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

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 Sounds like things aren't going well for you and I'm sad to hear about your frustration. In my case I was diagnosed with small fiber peripheral neuropathy after my neurologist performed a biopsy. My uncle, sister and brother were all diagnosed with the same thing. The neurologist started me on 100mg of Gabapentin three times and day and after a few months got to 900mg three times a day. It didn't work for me, but it works great for my brother. He started at 100mg and his neurologist has increased it a few times. So your neurologist is the one to increase it. You might want to call and let his nurse know the pain gets to a level 7 (out of 10) or higher and ask what you should do about it. They might raise it over the phone or have you come in sooner. I found that if I tell them what's wrong and ask what I should do, they were more likely to increase my medications as apposed to me saying I think we should increase the medications. Also, don't give up hope. There are other prescriptions that they can prescribe for peripheral neuropathy. They doctor can also prescribe pain medication. My neurologist sent me to a pain management doctor. I no longer see a neurologist. They said there is nothing they can do for me.

Most of my doctors don't like hearing about what I find out on the internet, so I don't tell them directly that is where I heard about something. Last couple of times I just asked them if such-in-such would help and they prescribed it to me, but it didn't help. The only thing that has helped me is a peripheral nerve stimulator installed in both legs and pain medications.

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@fredjan2016

@brayimee Sounds like things aren't going well for you and I'm sad to hear about your frustration. In my case I was diagnosed with small fiber peripheral neuropathy after my neurologist performed a biopsy. My uncle, sister and brother were all diagnosed with the same thing. The neurologist started me on 100mg of Gabapentin three times and day and after a few months got to 900mg three times a day. It didn't work for me, but it works great for my brother. He started at 100mg and his neurologist has increased it a few times. So your neurologist is the one to increase it. You might want to call and let his nurse know the pain gets to a level 7 (out of 10) or higher and ask what you should do about it. They might raise it over the phone or have you come in sooner. I found that if I tell them what's wrong and ask what I should do, they were more likely to increase my medications as apposed to me saying I think we should increase the medications. Also, don't give up hope. There are other prescriptions that they can prescribe for peripheral neuropathy. They doctor can also prescribe pain medication. My neurologist sent me to a pain management doctor. I no longer see a neurologist. They said there is nothing they can do for me.

Most of my doctors don't like hearing about what I find out on the internet, so I don't tell them directly that is where I heard about something. Last couple of times I just asked them if such-in-such would help and they prescribed it to me, but it didn't help. The only thing that has helped me is a peripheral nerve stimulator installed in both legs and pain medications.

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Thank you for your reply 🙂 x
I feel defeated. One moment things are tolerable and the next the pain in my left side has my pulse high and I just keep trying to push on for my kids. But it has changed me and my way of living. No answers makes it so hard. I cry a lot and wonder what happened to me? It was honestly a wake up in pain and never been the same. I don't know what to take for pain? I want to be gentle on my tummy (GI said I had inactive gastritis several months ago when testing started) so I'm not sure if these meds will flare it up?
I'm just lost and I hate saying that because I've always been strong, but this… this has stopped me dead in my tracks.
Aimee

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@jesfactsmon

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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@jesfactsmon No, I'm with you!! I've never had health issue in my entire 41 years until 5 months ago. I'm begging for answers and I don't think my suggestions have been far fetched, but I almost think. He feels as defeated as I do.
I'm so very lost in my situation and when I tell my physician this, he suggests antidepressants until we figure it out, but no test or scan shows anything remotely promising. 2 hemangiomas, elevated IgA are the only things seen.
I see my GI next week to discuss colonoscopy to check GI ( having GI issues), but after that, no other tests have been set.
It's making me feel crazy. I have developed anxiety and depression, but its situational. It's due to the fact I have something triggering these issues and we dont know what.
You are so very kind 🙂 I appriciate that!
Aimee

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brayimee @brayimee — have you tried acupuncture? I mention this because my oncology team (which included a physician and his Phys. Asst., oncology nurses, oncology nutritionist and pharmacist who mixed my drugs) recommended several things to me, one of which was acupuncture. Although an acupuncturist was available thru the cancer clinic I went to, I have not tried it. My team indicated that for some people, it does bring relief, but they needed several sessions.

