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May 04, 2015 11:53 PM

Hello I have been suffering from complex regional pain syndrome for over 6 years.. its hard no one understands. People just stare because i cannot walk like most people nerve damage has taken over my life and the pain is unbearable but am only 25. At the age of 18 I awoke from a colma to realize i could not stand they said it would come back.. it never did.

May 05, 2015 12:08 AM

Triquetra I don't CRPS but I have Syringomyelia, Syrinx, Fibromyagia, Osteoarthritis and development other health problems. I understand about having trouble walking, some days I have problems with my legs and back working right. Don't give up , this is a wonderful site to be on there are Christian people who are compassionate and will talk to you, many may have your diagnosis, or have other diagnosis, I have Syringomyelia, Syrinx, Fibromyagia, Osteoarthritis and several health problems. If you need to talk to someone or want to rant and rave go right ahead no one will think less of you. Everyone of us has probably done the same thing. No one will judge or find fault with you. We are all here to support each other, the to help each other. I feel like we are all a second family. Will keep you in my prayers.

May 05, 2015 12:16 AM

Thank you its hard to talk to anyone i dont know why ... alot of ppl see my condition as less than it is too much of my foot and leg has been eaten away cannot stand or walk. They have no real answers for me just shove meds in my face. I do get around on a knee walker which does have its thrills but between the pain.. the guilt.. the shame and confusion i feel like alice going down a rabbit hole but no one can tell me where i will end up. Its not likely i will ever walk again. Its a hard pill to swallow.

May 05, 2015 12:28 AM

I'm sorry you're having to go through this.
I too have crps.
I'm 14, and relate to the guilt and fear.
I am lucky because my dad is intense about research, and helped the progression slow down.
I stopped being able to walk, and it was one of the scariest things I've ever faced.
I'm now in physical therapy, I keep pushing through days.
I'm weak and exhausted by the 2 hours I spend at school each day.
Do you know what caused your crps?
Mine started in the wrists, but the legs are much worse.
I'm not a doctor, but has anyone considered Low Dose Naltrexone as a treatment.
If certain meds help a lot,it might not be a good idea because it can block some.
I don't know how it started.
Good luck.

May 05, 2015 12:37 AM

I was in a cola for double. Phneumonia i was only 18 woke weeks later to sevete nerve damage that quickly turned into foot drop and crps in my left foot and leg. Its good to know i am not the only one that was too young to be going through all we did and do. I cannot imagine what it would be like at only 15 my heart goes out to you.

May 05, 2015 12:44 AM

I guess I'm just wishing you best of luck finding something that helps.
I'm getting better, going to physical therapy at the children's hospital.
I haven't heard of a similar program for adults, unless they put it together on their own.
There is physical therapy, but I've heard a lot of stories about crps getting worse instead of better.
Good luck!

May 05, 2015 12:48 AM

Yeah physical therapy doesn't help but so much alot of the damage cannot be reversed. I mostly go for my sciatic nerve in my left hip.

Jul 05, 2016 7:18 PM

Heya Triquetra. I developed CRPS in my right knee when I was 16. Sinvr then it has spread a lot and pretty much thr whole of my body below mu wsidt is riddled with CRPS I Diagnosed'

Jul 05, 2016 7:22 PM

I am now 40 omg! I totally understand what you're saying about no one understanding. Right now I am crying with pain and I am finding it hard to talk. I posted a post on a topic called'New Here CRPS Diagnosed'

Jul 05, 2016 7:23 PM

I have tried to copy it into here but I can't figure out how to do so. Please could you read it if you can find it? I am really sorry to be a pain x

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