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Peripheral Neuropathy life changing
It all started with pins and needles in one foot. I left it but finally went to hospital and they said my thyroid was underactive. So I was put on tablets to regulate my thyroid but the pins and needles remained and then went to other foot as well. I went to neurology and had MRI of head and back and later that year had another MRI but apart from stenosis there was no compression. I was very ill back in 2020 with other ailments which remain which is all rather strange. This neuropathy has been life changing. I take maximum dose Pregabalin but it doesn't really help save if I come off it the pain and discomfort could become worse. I have tinnitus and gastric problems digestive issues. I am going to see a specialist to see if I might have autonomic neuropathy which I hope will be ruled out. I just cannot accept what has happened to me.
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Amazing they can analyse by a mere skin biopsy.
Welcome @jimbral, I would like to add my welcome to Connect along with @orsons and others. Sorry to hear you have joined our not so exclusive neuropathy club. I'm hoping you can connect with other members and learn what helps. Have you started any treatments yet or looked into complementary or alternative treatments?
No treatments other than Pregabalin. I am seeing physiotherapist on Sunday for assessment. If it is to do with spine then there is possibility there will be another MRI. I think and have thought for a long time that they have missed something out on their observations. I have stenosis and things wrong with spine but have been told no compression. Had head scan with MRI back in 2020. Nerve conduction test EMG. Idiopathic and could not confirm it is Peripheral Neuropathy. So now I am going to see Dr Hadden at Kings College in London to see if it could be autonomic neuropathy. That would be a very serious concern for me so hope it's ruled out. That's all!
Verna
I am new to this group and am so happy to have found you. My peripheral neuropathy started about 8 years ago after what I thought was the flu when extreme fatigue took over my normal active life. My feet felt like they were wrapped in plastic and in some pain. Then pain moved up my legs to my knees. Sometimes the pain now goes past my knees. I have mobility issues along with occasional balance problems. I sometimes use my walker with a seat (that was purchased this year). I take Gabapentin and Cymbalta along with Naprosyn and Tylenol to keep the pain under control. My physician and neurologist don't know what to call this other than idiopathic peripheral neuropathy but they are treating me as best they can. I have found that my rare opportunity to use a hot tub has felt wonderful.
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1 ReactionDon't go on tramadol. After 10 yrs on it I now have gastroparesis and restless legs from it.
I sympathize with all of you my PN companions. I have tried everything from pills to electric stimulation for about ten years of this malevolent disease. Frustration is one of the worst feelings to deal with. Not being able to even walk for more than 10 mins. or so. The burning/cold sensation is the worst. I previously posted an encouraging procedure where hemp cream and ibuprofen before bedtime let me catch some needed sleep yet, that did not last long as the cream only worsened the burning/cold feeling. I am now just taking a 600mg tablet of ibuprofen about 30 min. before bedtime. That at least helps me sleep around 6- sometimes up to 7 hours a night. Can only hope it continues to do so for as long as possible. I also take Tramadol when pain on the back of my thighs is intense. Before I take this pills I haves little food, to hopefully prevent any gastric issues. I hesitate to recommend this as I am by no means a medically trained person and our bodies are all different. At 85 I can only hope that science can find a way to alleviate this stressful malady in the near future to help us all. Good luck to all.
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6 ReactionsIt certainly is as you describe ...malevolent almost like a curse. Would you believe I have continuous tinnitus as well.....both ends. You couldn't make it up. I am a bit younger than you 67 and was a very fit and active person doing 1 mile of swimming 2 or 3 times a week. I walked there and back to. I truly sympathise with your plight. I'm going to see an expert in this field in August. I am a bit concerned it might be autonomic neuropathy you see which would be if great concern. All happened in 2020 pandemic year. I wonder if that had anything to do with it. No tests then and there is no way of knowing either.
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1 ReactionWish you the best. I too used to be very active. Bicycling everywhere, even to the store to buy groceries. Yes, it is a curse and it angers me as I did nothing to bring it on. Why isn’t there research on this, or if there is, do scientists devote too little time to it? Good luck to you and please let us know what the expert says about your situation, maybe we can all glean something from it.
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1 ReactionI surely will after I see him in August
I don’t know if I have PN or something else. All I know is that the balls of my feet and toes feel sort of numb also that I have this blue discoloratio. It’s an awkward feeling like I have sand between my toes and they feel always cold. It takes a while to thaw them out as I called when I go to bed.
I’ve had my genes in my legs worked on hoping that would help.
It’s like they clogged up my bad veins in order to reroute blood circulating through the good ones.
I can’t say that I have pain or even tingles in my feet just kind of numb and blue looking.
Started to see a podiatrist but so far the prescription of Capsaicin .075% hasn’t done anything for me. Next appointment in June.
Anyway does anybody else similar problems?
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