CRPS, Complex Regional Pain Syndrome

[Stephiefairy]

has anyone here suffered from crps? i had what we thought was a broken foot.. but it seems that the dr now thinks its crps.. the pain is unreal.. way worse then my dislocations and just all the time.. constant burning.. being refferred back to see my rheumatologist for an asap appointment..

i dont want any more diagnosies.. i have enough already!

[Beth]

Yes, my daughter had a very similar situation this fall. Her ankle rolled in the shower and popped - the MRI finally showed micro fractures and the beginning of RDS/ CRPS. She said it was nothing like the usual pain from sprains and dislocations. We got very lucky by catching it quickly and immediately starting the desensitization process. She is fine now but I think we dodged a bullet,to be honest.

She was coincidentally starting water therapy and they did desensitization in the pool - rubbing her foot on a rough step. At home we rubbed her foot with a very soft wash cloth, gently at first then firmer as she could stand it. We also had a tub of rice that she scrunched her foot around in several times a day and we also poured the rice over her foot. She very quickly got better and it was not a problem any longer but I think that is very unusual.

If it is CRPS that you are dealing with, desensitization is the key and the quicker you do it, the better. We had concerns about the micro fractures and weight bearing (one desensitization technique is rubbing your foot on rough carpet) so if you do have a fracture, that needs to be taken into consideration. But you can start with gently rubbing your foot with silk or a feather or other very soft material. Dried rice and beans poured over your foot would be good also. The goal would be to be able to rub your foot with a brush. Step by step, increase the roughness until you get to that point.

If you have CRPS, you have my sympathy - I understand it is like having your limb filled with gas and set on fire. Excruciating is an understatement! But there is treatment that can help and it is easy to do and effective, particularly when it is done early!

Good luck and I hope your foot gets better ASAP!

Beth

[Sea Dew Princess]

I have CRPS following a calf tear which left my foot, ankle & lower leg in pain for many months & is still not better. I have just started some specialist physio & have medication which may start to work now. Has anyone had this condition/experience & had it seen alongside hypermobility issues? I wonder if you have any tips for me?
Thank you.

[Rosie]

Hi all

Stephie, if you do a search on Complex Regional Pain Syndrome you will see that it is mentioned in several threads on the forum, and other members are dealing with this as well. It is also mentioned in the latest book by Prof Grahame, Dr Hakim and Rosemary Keer, so it may be worth having a look at that if you can.

Rosie

[Sea Dew Princess]

Thank you, that's helpful. I will look further.

[andreak]

My daughter has CRPS which started in 2007 after an ankle sprain and spread to her arm after a fall. She ended up in a wheelchair for a year and went through GOSH rehab.
As a parent it was really hard to see some of the things she had to do but she now accepts that she had to go to a dark place to become strong and to move forward and get on with her life. She wrote an article which was published in the British Pain Journal which I may be able to find if anyone would find it useful or it should be around on the internet somewhere.
From what I now understand having got the POTS HMS and EDS diagnosis in recent months, CRPS is more likely in HMS patients as the joints move much further than normal tolerances. Maybe thats not the case but for my daughter it certainly seems to be. Her ankle is still dystonic and she still has excruciating pain but keeping mobile and distracted has worked wonders
Im sure she would be happy to talk to anyone about her experiences and I can put you in touch if you drop me a line
Good Luck
Andrea x

[AnnaH]

I've got CRPS in my feet, due to damaged Achilles tendons that weren't diagnosed or treated in due time. I get constant burning and aching, but medication helps (Gabapentin). I believe I have the sort that can be less severe, but is long lasting, as opposed to the sort you typically get after injury or surgery. Anyway, given how much pain other CRPS people seem to be in, I seem to have got off lightly.

I think I may be gradually desensitising myself as I can now wear shoes with backs, which I couldn't for the first couple of years. And I can now touch my foot although I feel physically sick with anxiety if a doctor threatens to touch my foot, as the pain can be excruciating. But mostly I'm coping better with it and my circulation isn't too bad.