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

@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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@brayimee I first tried Cymbalta when I was still working and pain had been interfering with my job. After 1 week I said, No more! It made me a little sleepy and nauseous. I could not deal with that at work. At that time I was trying it for pain and to calm my worrisome mind about my health uncertainties. Inevitably, I succumbed to my pain and had to give up my career. Once home, my health kept spiraling and it got to the point of, I'll do anything that helps so, I got back on Cymbalta. It was easier transitioning to any side effects while home. I acclimated to the drug in about a month. I had nausea while getting used to Cymbalta, which my PCP prescribed a tiny little melt away anti nausea pill. It helped with my stomach and allowed me to finally experience the benefits of Cymbalta. Its important to understand that each person's experience may differ and you may need to allow time to adjust to a medication to reap its benefits. Many people bail on a medication too soon and never allow time for it to actually help.

Regarding your pulse…have you worn a heart rate monitor to record you heart episodes yet? Have you been officially diagnosed with SVT?

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@brayimee

@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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Aimee, I vote for Spinal Tap to rule out autoimmune, I think that's a no brainer. I vote for a Neurologist pronto! You describe many symptoms of burning pain and weakness which I experience from Small Fiber Neuropathy. I hope you've already had an extensive. complete blood workup to rule out vitamin deficiencies such as B12 which can cause such disruptions in your body and leave you with permanent nerve damage. Also, what about genetic mutations and disorders?

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@rwinney

Aimee, I vote for Spinal Tap to rule out autoimmune, I think that's a no brainer. I vote for a Neurologist pronto! You describe many symptoms of burning pain and weakness which I experience from Small Fiber Neuropathy. I hope you've already had an extensive. complete blood workup to rule out vitamin deficiencies such as B12 which can cause such disruptions in your body and leave you with permanent nerve damage. Also, what about genetic mutations and disorders?

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@rwinney I have had standard blood tests. I would have to go back and look if they checked B12. My neurologist said, I'm stumped lets try brain MRI and I had to check the results, He didn't even message me or call about it. At the end of my appt. he said see you in 3 months. No other tests have been ordered by anyone else. I don't even know what to ask for, who to go to… This is why I feel so very defeated. I even said to one doctor, I can't do this anymore it's so painful when I get thee"episodes" then I ache all day. He said go to the ER and let them do another CT. I don't think they understand that I think it is nervous system, vascular, or my spine somewhere. I don't know. I just don't know what to do. As I type this, I am in tears, I just feel so lost.
I did wear a heart monitor for 2 weeks and recorded SVTs. the cardiologist said that sometimes as we get older there is no explanation for why we have these things. But these were sudden for me. I don't ever recall my heart doing this.
I'm noticing that I am having several of the episodes I mentioned in the anxiety post to you while I type this. I am looking down at my computer. I am trying to see if these "episodes" are more frequent with my head tilted forward. I keep feeling a pop in the back of my neck and I wonder sometimes if I have cervical instability? Maybe a lot of nerves are being pinched? My cervical spine is the only area not scanned. I am going to start recording if these "episodes" happen in different positions.
I know I should try the cymbalta.. I'm just so scared I won't be able to function for weeks until I am use to it and my kids start home school in the next 2 weeks.
I wish I could give this community a hug 🙂 All of your support means so much to me. Evan my closest friends have not been this supportive. They just don't understand how debilitating this has been for me. Like I said, going from Incredibly active to pushing though a walk to keep my strength up has been devastating. I feel like a broken record when I say I am so lost, but those who know me, who truly know me, know I don't stop, I am the mom that drove her kids to school with a migraine and would stop to vomit on the side of the road and keep driving, but this.. what ever this is.. Has stopped me! I'm desperate at this point ya know!?
Aimee xx

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@brayimee

@rwinney I have had standard blood tests. I would have to go back and look if they checked B12. My neurologist said, I'm stumped lets try brain MRI and I had to check the results, He didn't even message me or call about it. At the end of my appt. he said see you in 3 months. No other tests have been ordered by anyone else. I don't even know what to ask for, who to go to… This is why I feel so very defeated. I even said to one doctor, I can't do this anymore it's so painful when I get thee"episodes" then I ache all day. He said go to the ER and let them do another CT. I don't think they understand that I think it is nervous system, vascular, or my spine somewhere. I don't know. I just don't know what to do. As I type this, I am in tears, I just feel so lost.
I did wear a heart monitor for 2 weeks and recorded SVTs. the cardiologist said that sometimes as we get older there is no explanation for why we have these things. But these were sudden for me. I don't ever recall my heart doing this.
I'm noticing that I am having several of the episodes I mentioned in the anxiety post to you while I type this. I am looking down at my computer. I am trying to see if these "episodes" are more frequent with my head tilted forward. I keep feeling a pop in the back of my neck and I wonder sometimes if I have cervical instability? Maybe a lot of nerves are being pinched? My cervical spine is the only area not scanned. I am going to start recording if these "episodes" happen in different positions.
I know I should try the cymbalta.. I'm just so scared I won't be able to function for weeks until I am use to it and my kids start home school in the next 2 weeks.
I wish I could give this community a hug 🙂 All of your support means so much to me. Evan my closest friends have not been this supportive. They just don't understand how debilitating this has been for me. Like I said, going from Incredibly active to pushing though a walk to keep my strength up has been devastating. I feel like a broken record when I say I am so lost, but those who know me, who truly know me, know I don't stop, I am the mom that drove her kids to school with a migraine and would stop to vomit on the side of the road and keep driving, but this.. what ever this is.. Has stopped me! I'm desperate at this point ya know!?
Aimee xx