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@brayimee

Thank you for your reply 🙂 x
I feel defeated. One moment things are tolerable and the next the pain in my left side has my pulse high and I just keep trying to push on for my kids. But it has changed me and my way of living. No answers makes it so hard. I cry a lot and wonder what happened to me? It was honestly a wake up in pain and never been the same. I don't know what to take for pain? I want to be gentle on my tummy (GI said I had inactive gastritis several months ago when testing started) so I'm not sure if these meds will flare it up?
I'm just lost and I hate saying that because I've always been strong, but this… this has stopped me dead in my tracks.
Aimee

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@brayimee Aimee, all of these symptoms hit you at once basically. So there is one unifying cause I am sure. It could be Guillain Barre, it could be something else. It sounds like you are at the point of desperation and I do not blame you for feeling that way. You are right, you are depressed and anxiety ridden for good reason, who wouldn't be?!!! I think if I were you I would contact Mayo and see what they say. You need a highly knowledgeable team working with you to figure this out. You need to understand what it is you are dealing with so you can stabilize at some kind of status quo, however good or bad it may be. Your husband and kids obviously love you very much and I am sure they want you to do whatever is the best option for you and them. Only you can decide what is best but from the limited information I have gleaned from you so far I believe it's time to call out the troops! I mean the Big Guns, aka the Mayo Clinic. My love and heart to you my dear, Hank

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@Paula_MAC2007

brayimee @brayimee — have you tried acupuncture? I mention this because my oncology team (which included a physician and his Phys. Asst., oncology nurses, oncology nutritionist and pharmacist who mixed my drugs) recommended several things to me, one of which was acupuncture. Although an acupuncturist was available thru the cancer clinic I went to, I have not tried it. My team indicated that for some people, it does bring relief, but they needed several sessions.

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I have not yet 🙂 I'm currently trying PT, Chiropractor and massage therapy. I'm on a muscle relaxer and 2 gabapentin at bedtime, 1/2 xanax mid day and I was on naproxen once a day for muscle inflammation, but it's not good for my tummy. I did have a friend mention acupuncture. This might be a next try.
Thank you very much for the suggestion!
Aimee x

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@jesfactsmon

@brayimee Aimee, all of these symptoms hit you at once basically. So there is one unifying cause I am sure. It could be Guillain Barre, it could be something else. It sounds like you are at the point of desperation and I do not blame you for feeling that way. You are right, you are depressed and anxiety ridden for good reason, who wouldn't be?!!! I think if I were you I would contact Mayo and see what they say. You need a highly knowledgeable team working with you to figure this out. You need to understand what it is you are dealing with so you can stabilize at some kind of status quo, however good or bad it may be. Your husband and kids obviously love you very much and I am sure they want you to do whatever is the best option for you and them. Only you can decide what is best but from the limited information I have gleaned from you so far I believe it's time to call out the troops! I mean the Big Guns, aka the Mayo Clinic. My love and heart to you my dear, Hank

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@jesfactsmon it started with severe left upper abdomen pain radiating to the back/flank and as time went on looking for answers, it was the entire left abdomen. It radiated to low back then down left leg and right glute. Occasionally, I feel the same burning in my right, flank/upper abdomen
Lots of odd pain and sensations with bowel/gas/urinary issues, but yes, it started out if no where. Somedays I can tolerate it, other days its maddening. The worst pain can be just along side the left navel, but images show aorta looks good. I'm just so speechless about it.
I gave my parents my medical log in Information to check blood work, urine and other tests. Hoping to get a colonoscopy, Gi work up too, but my Gi doctor has not been very kind.
My mom promises me it won't be forever as she too is just so dumbfounded and sad this has gone on so long. She has already said if I go to Mayo, her and my dad will take me.
Aimee x

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@brayimee

@jesfactsmon it started with severe left upper abdomen pain radiating to the back/flank and as time went on looking for answers, it was the entire left abdomen. It radiated to low back then down left leg and right glute. Occasionally, I feel the same burning in my right, flank/upper abdomen
Lots of odd pain and sensations with bowel/gas/urinary issues, but yes, it started out if no where. Somedays I can tolerate it, other days its maddening. The worst pain can be just along side the left navel, but images show aorta looks good. I'm just so speechless about it.
I gave my parents my medical log in Information to check blood work, urine and other tests. Hoping to get a colonoscopy, Gi work up too, but my Gi doctor has not been very kind.
My mom promises me it won't be forever as she too is just so dumbfounded and sad this has gone on so long. She has already said if I go to Mayo, her and my dad will take me.
Aimee x

