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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board


Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index


Hi, I would like to share with you my visit to an Orthopeadic Consultant last week. (I have rsd in both legs and both feet) I went to see this person in the hope that there was something that could be put into my shoes to 'cushion' my feet and give me a bit of comfort so that I will be able to do abit of walking well this is how it went.

Firstly he told me that there was no cure for rsd:mad:
He then referred to an ealier appointment I had in July 08 with another consultant who just looked at my feet and said its RSD and there is nothing that can be done. (To deviate just a little when i was having an infusion last month my consultant left my medical records with me, and having nothing to do for a while decided to read my notes, 95% I couldnt even decipher but one letter caught my attention it was a letter from the july meeting. The letter started Ms ........ is a 'rather hefty lady' to which i was very upset.) Any way getting back to this recent meeting the consultant said that the doctor in july was a top notch consultant who was an expert in his field to which I said 'he is in Orthopeadics but not RSD. He wasnt very happy with this comment but as far as I am concerned I was making a truthful observation.
Then he said that all that could be done for me was Physio, he asked if i had physio to which i replied yes i had and it aggrevated the rsd and was too painful to be touched so physio hands on is to aggressive to which he replied
I shall write this in capitals so you dont have to read it twice - THE TYPE OF PHYSIO I RECOMMEND IS TO HAVE A COLD COMPRESS ON YOUR FEET FOR 5 MINUTES,:eek: THEN REMOVE THAT AND HAVE YOU FEET RUBBED OVER GENTLY WITH A COTTON WOOL BALL FOR A FEW MINUTES,:eek: AFTER THIS YOU FEET NEED TO RUBBED VIGOURSLY WITH A ROUGH OBJECT FOR A FEW MINUTES.:eek::eek: THIS HE SAID WOULD STIMULATE THE NERVES AND THEY WOULD LEARN TO REACT TO THE DIFFERENT SENSATIONS IN THE SKIN AS RSD IS IN THE SKIN.:mad:
I replied to this - there are people who have had RSD for over 20/25 years and if this was the cure for RSD I am sure that everyone would now be cured.
By this time I didnt care anymore what I said as this was a total waste of time. He then said that he would refer me to the Orthotics clinic I said I thought that this was that clinic as the appointment I had was with that department he said no it wasnt and by this time I had had enough.
I tried to explain to him that I knew abit about RSD by talking to people on message boards and meeting people at research events, the fact that I was suffering with the condition and that I was under the top consultant at the Pain Management Clinic and he was the top consultant in the RSD field.

I DECLINED HIS OFFER OF PHYSIO.:mad:

I would like your comments on this saga.:dizzy:

Thanks Jools :)
[QUOTE]Firstly he told me that there was no cure for rsd:mad:[/quote]

This seems to me to be the ONLY thing he got right! It's harsh but it's the truth. There is no cure, but if you're lucky you can achieve remission. Sadly,very few people get there. Most times diagnosis and treatment comes too late to be helpful. Michelle on the board here has had great success with lidocaine infusions and I know others who have too. HBOT,Hyperbaric Oxygen Therapy, is another treatment that has helped quite a few people as well.

He's talking about desensitization therapy which can be helpful and has gotten many people to the point they won't scream or cringe for having something rest on the rsd affected area. How he suggested it be done is totally WRONG. Anything cold on the affected area is a HUGE No No!! IMO, it's as bad as ice. Cold will just make the pain go way up there. *rolls eyes* Too me....that's a case of duh...of course it will! LOL

To desensitize properly, it needs to be done slowly over time. You start with something extremely soft, such as a cotton ball. You don't do something till you scream, just a bit at a time. I'd have to look up the specifics on how often and such. I'll go hunt the info up for everyone and put it in it's own thread. Anyway, you [b]gradually[/b] work up from the softest to something slightly rougher and so on till you are more desensitized to the feel of things.

It's unfortunate as docs [b]think[/b] they know it all and try to come off as knowing "all about rsd and how to treat it" when they know nothing! PT is something a lot of people can't do as it makes things worse. It did for me! Also, when one of us says something like "I talk to people online" or whatever, docs get very upset about it and act as if you've done something wrong! Pftttt They don't know crap and who better to get the truth and compare notes with than those of us who live with it!!! :D It only makes sense to me. I think it hurts their EGOS cause they know they don't have the answers they think they do.

RSD is stressful enough, but try....I say try to just blow off dummies like him. It's not worth the increase in pain. I'm not saying don't be angry. Goodness knows I'm a walking,talking ball of anger some days, but vent it out then take a deep breath and say, there....all done, idiot gone. LOLOL It's good that you speak your mind and aren't afraid to say what you need to. Not enough docs have their patients stand up to them. Most people are scared to argue or disagree with a doc as it is. They work for us, we know what's best for us, we know how we feel, we know our bodies best, they don't.

I hope getting it out has you feeling a bit calmer now. Find a funny show and laugh till ya cry!! :D

Hugs,

Karen





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