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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@jimhd

@fde11.

I would be skeptical if my doctor said it was nothing to worry about, and I'd be scheduling an appointment with a neurologist for testing. It might not worry your doctor, but he's not the one with the pain. I'm a little irritated about the way he just blew you off.

I've learned it late in life, but I have to be my own advocate. Don't give up on finding a proven diagnosis. Even if it's not good news, knowledge brings strength.

Jim

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Hello Jim, i forgot to mention does it make a difference if a person as a lot of anxiety, and that is me?

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@fde11

TY so much Hank and Jim i am so scared now , i will call the doctor again and i will keep in touch, ty again

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@fde11 I am sorry you are having the troubles you are having. But can you maybe make it a little clearer exactly what you suffer from right now? I have read some of you recent posts and it sounds like you have bowel related digestive issues, is that right? Are you taking any medications right now and are they helping? And you recently noticed some pain in your lower legs? Can you describe the overall symptoms you have there? Do you think you might not be getting sufficient help from your doctor? Just trying to get an overall picture of your current situation as it stands now. If you flesh out the detail maybe someone (not necessarily myself although I am interested to listen and give feedback if I can) will be able to give you some meaningful and helpful suggestions. I don't like to hear how apprehensive you sound and would like you to feel that you are not alone in this. All my best, Hank

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@sunnyflower

Thank you Rachel! Good advice and support! I appreciate you very much! Peace and comfort and ZERO pain is my prayer for you! Wow, that's a lot of exclamations, only every sentence! 🤔

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Awwwww @sunnyflower, thank you so much.

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@jesfactsmon

Hi @fde11 since I might be one of the few people here who is not sleeping at the moment I will just weigh in here on your message. From your description it does sound like you may be developing the symptoms of peripheral neuropathy in your legs. There are two tests which people who want to have a definitive diagnosis of PN can have done, a nerve conduction test or a skin punch biopsy (google can explain either of these for you) . Both can affirm or rule out sfpn. Here's a brief synopsis of sfpn: https://www.healthline.com/health/small-fiber-neuropathy . If that is what you have, then you may find it gradually getting worse over time or it might stabilize. It could even recede although that is not what happens to most of the people whose experiences I read about. My wife has it in her feet, and has bad burning, occasionally bad itching and/or pins and needles. Thankfully it has not moved up beyond her ankles yet, except once in a while. I recommend you stay in touch with ( i.e. regularly read) the Mayo Connect neuropathy discussions, and you may gain a lot of insight from people actually suffering from it, which makes a great addition to the inputs you will gain from doctors. Among the many people who I have found particularly helpful are @jimhd (who you've met) @johbishop @rwinney @artscaping @lorirenee1 (I could go on there are so many) Wish I could add more than this meagre response, but hopefully you will begin to get answers you need as you move forward speaking with these knowledgeable folks, PN is a journey and not much of a fun one I'm afraid. Best to you, Hank

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Hello HankB, i am worried i was re-reading your post about your wife and her symptoms, mine they go in my legs, and now i find also in my face like a hitch, or in my arms, and burning inmy legs in the lower front, are my symptoms almost the same as your wife, i spoke to the doctor and he booked and appointment at the hospital for a nerve test, i don't know what is involved, i would appreciate for a reply ty in advance

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@fde11

Hello HankB, i am worried i was re-reading your post about your wife and her symptoms, mine they go in my legs, and now i find also in my face like a hitch, or in my arms, and burning inmy legs in the lower front, are my symptoms almost the same as your wife, i spoke to the doctor and he booked and appointment at the hospital for a nerve test, i don't know what is involved, i would appreciate for a reply ty in advance

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Hi @fde11
No, my wife's neuropathy symptoms have so far remained mostly contained in her lower legs. In fact 95% just feet and ankles. There have been rare occasions when she felt it in her hands but only temporarily. A few times it has crawled up her legs to almost her knees. But we know there is no way to know what will happen next, if anything. This is the craziest ailment. Nerve issues are mostly unpredictable. So regardless of how it manifests in one person, the next person's might manifest totally differently.

The nerve test will be a good place to go next. I am learning there are some typical ones people get, such as a nerve conduction test and a skin punch biopsy. There are others, but your symptoms sounds like they may be indicating SFPN (small fiber peripheral neuropathy). The best thing for you right now, if you haven't been already, is to be Googling stuff like crazy. All of the basics about this nerve disorder are there.

Questions you don't get answered somewhere else (like by your doctor or elsewhere on the internet) you can bring here to Mayo Connect. I'm no expert, and most here are not, though it varies from person to person. Lot's of folks here having been living with PN or SFPN or some other form of neuropathy for a LONG TIME. That's the beauty of Mayo Connect. A lot of people are listening to (reading) what you have to say and will respond when they have something pertinent to tell you. That why it's good to try to do more than just graze over this website. OK, enough about that.

Let me say a couple of things that I have observed in the 6 years I have been aware of this illness. One is that stress seems to be a key instigator in making things worse with PN. So try to do whatever you can to reduce your stress level. The other is that (again just my opinion) it seems like many people who have this have the type of personality that could described by some or all of the following words: "overachiever" "perfectionist" "controlling" "hyper" "OCD". These traits stress out the nerves. Another related illness people seem to get is fibromyalgia another nervous disorder which you might want to search for to see if that sounds like you as well.

Anyway, just trying to give you a few ideas to mull over as you explore this further. Please pipe up any time with any specific question or worries you have that are not being addressed for you elsewhere. I am sorry you are developing these symptoms, hopefully you will find out more as you go forward. My best to you, Hank

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Yes. I have also found that when I get a scratch on my arm or leg, there is much more pain than there used to be for a minor scratch. My dying nervous system seems to be over-reacting. Has that happened to any of you? Peggy

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Hi Peggy, yes, everything hurts more and I don't know if it's related but I notice these skin wounds and bruises are taking much longer to heal. I suspect it's from my age, other diseases and medications but do think some of it is the neuropathy. Take care, Sunnyflower

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Hi @sunnyflower sorry to hear of the health issues you are going through. I understand you have seen specialists which you have listed. My guess is perhaps with your wounds and bruises taking longer to heal has to do with the side effects of medications you are currently taking. E.g. any steroids like prednisone will slow down the healing process, any blood thinners will cause easier bruising. This is just to name a few. More specifically you may want to look at your list of medications for side effects. Wish you well.

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@avmcbellar

Hi @sunnyflower sorry to hear of the health issues you are going through. I understand you have seen specialists which you have listed. My guess is perhaps with your wounds and bruises taking longer to heal has to do with the side effects of medications you are currently taking. E.g. any steroids like prednisone will slow down the healing process, any blood thinners will cause easier bruising. This is just to name a few. More specifically you may want to look at your list of medications for side effects. Wish you well.

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Hello. Yes, the Prednisone is responsible for a lot of damage to my body and that's a gross understatement. Some of my other toxic medications as well. It's quite simply, a quality of life issue that I agonize over daily. I think I may have mentioned that my recent bone density scan showed my already severe osteoporosis is significantly worse. My husband and I talked to my Endocrinologist for and hour and 20 minutes last Thursday about my drug options to improve my risk of a spine, hip, wrist or other fracture. These Bisphosphonates can have severe side-effects and including severe flu-like symptoms, although rare, femur fractures and a femur tumor!!!!!! I don't know what to do! They've been wanting me to take the medication for over 4 years now. I and others are praying for direction. This is generally how my life goes. I know the Lord will be with me and comfort me whatever happens.
Take care and warmest regards, Sunnyflower 😊

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