I have got so much encouragement and support here I though I would share my story so far and ask some questions as you have so much knowledge of PN from personal experiences and I need all the help, support and encouragement I can get right now.

I was a very happy, outgoing, joyful and optimistic person until all this happened. I had plans for the future and was looking forward to the next part of my life.This nightmare started just after Christmas last year when I began to get numbness and sharp pains in my right foot, thinking this was something to do with the injury to this foot I saw an orthopaedic surgeon. He said he would do nerve conduction tests to rule out Tarsal Tunnel. Within a week of this (mid Jan) my other foot developed the same symptoms. I have to say that I thought the pain was bad then but it has got worse over the weeks since it started. I think I was in shock and reacted with high levels of anxiety and depression. This pain came on at a time when my partner (of many happy years) and I had started our get “fit regime”. We had given up smoking in August and had started backpacking with long walks at the weekends. We were planning to retire and take off to see the world in our beloved VW camper van. Getting this , what my doctor describes as neuralgic pain, has devastated me. I have not been able to go to work since 12 January and I am the main breadwinner so I have to get myself physically and emotionally strong enough to return to work. My job is in a senior position in a large public sector organisation, it is a stressful job but one that I love.

So.....I had the nerve conduction tests on both feet and the results were normal. The orthopaedic consultant referred me to a neurologist. I had to wait from end of Jan until first week in March when the appointment with neuro happened. (I have posted separately about that) I have had loads of blood tests including Vitamin B12 and the fasting colesteral one. All in normal range.

During January and February I just seemed to get worse. My GP prescribed Trazodone and Athrotec neither of which did anything for the pain, he signed me off work for “neuropathic pain”. He said he would prescribe Lyrica but said that I should wait until I had seen the Neuro. So from first week in Jan to yesterday I have been struggling on with pain relief that did nothing for the pain, the tramadol “turned it down” but as the pain got worse over the weeks this did not really offer much relief. During this time I started have bladder problems, wanting to go all the time and have a pulsating feeling in “that area” which is worse when I sit or lie down and which is driving me nuts. Both my GP and neuro put this down to anxiety but it is not. My anxiety is a reaction to the pain not the other way round! Neither of then seem to show any appreciation that any normal person would have a reaction to suddenly getting a painful condition which is life changing for some, and will be for me in terms of all my outdoor activities and maybe even my job.

Question: Am I the only one who developed anxiety and mild depression when they were diagnosed or when the pain started? How do you deal with it? I am sure all the Drs think I am over reacting and a neurotic and that thought scares me because they have so much control over me in terms of pain relief and support getting through this.

Question: I saw on Liza Jane's website reference to neuropathic bladder, so does this exist because I am convinced that the symptoms I have are not caused by anxiety.

So I am now waiting to hear from the hospital for a date to go and have Evocted Potential tests.

I know that all these tests are for the purposes of elimination of other conditions and that at the end of the day it is unlikely that a cause for this will be found and I am OK with that. I just want to make sure that I get the right treatment as soon as possible.

Question: how do you know that you have a type of PN which would respond well to the IV treatment and what is the IV treatment? I don't know much about this but I have read about it on the forum, the one Alan is having at the moment (I am thinking of Alan and hoping for a speedy recovery from the procedure and safe return home to Melody)

The pain I have now is the usual mixed bag – burning or freezing feet numbness and stabbing pain in both feet. I have pain which goes up my ankles and shins, this is a sharp pain. I also have tingles, pins and needles an pulsating feelings in both legs mostley at the bag of my legs. All standard stuff. As well as this I have painful aching knees and thighs, this is worse as the day goes by. I was putting this down to the fact that I have spent loads of time sitting (mostly in front of my computer) and so have not had much exercise and before all this I took lots of exercise, but not sure that is what is causing it because although I have had ache and pains in the past I have never had this type of aching pain before.

Question: is the pain in my knees and legs part of PN or is it something different?

So that's it for me so far. I thought the Lyrica was having an immediate effect but pain back today with a vengeance. Dr said it takes time to work as it has to get into the system and this takes time as i am building up the dose over three weeks. (I have posted about this) My blood pressure is sky high and I seem to be fighting a losing battle to bring that down, and bring my anxiety levels down. I have been taking as much exercise as I can (only in the last two days but I intend to keep it up) as I am a great believer that exercise is good for the mind and body. am making a real effort not to sink into a poor me state, if I do I will never get myself back into the real world and I do so want to get back to work, although the prospect of going back now scare me. I think you will know what I mean. I am starting to get things together and walk as far as I can before the pain says “NO STOP” (after about 15 mins) and I am going to start going swimming as often as I can.

I am trying to stay positive. Trying to eat properly (I have lost almost a stone in weight)

Question: do you have any tips for what I can do to get my emotional state back in balance and my body as fit as I can make it?

