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

@jesfactsmon
I am trying to stay strong, but my PMR doctor flushed my thought to drive to WV to see about slipping rib, he flushed my idea in hemangiomas, and when I said I keep getting nerve pain in my right glute, he gave me a psychiatrist referral. πŸ™ My cardiologists flushed my idea that I constantly feel my abdominal aorta and I wondered if it was vascular and told me to try the antidepressants. When I told my GI I was have bowel issues, he gave me a new antidepressant and set me up with a GI psychologist.
I feel defeated. I feel that my health care system is letting me down. I'll try the antidepressant fir a few weeks so I can say, this isn't psychosomatic. And you know, if it is, I will fully admit I was wrong.
Aimee πŸ™ xx

REPLY
@brayimee

@jesfactsmon
I am trying to stay strong, but my PMR doctor flushed my thought to drive to WV to see about slipping rib, he flushed my idea in hemangiomas, and when I said I keep getting nerve pain in my right glute, he gave me a psychiatrist referral. πŸ™ My cardiologists flushed my idea that I constantly feel my abdominal aorta and I wondered if it was vascular and told me to try the antidepressants. When I told my GI I was have bowel issues, he gave me a new antidepressant and set me up with a GI psychologist.
I feel defeated. I feel that my health care system is letting me down. I'll try the antidepressant fir a few weeks so I can say, this isn't psychosomatic. And you know, if it is, I will fully admit I was wrong.
Aimee πŸ™ xx

Jump to this post

@brayimee Hi Aimee, I was wondering where things were at for you since we last communicated. It's obvious your doctors are treating you as a "headcase" i.e. your issues are emotion based and not real. They are prescribing antidepressants and that is it. Assuming what you are going through is VERY real and you know that, then they are not serving you at all.

My question to you is, are you putting any energy toward the Mayo Clinic idea? If you just start by doing SOMETHING in that direction it will get the momentum started. You have described in vivid detail what you are going through with all of your symptoms. If you can just put a little tiny but of energy into heading in that direction (Mayo) and then keep that ball rolling a little at a time while also dealing with everything else, you might be surprised where that takes you. I don't know what else to tell you except put it into your mind what you want to happen. Start to visualize that outcome and keep putting your mind towards it.

You have something that is beyond the experience and scope of the doctors you are seeing. To the degree they can still help you, like your chiropractor for example and what he does for you, keep seeing them, but you need to start yourself heading in a new direction. Have you continued getting yourself organized, by putting all of your documentation into a folder as you had mentioned, and are you starting to keep a journal of your daily experiences and your symptoms? You should start (or continue) this practice as it can be helpful, both to you and any future practitioners who tries to help you. You need to stay firmly in control of your own case and what direction you are heading in.

By the way, have you watched that 2 hour PBS documentary about the Mayo Clinic that I sent you the link to? I am not going to knock any other institution you may be considering, but Mayo is like no other medical center in the world, and if anybody can help you it's them. @johnbishop sent you some great links to their sites. That is the best I can give you by way of advice at this point. Keep me and everyone else here posted on where you are at Aimee. You know my heart is with you.

Best, Hank

REPLY

@jesfactsmon
To be honest, I was hopeful about things and then I slide back and stopped pursuing anything except the slipping rib digging and WV.
I will begin logging again today and I start my elivil this evening, which is the antidepressant, but also helps with pain. My GI said it helps with bowel too.
I know I can't up, my husband begs me to not give up, but when you feel let down by the doctors you feel will fix you, it kind of stomped on my heart. More disappointing news.
I started the documentary, but have not fonished it just yet. I will try and do that today.
I need prayer, I need answers, I need help πŸ™

Aimee x

REPLY
@brayimee

@jesfactsmon
To be honest, I was hopeful about things and then I slide back and stopped pursuing anything except the slipping rib digging and WV.
I will begin logging again today and I start my elivil this evening, which is the antidepressant, but also helps with pain. My GI said it helps with bowel too.
I know I can't up, my husband begs me to not give up, but when you feel let down by the doctors you feel will fix you, it kind of stomped on my heart. More disappointing news.
I started the documentary, but have not fonished it just yet. I will try and do that today.
I need prayer, I need answers, I need help πŸ™

