Anyone with crps/rsd

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8 years 4 months ago #11982 by katiek
Anyone with crps/rsd was created by katiek
Hi

I was just wondering if anyone else here had crps/rsd. If so it would be great to hear about your experiences

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8 years 4 months ago #11983 by BIY
Replied by BIY on topic Anyone with crps/rsd
I would also like to know if the sensation like cold water running through your feet with a simultaneous sort of burning sensation is anything do do with the early signs of CRPS or is this cold water thing just another progression in the neuropathic pain in my legs? What did the symptoms feel like when you first got CRPS?

Fee

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8 years 4 months ago #11992 by Mary
Replied by Mary on topic Anyone with crps/rsd
Hi Fee,

I am obviously no expert, but I think with CRPS that you usually get swelling and skin colour changes when limbs are involved. The sensations that you describe could be either, but since CP often involves a totally out of whack nervous system, I suspect that you can get that sensation with either.

One of my funny things is that I can get into bed and be quite relaxed if my pain levels are not too bad. I might be reading or watching a movie on my phone, when all of a sudden I am convinced that something is crawling on my leg. I used to spring out of bed and examine the whole bed to make sure that there wasn't a spider in there. LOL. Now, I have trained myself to wait a short time and if the sensation stays in the same place, I assume that it is just the neuropathy acting up as I settle down. I am still waiting for the one time that I am wrong and I get bitten by a white tail spider or something :)

Mary

Not every day is a good day, but there is good in every day.

"“It’s delightful when your imaginations come true, isn’t it?” ― L.M. Montgomery, Anne of Green Gables

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8 years 4 months ago #12000 by titan55
Replied by titan55 on topic Anyone with crps/rsd
hi katiek.this may not help you much but i ended up with rsd in my right hand and wrist years ago when i was working in a department store.it was punching hard on keyboards all day long that did it.all i remember was it was very painful and it felt like it was burning too.i thought it would never go.i did wear a special bandage on it for ages.i have to admit lately,i feel like it is coming back in my right and left lower arms and wrists and hands.hope you find someone who has some helpful information for you.take care.

chronic migraines and headaches for over 25 years.
intercystitial cystitis.
chronic facial pain due to allergies
irratable bowel syndrome
chronic upper tummy pain
fibromyalgia
depression

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8 years 4 months ago #12018 by katiek
Replied by katiek on topic Anyone with crps/rsd
Hi
Thanks for the replies. Fee I think what you are experiencing is probably part of the neuropathy but it is always worth talking to your dr about new symptoms. With crps there are some physical charactristics you will have aside from the pain these are
increased skin sensitivity
changes in skin temperature: warmer or cooler compared to the opposite extremity
changes in skin color: often blotchy, purple, pale, or red
changes in skin texture: shiny and thin, and sometimes excessively sweaty
changes in nail and hair growth patterns
swelling and stiffness in affected joints
motor disability, with decreased ability to move the affected body part
Generally if you don't have these symptoms along side the other pain symptoms of the disease it is probably unlikely you have it which is a good thing There is a lot of information online about the condition , from what I understand there are a few simularities with both conditions but as they are both neurological that is to be expected.
In terms of how the symptoms felt when I was first diagnosed I can;t really remeber as I was 7 years old. But my mum told me that before I was diagnosed I would always say that my leg was on fire. Hopefully you get some answers

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8 years 4 months ago #12114 by Aetherone
Replied by Aetherone on topic Anyone with crps/rsd

katiek wrote: I was just wondering if anyone else here had crps/rsd. If so it would be great to hear about your experiences

It's a right royal sonofabitch syndrome that first eats your body and then your life. I've lost count of the days where if you'd offered to shoot me in the head, I'd have thanked you profusely and lined my skull up with the muzzle. The pain is so acute, so unrelenting and so unbelievably intense that actually setting yourself on fire for real hurts less.

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