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Okay, well you know my thoughts. Stay hopeful, there is no situation so desperate that there isn't hope. You know the old hackneyed expression "Its always darkest before the dawn"? Yeah, it is corny, but it's still so very true. I know from my own life when I was in my darkest moment of my life, a light appeared and a solution opened up in front of me. Do not get too down. Also, another thing I know to be true is that no matter how bad you feel in the here and now, you will get relief, it will come. Meanwhile, make a plan. Whatever it is, it's good to plan out what you are going to do and follow through. I am with you all the way, and everyone on Connect is with you Aimee. Stay in touch, we want to follow your journey with you, Hank

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@brayimee

Thank you for your reply 🙂 x
I feel defeated. One moment things are tolerable and the next the pain in my left side has my pulse high and I just keep trying to push on for my kids. But it has changed me and my way of living. No answers makes it so hard. I cry a lot and wonder what happened to me? It was honestly a wake up in pain and never been the same. I don't know what to take for pain? I want to be gentle on my tummy (GI said I had inactive gastritis several months ago when testing started) so I'm not sure if these meds will flare it up?
I'm just lost and I hate saying that because I've always been strong, but this… this has stopped me dead in my tracks.
Aimee

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@brayimee Hello Aimee. I want to share with you that I also used to cry ALL the time when I didnt know what was wrong. For me it took a while of trouble shooting, wrong directions and head scratching. It is torture to ones soul. I understand and was where you are now. My husband sat beside me, one of those horrible painful days, and held me as I sobbed. This went on for months before he finally looked at me and said, "you need some help". Mentally speaking he meant. Me, the tough one, the one who held it all together for everyone, was failing to hold it together for myself. Never had I been faced with such defeat, frustration, fear and denial. I did 2 things for myself to help get through those difficult times. I began taking Cymbalta an antidepressant which is also used off label for nerve pain. I had refused it the year prior because I didnt believe in antidepressants. The next thing I did was seek help from a chronic pain psychologist. Again, something I never believed in, for myself, because I was always strong enough to handle what came my way. However, when we are faced with uncharted physical pain along side a full load of family responsibilities, a career, an active lifestyle and our lives come to a screeching halt…you'd best believe there will be denial, panic, frustration and unacceptance. The point is to please recognize that you may need help in the moment, be gentle on yourself and know that you deserve comfort. Perhaps pain medication, counseling, antidepressant. I tell you this because I did eventually get diagnosed and you will too. I was later able to get off the antidepressant. There may be mitigating factors for you. Maybe you haven't found the right Dr yet, the right team…it takes time. I firmly believe you are on the right path and will get to the bottom of it all. God, you remind me a lot of myself! Grass doesn't grow under feet like ours because we dont stand still long enough to let it. It is most hard to be stopped in your tracks and wake up one morning a changed person. My heart goes out to you and I wanted to remind you that you are not alone.
Well wishes for a peaceful day and evening.
Rachel

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@rwinney

@brayimee Hello Aimee. I want to share with you that I also used to cry ALL the time when I didnt know what was wrong. For me it took a while of trouble shooting, wrong directions and head scratching. It is torture to ones soul. I understand and was where you are now. My husband sat beside me, one of those horrible painful days, and held me as I sobbed. This went on for months before he finally looked at me and said, "you need some help". Mentally speaking he meant. Me, the tough one, the one who held it all together for everyone, was failing to hold it together for myself. Never had I been faced with such defeat, frustration, fear and denial. I did 2 things for myself to help get through those difficult times. I began taking Cymbalta an antidepressant which is also used off label for nerve pain. I had refused it the year prior because I didnt believe in antidepressants. The next thing I did was seek help from a chronic pain psychologist. Again, something I never believed in, for myself, because I was always strong enough to handle what came my way. However, when we are faced with uncharted physical pain along side a full load of family responsibilities, a career, an active lifestyle and our lives come to a screeching halt…you'd best believe there will be denial, panic, frustration and unacceptance. The point is to please recognize that you may need help in the moment, be gentle on yourself and know that you deserve comfort. Perhaps pain medication, counseling, antidepressant. I tell you this because I did eventually get diagnosed and you will too. I was later able to get off the antidepressant. There may be mitigating factors for you. Maybe you haven't found the right Dr yet, the right team…it takes time. I firmly believe you are on the right path and will get to the bottom of it all. God, you remind me a lot of myself! Grass doesn't grow under feet like ours because we dont stand still long enough to let it. It is most hard to be stopped in your tracks and wake up one morning a changed person. My heart goes out to you and I wanted to remind you that you are not alone.
Well wishes for a peaceful day and evening.
Rachel

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Hi Rachel, please check your private messages.

