Saturday, 29 October 2011

First Pain Specialist Appointment

After being diagnosed with CRPS by a paediatric surgeon two months ago (and being prescribed 25mg Amitriptylene for 8 weeks); I've just seen a pain specialist who told me that it doesn't look like CRPS to him per se.  His reasoning for this diagnosis is:
  • Lack of severe hypersensitivity.
  • Skin changes to white after pressure is applied (CRPS usually stays red apparently).
  • After reaction trigger the symptoms can be alleviated by raising feet above the heart for 20 minutes. 
Armed with this, I'm now organising a bone scan (using x-ray tracers injected into the blood) and further blood tests to see if there is some kind of cellular response or trigger in the bones from an infection and/or circulatory issue.  X-Rays of the toes don't show any obvious de-calcification or damage from infection.
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5 comments:

  1. Anonymous9 July 2013 at 06:23

    Hi there,

    I have more or less exactly the same as you. I had an operation on my foot 6 yrs ago. I think, judging by your vid, that ibwas prob your age when the operation was done. Ibwas diagnosed with crps type 2 straight after as it was evident something had gone wrong. All the symptoms you describe I had. The pain used to be unbearable. I am much bettter now and I can even do sport. I still can't wear socks or tight shoes or sit normally which I guess isthe case for you. I have to keep the foot elevated basically all the time. But, I can stand which doesn't hurt anymore. RYou have to reduce alcohol consumption cause that definitely makes it worse. I have zero faith in docs now. I would say you have type II also. But i am no doctor of course. Let me know if you would like further contact.



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    Replies
    1. Anonymous6 October 2015 at 08:39

      Hi there, sorry for the VERY late reply. I set this up a long time ago and haven't updated it with my updates as I had intended. Thanks for your comment. I shall post a quick update in the next comment below this one and will update the site with my latest diagnosis and progress.

      Delete
  2. Unknown14 September 2015 at 18:48

    Hi,

    Are you still dealing with this pain? I have it very similar to you. Been told it is very mild crps. I have had it for over 4 years now, and is aggravated by exercise, stress, in the shower etc). Did you get a final diagnosis? My pain has also come and gone over the 4 years. Originally disappeared completely just on Fluoxitine. However is back now while on Gabapentin and Amitriptylene. Seems to come back after major street events...

    Interested in your feedback.

    Thanks,
    Mark

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  3. Anonymous6 October 2015 at 08:48

    Hi Mark, thanks very much for the message. I was originally told it was a form of CRPS and I eventually managed to get a diagnosis as Erythromelalgia in London. A form of sympathetic nerve damage linked to the sodium channels that control the blood vessels opening and closing. These got damaged after my routine surgery. I have had 6 x regional sympathetic nerve blocks, which did little or nothing to help and are very risky procedures. I have also tried every type of nerve numbing and blocking drug over several years, some helped a little, but others gave me intolerable side effects. I also had a genetic test done in Canada to see if I have a gene mutation that could explain my symptoms, but this came back negative. My cause is most definitely small fiber nerve damage as a result of my surgery. These days my symptoms fluctuate in waves up to 4 months long, whereby they improve and get slightly worse, but all the time in a positive improvement direction. So I have modified my lifestyle, cycle everywhere, try not to walk too far when symptoms flare up, where compression socks etc. I can now walk almost as much as I'd like to.

    Hope thats of some help!

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  4. R B13 July 2020 at 21:16

    Hi Mark,

    I have similar condition on both feet. By Sodium Channels can you provide more detail explanation. I have not had surgery. I also have the condition on both my hands. I have a thermal treatment for fungi. My blood vessels and skin may have been damage.

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