Aimee x

Jump to this post

Aimee I am so sorry that you find yourself in this health mess. But try to keep going for your children. Ask your husband and parents to watch the Mayo documentary as well. Like I said, make a plan, focus on the goal and don't give up. I know that sounds easy to say but it's what you are faced with. As far as Mayo goes, if you decide to go that route, do something toward the goal. Perhaps call them or contact them through their website. Getting started, overcoming inertia, is often the hardest step. I wish I had more to give you, but this is your personal fight, and hopefully with your family on board you and firmly behind you, will get through it all. ❤ Best to you, Hank

REPLY
@brayimee

@jesfactsmon
To be honest, I was hopeful about things and then I slide back and stopped pursuing anything except the slipping rib digging and WV.
I will begin logging again today and I start my elivil this evening, which is the antidepressant, but also helps with pain. My GI said it helps with bowel too.
I know I can't up, my husband begs me to not give up, but when you feel let down by the doctors you feel will fix you, it kind of stomped on my heart. More disappointing news.
I started the documentary, but have not fonished it just yet. I will try and do that today.
I need prayer, I need answers, I need help πŸ™

Aimee x

Jump to this post

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

REPLY
@brayimee

@jesfactsmon
I am trying to stay strong, but my PMR doctor flushed my thought to drive to WV to see about slipping rib, he flushed my idea in hemangiomas, and when I said I keep getting nerve pain in my right glute, he gave me a psychiatrist referral. πŸ™ My cardiologists flushed my idea that I constantly feel my abdominal aorta and I wondered if it was vascular and told me to try the antidepressants. When I told my GI I was have bowel issues, he gave me a new antidepressant and set me up with a GI psychologist.
I feel defeated. I feel that my health care system is letting me down. I'll try the antidepressant fir a few weeks so I can say, this isn't psychosomatic. And you know, if it is, I will fully admit I was wrong.
Aimee πŸ™ xx

Jump to this post

@brayimee Hi, Aimee, don't allow any doc to tell you all of your health issues are "In your head." That is utter nonsense, and it defeats you. As everyone as said here, it is time for a new course of action. You hold your head high, and go to a new doc, Mayo clinic, probably. You are too sick not to. There are good doctors out there. They do exist. Keep searching for them. Love, Lori Renee

REPLY
@lorirenee1

@brayimee Hi, Aimee, don't allow any doc to tell you all of your health issues are "In your head." That is utter nonsense, and it defeats you. As everyone as said here, it is time for a new course of action. You hold your head high, and go to a new doc, Mayo clinic, probably. You are too sick not to. There are good doctors out there. They do exist. Keep searching for them. Love, Lori Renee

Jump to this post

@lorirenee1 I cried the entire way home. From every appt that gives me zero answers. I hold to my story. My pain and odd sensations are left side low rib, down to my pelvis and I get nerve pain in my right glute and it developed in my left foot wear I broke it over a year ago. I have so many symptoms and I think it confuses doctors. I have what I think is happening written down with a few other suggestions. Its just hard, so so hard. I want to take my kids hiking, to little beaches, jump on the trampoline, work out again and i can't, my legs get very weak many times if the day. I literally yell at them haha Stop, you are fine, you will move.
I am starting a very very low dose of antidepressant so I can say haha to their faces, and if they were right, I have no problem saying I was wrong and they were right.
Aimee x

REPLY
@jesfactsmon

Aimee I am so sorry that you find yourself in this health mess. But try to keep going for your children. Ask your husband and parents to watch the Mayo documentary as well. Like I said, make a plan, focus on the goal and don't give up. I know that sounds easy to say but it's what you are faced with. As far as Mayo goes, if you decide to go that route, do something toward the goal. Perhaps call them or contact them through their website. Getting started, overcoming inertia, is often the hardest step. I wish I had more to give you, but this is your personal fight, and hopefully with your family on board you and firmly behind you, will get through it all. ❤ Best to you, Hank

Jump to this post

@jesfactsmon
My plan is to start with WV. My husband put his foot down and said you are worth the trip, I can handle the house, kids and work. And he said if WV is a dead end we try UofM/Mayo. I have a few ideas I have written down as far as a lead and I started my book logging. One thing I'm certain is, my spine is very misaligned, my muscles are very very tight, and my left ribs click a lot and cause burning.
I've been told by a few i should check for lymes too.

