RSD Help & info required

I have been seeing a Neuro, this is the background info Sept 1st last year while visiting San Francisco I fell off a segway and broke my elbow it was only a minor break but about 3 weeks after doing it my fingers started to go numb/tingle the elbow specailist thought it was carpel tunnel, a few weeks past and it was my whole arm, a couple more weeks and my head was getting the same feeling, I was also incredibly tired, and had start to twitch, so I went to my GP who sent me to see a neurologist.  I had many tests:- LP, 2x MRI, SSEP, EEG & Brainstem potentails. The only things that showed was a solitary T2 Hyperintense focus in the right parietal subcortical white matter which is non specific. and from the clinical examination I had brisk reflexes. I had been told that the symptoms I was experiencing were not connected to the elbow break.

By the end of January all my limbs where tingling and had a feeling of intense preasure. By april my right eyelid was drooping I have had a preasure like headache on the right side of my head since christmas. Just to add to it all this last couple of weeks the tingling is happening in my private parts and around my neck is a feeling like your wearing a tight scarf. Over the 9 months I have had several bouts of constipation which I have not had before and also a change in my water works!

With no answer to the situation, I suggested that prehaps we are looking at the wrong area of medicine up to this point I have never had any blood tests. So he said he would refer me to have a general medical assesment.

My neuro had told me not to hold my breath on this (he has already told me he does not know what is causing my problems) so my expectations were not high. So I was quite shocked to come out with a DX, at least I think I have.

Firstly I had the blood tests with out even seeing the Dr.  I was very impressed with the Dr he had actually done some backgroud research before I entered the room, he had spent time talking to my neuro and knew what tests I had had etc... He asked me to run through the whole story  again and then told me I had RSD-"Reflex sympathetic dystrophy" or CRPS-" Complex regional pain syndrome"(they are the same thing). He has given me Gabapentin but has explained it may take some experimenting to find a way of controlling it.

I nearly fell off the chair when he said he would right it down so I can google it!

Having done a bit of googling I am quite sad that for the best out come it should have been treated within 3 months of the first symptoms. It looks like I may have to live with it for the rest of my life. Having said that although there are similarities in the symptoms listed I have to say I'm not 100% convinced, although the Dr did say this would be the case. I am however very pleased that I have been given some medication that may help. Something is better than nothing in my book.

I have to take 300mg of Gabapentin 3 times a day starting off with a build up of this. Day 1 one capsule Day 2 two, and day 3 the full 3 capsules. The thing is I think i would be given the same drugs if it is PPMS which has always been my suspicion. So  what have I got to lose?

Having googled RSD the only symtoms (symptoms) that seem to match are the burning sensation which I get in all my limbs, and the twitching/muscle spasms the Dr did say that many people experience it in different ways. But I do not get change of colour or change in skin. Nor am I hyper sensitive to touch.

So I am trying to find out more about it, like I said I'm not 100% convinced. But I hope the Gabapentin will help. So far this has been 9 months of slow progression I don't think the Gabapentin will stop that, I believe it will releve the pain and I am worried what the future holds.

[Dr. A. Srivastava]

Hi, Thank you for the question. I do sympathize with your health concern after surgical complication. It seems that you might have leg nerve injury during the surgery so that may have been resulted into RSD (reflex sympathetic dystrophy). Symptoms of RSD could be intense pain in leg, numbness, altered skin color, swelling and abnormal sensitivity. Treatment of RSD mainly includes steroid & pain killer. In addition, physiotherapy is the essential part of the treatment to improve the movement of the affected leg. I would suggest consulting a neurologist as well in order to reach at probable diagnosis here. Hope this information proves helpful to you.