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

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@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

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@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

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@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

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@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

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@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

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@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

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@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

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@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

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@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

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@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.

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@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

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@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.

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@rwinney

@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.

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@rwinney No one has done anything but scans and some blood work. My husband is so angry because instead of a colonoscopy, my GI refers me to a GI psych. My husband saud what if you have a colon issue. I just don't get it 🙁 I cry everyday because these left side symptoms can be he** I try to be normal when I can, but my legs get so weak.
After my adjustment yesterday, I felt awful. I feel awful after PT and chiro and I've been in for over a month with both. Both my PT and Chiropractor said i have what they feel is a rib out, which can cause a lot if nerve issues. My PT said she things rib 11 and chiro things rib 9/10, but if they are issues and pulling on the spine, those nerves are running to all bowels, kidney, etc. A fellow rib friend said he gets horrible diaphragm spasms and muscle spasms, and I wonder if this is happening to me?? It just does not make sense why this is all my left side.
My doctors have made me question myself more than anyone else I know and they are giving me depression because they have given up.
My husband put his foot down and said GO to WV to see this thoracic surgeon about your possible slipping rib syndrome. If its not that well we go to UofM or Mayo, but maybe the thoracic surgeon can look at your spine too.
Aimee xx feeling so lost.

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@brayimee

@rwinney No one has done anything but scans and some blood work. My husband is so angry because instead of a colonoscopy, my GI refers me to a GI psych. My husband saud what if you have a colon issue. I just don't get it 🙁 I cry everyday because these left side symptoms can be he** I try to be normal when I can, but my legs get so weak.
After my adjustment yesterday, I felt awful. I feel awful after PT and chiro and I've been in for over a month with both. Both my PT and Chiropractor said i have what they feel is a rib out, which can cause a lot if nerve issues. My PT said she things rib 11 and chiro things rib 9/10, but if they are issues and pulling on the spine, those nerves are running to all bowels, kidney, etc. A fellow rib friend said he gets horrible diaphragm spasms and muscle spasms, and I wonder if this is happening to me?? It just does not make sense why this is all my left side.
My doctors have made me question myself more than anyone else I know and they are giving me depression because they have given up.
My husband put his foot down and said GO to WV to see this thoracic surgeon about your possible slipping rib syndrome. If its not that well we go to UofM or Mayo, but maybe the thoracic surgeon can look at your spine too.
Aimee xx feeling so lost.

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@brayimee Aimee, trust YOU. Trust that you (at this point anyway) are the only one who knows that this a real physical issue. It's not in your head. I don't believe that and you need to discount these doctors who are making you feel insecure. Trust yourself, trust your husband who obviously believes in you. And most of all trust God. My wife and I always say to each other that God never gives us more than we can handle. And I believe you are tougher than you think you are, there is a strength inside of you. Just don't give up, stay on your course, whatever you have decided that is. Go with your friend to WV. Your husband is a good man to encourage you in this.

Look at it this way, life is a journey. The journey is all about God's plan for you. Turn to Him for guidance, and after that your job is to just make the best decisions you know how to and do the best job you can to execute these decisions. But leave the results to God as this is His ballgame not ours. And I don't mean to sound patronizing, I'm sorry if I do. I've been through stuff in my life that was hard as well, and I didn't always follow the advice I am giving you. But what I am telling you is the best I can come up with out of my own little pea brain to try to help you. I genuinely care about you and your family, as I think many of us here do. Try to remain calm, deep breathe a lot, and keep putting one foot in front of the other. I will pray for your ultimate success Aimee. Best, Hank

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@fredjan2016

My feet burn more when I sit or lay down. I put them in cool water to ease the pain. I also take prescription pain pills.

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You may find, as I have, that soaking in warm water works better. As the disease progressed cold really hurts. I also use a CBD ointment on my feet and legs.

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@brayimee

@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

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@brayimee Hi again, Aimee. I reread everyone's postings about what might be wrong with you, including all of your descriptions. A light bulb went off in my head when reading that you broke your left foot a few years ago. All of the many symptoms you have could be that you have CRPS, which is often triggered by injury. CRPS is chronic, regional, pain syndrome. (I think I have the name right.) It can be a body wide pain syndrome, that often starts from an injury, and progresses to various symptoms throughout the body. Keep at it, Aimee! Don't allow your docs to defeat you. They are just people. Find new ones. Lori Renee

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