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

@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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@brayimee Aimee, as I read your symptoms, could you be having panic attacks as part of your problem? Xanax is actually used for panic attacks. Have you checked your mitral valve in your heart to see if it is working right? If it does not open and close right, it can cause panic attacks. I hope I have not added insult to injury here. But I thought maybe this would help you. Lori Renee

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@phoenix0509

@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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@johnbishop John I second what @phoenix0509 David expresses here. You deserve a lot of credit for being the de facto official greeter here as well as the man with the all the great "Deep Research". You are always right there with a warm "Welcome!" and I never saw anyone so quick on the draw with an article about this syndrome or a study about that rare illness that someone comes here with. The fact that you do it is just really appreciated. My dad had a plaque on his wall at the office that said, simply "Life is Service". You are the embodiment of that idea John. Many thanks!!! Hank

👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍

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@jesfactsmon

@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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@jesfactsmon I do think they should be considered, however I'm so lost as to what needs to be addressed with myself, doctors make me feel very defeated and that this is caused from anxiety, but pain like this… Is not anxiety, not voiding properly for 5 months, is not anxiety, having quiet bowels for 5 months, is not anxiety, all this left side pain, is not anxiety You get what I mean haha!!
That being said, one of the beginning issues I had, 2nd visit I went in for, was low left rib pain, upper abdominal pain and it radiated to the back. I'm guessing in the area of T9-T11 (T11 hemangioma). I had asked my physician about slipping rib syndrome "SRS" because the pain was burning in my ribs and that pain held for months until PT. It started to get a lot better with her help although, I wasn't diagnoses by anyone to have actually having it. So I rulled it out until 3 days ago. I'm not sure what I have done, but my low, left ribs are burning and I can feel a rib under another. I'm wondering if my rib misalignment/rib flare (addressed by my PT) is tugging on my spine and all this urinary, bowel and nerve pain is from the tugging and the muscles that have swelled along the left side. Maybe this is causing a lot of misfiring nerves?? I feel this is another area to address, but unfortunately, there are only a few thoracic surgeons familiar with it and only a handful of doctors/radiologists know how to test for it, but I can tell you.. Whatever has happened has had me in tears multiple times today and in bed.
So 2 things I suppose that can cause nerve pain and radiating issues. Hemangiomas and Slipped Ribs SRS, but I'm stumped about the SVTs and internal vibrations, unless the internal vibration is the SVT?
This pain has caused anxiety/depression, anyone in this state and no answers would develop this at some point, so I don't doubt that some of my symptoms could be from these, but the pain and system interruptions are real. This is way over sharing, but I'd have to tell doctors. Today I urinated so much in 2 trips, I had to take pain medication because my left abdomen and bladder hurt so bad. Something isn't working properly and my tests have been good. I'm just stumped, but could nerves be causing problems?
I have good news, and bad. My doctor said he'd refer me to Mayo or UofM (he prefers Mayo), but I'm not rich by any means and we still have 3 children at home and 1 in college. I'd have to check with insurance and even so I have to figure out how to pay for it. I know for certain I would want the hemangiomas addressed as well as SRS as a possibility. I'm not sure what else this could be at this point, other than nerves misfiring from something.
I wish I could give you a hug x, you have been more attentive than my specialists πŸ™‚ and I will never be able to thank you enough.
I attached a chiropractor Xray so you can see how misaligned I am in the thoracic, lumbar region. My left is being so compromised, but why?
Aimee xx

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@lorirenee1

@brayimee Aimee, as I read your symptoms, could you be having panic attacks as part of your problem? Xanax is actually used for panic attacks. Have you checked your mitral valve in your heart to see if it is working right? If it does not open and close right, it can cause panic attacks. I hope I have not added insult to injury here. But I thought maybe this would help you. Lori Renee

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@lorirenee1 I welcome all advice and ideas. I need to get better for my family and myself.
I have no doubt I've had a few because of this pain. I have only been using the Xanax a month or so and not everyday. It does help calm be down, but I still feel a lot of symptoms.
My cardiologist didn't feel the need to do any more testing. I had asked about POTS/ dysautonomia. He said it's a possibility, but he'd just give me a pill to slow heart rate. I said no, because I don't know if I actually have these. I don't want to treat something I might not have.
Aimee xx

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@jesfactsmon

👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍

@johnbishop John I second what @phoenix0509 David expresses here. You deserve a lot of credit for being the de facto official greeter here as well as the man with the all the great "Deep Research". You are always right there with a warm "Welcome!" and I never saw anyone so quick on the draw with an article about this syndrome or a study about that rare illness that someone comes here with. The fact that you do it is just really appreciated. My dad had a plaque on his wall at the office that said, simply "Life is Service". You are the embodiment of that idea John. Many thanks!!! Hank

👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍

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@jesfactsmon, @phoenix0509 thanks for the kind words guys. It means a lot to me and it also helps me keep my brain active and in learning mode. I try to learn at least one new thing a day and at my age there are times when I may learn the same thing more than once. πŸ™‚

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@brayimee

@jesfactsmon I do think they should be considered, however I'm so lost as to what needs to be addressed with myself, doctors make me feel very defeated and that this is caused from anxiety, but pain like this… Is not anxiety, not voiding properly for 5 months, is not anxiety, having quiet bowels for 5 months, is not anxiety, all this left side pain, is not anxiety You get what I mean haha!!
That being said, one of the beginning issues I had, 2nd visit I went in for, was low left rib pain, upper abdominal pain and it radiated to the back. I'm guessing in the area of T9-T11 (T11 hemangioma). I had asked my physician about slipping rib syndrome "SRS" because the pain was burning in my ribs and that pain held for months until PT. It started to get a lot better with her help although, I wasn't diagnoses by anyone to have actually having it. So I rulled it out until 3 days ago. I'm not sure what I have done, but my low, left ribs are burning and I can feel a rib under another. I'm wondering if my rib misalignment/rib flare (addressed by my PT) is tugging on my spine and all this urinary, bowel and nerve pain is from the tugging and the muscles that have swelled along the left side. Maybe this is causing a lot of misfiring nerves?? I feel this is another area to address, but unfortunately, there are only a few thoracic surgeons familiar with it and only a handful of doctors/radiologists know how to test for it, but I can tell you.. Whatever has happened has had me in tears multiple times today and in bed.
So 2 things I suppose that can cause nerve pain and radiating issues. Hemangiomas and Slipped Ribs SRS, but I'm stumped about the SVTs and internal vibrations, unless the internal vibration is the SVT?
This pain has caused anxiety/depression, anyone in this state and no answers would develop this at some point, so I don't doubt that some of my symptoms could be from these, but the pain and system interruptions are real. This is way over sharing, but I'd have to tell doctors. Today I urinated so much in 2 trips, I had to take pain medication because my left abdomen and bladder hurt so bad. Something isn't working properly and my tests have been good. I'm just stumped, but could nerves be causing problems?
I have good news, and bad. My doctor said he'd refer me to Mayo or UofM (he prefers Mayo), but I'm not rich by any means and we still have 3 children at home and 1 in college. I'd have to check with insurance and even so I have to figure out how to pay for it. I know for certain I would want the hemangiomas addressed as well as SRS as a possibility. I'm not sure what else this could be at this point, other than nerves misfiring from something.
I wish I could give you a hug x, you have been more attentive than my specialists πŸ™‚ and I will never be able to thank you enough.
I attached a chiropractor Xray so you can see how misaligned I am in the thoracic, lumbar region. My left is being so compromised, but why?
Aimee xx

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@brayimee I'm not sure what is available for financial assistance but Rochester Mayo Clinic does have a number you can call. Here are a few links that you may find helpful if you would like to check with Rochester Mayo Clinic.

You can find out more about billing and insurance at Mayo Clinic here:
https://www.mayoclinic.org/patient-visitor-guide/billing-insurance/insurance/accepted-insurance/medicare/more-on-medicare
Charitable Care and Financial Assistance at Mayo Clinic
http://www.mayoclinic.org/patient-visitor-guide/billing-insurance/financial-assistance
Rochester, MN Charitable Lodging
https://www.experiencerochestermn.com/mayo-clinic/hotels/charitable-lodging/

Rochester Mayo Clinic Concierge Services
https://www.mayoclinic.org/patient-visitor-guide/minnesota/becoming-a-patient/concierge-travel-services
I'm hoping you can find some answers soon.

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@johnbishop

@brayimee I'm not sure what is available for financial assistance but Rochester Mayo Clinic does have a number you can call. Here are a few links that you may find helpful if you would like to check with Rochester Mayo Clinic.

You can find out more about billing and insurance at Mayo Clinic here:
https://www.mayoclinic.org/patient-visitor-guide/billing-insurance/insurance/accepted-insurance/medicare/more-on-medicare
Charitable Care and Financial Assistance at Mayo Clinic
http://www.mayoclinic.org/patient-visitor-guide/billing-insurance/financial-assistance
Rochester, MN Charitable Lodging
https://www.experiencerochestermn.com/mayo-clinic/hotels/charitable-lodging/

Rochester Mayo Clinic Concierge Services
https://www.mayoclinic.org/patient-visitor-guide/minnesota/becoming-a-patient/concierge-travel-services
I'm hoping you can find some answers soon.