At this moment in time I am not so much interested in finding out what caused this, only to the extent that finding a cause would identify the most appropriate treatments. I have this “thing” and really would like to know what “type” of PN it is and then make sure i get the most appropriate treatment.

Well that's where I am now, I know that it is no good trying to ignore the fact that this has happened and I will have to adjust. I have given up saying to myself “I want my life back” I still get tempted by the notion that could just “take to my bed” i.e. give up on life. One of the things that has kept me going is being able to come to this forum family from time to time and knowing that someone will read this, understand what I am saying and offer up some kind words and advice.

Thanks to you all.
Lupin

And the expereince of getting depressed due to chronic grinding pain is not unique--many of us here, including myself, can report that.

It's why many of us have said the first priority in dealing with neuropathic pain conditions is pain control, which make take time and a trial and error approach to many different combinations of medications and supplements. Once pain is decently controlled--it is rare to be pain free, but one can have it controlled enough to be functional--they one can start researching possible causes and treatments in earnest.

When my acute-onset body-wide burning pain began, it happened so suddenly that I thought I must have injured something, but as the pain spread it became apparent that this was something systemic. Even before I began to get extensive testing, I was put on Neurontin and was fortunate that it began to work almost immediately to knock down the pain, though it was weeks before I was moderately functional. Much of that time I could not tolerate clothing, bedsheets, breezes, was not sleeping, was not eating, certainly not working, lost weight, and yes, got depressed--especially when all my initial tests were "normal" and it seemd like I might be crazy. The fact that the Neurontin was working, though, was a hint something was going on. And the drug worked well enough for me to start dong reserach to try and find out what was going on. Eventually, I was able to get to a tertiary center (the Cornell-Weill Center for Peripheral Neuropathy) and get a skin biopsy which documented damage to the small nerve fibers that subsume the sensations of pain and temperature, a kind of damage most standard neurological tests will not reveal. (Small-fiber damage cannot be seen on nerve conduction studies, which only measure larger nerves, and is very difficult to diagnose, leading unsavvy doctors to think the problem is psychological rather than physical.)

I suspect you may have some sort of small-fiber damage. There are many causes of this, though many remain stubbornly "idiopathic" after much testing. In many of these, autoimmune or toxic components are suspected, but you are at least owed a thorough investigation before they label you "cause unknown". That's what Liza Jane's spreadsheets are for--to make sure you can monitor testing results over time and to suggest testing avenues doctors may not ordinarily think of.

Take a look at these two articles from the Useful Sites:

http://www.thecni.org/reviews/13-2-p07-treihaft.htm

http://www.dcmsonline.org/jax-medici...uropathies.htm


The first talks about small-fiber syndromes, and the second analyzes some different categories of neruopathies (some of which sound like your presentation).

Hi Lupin, The onset of my PN knocked me rotten too, i had never heard of anyone, friends, families anybody who had anything remotely like these weird symptoms that were happening to me, any wonder we get anxious , who wouldn't ?
I was madly searching the net for answers, going from one GP to another, all with different diagnoses, its enough to nearly drive anyone crazy, then i struck gold finding the PN forum, from that day forth things started to make sense and i was guided by the experts here who steered me in the right direction.

tips ; you need to see a Neurologist that specializes in PN, all neuro's know what PN is ok, but having an neuro that specializes in PN will give you all the tests necessary to try to find the cause, not just the basic tests.

B12 levels, what may be said to be in normal range by some doc's whom some are decades behind in B12 research, this wonderfull lady knows more about b12 than most doctors do, i urge you to read her site, thats of course if you haven't already
http://roseannster.googlepages.com/home
I think once you get your pain down to a reasonable level then that should help your emotional state as well, i hope so anyway.
good luck
Brian

And--true to those of us who have celiac disease, gluten intolerance, and gluten sensitivity, have you thought about this approach? Many gluten intolerant people only have neurological symptoms and when they come on, they come on strong. Also, many who are gluten intolerant will find great relief of the neuropathy symptoms after being gluten free. It's worth checking out. Gluten (wheat, rye, and barley) can cause so many problems for so many people. Check out the gluten sensitive forum in this site.

Deb

My partner was with me and did try to speak up but to little avail. In the UK it if difficult to get to see a specialist of your choice unless your GP is prepared to make a referral to one , otherwise you just get whoever is the doctor/consultant at your local hospital, that is the way the National Health Service (NHS) works here. I have found the name of a specialist in PN and he is not far away from where I live. I will ask my GP to refer me as a private patient if I don't get something positive from the neuro I am seeing in the NHS, but an worried about doing this in case he brands me neurotic.

I have thought about the intolerance issue and I am looking in to where i can et some tests for this done. Truth is I eat very little which has a lot of gluten, I am a vegiaterain and generally eat well, organic stuff and a good home cooked varied diet. I aslo take suppliments B comlex, omiga oil etc.

What a position to be in!