Are there any amputees with RSD/CRPS?
 

Hi Im quite new here but have found everyone here to be so helpful. I have had CRPS for 2 1/2 years now. I was holding a horse whilst he was having dental treatment and I ended up with a damaged brachial plexus which led to CRPS, which has since spread throughout my body.

I also only have one arm - my lower right arm is missing (from birth). I wear a prosthetic limb and it operates from a band (on hook) and wire mechanism that attaches to a strap that goes round my left shoulder. Basically as I push limb forward it braces against my opposite shoulder and opens, then as I relax the bands close the hook. Having CRPS has made this more challenging to say the least.

I was just wandering if there were any other CRPS sufferers out there with missing limbs. When I read about CRPS it freaks me out to read about amputations.......:(

I try to keep positive, though some days it is so hard, sometimes too hard. My horse riding (dressage) is what keeps me going - it equates to 3 dimensional physiotherapy but far more fun :). I still have my dream of representing NZL at the London Paralympics 2012 in the Para Equestrian. I guess this dream is what keeps me going and of course the love and support from my son (8) and friends.:hug:

Hi. I don't have a missing limb but wanted to say welcome to the boards and I am sorry for all you are facing. I agree we must hold to hope. Are you under the care of pain management? Sending good thoughts and I am sorry I don't have more to suggest.

Hi Daniella
Thank you for your welcome. Yes I am on pain management - I have been through many meds from Amitryptilin to Gabbapentin, Tramadol and many more and the only meds that give any slight relief are Oxycontin. The scare is their addictive properties but without it the pain is more unbearable. I have to see a palliative specialist in the next few weeks, though Im not sure what he can offer.

But thank you again:grouphug:

something on the horizon?
 

Hi,

I recently saw an interview on the Colbert Report with the inventor of a new prosthetic arm that is being primarily provided to bilateral amputees. It doesn't look like it involves the other arm/shoulder at all. but it looks like it's currently only being tested/studied in war vets. I don't know if there's any way to get in on this, or anything similar.
(Dean Kamen
Episode: #06045)

I'm sorry that i don't have any real info. It's encouraging and inspiring to hear about what you're doing.

My understanding is many years ago it may have been a common practice for those with RSD to have their injured limbs amputated because of the severity of RSD in the limb. That practice has gone on the way side because it can spread the disease more rapidly not to mention the possibility of phantom pain on top of it all. However, I have read posts of a few people with RSD, over the past 5 or so, who stated their doctor suggested they have their infected limb amputated. These posters learned quickly to find new doctors in a hurry.

Thank you. My CRPS has spread throughout my body. Im glad to hear that the practise of amputation is no longer commonly used.

When I was younger and in the UK, I was considered to have one of those battery operated arms but then my stump (just below elbow) wasnt long enough, and the other problem was/is that being around horses, I need something quite hardy. I had a new limb made here in NZ and I have been given the parts that they use for the dairy farmers.

I have found for every bit of 'exercise' I do, I need the same amount of rest. Is frustrating at times though because on the rare occassion I sleep slightly better, I am so stiff I can barely move.

But thanks again for your thoughts and ideas :) hope is something I hold onto very tightly, its what keeps me going (plus the horses as well)

sending warm thoughts
 

have you talked with lost mary? she's another horsewoman. I've seen a few others here too. I haven't ridden for 20 years or so, but I understand; there's nothing like riding and caring for a good horse. well. maybe raising a kid, but horses are less stubborn (lol)

Thank you for the warm thoughts
 

I havent been on here long so I am still making new friends, but yes horses are just wonderful rehab animals. They are less stubborn lol and like many animals, they love unconditionally. When I go and see them, its always hard to walk up the hill to where they are but when I get there its like they, with their smell and their 'being', blocks out the pain at that time, so worth it.

I wish you all a peaceful evening.

you are amazing
 

i happened to read your thread and wanted to wish you luck in representing nzl in 2012. i cant fathom how you can bear the pain from the bands and then the riding. That is incredible.