crps? neuropathy, mild cases, new problems, recent diagnosism

Just want to tell all new or mild cases (unless known info suggests otherwise), that it is essential to get to a physio as soon as possible, this should be your first port of call, i was waiting for a specialist assessment and ended up with a physio by chance, it has resolved most of the nerve type problems ( I still have some redness and swelling issues) and all the weird feelings going up my legs is almost gone, stretching and correct posture is essential. I had hardly been using my foot and it had completely tensed up.

9 Replies

  • If you have CRPS you need to question the physio thoroughly to ascertain their knowledge, the 3 things they normally use first are extremely dangerous for CRPS suffers.

    1. Ice, this will cause permanent damage to your blood vessels and I have read of 2 UK sufferers where it was so bad they developed gangrene and had to have amputations.

    2. Hot and Cold water Contrast Therapy. Again this can cause damage to the blood vessels, they had me doing it 3 times a day for 7 weeks. The result you can see white lumps in the vessels, some are blue and swollen others virtually disappeared. My heart can no longer pump blood hard enough through my hand to overcome gravity so if the hand is down it swells to 2 1/2 times normal size and up it looks like a 150 year olds shrunken and shrivelled.

    3. Aggressive Physio this can cause spreads flares and prevent the chance of remission.

    When I finally got to see a specialist he told me the physio's treatments meant I would never have the chance of remission.

  • Hi , i hadnt even considered those things as it was not an option in my case., nothing like that was mentioned, i just needed to get normal parts working again with certain exercises and get things mobile and loosened up which seemed to lessen the twinges and reduced the weird feeling thing,

    sorry you might not get remission

  • Here blooming here!

    Trust not your bog standard Physio says I.

    Coming across those in the know at the pain clinic was such a relief.

    Sorry you had such a horrific experience.

  • I'm no longer sure if some people are calling Chronic Pain Syndrome, Chronic Regional Pain Syndrome?

  • it's Complex Regional Pain Syndrome sometimes referred to by sufferers as FIIKS,

    F'ed if I know syndrome

  • You can't even trust those in Pain clinic, the doctor I saw there claimed to be an expert. Jan 2010 he gave me a series of 5 Guanethedine blocks. I later found a 1993 US paper that stated these had been found to be ineffective for CRPS sufferers especially males. I then found that 7 further studies prior to 2000 confirmed this. It wasn't until May 2012 that a UK paper stated the same thing but even today there are some in the UK still saying they should be used and that includes Arteritis UK despite me having sent them the 1993 paper and the 2012 UK Guidelines

  • Hi Tina,

    I am glad to hear about your breakthrough. In cases of mild CRPS, I am not sure I would fit into that category as whenever I have had physio, it has always been stopped due to swelling and discoloration . Let's not talk about the pain and the heat that goes through my limbs. I am very glad that something has worked for you. Thanks for any small mercies we receive.

  • Still have some ups and downs, hopefully have type that isnt long lasting, (after an injury), I had to do physio in short bursts and things felt better after, then maybe i was healing a bit in between. Am also on 23 on gabapentin so still have to try and reduce that.

    The main thing with the physio was correcting how i was using my leg and foot as that was causing one of the symptoms which was weird feelings going up my legs when ever i put the foot flat on the floor.

    Hope you get recovery at some point

  • meant to put 1800 of gabapentin!

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