Chronic regional Pain Syndrome (CRPS)

[macora]

I had an operation I October 2016 to remove metalwork from my right ankle - this was removed as I had been getting pain which was believed to have been caused by inflammation of a tendon due to high mileage with work (constant use of accelerator) which was then thought to be catching on screw. Due to metalwork no MRI could be done. I followed the advice and elevated my leg for all but the advised max 10 mins out of every hour for three weeks. During this time I had the occasional shooting nerve pain. I then returned to work with my high mileage. Some pain but didn't concern me. Then on the fifth day, having encountered a lot of congestion, suddenly it was like the inside of my foot had come alive with what I would describe as thousands of shooting nerve pains, this was then quickly followed by the outside of my foot feeling numb. I contacted by GP who initially said post operative nerve pain and nothing to worry about. I continued trying to work but found increasingly hard. I then had a couple of weeks off for factory shutdown and spent most of this time again with my foot elevated, but this did not seem to help much and when I drove it just set it all off again. I saw the Consultant three months after the operation, he diagnosed CRPS and referred me for Physiotherapy which I had and completed. The physio actually questioned the Consultant diagnosis as she thought I should have improved by that point. My work swapped my car for an automatic which has really responsive cruise control on steering for acceleration and deceleration and that has helped although I do still have to use my foot quite a bit of the time (below 30 mph and busy motorways), but have had a sudden flare up again. The Consultant told me that CRPS is a temporary thing, but tonight I have spent a bit of time on youtube with mainly American videos and this has led me to believe that this condition is unlikely to ever get better and in fact can progress through the body. At the moment when I am really bad, I can see that my ankle has swollen again, so it is not in my head, but I have never noticed the changing colour of skin described and this was another reason why the Physio questioned this. My foot getting cold also seems to be a trigger, but when it gets bad it feels like my foot is very cold even though it doesn't necessarily feel so to the touch, but it can also feel like it is burning. I am on Pregabalin (Lyrica 50 mg three times a day) which overall has helped me to sleep although think would struggle at mo. My Consultant said def no permanent nerve damage as 'the operation didn't go near a nerve', but that seemed odd to me as it can't have been too far from a nerve. I seem to be getting a lot of conflicting information and am feeling really worried that this isn't a temporary thing and I could become a lot worse. Can anyone else comment on if my symptoms are like theirs as I understand that not all those with CRPS have the same symptoms. Thank you

[Bananas5]

Try this info...

ninds.nih.gov/Disorders/Pat...

[Yogibe]

Hi mocora u have to types of crps and by the sounds of it u may have type 1 u need to get your gp to refer u to a pain specialist and he can tell u which one u have, I have type 2 which was through a operation and because there was a lot damage I ended up with amputations

[cyberbarn]

Where about in your ankle is this? I had surgery on my big toe and they nicked one of the branches of a nerve on the inside of my ankle just below the sticky out bone (medial malleolus). At first they said that they couldn't have damaged a nerve, they would know because my foot wouldn't move. But one of the branches of the main nerve there only does sensory things. One of my surgeons had a 'oh yeah' moment when I reminded him of this! So like you, part of my foot was cold, and the pain was bad at times, in fact just after the surgery the pain in my ankle was worse than in my toe!

If it is nerve damage, it can take a year to get back to where you will feel comfortable. It might take less time for nerves to regrow, but it can take some time for the brain to figure out what the messages they are getting from those nerve endings mean.

They might be trying to play down the possibility of CRPS because being in a state of anxiety can make that condition much worse.

Have you seen a podiatrist? I found my podiatrist was in some ways more helpful than my podiatric surgeon.

[macora in reply to cyberbarn]

The op incision was right on the outside ankle bone. Although straight after op and few months after was getting shouting nerve pains running up through this area from foot up leg, the main issues are the constant buzzing away of nerves in my foot, when it gets bad the whole foot outside and spreading up through leg the numbing sensation. Although when really bad, the pain does affect ability to sleep when it isn't really bad, I can live with it. It's certainly a weird sensation - bit like I would imagine it would feel if you kept putting your foot on live electric fence. At that lower level, I can't really call it pain as I can get on and to a degree ignore it, but when it really flares up, and it becomes numb, I feel it unsafe to even consider driving and walking you do feel very unsteady. A few people have noticed that I can limp quite badly when it's like this

[cyberbarn in reply to macora]

While my nerve was recovering I could bare to have warm water touching my foot, which made taking my son to his hydrotherapy sessions a bit interesting. As I walked along the bottom of the pool it felt like I was walking on cut glass! But I would push myself each time and do a bit more walking and a bit less hopping and swimming, and eventually my brain stopped thinking that the nerve was screaming and durned the volume down to normal.

