Presumed peroneal nerve problem, mainly one foot, leg, buttock.Pain/ weakness evolving over 3 years!

I read your letter and felt I must reply to offer you my support.

My feet have been affected by slipped discs in the past, they feel as though they are in a vice, plus sometimes seem to be in warm oil. The only pain I have is nerve damages to one foots toes, due to an op that didn't work.

There must be somebody who can help you, and have you tried acupuncture?

As my feet have been affected by my discs, maybe your theory about scar tissue might not be far off the mark.

Good Luck to you, I hope you get some answers soon.

I want to say thank you for everyone who has replied and sent encouragement and kind words.

To Derek - I googled those antibiotics. To my knowledge I have never had them. You must feel angry and mistreated (as I suppose I do with the loss of a kidney which would have served me well). May I say that you clearly seem very mentally upbeat at 85 and you should be proud of yourself for that.

Thank you also to Kinnear for your further encouragement and Janey.

I have found these communications really quite helpful and soothing. I have been living in a nightmare of painful, confusing and disabling symptoms which don't "let up" except, usually, during sleep. I have had disinterest, blankness and wrong diagnoses from many health professionals. My "little" update is as follows:

Visit to GP this morning

I don't go that often because I don't want them to think I am crazy and I frequently come out no better off. I had wanted support from them and an inquisitiveness to try to help me get to understand what is going on...to take in my medical history and be prepared to cover all possibles. I told her this at the end (diplomatically). She listened.

Today I talked about how my tummy from hip crest to groin is becoming sore. Just right of my hip crest is the incision for my surgery where my kidney was removed by robotics and from where the surgeon, believing then I had cancer, had a good look around at all of my other organs to check for more of the same. I also reminded the GP of how my whole leg has felt unsupported for a least a year, as if it was dropping outwards making me feel like I need to yank it into an upright position. It has previously been presumed that my back was causing my leg weakness, a weakness which also manifests in my foot. I know that some of the new soreness is a result of new Pilates exercises for muscles in my side which I have built tentatively. Also, feeling the soreness on that side only, I have been using a soft, large Pilates ball to lean my tummy on to address scar tissue and have felt how extremely tight it is on that side.

Anyway, the upshot of my discussion with the GP was that, she agreed, the scar tissue in my right pelvis may have been pulling my hip out of alignment and affecting my back too, along with the nerves to my leg and foot. I'm waiting now for an MCAS hip assessment (12 weeks!!) before any consultant or MRI is arranged....or maybe they will just suggest some physio at the end of that wait (which I can do myself anyway!). She said anything in my hip is unlikely to have anything to do with my foot. I think it may be indirectly linked via my back. This is hot, sore burning, pulling pain in my foot which follows through my leg. I'm wondering if paying for a private MRI on my hip might be the next, best way forward.

Alternatively I may press on with the additional exercises for my side which are things like side planks to see if I can strengthen this. Despite my frequent hopeless feeling, I am essentially determined and I actually don't have much faith in the NHS where musculoskeletal things are concerned (and some other things too!!) Everything about my leg and foot has felt so wrong, so twisted, so imbalanced, so perculiarly variable for so long. Like clockwork, on one day my foot and leg feels outward leaning with varying degrees of back pain. On the next day it is more upright but weak on the outer side of my foot and sore, pulling and weak around my 1st and second toes. With evolving symptoms this alternate day thing has gone on for more than a year, maybe two(I don't like looking back too much). None of the Physios I have seen (some of them private) have been able to see what is wrong. I began by having just my foot looked at. That got me nowhere. If anything, I got worse.

Things are changing in my nightmare. I wonder how much the scar tissue i am genly tring to stretch with the soft ball has to do with it. I have booked a scar tissue release session with my Physio for my side under my ribs.The reason I persist with Pilates and Physio exercises is because I recognise that about a year ago I found many of them set my back off or my foot. This scared me and put me off but I have continued very gradually and realise now that some of those things which made me feel worse at one time no longer do. My back pain is also less intense. Being able to get stronger gives me a little confidence.

Now I've gone on too long. Thank you if you stuck with me. Nerves are so confusing. I actually think medical science is also largely confused about them but as Janey rightly said we never give up. Keep on picking oneself up out of the despair, weakness, pain and get back on with things whether that be life itself or therapy, exercise, medication if it works, and love.

hi Elaine and fellow neuropathy patients.

I'm new to this forum but not new to the problem. My problem goes back to March, 1990!!! Yup, almost 30 years. It started with with a lumbar strain that caused pain into my thigh and leg. The back and thigh pain resolved but the lower leg pain stayed. The diagnosis came down to shin splints. (I was walking 4-5 miles a day.) Over the next five years ortho treatment included injections, pt, TENS, pain pills, orthotics none of which gave consistent relief. Fast forward to 2007 when an ill-fitting shoe bruised ligaments and tendons in the top of the foot on the same side. This started my podiatric treatment which was pretty much more of the same with the addition of a boot and night splint when the pain worsens. About three years ago a new podiatrist admitted he didn't know what the problem was and decided we should treat the symptoms. His plan included PT with a therapist who used dry needling. Painful but got amazing results that lasted for months. In August I noticed the pain was creeping pass the normal everyday level. Last week I saw a different podiatrist fully expecting more of the same approach. After questions and exam he asked if I had ever seen a neurologist. He felt I had a nerve entrapment issue. Tuesday I saw a lower extremity peripheral nerve specialist. After his exam he confirmed a peroneal nerve entrapment that can be surgically resolved. It involves decompression similar to carpal tunnel. I was in tears!! I go back next week for an additional test and plan to schedule the surgery for as soon as possible. Just the chance that this pain can be over is enough for me! I'd like to hear from anyone who has had the procedure done. I know this post is long but 29 years of pain is a long time!