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@johnbishop thank you so much. I have a lot of work to do.

Aimee x

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@brayimee

@jesfactsmon I do think they should be considered, however I'm so lost as to what needs to be addressed with myself, doctors make me feel very defeated and that this is caused from anxiety, but pain like this… Is not anxiety, not voiding properly for 5 months, is not anxiety, having quiet bowels for 5 months, is not anxiety, all this left side pain, is not anxiety You get what I mean haha!!
That being said, one of the beginning issues I had, 2nd visit I went in for, was low left rib pain, upper abdominal pain and it radiated to the back. I'm guessing in the area of T9-T11 (T11 hemangioma). I had asked my physician about slipping rib syndrome "SRS" because the pain was burning in my ribs and that pain held for months until PT. It started to get a lot better with her help although, I wasn't diagnoses by anyone to have actually having it. So I rulled it out until 3 days ago. I'm not sure what I have done, but my low, left ribs are burning and I can feel a rib under another. I'm wondering if my rib misalignment/rib flare (addressed by my PT) is tugging on my spine and all this urinary, bowel and nerve pain is from the tugging and the muscles that have swelled along the left side. Maybe this is causing a lot of misfiring nerves?? I feel this is another area to address, but unfortunately, there are only a few thoracic surgeons familiar with it and only a handful of doctors/radiologists know how to test for it, but I can tell you.. Whatever has happened has had me in tears multiple times today and in bed.
So 2 things I suppose that can cause nerve pain and radiating issues. Hemangiomas and Slipped Ribs SRS, but I'm stumped about the SVTs and internal vibrations, unless the internal vibration is the SVT?
This pain has caused anxiety/depression, anyone in this state and no answers would develop this at some point, so I don't doubt that some of my symptoms could be from these, but the pain and system interruptions are real. This is way over sharing, but I'd have to tell doctors. Today I urinated so much in 2 trips, I had to take pain medication because my left abdomen and bladder hurt so bad. Something isn't working properly and my tests have been good. I'm just stumped, but could nerves be causing problems?
I have good news, and bad. My doctor said he'd refer me to Mayo or UofM (he prefers Mayo), but I'm not rich by any means and we still have 3 children at home and 1 in college. I'd have to check with insurance and even so I have to figure out how to pay for it. I know for certain I would want the hemangiomas addressed as well as SRS as a possibility. I'm not sure what else this could be at this point, other than nerves misfiring from something.
I wish I could give you a hug x, you have been more attentive than my specialists πŸ™‚ and I will never be able to thank you enough.
I attached a chiropractor Xray so you can see how misaligned I am in the thoracic, lumbar region. My left is being so compromised, but why?
Aimee xx

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@brayimee , I like what you have written, you are clear and precise about what your symptoms are and what is definitely not caused by anxiety. By sharing you allow everyone to see your true self and what a nice self you are, I see how you care for your family. Your symptoms are not caused by anxiety, however I do believe its time to let go. Try something new, if it does not work then move on to something else and cross it off your list. You are strong person and we believe i you. I believe in you.

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@brayimee

@jesfactsmon I do think they should be considered, however I'm so lost as to what needs to be addressed with myself, doctors make me feel very defeated and that this is caused from anxiety, but pain like this… Is not anxiety, not voiding properly for 5 months, is not anxiety, having quiet bowels for 5 months, is not anxiety, all this left side pain, is not anxiety You get what I mean haha!!
That being said, one of the beginning issues I had, 2nd visit I went in for, was low left rib pain, upper abdominal pain and it radiated to the back. I'm guessing in the area of T9-T11 (T11 hemangioma). I had asked my physician about slipping rib syndrome "SRS" because the pain was burning in my ribs and that pain held for months until PT. It started to get a lot better with her help although, I wasn't diagnoses by anyone to have actually having it. So I rulled it out until 3 days ago. I'm not sure what I have done, but my low, left ribs are burning and I can feel a rib under another. I'm wondering if my rib misalignment/rib flare (addressed by my PT) is tugging on my spine and all this urinary, bowel and nerve pain is from the tugging and the muscles that have swelled along the left side. Maybe this is causing a lot of misfiring nerves?? I feel this is another area to address, but unfortunately, there are only a few thoracic surgeons familiar with it and only a handful of doctors/radiologists know how to test for it, but I can tell you.. Whatever has happened has had me in tears multiple times today and in bed.
So 2 things I suppose that can cause nerve pain and radiating issues. Hemangiomas and Slipped Ribs SRS, but I'm stumped about the SVTs and internal vibrations, unless the internal vibration is the SVT?
This pain has caused anxiety/depression, anyone in this state and no answers would develop this at some point, so I don't doubt that some of my symptoms could be from these, but the pain and system interruptions are real. This is way over sharing, but I'd have to tell doctors. Today I urinated so much in 2 trips, I had to take pain medication because my left abdomen and bladder hurt so bad. Something isn't working properly and my tests have been good. I'm just stumped, but could nerves be causing problems?
I have good news, and bad. My doctor said he'd refer me to Mayo or UofM (he prefers Mayo), but I'm not rich by any means and we still have 3 children at home and 1 in college. I'd have to check with insurance and even so I have to figure out how to pay for it. I know for certain I would want the hemangiomas addressed as well as SRS as a possibility. I'm not sure what else this could be at this point, other than nerves misfiring from something.
I wish I could give you a hug x, you have been more attentive than my specialists πŸ™‚ and I will never be able to thank you enough.
I attached a chiropractor Xray so you can see how misaligned I am in the thoracic, lumbar region. My left is being so compromised, but why?
Aimee xx

