Neuropathy : Hey you guys jus wanted to... - Restless Legs Syn...

Restless Legs Syndrome

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Neuropathy

destiny05 profile image
13 Replies

Hey you guys jus wanted to introduce myself and see if i can find any similar stories or people who are going thru something similar and can offer support i am on this app after coming out of my depression hole and i am ready to talk to somebody . I am 21 years old 2 years ago i got hit by a 16 wheeler and was diagnosed with a radial tear in my L1-L5 vertebrae and after doing all types of intensive therapy for a year and no help with the chronic pain we decided to try epidural steroid injections after no help we were aiming to do a procedure where they go in and burn the nerve thats causing pain (kinda like a root canal ) i wasnt given enough anesthesia so i wokeup crying screaming while the needle was in my back i was given more anesthesia and told to calm down they finished the procedure and i went home that same day having symptoms i never had before (burning , tinging sensation from my knees all the way up my sciatic nerve to my tail bone , extreme pain while sitting , limping and leg weakness in one of my legs ) fast forward two months after having multiple test run (mri,emg,full blood panel) i was told i do not have any immune diseases causing the disorder and i was diagnosed with peripheral nerve dysfunction and neuropathy of my leg fast forward to date i have neuropathy in both of my legs and full blow symptoms in both and also starting to have symptoms in my arms . I am currently being seen at John Hopkins medical center trying to get answers . I have been dancing /cheerleading all my life and it has been really hard accepting the fact i cant use my legs how i used to . i am 21 and have to use a cane to walk through the mall i cant go on normal dates , vacations walk around the city with my friends its very hard to accept but i am dealing with it the best that i can . Thanks for hearing me out you guys ❤️

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destiny05
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13 Replies
Madlegs1 profile image
Madlegs1

I'm sorry for all your troubles. Quite a story.

All I can comment on is the nerve burning procedure, which I had done. It was very successful for me- over 18 months ago and still working. That is just to reassure people who may be considering such a procedure.

Lower back pain is incredibly difficult to manage. I hope you can get some relief at some stage soon.

All the best.

destiny05 profile image
destiny05 in reply to Madlegs1

Appreciate you

How awful, sorry that you're having this experience. I too have some neuropathic problems due to spinal degeneration, mainly due to my age.

It is mainly down my left leg, I have some symptoms ever day but it is nowhere as bad as yours.

I did have a really bad spell last year when the pain became unbearable after a few seconds of walking or even standing. Luckily, it did respond well to oral antiinflammatory and Gabapentin.

I haven't really had and problems with weakness

I now take Gabapentin regularly.

The thought of having that at your young age is terrible.

I am learning that acceptance is a key factor in dealing with difficulties such as neuropathy and RLS, which I have also had for over 30 years. It is however, easy to say that. Not so easy to do. Acceptance, I believe is of benefit when there's little or nothing that can be done. It doesn't fight the symptoms but by not fighting symptoms, paradoxically it does lessen their impact.

I have recently discovered there is a therapy based on the idea called Acceptance and Commitment Therapy, (ACT) which does offer some techniques for gaining acceptance for which there is some evidence. I'm going to be looking into it.

I do hope you get some improvement in your condition and some support and help.

I can't pretend to fully appreciate what you're going through, but you do have my sympathy.

Skifam profile image
Skifam

Destiny-

What a horrible experience. I understand your issues with acceptance especially at such a young age. I am 67 and using a cane now due to advanced osteoarthritis in both knees causing the inability to walk only about a block and never without pain. That said, I understand your misery at seeing friends walking and running without a care in the world when you can barely stand, somehow it just doesn’t seem fair. But I’m learning to adjust to the difficulty and chronic pain in walking and some days are better than others. Then there are days I throw in the towel and barely move off the couch. But I’ve come to learn that everyone has to deal with something and however bad you feel somewhere there is someone dealing with a lot worse. What got me out of depression was getting out of my own head. I started volunteering at a Free Clinic serving mostly the homeless population. Volunteering was the answer for me as well as concentrating on things I could do rather than what I can’t do. I really hope there is an answer for you somewhere and you can come to some acceptance of your reality. Best of luck to you.

destiny05 profile image
destiny05 in reply to Skifam

Thank you so much

Joolsg profile image
Joolsg

Hi Destiny,

I am so sorry you have had to go through so much at such a young age. I hope so much that you will get relief from the pain you are experiencing. Your body has suffered a lot.

I wish you strength and am sending positive, healing thoughts your way.

The brain and body have an amazing capacity to heal. The brain tries to find new nerve pathways to heal damage.

Gentle yoga might help your body find those pathways so maybe find a local practitioner/class to guide you through some gentle exercises.

Taylor44 profile image
Taylor44

Hello Destiny, I'm sorry you had to go through all of that at such a young age. Stay focus and don't give up. This is what I'm telling myself to do every day also. I have similar symptoms and I am now being seen at Johns Hopkins hospital also. If I get any good information or help from the doctors there I will pass it on to you. I know it's hard but try to stay strong as I am 44 and really struggling with it, so don't feel bad. I wish you a speedy recovery.

destiny05 profile image
destiny05 in reply to Taylor44

Thanks so much i wish u the same

long-legs profile image
long-legs

So sorry to hear about your troubles. I have peripheral neuropathy, not bad yet, but I'm sure it'll end my dancing days sooner or later. I'm 64, so I can be philosophical. I hope you find some way to express your longing to dance. Also I hope you find a way to improve your mobility and reduce your pain.

destiny05 profile image
destiny05 in reply to long-legs

Thank you for all the positive wishes i wish the same to you

Sara_2611 profile image
Sara_2611

Welcome destiny05

I wish you a complete recovery .

destiny05 profile image
destiny05 in reply to Sara_2611

Thank you ! Same to you

Sara_2611 profile image
Sara_2611 in reply to destiny05

youre very welcome my friend

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