Its been a very long time since I last updated this small blog, but I thought I'd update on my progress for those interested.
I was re-diagnosed with Erythromelalgia in 2012 after seeing many specialists in and around the UK, finally seeing the right doctor at King's College Hospital London (Dr Robert Hadden). I had undergone 6 x regional sympathetic nerve blocks over an 18 month period to try and stem the symptoms to no avail. I also tried most tricylic and neuropathic pain inhibitors (lyrica, amitriptylene, neurontin, gabapentin, amitriptylene transdermal gel, aspirin, prednisolone, steriods) as well as TENS machine, acupuncture, all with little or extremely low symptom improvement.
Officially it was caused by 'trauma (surgery) by an abnormality of the distal small nerve fibres in the feet and not caused by the central nervous system. Selective abnormality of ion channels or certain neurotransmitters in the feet'.
I am no longer on any pain medication as the side effects outweighed the benefits. I modified my lifestyle cycling everywhere I can; working where I don't have to walk a great deal; wearing compression socks; not drinking alcohol very much and adjusting my diet according to my triggers. By not aggravating the condition (walking too far, consuming known triggers), I am able to have a positive improvement over many years. Five years later my symptoms are greatly improved to the point where my lifestyle is 95% back to normality. The trick to improved symptoms has been to stay within my envelope of limits and not to cause flareups by known triggers. Negative symptom fluctuations over several months have been caused by me 'over doing it' on a number of occasions. By staying very fit (LOTS of cycling) and very healthy and staying within my limits I have seen my symptoms thankfully improve over a long period of time.
I hope this can encourage other Erythromelalgia sufferers as well as those with CRPS.
I would thoroughly recommend registering on the following support site which has a wealth of knowledge on EM sufferers: http://www.livingwitherythromelalgia.org/
Hey MNP,
ReplyDeleteThanks so much for writing this blog and detailing your progression, I also acquired EM after ingrown toenail surgery on my right big toe.
Are your symptoms still relatively under control?
Regards,
Chris
Hey :) my name is Lucy, I am 23 years. I just found a photo of your feet on google picture search and my feet look exactly the same. It started during a hike (Jan 2020), when the shoe was pinching my big toe (right side). As I had a problem with the toe nail for many years after a trauma, I decided to remove my nail after two months as I thought it was a reaction aggains the thick and dystrophe nail. It didn't help and some months later the left feed started to show the same symptoms, although I didnt have any traume on the left side.
ReplyDeleteI have some questions and would be really happy if you could answer me them:
Did you ever have pain independently from the "attacks"? I actually do.. not always, but sometimes, especially while standing or walking.
Did you ever undergo a skin biopsy (because of small fibre neuropathy, vasculopathien...)? I am wondering if I should do so.
Do the attacks appear especially in the morning or afternoon or night?
Did you ever try Corticosteroides?
Best regards
Lucy
Hi Lucy,
DeleteI'm not sure if MNP still monitors his blog, I would encourage you to post your questions on the forum: https://www.livingwitherythromelalgia.org/
One more question: I always read, that there is burning pain.
ReplyDeleteI actually don't suffer burning pain I would rather describe it as a feeling similar to feet that are about to burst.
Do you suffer burning pain?