[Geordie]

Hi ive not posted much on here but would like some thoughts please.I will keep it as short as i can.
well to cut a long story short i had an accident just over a year ago where both hands swelled up and formed small blisters on my hands at the local hospital they smeared them in petroleum jelly and bandaged them up and told my to keep covering in petroleum jelly after 10 days they didnt seem too bad so i went back to work.After 2 days work my hands were red/purple the size of boxing gloves.I was given antihistamine tablets to take and hydrocortisone cream to rub on.None of this helped me.
I then saw a Dermatologist who done skin patch testing and it showed no allergies.Next step was a neurologist who tested my reflexes they were ok, he looked at my hands and could see a definite line on both hands where the colour changed.He also done pin prick tests down both arms to hands and there was about 6 inches on both forearms where i could only faintly feel the pin the rest seemed ok. He reffered me to another consultant for nerve conduction studies. They were all ok
In the meantime i was given gabapentin and could take upto 3600mg i was also given Amitriptyline up to 60mg this just zombied me out so my gp tried me on pregabalin but they made me feel awfull so back to gabapentin then carbamazipine was thrown in the mix and then another called xeristar i feel im taking these tablets for little relief but afraid to stop them as i dont know if pain would worsen.
my symptoms started with an intense itch and very hot and sensitive fingertips that has over time progressed to burning hands very sensitive to touch running water air freshners aerosol sprays all agitate them as well as heat/cold but they dont swell up as much or often as they did i also have a numbness starting to creep up both forearms and tend to have my hands in a closed position although not intentionally as to protect them family members picked up on this.
lastly my short term memory is getting slowly worse i feel agitated almost angry. a lot more than i ever have and a band like feeling around my head. Im not sure if some of this is the meds or what. They now sending me back to a Dermatologist im so confused and low at the minute which is totally out of character for me.
One consultant has said either Erythromialgia / Rsd or akin whats your thoughts please?

ps; ive typed all this with my thumb and it sure aches now lol

Take care G

[catra121]

I think it could possibly be RSD...there are certainly many of the symptoms there. If there is a suspicion of RSD then I would try to find either a pain management doctor or neurologist (or both) in your area who specialize in RSD. They will be able to hopefully offer you more treatment options and give a stronger opinion about whether they think it is RSD or if it is something else. Many doctors will claim they have experience with RSD but they really don't...so you need to be cautious and ask a lot of questions like how many patients they have treated with RSD, question why they think it is or is not RSD, etc. Depending on the answers to these questions you can often get a feel for if they know what they are talking about or not based on whether they throw out any red flags. In my opinion there are certain ones that you see fairly often like (and these are all wrong btw):

1. They say RSD doesn't spread.
2. They say they have "cured" patients with RSD.
3. They say RSD can only be in a hand or foot.
4. They say it is all in your head.
5. They are not respectful of your sensitivity to touch or the things you tell them.
6. They do not answer your questions or don't want to sit through them.
7. They say RSD doesn't exist.
8. They advise you to immobilize or ice the RSD areas.

These are all signs (and there are probably many others but these are all ones I have personally run into) that this is just not the right doctor and you should run. They may be very good physicians...but they are not the right people to either diagnose or treat a patient with RSD. The wrong person treating RSD can cause a patient who has it serious, permanent damage because of their lack of knowledge.

I can't say whether you do or don't have RSD...but you COULD. And if one consultant suspects it then it's worth getting it checked out by someone who knows what they are talking about. Catching and treating it early is the best chance for remission (which is the closest thing to a "cure" we have at the moment).

[Geordie]

Thanks for the reply Catra I have seen two neurologists and I'm now being referred back to a dermatologist.Im in the uk and basically you just have to go where your Gp or a consultant send you unless you pay to go private so it's a lottery really.
The last neurologist did say after the nerve tests not to use ice on my hands and in the report he says a skin biopsy could be done but he suspects it would be normal as he had never seen peripheral nerve damage presented in this way. As I was leaving he said to me it will get better?Im very confused and frustrated by this hole thing.
It was a skin specialist that suspects rsd or akin.i guess I will have to wait and see but it has been 14 month now with constant burning.I really don't know how some people on here that have this condition a lot worse than me cope day to day.

Take care G

[catra121]

I'm sorry to hear about what you are going through. Nothing worse than being bounced around from one doc to the next. Maybe someone in the UK can give you some advice on how to proceed so that you get the best care as quickly as possible.