Hi. i haven't posted before, but ive reading your posts for awhile now. ive found this site to be very helpful and informative.

Ive had cprs for 5 years in march 2015, although i wasnt diagnosed until approx. jan. 2014. its in both of my hands and arms with my left side being the worse. I now fear it has spread to my left hip and ankles. My doctor doesnt feel that it could be cprs in my hip because i have not had a nerve injury there ?

I have actually learned more from this site than anywhere. The medical professionals in my area arent well informed and that leaves me lost.

I feel very alone with this condition. No one seems to know anything about it including medical, friends and family.I dont feel as alone knowing there are others that can identify with me. although i hate meeting you this way, since we are all suffering, but im glad i did.


now in addition to cprs type 2 i have atrophy, high blood pressure, severe depression, anxiety and fear it is spreading.

Any communication would be deeply appreciated.

Best of luck to you all.
Take care of yourselves

hi Tammy and welcome. i'm so sorry you have rsd and that it is spreading. unfortunately, not all drs know the facts of rsd and say things that are not always accurate. i am not a dr, but have had rsd for four years come this Feb. rsd can spread to any part of the body. you don't need to have all the symptoms to have spread and you don't need to have had the initial area where the nerve injury occured.

i was told i have crps 1 which i got after breaking my wrist and being casted. i was diagnosed with rsd about four months later. although it was diagnosed earlier then you, i still have had spread to all my limbs, stomach and mouth. i have atrophy in my right hand and wrist, higher blood pressure then i used to have, severe depression and anxiety too.

if i were you i would find a dr who knows what rsd is. its not always easy but you have to do some searching. people here are very helpful as well as online sites such as rsd hope and rsdsa. the sooner you find a competent dr the sooner they can treat you so that your rsd doesn't get worse or spread.

they can treat you with different procedures such as nerve blocks and medications. i put the spinal cord stimulator on the back burner because of fear of spread and infection per my neurologist advice. but everyone who has rsd reacts differently to procedures used to manage the pain and slow down the spread. you will need to do what's right for you and in time you will learn what that is.

in addition to seeing a good pain management dr and neurologist, you may want to see a physchologist or phsychiatrist to give you meds to help deal with the depression and anxiety that rsd can cause. i see a pm dr and neurologist and physchiatrist and they work together to try to help me manage my rsd pain and depression.

i hope that you feel better soon and your rsd pain subsides and the spread stops. educate yourself as much as possible about rsd. also joining a support group like this one is a good idea too. the people here are very kind and caring and that makes a huge difference in being able to cope with rsd. i'm sending hugs you're way. take care.

PS - you may not have rsd spread but i would check with a dr who knows what rsd is to help you find out what it is. i always get several opinions on my rsd concerns before i find out what may be going on. drs are usually never 100 percent sure of what rsd symptoms are spreading or not, but the usually have a good idea and you will also know too by learning to listen to your body. i hope it isn't spread and that you can find a dr to help you manage your rsd pain and depression soon.

thank you sooooooo much for your response. i do not know anyone else with this and it is very isolating.

i dont believe im gonna find a doc around here that can help me.

i watched the dr getsons lecture and have thought about going there.
i believe there may be a place in ohio also ?

i just dont know ? also dealing with workers comp and insurance i try to do the right thing and get thing preapproved. ive tried to go places and pay out of pocket and they wouldnt take cash, go figure.

i am so thrilled to talk to someone. thank you very much.

where are you located ? anywhere near ? dont mean to be specific

I think it's important to fight the spread because you'll be doing better when it isn't spreading. But it seems as though the total amount of misery or your ability to enjoy your life aren't affected by the spread. It seems as though spread just gives you more places for pain rather than more pain.

Don't despair. It's easy to mourne the loss of your old life and to feel you'll never be happy or productive again but so long as you're fighting, trying, and looking for relief from all your problems you can still do reasonably well. Find activities and meds that work for you and try to have as muchg fun as you can while attending (but not attending) to the pain and the misery it wants to inflict. Much of the misery is caused by reacting badly.

Hang in there and best of luck. Say something if it's hurting too much. We may not be able to help in the least but we do understand. It's funny but doctors can't understand this unless they get it and even then we don't really understand and it's always a matter of coping and controlling your enviroment and your reactions to noxious stimuli.

One thing you always get here is a good ear.

Wen you're doing better the 'spread" tends to start shrinking back down.

My two cents... remember that when dealing with workers comp and insurances is stressful and makes crps worse....don't let them bully you. It's your health at stake. Take your time and answer questions health related....

Hey Tammi Jo,

I too have CRPS and have definitely felt alone, and have isolated. I ran into another baseball mom here in my town and she asked me about my injured hand that I had when our kids played ball together a few years before. I explained that I was the proud owner of CRPS and began explaining it to her when she interrupted me and told me her daughter had the same. We've remained close and fast forward are working to bring awareness of this disease to the world. Jennifer spoke with the editor of a small town newspaper about it and he ran a story about it on the front page. I live in a town of maybe 50K people. The people who have CRPS are coming out of the woodwork!

Please don't give up! There are so so many support groups out there for you.

Be well!