Hyper sensitive skin/nerves

Brain and nerves
1

Hi, I'm hoping someone might recognise my symptoms.

Basically all my skin and nerves are hyper-sensitive, so almost all the time I feel like a healthy man might feel when he's being sexually stimulated or orgasming, which isn't pleasant at all when it's constant, it's very distressing and verging on painful.

It doesn't seem to be located to any one spot, sometimes my feet will seem to be the focus, so that touching my soles or even a breeze on them sets my nerves alight. Other times it will be my chest, my lower back, my thighs, my arms, etc. Just my clothes brushing against my skin or air on it is enough, it's not only triggered by myself or someone else actually touching my skin.

Masturbating doesn't really bring any relief, in fact it tends to heighten my nerve sensitivity and rather than making me sleepy it wakes me up.

I recently went to a neurological hospital and had nerve conduction studies and EMG, where they gave me electric shocks to my hands and feet, legs as well I think, and measured my response and also used a device that got hot and cold and I had to press a button when I felt it. Apparently the results didn't reveal any peripheral abnormality of the nerves and they suggested my GP refer me to a rheumatologist if my symptoms persist but I can't imagine how they could help. I've got another appointment with the neurologist on Friday, so if anyone can suggest anything I could look into and ask them about that would be great. I was wondering about central sensitisation, which I understand is a problem in the brain rather than with the actual nerves, so maybe the tests they've done wouldn't rule that out?

I've been taking Tramadol and Pregabalin for a few years now and recently added 15mg co-codamol as the Tramadol wasn't sufficient to control my pain. I've been trying to wean myself off them as I suffer from severe dry eyes and mouth as well as severe tiredness, narcolepsy, feeling spaced out, which may be a side-effect of one or both. I did manage to stop everything for a month or two at the end of last year but then the pain got too bad and I restarted the Tramodol, then added the co-codamol. I woke up with the worst headache and sore throat ever the other night though and whilst I may have caught a virus or eaten something bad I understand that headaches can be caused by opoid overuse, so I've stopped them again and I'm just taking the Pregabalin for now. I think my nerve sensitivity might be worse now though, even though I'd expect Pregabalin to help with that more than opoids.

My pain and stiffness is most severe in my lower body, coccyx, sacrum, thighs, shins although I have problems with my back and arms as well. I had chielectomy surgery on both my big toes at the start of this year as I had hallux rigidus in both, with advanced degeneration in the left one and less severe in the right. They're actually more painful now than before the surgery, particularly the right one which also has a burning feeling underneath now and they're just as stiff, so I'll have to have fusion or joint replacement sometime in the near future.

I also have a strange reaction to cannabis. Even one little toke and I feel like I've had a massive injection of adrenaline and inevitably have to go to the toilet shortly after and for the next 4 hours or so I feel dizzy and hyper and can't relax and I'm sitting on the edge of my chair rocking or dancing to music to try and distract myself and burn of some of the energy, eating lots of fruit and ready meals and I get severe tremors so my arms are quite visibly shaking. 

Some people might think this is just a panic attack but it's so intense and lasts so long from such a tiny amount that I can't see how it could be. I really don't understand it as cannabis is meant to help people relax and de-stress and people with MS take it to stop their tremors, but it seems to have the opposite effect on me. Obviously this isn't something my GP can help with, as he'll just feel obliged to say cannabis is illegal and I shouldn't take it but I wonder if there's any specialists in London who would be interested in studying my strange reaction and doing some tests to see what's going on. I'd even be prepared to stay in Holland for a while and be investigated by a doctor there if that's the only way to get this looked at, provided it wouldn't cost too much, as until I know what's going on with my body I'm too worried to have surgery under general anaesthetic, which I may need for throat surgery as I have problems including sleep apnea. I had local anaesthetic for my chielectomy but after being given the injections I started shaking uncontrollably and the heated blanket they put on me didn't help so the had to give me a sedative. It went fine after that and the nurse said it happens sometimes, just a combination of not eating and anxiety/adrenaline. The only other time that's happened to me was about 10 years ago after I smoked some cannabis. I think my friend was more worried than me at the time, as I didn't feel ill at all I was just shaking and he put a blanket on me and eventually it wore off.

2

Hi

Hope you don't mind me asking why was you on the pain drugs?was this for another condition or this one you are expernicing now...i have similar symptoms to you it's been nearly 6 months...i also had all the tests come back normal.trying looking up small fibre neuropathy

3

Hi

I was originally put on the pregabalin about 6 years ago for neuropathic pain in my face. I couldn't go out without a hat covering my ears, even on a sunny day, as just a cool breeze would trigger nerve pain around my ears, spreading across my cheeks to my nose. I've also had a lot of dental/jaw pain which may be neuropathic.

I've probably been on the tramadol about the same length of time. I recall I had very painful/burning lower legs and then in 2009 I was diagnosed with a B12 deficiency and given injections every two days, which seemed like a miracle cure as the pain disappeared but it came back soon enough after I was put on the 2-monthly maintenance injections. I bought some high strength methylcobalamin sublingual tablets and a B-Complex with methylfolate and there was one morning when I was on those that I woke up feeling as happy and energetic as a kid but that was a one-off sadly.

As B12 results don't show if your body is using it effectively I got my Methylmalonic Acid (MMA) and homocysteine levels checked. The supplements brought my MMA down to a healthy level but even though my B12 was quite high due to the supplements, my homocysteine was only just within range (0-15) at 14.91. Excess homocysteine is toxic, so it's better to keep it as low as possible but I have no idea why it remained so high as I was taking all the B-vitamins, B12 and methylfolate and as it was within range the doctors weren't bothered.

Now I have widespread chronic pain, from the arthritis/hallux rigidus in both feet, for which I had unsuccessful surgery at the start of this year and will need to have further surgery soon. Although it's only my feet that have been x-rayed and confirmed to have degenerative arthritis, the doctors reckon the pain in my hands and knees will also be arthritic. I have pain in my chest/ribs, back, coccyx, buttocks, basically all my bones and muscles hurt and are weak.

Of course the medications have a long list of side-effects including joint pain and muscle weakness, so it's impossible to say if they're causing them. I do manage to come off either the tramadol or the pregabalin from time to time (even the tramadol I don't find too hard to stop, I get the sweats for a couple of days but nothing too bad) and manage with paracetamol or co-codamol but after a couple of weeks the pain gets too severe and I end up taking them again and I haven't managed to stop both together to see if I feel better without them.

Thanks for the suggestion about small fibre neuropathy. I'm surprised my neurologist didn't test for that after the nerve conduction tests were OK, as the stuff I've just read suggests that's what should have happened but he just discharged me and suggested I see a rheumatologist if my symptoms continue and I don't they can do the tests for SFN.