If I Tell You This...

i have complex regional pain syndrome type 3. or stage 3, whatever. i know this due to the simple fact that i have been through at least 4 different specialists in the past year and a half. i look back over that year and think, i used to be normal, now im not. let me explain

it started out as nothing to worry about. a slight ache in my right knee. no worries right, nothing to fear about pain? i was rushed to the hospital and diagnosed with mono-arthritis. hospital put it down to that.
following weeks, went to physio to see what they thought. slipped disc in my back. ok, now im worrying. had 12 sessions to relieve the pain but to no success.
following weeks. receive letter from hospital for an appointment to see a rheumatologist or rheumatoid guy whatever. they study bones, muscles and other bodily functions. he diagnosed me with CHRONIC REGIONAL PAIN SYNDROME.
months later, had bone scan. no secure plan there, no good results. so go back to phsyio. slipped disc in m back again. by this point im tired of it all.
move to new city for better doctors. go to pain clinic. go see neurologist. i got told my legs were wasting away and still are.
see private neurologist and get told it 2 things. migraine syndrome and MOTOR SENSORY SYNDROME. now im panicking. what to do? its life time permanent.
go to a new doctor. now diagnosed with COMPLEX REGIONAL PAIN SYNDROME.
studying online, i am in stage 3 of it. wasting away legs. bad pain. and the 3rd one i dont know.

it should only be in 40-60 year olds, why me, im 19?!
all of the hard facts that ive read for treatments are the things i have been doing now for a year, but with little success.

anyone reading this that knows something to help fight it, please fan me and talk with me, im at a loss. im doing everything that ive been told by doctors, but to no prevail. HELP!!!!!
thats my story for this. i have it for good. im 19. it should only be in 40-60 year olds, why me?
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10 Responses Feb 16, 2012

hi! visit www.facebook.com/CRPSjourneys it's a great place to ask questions.

if it's warm CRPS you are still looking at possible remission. once it turns cold, IF it does, specialists consider that "chronic".. type 2 cold is the worst of the bad...

I have crps phase 1so it's not as bad as what u are going through, but I started swimming. If my leg can't handle the pressure from the water I will stretch and force myself to write the abc's with my foot to keep my leg active. I read that if u don't move it u lose it so I set out to be as active as I could be. I am sensitive to cold so sometimes the pool isn't ideal but since I started being active I have gone from 0% motion in my ankle and foot to 50%. I am 23 so I understand how much it sucks with being so young and I'm sorry u are going through what u are currently going through.

I really have nothing to say that I haven't already. You are a fighter. I admire that.

I was just diagnosed yesterday because my orthopedic surgeon "accidently" cut the major nerve that runs through my leg, I went in for ankle surgery...I am at the end of stage 1.. super healthy athlete.. had to have surgery following a 1/2 marathon I ran, so much that she ruined my leg....33 years old

Thank you... I'm in shock at this point, I trusted my dr to do her job and she couldn't even tell me what she did, she wrote it down and sent me home... I am still in a walking cast because pressure hurts, 5 mths... I also have perineal neuritis.. Hard to treat, Achilles & flexor tendonitis, edema... All because a dr cut a nerve she have never touched and now I will live with the damage... And she will go on... The pain keeps me up at night, but I am determined to not let this win.. But I will tell you this.. My insurance will pay for a massage chair that has seperate leg inserts because it provides vibration and heat which with this disease you need to remind you limb or limbs hey I'm still here... So if that helps do it.. Your dr just needs to write it as medically necessary.. And with this it is.. It saves insurance companies money in the long run.. TENS won't be effective according to my friend who is a dr once nerves are damaged they are damaged, he's military.. He said they use vibration or water therapy the most... Hopefully this helps you... I'm a fighter and this won't win over me once I digest it..:)

Water can have adverse reactions. it's supposed to act as compression, but with CRPS, some people get extra edema after water therapy which only makes it worse ?? vibrations are now too much for me, even a group of tap dancers in an auditorium... Idk, it effects everyone so differently.

Sorry to hear what happened to you. I hope this message is taken as a gift from my heart as I truly feel bad for what has happened to you. But fight it, every step of the stage--keep yourself motivated to beat this crippling disease. It is time to find a great pain management doctor who is an anesthesiologist who can catch this disease in the early stages. Also quickly get yourself in physical therapy (aqua) if possible to keep your limb moving! If you can keep this nerve disease under control, you will still control your life! I know you r in the worst imaginable pain ever described to mankind...nerve blocks, epidurals might help with the inflammation and keep u mobile. I pray you have found the right doctor and will beat your crps.

Anybody! Anyone can get CRPS/RSD at any age, but studies show that it is more common in people between the ages of 25 and 55, ...CRPS /RSD can strike at any age<br />
CRPS /RSD has been diagnosed in children as young as 2 years old.Investigators estimate that 2-5 percent of those with peripheral nerve injury.(paralysis of one side of the body),It is also theorized that certain people might be genetically predisposed to develop symptoms of RSD/CRPS after a significant or seemingly insignificant injury has been sustained.

hi i have crps and have been having fos phenytoin infusions for 9yrs now only to be told that they are stopping them this summer due to us who are in cronic pain costing the nhs to much money.how they exspect us to manage without this treatment ill never know but there again its not them that have to live with the condition.

Rsd has no age limited. I have been dealing for 2 1/2 yrs. it started out as carpol tunnel. Had cubital tunnel surgery a year later. I go for weekly stellate ganglion blocks,which is no fun. Also trigger point injections. Been waiting 4 months for approval for a spine stimulator. Meanwhile while the waiting game is still in progress. It is aggresivly spreading to my left side. Now it's in my shoulders,upper,lower back. Suffered a stroke in Sept. coming home from an injection. Trust me I know about frustration. I feel 90 most days. hands numb,and cold,some days they work,most days not. No amount of injections or pain meds,will ever take away the pain.

DAREorDARE- RSD is CRPS. Reflex Sympathetic Dystrophy was *renamed* Complex Regional Pain Syndrome. It's the same condition.

Have you tried mirror work and desensitising?! What tablets have you tried?! I have physio once a month now but I used to have it every week for a year! It is a really ****** thing to have and makes it more frustrating people nit understanding what you are going through!

I no how you feel somedays I struggle to get out of bed, I dont want to eat because the pain makes me feel sick and I dont sleep well either! How long have you been suffering? I am stage 3 as well and my joints are packing up too but you cannot let it win! I have loads of great techniques I wad taught that have really helped living with it but you need to be strong as there is no cure but there are ways to cope!

Hi I have just read your story and you said you wanted some help! I have written a story that may have some answers but if you wanna talk more I can give you my email! I am 23 and have suffered with Complex Regional Pain Syndrome for nine years now! It is very rare for under 40 year olds to get it but sadly it does happen but more importantly you are not alone!