Aimee x

REPLY
@rwinney

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

Jump to this post

@rwinney
I love all the support I have here. My plan now is to try this incredibly low dose elevil, stay on PT/chiropractor and head to WV to check my ribs with a reputable thoracic surgeon. If this is a dead end, I lost a few hundred in travels and gained a few good days with my good friend who offered to drive. I will keep on my pain log, write my ideas for diagnosis and apply to Mayo or UofM. My primary already said he would refer my anywhere. I think he is stumped, but wants me to get the help so badly.
Aimee xx

REPLY
@brayimee

@jesfactsmon
My plan is to start with WV. My husband put his foot down and said you are worth the trip, I can handle the house, kids and work. And he said if WV is a dead end we try UofM/Mayo. I have a few ideas I have written down as far as a lead and I started my book logging. One thing I'm certain is, my spine is very misaligned, my muscles are very very tight, and my left ribs click a lot and cause burning.
I've been told by a few i should check for lymes too.

Aimee x

Jump to this post

@brayimee Yeah it could be a lot of things, Lyme disease, who knows? I was thinking maybe Guillain-Barre' or really it seems your hemangiomas could be the cause, but it will be good to nail it down. I think it would surprising if Slipping Rib Syndrome would be the cause of all of your symptoms but again, I'm not a doctor and who knows. Good luck on visiting this guy in WV (does that stand for West Virginia or something else?) I hope he is a smart guy and helpful. Keep us apprised of what's going on, you have a lot of people who are pulling for you my friend. Best always, Hank

REPLY
@brayimee

@rwinney
I love all the support I have here. My plan now is to try this incredibly low dose elevil, stay on PT/chiropractor and head to WV to check my ribs with a reputable thoracic surgeon. If this is a dead end, I lost a few hundred in travels and gained a few good days with my good friend who offered to drive. I will keep on my pain log, write my ideas for diagnosis and apply to Mayo or UofM. My primary already said he would refer my anywhere. I think he is stumped, but wants me to get the help so badly.
Aimee xx

Jump to this post

@brayimee I'm still wondering if you've had a full neuropathy workup by your neurologist? Checking a wide spectrum of blood, lyme, deficiencies?? How about a skin punch biopsy to test for Small Fiber Neuropathy which brings along symptoms you display that I identify with?? And I cant remember if you've had a Spinal Tap? Sorry, if I'm redundant in asking.

REPLY
@jesfactsmon

@brayimee Yeah it could be a lot of things, Lyme disease, who knows? I was thinking maybe Guillain-Barre' or really it seems your hemangiomas could be the cause, but it will be good to nail it down. I think it would surprising if Slipping Rib Syndrome would be the cause of all of your symptoms but again, I'm not a doctor and who knows. Good luck on visiting this guy in WV (does that stand for West Virginia or something else?) I hope he is a smart guy and helpful. Keep us apprised of what's going on, you have a lot of people who are pulling for you my friend. Best always, Hank

Jump to this post

@jesfactsmon I'm in so much pain this morning in my left abdomen. I have this lump that presents its self constantly next to my navel and I can feel my abdominal aorta pulsing. Cardiologist said it looks good, so what is it? Intestine? My PT is stumped. I have such a hard time pursuing help because I'm scared to be disappointed or just labeled the psych girl. I just want my life back.
Aimee x

WV is west Virginia. I question all the time if this even my ribs because my pain changes so much. I feel like someone punched me in my left abdomen. These doctors have really made me question everything about my pain.

REPLY
Please sign in or register to post a reply.