Any suggestions?

[wb54]

Last September I experienced extremely cold feet, even though they were warm to the touch. Pain, tingling, and a tapping-like sensation moved up my legs. My GP referred me and I saw a consultant for an initial consultation who lined up tests, including MRI, etc. I had EMG and NCS tests yesterday (Friday 17/2) and the results showed that I have what appears to be "length-dependent small fibre sensory neuropathy. I am still waiting on an MRI and have blood tests next week. The consultant mentioned duloxetine, pregabalin, and amitriptyline. The first two are not advised if you have a heart condition, which I have and the last one is not advisable for anyone over 65, I am 68. I tried Gabapentin (300mg, twice a day) but had a very severe reaction. Meanwhile, the pain and discomfort continue, leading to a severe lack of sleep and on the edge of getting depression. Can anyone suggest a medication or remedy that might ease the pain, etc? Many thanks in advance.

[ThreeSmiles]

Hi wb54 (great year 😀)

I am also 68 and have many of the conditions you have (having read your other posts) although my arthritis is in my back, not knees. In addition I have also had a liver transplant and two further stomach ops.

I couldn’t sleep after the transplant and all the other pains and got two or three hours of sleep a night if I was lucky. I was already on Gabapentin (600mg twice a day) for my stomach and just paracetamol for my back but whilst I was so-so in the day night times were “unbearable”. After a long wait I got referred to the Pain Clinic at the hospital who prescribed Amtriptyline before bed. This has been my absolute saviour and from the start I was sleeping 6/7 hours easily. Fantastic.

I started on 20mg but that left me worn out the whole of the next day so just take 10mg.

My GP, liver consultants (Derby and Birmingham), and heart consultant all know I take Amitripylene and have never commented adversely.

That’s my experience - I really hope you get your sleeplessness sorted out. Nothing worse imho.

Good luck

Miles

[wb54 in reply to ThreeSmiles]

Hi Miles, thanks for your advice, as you say the nights are the worst. This has been far worse than arthritis, etc. I will say to my GP that Amitriptyline might be the way to lessen the night issues with this. Good luck to you and hope you stay on an even keel for many years to come. Regards. Bob

[Motts]

I just now read your post from Sept. and hope things are improving. I too have trouble sleeping. Finally after a few years of complaining about sleepless nights I finally was given a prescription... it took a few tries to find something that helped and I only take it occasionally. But I must say it helps my mind and spirit immensely. However it does nothing for the feet, legs and horrible balance.

[wb54 in reply to Motts]

Cheers Motts, after tests I appear to have Length dependent SFSN and possible Myelopathy, just trying to convince my GP that co-codamol (8/500) is a waste of a glass of water!

[Motts in reply to wb54]

too funny I just saw my first post after I posted the following. it is sad that nothing really seems to help with this disease. At least you are trying (l have given up for awhile)

[Motts]

My sleep was not going well... which effected my mood... of course. I finally got a prescription for a sleeping pill.... I only take it once in a while. The little thing I do at night is put Vick's Vapor Rub on the bottom of my feet. (I am not sure it helps but at least I feel like I doing something.)

[Unhappydog1]

If your blood pressure is under control you might try Pregablin it works 20 percent. I have found whenever I a have any emotions my neuropathy feeds on this. One get rid of people who wouldn’t come to your aid and you theirs in a moment. Try a sleep aid I use zoplicone 1 half or 1 tablet a night. Don’t do anything to extreme. Warm shower not hot warm swimming pool not cold. Stop listening to doctors around P neuropathy. Whether it is their newest medicine or whether thru exhaustive testing they say you are on your own. Take up mediation or relaxation tapes, chi Kung these help me 60 percent. Good luck my friend . This won’t kill you . Find a healthy way to work with your anxieties. Love be strong.

[wb54 in reply to Unhappydog1]

Things have settled down a bit, I think eventually we all learn to live with things, however unpleasant or debilitating. I walk a bit more than I used to which I think helps both physically and mentally. Further tests revealed I have something called the SOS1 mutated gene, which can in certain cases cause cancer. So waiting on yet more tests! At least I am getting my money's worth out of the Health system. I hope you are keeping well and positive. All the very best and thanks for replying. Bob