to stay in touch with the Mayo Connect forum whether you use it regularly or just occasionally to discuss what you are going through, you'd be amazed at how helpful some feedback can be for you while you are going through all of this. Your problem has struck a chord with everyone here and I hope you can get to the bottom of it. All my best, Hank

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@brayimee

Gabapetin was my first medication, very low, so I might ask to increase. I am not sure if it has really helped.

I am always hesitant to use any medication because I want a diagnosis, not medication to cover it up, but I know if pain is bad, I can't function so I have to use medication to help get me through some of it.

I am lucky that I have my family who have vouched for me in so many ways saying "You don't understand.. This girl went from never stopping, to staying in bed!" And it is true. Doctors do not know me, they don't know how active I was and to wake up one morning in pain that has now last 5 months and no answers. Apparently I picked a hard case 🙂

I pray every morning and every night that I get answers, or better yet wake up feeling better, but nothing has come about yet. After the next few tests and doctors visits, I am asking for referrals to Mayo or U of M. I need help.

It's not just the pain, but I have a hard time with gas/BMs, urinating, weak legs, heart rate. My whole body changed abruptly. And no one can figure it out.

thank you for your kind words, Chris x

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@brayimee So sorry you feel so sick. Life is utterly fragile, and sudden illness proves it. You definitely need a diagnosis. I only have Neuropathy and have no clue how to put your symptoms together, but of course, they must be investigated. Best wishes and health to you. Lori Renee

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@lorirenee1

@brayimee So sorry you feel so sick. Life is utterly fragile, and sudden illness proves it. You definitely need a diagnosis. I only have Neuropathy and have no clue how to put your symptoms together, but of course, they must be investigated. Best wishes and health to you. Lori Renee

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Thank you do much for the best wishes. My doctors are completely stumped. I'm going to finishing testing and follow ups, then contact Mayo if I do not get answers.
Aimee xx

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@jesfactsmon

Hi @brayimee per our talk yesterday (on the other discussion) about the possibility that what you are dealing with is actually Guillain-Barre' syndrome, I would like to hear back from you after your doctor checks this out (please use my username @jesfactsmon so I will receive a notice) as I am very curious. Your symptoms really seem to coincide with GB. I also think it would be good for you to stay in touch with the Mayo Connect forum whether you use it regularly or just occasionally to discuss what you are going through, you'd be amazed at how helpful some feedback can be for you while you are going through all of this. Your problem has struck a chord with everyone here and I hope you can get to the bottom of it. All my best, Hank

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@jesfactsmon I will address at some point, it's hard because my doctor said he does not like me researching and bringing forth internet information. So I need to figure out how to speak with him about it..
I've been on here quite a bit looking up symptoms. I also posted in an anxiety forum. It's just been so stressful trying to figure this out.
Aimee x

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@brayimee

@jesfactsmon I will address at some point, it's hard because my doctor said he does not like me researching and bringing forth internet information. So I need to figure out how to speak with him about it..
I've been on here quite a bit looking up symptoms. I also posted in an anxiety forum. It's just been so stressful trying to figure this out.
Aimee x

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Gee Aimee, forgive me for being outspoken but that is patently ridiculous! He needs to listen to YOU, as much as you need to listen to him, and if you have a concern regarding any sort of question, from the internet, a magazine or your next-door-neighbor, it's his job to listen and give you his BEST feedback, meaning he takes you seriously. Don't take me the wrong way, I do not know your doctor I certainly can't be his judge on your behalf, only you can do that for yourself. But you are dealing with enough already with this crazy hideous illness that has landed on you, that you should not have to deal with a doctor you have to walk on eggshells around. Forgive my speaking out like this Aimee, but as an interested bystander I do not care about him, and I do care about YOU. Now I will go chill out somewhere for a while. All my best kid, Hank

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