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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board

Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index

Re: Hello Everyone!
Apr 29, 2003
hello - i'm new to the boards too but have had rsd for 3 yrs. now. i'm really interested in talking with you b/c i've been diagnosed with tos too. apparantly i have tos bilateraly and the rsd is secondary to it. two out of the many docters have diagnosed me with that but when i go on the tos boards i can't relate. i feel like none of those people experience the amount of pain that i do. i consider myself as having a high pain tolerance - at least i always did - athletic always. anyway, i have the everlasting burning! before the meds. got my pain under control i wanted to die. it's horrible to say, but at 21 yrs. (when i first got the burning!) i would have rather been dead then experience the pain. anyway, i'm sure you know all this as do others, but i just feel like my rsd pain over powers every other pain i have. please write me back with any tos info. you have [quote]Originally posted by CRPS-Shaman:
[b]New to the forum but not to CRPS(RSD). I was involved in a work related injury in '97 that caused nerve damage in my neck. Within 2 months my hand and arm swelled, turned a lovely red shade and the pain and sensitivity became gruesome.

Took just under 20 doctors and close to 4 yrs to dx me so I missed that so-called 'window of opportunity' where the blocks could have put me into remission. Still, I under went several sets of blocks which showed I was still 50/50 Sympathectically Maintained Pain(SMP) but also 50% Sympathectically Independant Pain (SIP). I have retained the warmth to my hand to a good degree given the blocks were done at such a late time post injury.

I have had it spread from my injured arm to the opposite arm, to the bladder and uterus. Being a multi syndrome disease I also experience severe headaches, TMJ, TOS in both arms and the normal bouts of depression. Surgery for TOS was done prior to the dx of TOS and that lead to spreading of the above secondary sites as well as to my leg.
Have tried many, many different treatments but refuse the more invasive one at this point.

This disease has brought me to the lowest of lows I had never thought possible, and back again. There are many types of stages I found within my experience in this illness and the best help I ever found was learning all I could on this disease.

Well that's me in a nut shell. I am looking forward to meeting you all

Wishing you a pain free day



I guess we should have started a new post with this info as it does affect so many people.

I agree with both of you, Cattys and stickgirl. The problem with WC and CRPS is that the WC does not know enough about what we suffer from nor how quickly this illness changes for one single individual.

Stickgirl, when I speak of I/W I mean those that are truly injured. I know and it does sound like where you work may have this problem, where stress is high on a job people feel they can use WC as a paid break. That, in itself, is entirely a different problem than the individuals that have been dx and require tx, medication and a knowledgeable medical team to help get them back to their 'normal life.'

Too many people with CRPS are wrongly accused of malingering due to the inability to measure pain in a way where other can understand. That is, unless they have this illness.

CRPS causes a type of pain syndrome that no one wants to experience. Even with high tolerance to pain cannot forgo months into years of this type of experience.

I read a doctor's article on this subject. He spoke of being on WC and CRPS. He knew this illness has the odd good days where CRPSers feel half way normal and try to do things they normal wouldn't even thionk of doing. He warned that those are the days where WC awaits to disprove you are ill.

It maybe my way of thinking here and you are welcome to give me feedback on this but I believe that a large portion of CRPSers experience several good days in the spring and summer, while they barely get through fall and winter.

If WC tapes an individual jumping into an outdoor pool, laughing with their family, and limbing but able to walk without their use of a cane(this is just an example), the individuals claims of depression(because they were laughing), socializing(when individuals are usually isolated when sick) and walking without their cane when they said the winter before the swelling caused them to use a cane all the time. This is the type of example that causes an individual to loose their insurance when in fact WC should look at it as the individual is experiencing a good day at that particular time of the year. There is nothing that follows up that this individual spent several days recouperating from that one day of doing something fun. There is often times where the individual will not mention this to their doctor neither because they feel guilty they did this.
Fact remains if an individual can do this day in and day out it may very well get them on the path of getting better but overall that one day have nothing to do with evaluating how the individual is doing at that point in time other than having one good day.

Cattys, there is a stasts sheet done on CRPSers showing that even those that return to part time work eventually cannot sustain work year in and year out. I believe (and I haven't seen a description of these individuals) that the 10% that go into remission and are able to resume a normal life with any interference of CRPS have it very minorly and caught immediately. It is also written that there are individual out there that have CRPS and think its just an old injury that irritates them sometimes. They obviously have it on a very minor level.

Cattys I do hope you are following up a law suit for wrongful dismissal. I have seen often where people have returned to pt work and slowly their wage is wittled down and they are abandoned by their employers and WC. This should not happen. WC relys on the individual being a people-pleasing personality where they do not speak up for themselves. This is where it helps to have a doctor who has experience with the WC as well and will stick up for they're patient who cannot due to the pain they are in.

I am sorry you have had to go through this. It isn't right and fairness doesn't fit into this picture when dealing with WC. To them, its black and white.

If we read the guilt ridden but honest disclosures of x-WC workers who are putting it on the net now, we can only see what people are up against. If all employer and employee knew many of the ture stories that occur to IW's they would revolt or at minimium, take out real injury insurance that would protect them in case of injury.

Stickgirl, I agree that so many abuse the very system that injured workers rely on when they need it. But WC has gone pass the 'proving or disproving' a case. What CRPSers are also going through is the lack of knowledge on the doctors, WC, and even the individual's part about CRPS. I can't express enough that educating ones self on this illness is the key to success in so many areas that effects one that gets this disease.

As I saw the example used above, had WC video taped you planting flowers they make the assuption that you are capable of doing it all the time. That isn't so in this illness. We, with CRPS, have an illness that is so unpredictable as to what one day brings that we cannot be relied upon for the basics.

I have had empty cupboards where my young children have had to do without or I have had to order food in just to feed them on those days where I couldn't get out of bed. This comes from someone who never understood the words 'I can't' I always did what needed to be done. Those words quickly invaded my daily life from having this illness. On those good days I feel I have the right to do whatever I want because of how many days(months years) its impossible to do anything and to do it without WC waiting to take a picture of that one day and say Im b.s'ing them and am a malinger. Its not right. I don't have this problem but at any point any IW can have this experience because of how this illness affects us. To me, it all seems to revolve around the lack of knowledge on this illness.

The one thing your Othro may have been correct about (remembering I don't know your case completely yet) but if you had a pinched nerve in your elbow, it may have started it all. Your experience really shows how lack of education on CRPS from those we rely upon leads to so many serious problems.

Hope you both are having a minimal pain day

:) Shaman

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