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@brayimee Aimee, the fact that all of this kind of happened all at the same time, out of the blue from no obvious cause is a clear indication (to me) that everything is related to some unique initial problem. The initial problem could be that one or both of you hemangiomas have impacted some nerves. This could have caused a whole host of problems to develop from what I have read. Perhaps even caused SRS to develop. Can SRS be clearly seen on your X-ray, i.e. have you been confirmed to have it? In any case, as I said before, I think the next step is to find the right health professional. I hear you about $$$ issues. What kind of insurance do you have and what limitations do they place on the network of doctors you can choose from? I would be happy to help you by researching to find the right doctor in your area, as close to your town as possible (you mentioned where you live in an earlier post). Getting you help from Mayo may be what you will need to do also.

Aimee, can you read the private message I sent to you? It's the button (symbol of an envelope) at the very top right corner of this page next to where your picture is. Please read that and reply. After you reply I will send you a follow-up message. Thank-you.

This needs to be resolved! You need to get past the point of all of this desperation. It's making you miserable, undermining your ability to just have a good life with your family, and undermining your health further. It needs to stop. There is an answer to this, and you may very well already be on top of it as it very well could be directly related to the hemangiomas on your spinal column. But whatever it is, there need to be involvement of helpful, intelligent, curious and open-minded medical practitioners. I am hoping you are able to get past this period of tears and desperation, you need to get past this phase and on the a more constructive phase. My best to you, Hank

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@jesfactsmon SRS has not been diagnosed. I don't think anyone in my are or Michigan is very familiar with it. I mentioned it to my doctor and he said if I had it, it takes time to resolve, but there is no treatment. Which isn't true, but he isn't familiar with it so he left it alone. I see my PT and chiropractor on Monday so I certainly will address it. There are special test to determine. A dynamic ultrasound and hooking maneuver, but again doctors do not request or do the tests if they are not familiar with it. This whole issues is strange. Why only left side? ( besides the sciatic feeling in my right glute) I just don't understand.
Aimee x
I got your private message. I'll tell my insurance from there. πŸ™‚

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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 good morning!! Those are very scary symptoms. I do see some symptoms in there I have but, my use is minimal and typically if I take it, it's 1/2 the dose. I don't use it at bedtime nor do I use it daily.
I am wondering if something is going on that is nerve related. And the strange thing, my pain and odd sensation is on the left side. I'm just stumped, but whatever it is, it has very much affected my colon and kidney/ureter/bladder.
Thank you so much for reaching out and caring. It never hurts for me to take a look at all possibilities.
Aimee x

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@brayimee

@jesfactsmon SRS has not been diagnosed. I don't think anyone in my are or Michigan is very familiar with it. I mentioned it to my doctor and he said if I had it, it takes time to resolve, but there is no treatment. Which isn't true, but he isn't familiar with it so he left it alone. I see my PT and chiropractor on Monday so I certainly will address it. There are special test to determine. A dynamic ultrasound and hooking maneuver, but again doctors do not request or do the tests if they are not familiar with it. This whole issues is strange. Why only left side? ( besides the sciatic feeling in my right glute) I just don't understand.
Aimee x
I got your private message. I'll tell my insurance from there. πŸ™‚

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@brayimee Aimee, in some of the reading I did about hemangiomas some people definitely present with pains on just one side of the body so this is not unheard of. I will try to find again where I read that and let you know. Hank

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