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@rwinney

@brayimee Hello Aimee. I want to share with you that I also used to cry ALL the time when I didnt know what was wrong. For me it took a while of trouble shooting, wrong directions and head scratching. It is torture to ones soul. I understand and was where you are now. My husband sat beside me, one of those horrible painful days, and held me as I sobbed. This went on for months before he finally looked at me and said, "you need some help". Mentally speaking he meant. Me, the tough one, the one who held it all together for everyone, was failing to hold it together for myself. Never had I been faced with such defeat, frustration, fear and denial. I did 2 things for myself to help get through those difficult times. I began taking Cymbalta an antidepressant which is also used off label for nerve pain. I had refused it the year prior because I didnt believe in antidepressants. The next thing I did was seek help from a chronic pain psychologist. Again, something I never believed in, for myself, because I was always strong enough to handle what came my way. However, when we are faced with uncharted physical pain along side a full load of family responsibilities, a career, an active lifestyle and our lives come to a screeching halt…you'd best believe there will be denial, panic, frustration and unacceptance. The point is to please recognize that you may need help in the moment, be gentle on yourself and know that you deserve comfort. Perhaps pain medication, counseling, antidepressant. I tell you this because I did eventually get diagnosed and you will too. I was later able to get off the antidepressant. There may be mitigating factors for you. Maybe you haven't found the right Dr yet, the right team…it takes time. I firmly believe you are on the right path and will get to the bottom of it all. God, you remind me a lot of myself! Grass doesn't grow under feet like ours because we dont stand still long enough to let it. It is most hard to be stopped in your tracks and wake up one morning a changed person. My heart goes out to you and I wanted to remind you that you are not alone.
Well wishes for a peaceful day and evening.
Rachel

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@rwinney I know you and so many are correct about taking an antidepressant. It makes me feel weak because I am the glue to my family. I'm the strong one. I have Cymbalta and haven't been able to get myself to take it. I told my husband, I don't know what it is ( this pain, is it nerves, vessels, spasms?) What is causing this pain, what has made my body this way? What did I do to induce this? I'm just so dumbfounded! I'm so scared I'm damaging more waiting for answers, I'll never get better.
I get what I call adrenalin dumping, but its painful. Its so hard to explain and doctors look at me like I'm insane, but its real. It makes my legs weak and has caused bathroom issues. My primary doctor things its all musculoskeletal and nerves from lifting weights, but why isn't it subsiding? And what about my pulse? The other day I mopped my kitchen floor and it was 149. Thats not right!! I believe something is wrong with my body, and my anxiety has worsened the symptoms.
May I ask you how Cymbalta worked for you? I also take gabapentin at night only with a muscle relaxer.
All of you have my heart tugging!!! I love the support! Its helpful and I am grateful!
Aimee

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@jesfactsmon

Okay, well you know my thoughts. Stay hopeful, there is no situation so desperate that there isn't hope. You know the old hackneyed expression "Its always darkest before the dawn"? Yeah, it is corny, but it's still so very true. I know from my own life when I was in my darkest moment of my life, a light appeared and a solution opened up in front of me. Do not get too down. Also, another thing I know to be true is that no matter how bad you feel in the here and now, you will get relief, it will come. Meanwhile, make a plan. Whatever it is, it's good to plan out what you are going to do and follow through. I am with you all the way, and everyone on Connect is with you Aimee. Stay in touch, we want to follow your journey with you, Hank

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@jesfactsmon nothing is corny!! I need all the positive thoughts. Words, prayers I can get.
As of now, the plan is to continue with chiropractor, PT, massage, follow up with GI and hope to get a GI work up other than endoscopy, follow up with PMR doctor and primary to see what else we can check. I saw my cardiologist and he was very nice and said let's wait for the lumbar MRI (which came back normal yesterday) and we will see what else we can test. I just can't explain why I feel these rushes of burning pain on my left side and weak legs. I don't think I can wait 3 months to see my neurologist who kind of blew me off.
My husband wants me to be tested for autoimmune disorders, my mom want me to have a colonoscopy and small intestine work up, my dad wants me on antidepressant.. Its so overwhelming!
I really hope you know how much your responses are!! I truly am grateful xx
Aimee

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