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@brayimee I sent you a private message. Please click on the picture of an envelope at the top of this page next to your picture. Hank

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@brayimee

@rwinney I have had standard blood tests. I would have to go back and look if they checked B12. My neurologist said, I'm stumped lets try brain MRI and I had to check the results, He didn't even message me or call about it. At the end of my appt. he said see you in 3 months. No other tests have been ordered by anyone else. I don't even know what to ask for, who to go to… This is why I feel so very defeated. I even said to one doctor, I can't do this anymore it's so painful when I get thee"episodes" then I ache all day. He said go to the ER and let them do another CT. I don't think they understand that I think it is nervous system, vascular, or my spine somewhere. I don't know. I just don't know what to do. As I type this, I am in tears, I just feel so lost.
I did wear a heart monitor for 2 weeks and recorded SVTs. the cardiologist said that sometimes as we get older there is no explanation for why we have these things. But these were sudden for me. I don't ever recall my heart doing this.
I'm noticing that I am having several of the episodes I mentioned in the anxiety post to you while I type this. I am looking down at my computer. I am trying to see if these "episodes" are more frequent with my head tilted forward. I keep feeling a pop in the back of my neck and I wonder sometimes if I have cervical instability? Maybe a lot of nerves are being pinched? My cervical spine is the only area not scanned. I am going to start recording if these "episodes" happen in different positions.
I know I should try the cymbalta.. I'm just so scared I won't be able to function for weeks until I am use to it and my kids start home school in the next 2 weeks.
I wish I could give this community a hug 🙂 All of your support means so much to me. Evan my closest friends have not been this supportive. They just don't understand how debilitating this has been for me. Like I said, going from Incredibly active to pushing though a walk to keep my strength up has been devastating. I feel like a broken record when I say I am so lost, but those who know me, who truly know me, know I don't stop, I am the mom that drove her kids to school with a migraine and would stop to vomit on the side of the road and keep driving, but this.. what ever this is.. Has stopped me! I'm desperate at this point ya know!?
Aimee xx

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@brayimee Hi Aimee, I don't know what to add to helping you after Rachel and Hank, but my prayers are with you. We have just an adoring group of people here, and I always wish I could meet every one of them in person. I am praying you find answers. Lori Renee

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@brayimee

@rwinney I have had standard blood tests. I would have to go back and look if they checked B12. My neurologist said, I'm stumped lets try brain MRI and I had to check the results, He didn't even message me or call about it. At the end of my appt. he said see you in 3 months. No other tests have been ordered by anyone else. I don't even know what to ask for, who to go to… This is why I feel so very defeated. I even said to one doctor, I can't do this anymore it's so painful when I get thee"episodes" then I ache all day. He said go to the ER and let them do another CT. I don't think they understand that I think it is nervous system, vascular, or my spine somewhere. I don't know. I just don't know what to do. As I type this, I am in tears, I just feel so lost.
I did wear a heart monitor for 2 weeks and recorded SVTs. the cardiologist said that sometimes as we get older there is no explanation for why we have these things. But these were sudden for me. I don't ever recall my heart doing this.
I'm noticing that I am having several of the episodes I mentioned in the anxiety post to you while I type this. I am looking down at my computer. I am trying to see if these "episodes" are more frequent with my head tilted forward. I keep feeling a pop in the back of my neck and I wonder sometimes if I have cervical instability? Maybe a lot of nerves are being pinched? My cervical spine is the only area not scanned. I am going to start recording if these "episodes" happen in different positions.
I know I should try the cymbalta.. I'm just so scared I won't be able to function for weeks until I am use to it and my kids start home school in the next 2 weeks.
I wish I could give this community a hug 🙂 All of your support means so much to me. Evan my closest friends have not been this supportive. They just don't understand how debilitating this has been for me. Like I said, going from Incredibly active to pushing though a walk to keep my strength up has been devastating. I feel like a broken record when I say I am so lost, but those who know me, who truly know me, know I don't stop, I am the mom that drove her kids to school with a migraine and would stop to vomit on the side of the road and keep driving, but this.. what ever this is.. Has stopped me! I'm desperate at this point ya know!?
Aimee xx

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@brayimee I've been too overwhelmed with work to keep up with the discussions here, but I had to sit still to drink my coffee, so I'm wading through a very long list of messages.