It does sound like it might be nerve damage, but there could also be some inflammation and adhesions and scar tissue too, and as others say, keeping active and positive can help. And understanding that you need to retrain your brain to interpret the information the nerve endings are sending up in a more appropriate way. My podiatrist suggested stroking the damaged area, or rubbing some lotion in. I used to dip it in the bath for a few seconds, then a few seconds more, trying to build up the tolerance a little at a time. There is also something called nerve flossing that my podiatrist recommended that helped.

The nerves on the outside of the foot can also carry some motor information which might be why you are unsteady on your feet, and a walking stick might help with that.

[macora in reply to cyberbarn]

Thank you so much for your reply. It was the podiatrist that originally suggested the removal of screws but (OOPS HIT SOME KEY BUT CAN'T SEEM TO GET BACK TO NORMAL TYPE SO APOLOGIES, AM NOT SHOUTING) I DO THINK HE WAS RIGHT WITH THAT AS ORIGINAL ISSUE SEEMS TO HAVE GONE SO THINK WILL CALL HIM AGAIN.

[susansue]

Burningnightscrps.org is a Uk organisation that offers support for CRPS sufferers and have a wealth of info on their site which might help you. If it is CRPS, if you act quickly by exercising and ensuring you use your limb and NOT immobilising it (even if it feels more comfortable not moving it) you can do a lot to reverse the condition. Most of all keep positive and don't let it beat you x

[macora in reply to susansue]

Thankyou Susansue. I try to keep active as much as possible, it's only really when it goes to that terrible numb stage or when I feel it is apart to go as the buzzing gets so bad, that I feel unsafe to drive and also unsteady on for walking or even standing that I then chose to rest. At most 3 days has been when it gets back to that 'lower level buzz'. Do you think that perhaps I should try a walking stick to stop me from falling, but try to push with the walking? Will look at site you have suggested thank you, but just if you happen to have any similar experience. I just don't actually fancy falling over and ending up with other injuries - though have only stumbled so far and not actually fallen over

[cyberbarn]

Oppps, forgot the link to nerve flossing! epainassist.com/manual-ther...

[ITYFIALMCTT in reply to cyberbarn]

Thank you for posting that link. I'd never heard of that technique before now and it was interesting to read about it. I'm certainly going to experiment with incorporating some of those exercise variations into my usual flexibility routines.

[susansue]

My daughter has had the condition in her foot for 14 years so feel I know quite a bit about CRPS although am certainly not a medic! Be careful what you read and see on the internet, particularly US sites. I did that when my daughter first had the condition and there are a lot of scaremongerers and weirdos out there whose main aim in life is to scare you out of your wits and depress the hell out of you. As I said earlier the most supportive and positive site has been Burningnightscrps.org. There is a lot of info on there which may help you. Bath hospital are a CRPS specialist so might be worth trying to get a referral there?

My daughter went through a period of stumbling a lot so did use a crutch for some time, until she felt strong enough to manage without it so it may help if things are bad. We didn't have a diagnosis on her foot for a long time and by then the brain pathways were irreversible. She began having pain in her left hand about 5 years ago but because she knew the importance of exercise and movement at an early stage, she did loads of hand exercises as often as she could and has managed to almost reverse the condition in it so it is not as bad as the pain in her foot. Good luck x

[macora in reply to susansue]

Thank you so much. I must say I can't believe the speed and comprehensive answers people are giving me x

[Davek723]

Hi there i have full body crps after an accident and thoracic decompression.

Been 18 yrs now took four years to diagnose so thats why its in all four extremities, waiting to be checked now for its affects on my internal organs.

I have the hot cold thing with my feet and hands they are like you describe

I too manage until flair up .

The thing i found is to find your triggers

This will help reduce your flair ups.then if i do have a bad flair up mines ususlly is all over back arms legs feet , it is very important to stay calm and acknowledge that it is a flair up.

If you do as i used to do and slip into a worried state thinking omg this may be it and it may not go away , or i could be like this for the rest of my life sort of mindset i can assure you the flair up Will be worse and last longer.

I say its just a flair up i know what it is and know it will subside.

As far as im aware there is no miracle cure or pain med.

I was to late for any initial treatment so ended up on lots of heavey pain killers.

For me these only made it more difficult to be rational regards flair ups they made concentration difficult etc

So im now nearly 7 years med free.

I still have constant manageable pain

Its my believe your tolerence to pain increases over time ( you get used to it)

I still have dibilitating flair ups on thess days its about acceptance and understanding. The pain is horrendous and im totally imobile . But my brain is strong and un clouded by meds so i get by as explained above.

There are lots of techniques to learn

But you have to find the right ones and you really need to practice.and learn hoe to be patient with yourself.

Think of these techniques like learning to drive. You didnt do this in one session.

Pain groups and places like this are fab and let you know your not alone.

Here to help if yoy need me

Thanks dave

Stay strong