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Member Neuropathy Journey Stories: What's Yours?
This discussion was created as a place for members to share their journey with neuropathy. This will allow members to easily learn from each other what has helped them and hopefully help new members avoid some of the painful and difficult struggles some of us have faced. The following is a suggested outline for sharing your story that would be helpful for other members for comparison to their own neuropathy story.
— When did your neuropathy start? What were the symptoms? When and how was it diagnosed?
— What treatments or medications have you tried?
— What side effects have you had, if any?
Optional:
— What would you tell your best friend if they told you they had neuropathy?
— What activities have you had to give up because of neuropathy? What do you instead?
— How has your life changed socially? at work? at home?
What's your neuropathy story?
Note: If you want to ask a question for another member who has posted their neuropathy story here in this discussion, be sure to add their @membername in your post, for example @johnbishop. Your question may already be discussed in other neuropathy discussions. Be sure to check here first: https://connect.mayoclinic.org/group/neuropathy/ That way this discussion can be reserved for member neuropathy stories and hopefully make it easier to read and find similar symptoms to your own.
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@maryflorida Hi there. I'm thankful for @johnbishop jumping in. He's got great factual links to share. My neurologist did my skin biopsy. I saw a rheumatologist prior (on my own) because I was wanting to rule out fibromyalgia. It sounds like your upcoming appointment will prove useful. I believe when a Dr tells you that they dont know what to do for you, it's time for a 2nd opinion to verify that is indeed the case. Seeing all these Drs gets exhausting but, when you find the right one it can help enormously. I agree on journaling. The first 2 years of my decline, I journaled symptoms, drugs, procedures. There is alot of physical and mental stress when you dont know whats wrong and are in pain and all over the map. Journaling kept me organized when I'd otherwise lose my thoughts. All the best for your upcoming appointment. Keep persevering. You know your body best.
Be well,
Rachel
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2 ReactionsJohn, thank you.. I can't, won't, complain to my children.. they too have enough hardships in life.. One has Sjogren's (sp) disease, another has heart failure. My husband was blessed to have a kidney transplant in 2018 and I take good care of him. But YOU! You know what is like for me and for you. I'll write things down and also let you know what happens with the rheumatologist. God bless you.
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1 ReactionMy neuropathy started from a bulging disc at l5/S1. In 2011, I was scheduled for back surgery. Minutes before the procedure the surgeon looked at the new MRI & said he felt the bulge was improving and thought we should cancel the surgery. It was a very emotional time. My back pain did not improve for quite awhile & then I started to get tingly, numb, buzzing in my feet. I am very active with running, walking biking and yoga. My pain is worse when I am lying down. Muscle relaxers and ice give me some relief. My greatest fear is being unable to get outside and move. I haven’t found others with similar story. I was excited to see James had issues with L5S1. Sometimes, I feel it is all n my head. Knowing someone with similar causes is a relief.
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2 ReactionsHello @djones6340, Welcome to Connect. One of the great things about Connect is sharing and finding other members with similar stories and symptoms. @jenniferhunter created another discussion where you may also find some helpful suggestions.
Myofascial Release Therapy (MFR) for treating compression and pain: https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/
Have you heard of Myofascial Release Therapy?
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3 Reactions@djones6340 Hi! Please dont ever feel that it's all in your head. I was there too and it took me some time to come to my senses that it was not in my head. I felt and lived it. It's difficult when you cant line up other stories similar to yours. I always say, comfort numbers and well as validation that someone else out there knows what you are talking about. Glad you are finding some relief. I hope time is your friend with healing of nerves. Be well.
Rachel
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2 ReactionsHi,my name is resa and in 54 yrs old. I have always been really healthy and i work a full time job.i hurt my shoulder at work and figured it was just a pulled muscle. A week later my fingers started going numb,and then my hand. FIRST neurologist, after a mri,sent me to a specialist, and he said herniated disc, 2nd neurogist said Chiari malformation and wanted to cut my head open.that freaked me out.and I got a 3rd opinion. And he wants to cut my back open! Now the nerve pain is from my waist up on my left side,all the way down my arm! Numb,burning, sticking,stabbing,pain from hell! My husband don t get how bad it is,and I still havet to work everyday in a glass factory, useing my hands! 40 hrs a week! By the time I get home, I want to die! Lyrica helps some,but it never goes away! But people don't get it cause they can't see it! I don't know what to do! I'm scared of surgery. Any advice out there?? Sorry so long!
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2 ReactionsHi Resa, my first thought is, unless you have a clear diagnosis by at least two doctors that you trust including a surgeon that you trust implicitly, I'd go slow on agreeing to surgery. Surgery must always be the last resort as there are big risks to surgery itself as you sound like you already know. I'm sure someone here on Connect can steer you into some other things to try or look into before going the surgery route. Best, Hank
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2 Reactions@resawaller Hi Resa. We've spoke in the past on Connect and I recall you had been very distraught. Haven't heard from you in a while...I'm sorry to hear you are still fighting these neurological problems. Surgery is last! How about pain management...epidurals, nerve blocks? Have you tried these yet? Physical Therapy...myofacial release,. Ocupational therapy? Is your Lyrica at proper dose? Can it be increased for better results? I feel your pain and want you to know you are not alone.
Rachel
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3 ReactionsResa, I looked through some of your previous posts. Firstly my heart goes out to you, I can hear you utter desperation. It's awful to have extreme chronic pain with nothing to give any relief. I was going to ask whether you have tried marijuana? That might be a big help. I noticed you mentioned Tennessee in one post from last year and I assume you live there (we do too) and I know medical marijuana is not legal here yet. I don't presume to suggest you buy some illegally if you would feel uncomfortable doing it. However while you wait for legalization you might try cannabus oil which is legal. Another thing you could try is kratom. Lori @lorirenee1 is a person on Connect who has used kratom extensively. I believe she orders hers from https://ethanaturals.com Anyway, I hope you can find something to give you more relief than you seem to be getting from Lyrica. Best, Hank
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2 Reactions@resawaller @jesfactsmon @rwinney Hi Resa, I want to chime in here to try to help you. Hank and Rachel have said many of the things I would say, but I do want to really confirm how much Kratom helps. It is a plant from the SE Asia, and is put into pill form. Buy it at ethanaturals.com It is the only thing I use that really helps nerve type pain. I swear by it. Unfortunately, I have read that it can be addictive, so I take it every other day. But it literally takes pain away for 2 to 3 hours. If you want to know more, please let me know. Lori Renee
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3 Reactions