I can't remember for sure who it was that started a journal/log of everything she experienced – maybe it was Rachel @rwinney I keep a sort of diary to note anything having to do with my health issues, and write in it every night – well, sometimes I miss a night. It helps me keep track of when I start or stop a medication, what doctors I saw that day, my pain details – the level of pain, where it hurt, how it felt – and I write about the emotions I feel…

I don't have anything to add to what others have said, except to reinforce their support and concern for you.

Jim

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@brayimee

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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@brayimee I am so sorry to hear of the ongoing mix of strange symptoms you are experiencing. You want answers and that is understandable. I would like you to enlist the help of @johnbishop to research one of the medications you are on as the potential cause of some of your symptoms. Have him research the medication Xanax (alprazolam). I have read about people who take this medication and experience these strange symptoms . It has to do with it being a very potent medication but also short acting. You may very well be experiencing daily withdrawal symptoms. Google Dr Christine Huff in the Dallas/Ft Worth area. Read about her story. educate yourself about this problem. Then talk with your doctor about how to safely discontinue the use of Xanax and come up with a plan to manage your 2 cousins (anxiety and depression) . You will get through this so start now by enlisting the help of loved ones. You have a huge fan club here,everyone only wants whats best for you.

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@phoenix0509 Hello there. I don't take the xanax often. sometimes 1/2 a day, but not every day. I started having these symptoms well before my doctor asked me if I would like to try it. So I am not sure that is what is causing the issues. I have been a medication phobic person due to my brothers addiction issues so I get very scared even taking 1/2.
What I feel is happening, is that I am having nerve issues causing muscle spasms or constriction of the urinary tract, digestive tract and lower chest. The sensation is so odd, but I have horrible time passing gas, sometimes urinating and my chest gets very tight, but when everything "releases" I can breath very well and become actually dizzy and light headed from it, my bowels will "talk" sometimes my stomach with do lots of gurgling and I will h ave to urinate. I am so so incredible lost and I don't know what is happening, but my body isn't working as it should and it scares me that it will turn into more complications.

Aimee x

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@phoenix0509

@brayimee I am so sorry to hear of the ongoing mix of strange symptoms you are experiencing. You want answers and that is understandable. I would like you to enlist the help of @johnbishop to research one of the medications you are on as the potential cause of some of your symptoms. Have him research the medication Xanax (alprazolam). I have read about people who take this medication and experience these strange symptoms . It has to do with it being a very potent medication but also short acting. You may very well be experiencing daily withdrawal symptoms. Google Dr Christine Huff in the Dallas/Ft Worth area. Read about her story. educate yourself about this problem. Then talk with your doctor about how to safely discontinue the use of Xanax and come up with a plan to manage your 2 cousins (anxiety and depression) . You will get through this so start now by enlisting the help of loved ones. You have a huge fan club here,everyone only wants whats best for you.

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@brayimee, here is the information on Xanax mentioned by @phoenix0509.

Alprazolam (Oral Route) Side Effects – Mayo Clinic (Xanax is one of the U.S. brand names of this drug).
"Other changes may be more unusual and extreme, such as confusion, worsening of depression, hallucinations (seeing, hearing, or feeling things that are not there), suicidal thoughts, and unusual excitement, nervousness, or irritability.Jul 1, 2020"
https://www.mayoclinic.org/drugs-supplements/alprazolam-oral-route/side-effects/drg-20061040

Cardiologist and Cancer Survivor Speaks Out on Dangers of Benzodiazepines, and Her Personal Withdrawal Story: https://www.benzoinfo.com/2016/10/15/an-open-letter-cardiologist-and-cancer-survivor-speaks-out-on-dangers-of-benzodiazepines-and-her-personal-withdrawal-story/

More about Dr. Christy Huff: https://www.benzoinfo.com/christy-huff/

Does any of it sound familiar to you?

