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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board

Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index

Re: Possible Hope
Jun 4, 2011
This is my theory from which he has said he will see if he can set it up.

I realise this may be a load of rubbish, it may be the complete answer or somewhere in between and give you something to work with. I have no idea whether you will bother to read it but at least I know that I have done everything in my power to help other suffers.
As you know I have spent hundreds of hours on the internet researching RSD, if I hadn’t I would never of found you. Although I don’t know as much as you and the other real specialists, I know more than anyone else in the NHS. The one advantage I do have is that I am used to searching for clues and piecing the evidence together, in fact I was so good that in 8 years in the Police Force I only lost one cases and that was on the Judges Direction because the defendant turned up with an identical twin brother and he stated no conviction could be safe.
I am not going to go into every detail that led to my theory but just the 4 main trigger points..
1 You told me when I asked why walking sent waves of pain through my hand that this is because the pain centre of the brain had been scrambled. This does not seem right. If there is a pain centre then surely there must be a pleasure centre and for pleasure ones to be converted to pain the crossover must happen before the signal gets to the brain.
2 The only thing that is claimed to have cured RSD is the 5 day Ketamine Coma which they claim reboots the brain, maybe that is not what happens.
3 A letter from my solicitors asking if I had spoken to you about an SCS. I remember reading on the forum of a woman who had one of these which did reduce the pain significantly but when the batteries ran about the pain came back badly.
4 An old saying I have not heard for many years, no idea if you have heard of it. So beautiful it hurt.
As you know this does affect our brain in strange ways so I am not sure if what I am going to put down next is in a logical order and I know some of it will sound strange to you but if you have got this far please bear with me until the end.
Do you remember as a child watching cartoons? The hose pipe across the garden a big slug of water travels down it and the pipe expands and contracts as it passes.
Have you ever had one of those role up power extensions, even if you only need to go 2ft you have to pull it all the way out because electricity generates heat and if you don’t eventually the plastic covering will start to melt and the wires will fuse together. The heat also causes expansion of the wires in the confined space which accelerates the process
I know you will be aware of the McGill Pain Index but that is only one side, now obviously I can’t do a survey so the names are obvious pleasure givers but the scores are made up. So here is the Kevscar Pleasure Index.

Now for the routing system to send the signal to the right part of the brain the charges must be different so the McGill pain Index would be a negative electrical charge and my Pleasure Index would cause a positive charge. So a combined Index would look something like this.

This may explain why some cases of RSD have no trauma associated with it, rather than overdosing on pain they have overdosed on pleasure.
Now we know the nerves are flexible they lengthen and shorten with movement so they must also be capable of expanding and contracting. The higher the electrical charge the more heat is given off the more the nerve expands. Once a certain heat level is passed then logically the outside of the nerve will start to melt and become tacky.
The best way to explain it is what happened to me. The local anaesthetic needle gave pain reading of 15 on the McGill scale and did not stop. The first cut increased it to 25 the second to 35 and the third to 45 just over the RSD threshold. The 4th made it up to 55 causing me to jerk so hard breaking my hand and instantly adding another 20 points to the pulse signal. Going up the nerve if we could see it would look exactly the same as the hosepipe I mentioned earlier. That’s fine in the arm but what happens when it gets to the central nervous system in close proximity to other nerves. The hot expanded outer nerve sheath or covering touches another nerve and instantly fuses or sticks to it. With no possibly of going further the charge and heat remain there unable to dissipate. This maybe why so many of us describe it as a burning pain, we are actually burning inside. Now any signals coming from the nerves attached to it hit the superheated area and are also transformed into high level pain signals, they keep fuelling the pain signal. It may explain why my leg signals are transformed into pain but nothing I do with the left hand has ever caused any. It is far enough away from the right hand one that they did not come into contact.
This may explain why some people who are diagnosed within the first 3 months are receive the correct treatments, gentle massage, hydrotherapy, etc recover. If they are just on the threshold or over it the contact area would be relatively small, the pleasure signal given by the treatment may counteract or reduce the pains ones allowing the heat to cool and the shrinkage detaches the nerves from each other. Everything I have read describes this as long-term remission but it may actually cure it, whereas if like me you are well over the line and get the wrong treatments making things worse by the time we get to someone like you who knows what going on nothing will reduce the signal enough to let the area cool down.
As I said earlier the Ketamine coma people say it resets the brain. There is a possible other explanation, when you are in a coma there are no outside stimuli causing signals to be sent through the nervous system so with nothing to stoke the area it maybe able to gradually dissipate. As the area cools down the nerves shrink slowly detaching from each other and returning to normal. Now if I am correct that means any medically induced coma would have the same effect and something much safer than Ketamine could be used.
There is one big flaw in my theory, you will probably find others It does not explain why even on the hottest days a cool breeze will instantly turn my hand to ice and prolonged exposure leaves my torso freezing for hours.
A theory is only a theory or guess or even wild speculation until it is tested and as it’s my theory and if you think it’s worth testing out then it’s only right that it should be tested on me and I will happily accept any risks associated with it, however I would suggest that because of the level I went to it should be a 7 or even 10 day coma to give it the best opportunity to work.
I found out in your PSSU and the Acute Card Ward at L&D that the most dangerous place for me is in Hospital with people who have never heard of RSD and don’t believe me when I tell them about it. I have been in touch with Professor McCabe at Bath in attempt to persuade her to use the last hour of her conference to coming up with an education program for the NHS so other people don’t have to go through what I and practically every other suffer has. With your permission I would like to forward this to her in the hope that she would agree to do the trial there where everybody knows what RSD is, however the final decision on whether, where and when to do it must be solely yours.

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