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Old 03-09-2007, 04:58 PM #1
Lupin Lupin is offline
Junior Member
 
Join Date: Mar 2007
Location: UK
Posts: 76
15 yr Member
Lupin Lupin is offline
Junior Member
 
Join Date: Mar 2007
Location: UK
Posts: 76
15 yr Member
Default My story and some questions..long post!

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
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