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@brayimee

@rwinney I have had standard blood tests. I would have to go back and look if they checked B12. My neurologist said, I'm stumped lets try brain MRI and I had to check the results, He didn't even message me or call about it. At the end of my appt. he said see you in 3 months. No other tests have been ordered by anyone else. I don't even know what to ask for, who to go to… This is why I feel so very defeated. I even said to one doctor, I can't do this anymore it's so painful when I get thee"episodes" then I ache all day. He said go to the ER and let them do another CT. I don't think they understand that I think it is nervous system, vascular, or my spine somewhere. I don't know. I just don't know what to do. As I type this, I am in tears, I just feel so lost.
I did wear a heart monitor for 2 weeks and recorded SVTs. the cardiologist said that sometimes as we get older there is no explanation for why we have these things. But these were sudden for me. I don't ever recall my heart doing this.
I'm noticing that I am having several of the episodes I mentioned in the anxiety post to you while I type this. I am looking down at my computer. I am trying to see if these "episodes" are more frequent with my head tilted forward. I keep feeling a pop in the back of my neck and I wonder sometimes if I have cervical instability? Maybe a lot of nerves are being pinched? My cervical spine is the only area not scanned. I am going to start recording if these "episodes" happen in different positions.
I know I should try the cymbalta.. I'm just so scared I won't be able to function for weeks until I am use to it and my kids start home school in the next 2 weeks.
I wish I could give this community a hug 🙂 All of your support means so much to me. Evan my closest friends have not been this supportive. They just don't understand how debilitating this has been for me. Like I said, going from Incredibly active to pushing though a walk to keep my strength up has been devastating. I feel like a broken record when I say I am so lost, but those who know me, who truly know me, know I don't stop, I am the mom that drove her kids to school with a migraine and would stop to vomit on the side of the road and keep driving, but this.. what ever this is.. Has stopped me! I'm desperate at this point ya know!?
Aimee xx

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@brayimee I have been reading through all of the posts you have written the last week or so. You keep saying that you think the 2 hemangiomas T1 & T11 might be related to your problems. I did some reading on hemangiomas. Most of them, like over 98-99% of them, are asymptomatic. But a very few of them can be aggressive. From what I am reading it sure sounds to me like these hemangiomas could very likely be your main problem and the root of all of your issues, just like you have been saying. Your doctors have blown you off about this because they think your hemangiomas are benign. They might be wrong. Take a look at what it says here:

Among symptomatic hemangiomas, the most common symptom is pain at the tumor site, usually in the back. If the tumor expands beyond the bony boundaries or causes collapse of a vertebra it will create pressure on the surrounding nerves or spinal cord. This can lead to pain that radiates to the arms or legs, weakness, numbness, or clumsiness of the arms or legs, or compromised bowel and/or bladder control. (from https://www.columbiaspine.org/condition/hemangioma/ )

And this:

Symptomatic vertebral hemangiomas are rare but should be considered as a differential diagnosis. They can present with severe neurological symptoms. When managed appropriately, patients regain full motor and sensory function. Decompression resulted in quick relief of symptoms, which was followed by an extensive rehabilitation program.
(from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5088736/ )

Which means this can be cured!

I think your main problem right now is you are seeing the wrong doctors. I now think that your hemangiomas need to be ruled out as the problem first. Especially if they have not even considered it to this point. Seems very odd they would not have picked up on this.

Hank

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@jimhd

@brayimee I've been too overwhelmed with work to keep up with the discussions here, but I had to sit still to drink my coffee, so I'm wading through a very long list of messages.

I can't remember for sure who it was that started a journal/log of everything she experienced – maybe it was Rachel @rwinney I keep a sort of diary to note anything having to do with my health issues, and write in it every night – well, sometimes I miss a night. It helps me keep track of when I start or stop a medication, what doctors I saw that day, my pain details – the level of pain, where it hurt, how it felt – and I write about the emotions I feel…

I don't have anything to add to what others have said, except to reinforce their support and concern for you.

Jim

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@jimhd Yes sir, t'was me who journaled like a mad woman. It helped organize my chaos and was/is a great reference for myself, Drs, disability insurance… as you mention. Excellent suggestion to add to the conversation. 👍🏻

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@johnbishop

@brayimee, here is the information on Xanax mentioned by @phoenix0509.

Alprazolam (Oral Route) Side Effects – Mayo Clinic (Xanax is one of the U.S. brand names of this drug).
"Other changes may be more unusual and extreme, such as confusion, worsening of depression, hallucinations (seeing, hearing, or feeling things that are not there), suicidal thoughts, and unusual excitement, nervousness, or irritability.Jul 1, 2020"
https://www.mayoclinic.org/drugs-supplements/alprazolam-oral-route/side-effects/drg-20061040

Cardiologist and Cancer Survivor Speaks Out on Dangers of Benzodiazepines, and Her Personal Withdrawal Story: https://www.benzoinfo.com/2016/10/15/an-open-letter-cardiologist-and-cancer-survivor-speaks-out-on-dangers-of-benzodiazepines-and-her-personal-withdrawal-story/

More about Dr. Christy Huff: https://www.benzoinfo.com/christy-huff/

Does any of it sound familiar to you?

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@johnbishop Many Thanks for doing the research. John, i have watched you crank out the best unbiased sources and deliver it up like a gourmet meal for everyone to devour. You have the gift to tease out the pertinent information and make our jobs that much easier. Many thanks for your time and talents. In appreciation as you welcome new folks to connect. Not sure how you accomplish all that you do but I am thankful for people like you.

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