Peripheral neuropathy : I would be interested... - Pain Concern

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Peripheral neuropathy

Selma1
Selma1

I would be interested to chat to anyone out there with idiopathic peripheral neuropathy - any experiences with diagnosis and drugs etc.

14 Replies
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Don't know what tests you might have had. The usual are diabetes, B12 deficiency, carpal tunnel etc. I was referred to neurology with tingling arms and numbness to left hand and fingers. Some arm and neck pain. In the mean time was given Pregabalin by GP which helped some, though with initial side effects. After many more tests in neurology including lumbar puncture, and head and neck MRI, passed on to orthopaedics where cervical myelopathy diagnosed. Operated for fusion and spinal decompression but further delay left with leg spasms and numb left foot. Still taking Pregabalin still have tingling arms and numb left foot.

Iiam much the same as you had 11 mri scans 3 brain scans and everything happen the left side of my body iam onptegsbalin 300mg 2x day 25 longttec x2 day w0mg citalopram diazapan amytriptline 75mg

Omg what a lot of medication - does it help at all?

Well iam walking and talking that's all I can say I do still have flare ups

I have suffered from this condition for almost 25yrs, throughout this time at has steadily progressed to the present State, which is that i can only get around with the aid of a walking stick, for a limited few yards, I even have to use the stick in doors for support, the worst part of this condition for me is the total loss of balance, since it means I must try and do everything one handed whilst holding some support in the other hand. My life and hobbies have all been curtailed, Gardening, Golf, Dog walking, none of these can I now pursue, With regard to medication, I do not take any specifically for this condition, only sparing use of over counter medication, the reason for this is that over the years I have tried all the usual drugs prescribed for the condition, but never found any help or relief in any of them, so decided it was pointless taking medication that was doing nothing for me. I am now 82yrs of age, have a lovely spacious home in a wonderful small village, and the unstinting support of a wife and son, I am basically a happy and contented person, this has all allowed me to come to terms with the problem and manage it the best way I can

It is great you have that support around you. It makes me sad you have suffered so long iam a57 yyear old female. Wh I see medical people it's as if it's a new thing I would be very interested on how it all started and if other parts of your body affected ie kidney bowel etc

Sorry you have suffered so long

hi

pregabalin didn’t work for me but 10 mg amitryptiline daily at night really helps me

it’s only a very small dose so side effects soon wears off.

good luck

joebeddall
joebeddall in reply to KR57

I have taken pregabalin for 2yrs. but have had to ween off it.It ceased to give much comfort in my feet and started to give side effects.I am waiting doctors review for alternative medication

I have classic peripheral neuropathy affecting mainly my feet and hands as a result of a type 2 diabetes of which i was unaware until admitted to hospital following a heel ulceration which resulted in a calconectomy.

I have no feelings at all in my toes and very limited feelings in my fingers due to irreversible nerve damage.

There is no medication.

One has to be very cautious re. footware and blisters whilst cooking etc as i have suffered large blisters on my fingers whilst preparing food etc. not realising at the time.

Selma1
Selma1 in reply to Darkin

Thanks for the reply - it seems pretty much the same for everyone- very frustrating when your electrical wiring goes wrong and there seems to be no magic fix. Cancer doesn’t seem to be such a or nowadays as they know what works. I have trialed all these usual meds but only got horrible side effects and coming off them was horrible. Have now managed to get a legal prescription for medicinal cannabis - no improvement so far. My neuropathy is “idiopathic “ but possibly related to blood sugars though I am not diabetic.

Night time not good!!

Idiopathic (meaning docs have no idea where it comes from) neuropathy usually occurs with diabetes. Any chance you're diabetic?

Hello, You don't mention what symptoms you are experiencing. Presumably for it to have been diagnosed as idiopathic you had tests to rule out diabetes or other conditions.

I was diagnosed with small fibre neuropathy several years ago arising from a previously undiagnosed autoimmune condition, Sjogren's. It took years to get a diagnosis. I have extremely painful burning, tingling and numbness mainly in my legs and feet. Brush of clothes or bedclothes very painful. All worst at night. (I think peripheral neuropathy can have similar symptoms). So far as I am aware, similar treatments for both but no cure. I have tried Gabapentin, a couple of antidepressants (supposed to block pain signals) and Tramadol without success. On Pregabalin for some years now which works up to a point but larger doses make me to sleepy.

Selma1
Selma1 in reply to Katerina1

Thanks for taking the time to reply. All seems pretty much like me and we just have to try and keep our heads busy to avoid thinking about it. Nothing has worked for me so I am now trialling medicinal cannabis. As yet to improvement but am still increasing the dose. Night time is worse but that could be due many things - basically being still sitting or lying and sheets clothes etc are a big problem.

Hello I have had PN for the past 4yrs though I think it came on early than that. I’ve had all the tests etc. My neurologist who is very sympathetic has treated me with infusion of retuxamab,may have spelt that wrong. My condition is severe and like others on here can be painful and exhausting due to balance and numbness in feet and hands. I have been offered pain killers but don’t take them. I have R.A. I just try to get on with it as best I can. I am not diabetic. Take care.

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