RSD/CRPS

[KarenAa]

Hi everyone.. I am new to the forum .. I broke my fibula early February this year.. in moon boot for 6 weeks ..ankle was still very sore and stiff when it came off and it had set at wrong angle not 90 degrees so couldn't get foot flat to start partially weight bearing ..anyway excersise to stretch but no improvement .. and still lots of pain..I am now on week 16 ..I went back to see orthopedic 2weeks ago after nagging doc this wasn't right and been told he thinks I have rsd/crps and he'll refer me to a pain specialist .. don't think he new who to get at the time ..We'll i'm still waiting .. still googling and worried sick by what i'm reading 😔 at moment ankles stiff, not swelling as much now , but pain both sides and getting hot at night.. managing on volteron and parecetomol ..Feels like I'll never walk at this rate still on crutches

[cyberbarn]

I am sorry to hear that the break didn't heal in the right position. That must be really frustrating. Have you had some physio for it? I know that often they say to just walk, that is exercise enough, but sometimes something more formal is needed.

And don't worry about being referred to a pain clinic. It is really important to treat pain in the same way as we treat any other symptom. Pain is a condition in its own right and treating it early will stop it from getting worse and will have the best possibility to get better. Referrals can take a while though. Don't be afraid to ring the orthopaedic consultant's secretary and ask what is happening to the referral and how long it will take. If things aren't moving along do talk to your GP too.

Also it does take many weeks for the soft tissue to recover from a break, it isn't just the bone, and scare tissue can build up if you don't keep a joint moving, so keep that ankle moving!

[KarenAa in reply to cyberbarn]

Hi, thank you for your reply ..Thing

is after the moon boot came off they told me it was healing very well, it was supposedly a simple clean break ..Its never been scanned...I was worried it was taking so long for me to try and be able to put weight on it, that is when I went ydoctors probably around the 13 week mark to

say about the pains still

in my foot.. but was shocked when orthopedic came up

with the crps .. I have been to physio

3 times all you only get 30 mins.. first one really to access and then she has tried to work ankle .. even she emailed orthopaedics.. but when I last saw her I hadn't been to him .. Have another appointment this week ..

[cyberbarn in reply to KarenAa]

Hopefully now you have seen him she will have more to go on. Did you get a letter from him to show her, or can she access your records? That way she will have the full picture and will be able to give you some exercises to take home with you.

[KarenAa in reply to cyberbarn]

No.. He just wrote on a pce of paper crps/rsd for me as I'd said I'd forget by time I got home what he said he thought it was..and left it that .. said see him in four weeks.. way things are going not much will have happened two weeks passéd already

[poormother]

Hi, I can sympathise you with what it is happening to your foot. I had a nasty ankle fracture many years ago and have had 3 ops, the last one which failed left me with CRPS too. Like you it was healing fine and i was starting to walk again properly after 2 months in the moon boot. Then all of a sudden I had awful pain, stiffness, redness and could not even tolerate a sheet over my leg up to the knee. I had hot and cold sensations and increased nail and hair growth to......,aaagh. The important thing is to first get the diagnosis and then to start treatment asap. The sooner this happens the better the outcome. It was the physio who first told me I had CRPS, as they see it first, more often than not. I am now 6 years down the line, on opiates, crutches all the time and muscle wastage from this awful condition. There are those who completely recover and those who are left with problems. I had too much trauma to my ankle during surgery and My body could not cope with it. The sooner you geet sorted the better - pain clinic, physio, medication etc. They tell you to keep moving it but the pain is so intense you just don't want to! I have just had special shoes built up to allow for the fact that I have lost an inch in the muscle length. It is a devastating condition , but different people have different levels of of incapacity. Hope you continue to do well and remember to always keep on asking and pushing for the right treatment you deserve. A lot of people have not heard of this condition and there should be more awareness about it. Keep positive!

[KarenAa in reply to poormother]

Hi .. Thank you for the reply.. still no letter or call from pain specialist .. I have yet yet fully weight bared still trying on crutches but I guess without stronger painkillers I might not be able to.. I am trying to push through pain .. to make matters worse day before the appointment when he told me this, I slipped while out in rain on the crutches and stamped back on bad foot very hard crutching toes.. it feels like I broke big toe so now that's throbbing .. when mentioned about this he just said you might have no point in xraying ! which is now also making walking trickier ..I can loosen it up by trying to wLk but seems to get stiff again after a bit.. what was your first type of pain killer for this to try also

when you say hair growth .. where.. legs??sorry if that sounds stupid.im losing calf muscle as well it's got quite skinny .. so helps to get relies and advise as at moment not a lot happening from hospital

[poormother in reply to KarenAa]

Hi,...... hair growth on my toes Ha! and nails were rough and hard.... weird. My calf muscle is wasting too, so best to try and stretch your calf muscle from a sitting position. I have a splint now ( 6 years down the line) that I wear to stretch it, as as u know, if u don't walk properly then it wont be working that muscle. I started on gapanetin, which worked really well, the pain does seem to plateau after about a year in my case. It was unbearable the first 6-12 mths!. I m gradually reducing my dose now as they have unpleasant side effects. I take mst daily now which works well for me. Not being able to properly weight bear and walk puts pressure on the other leg joints.......... knee , si joints etc, try and move your ankle as much as u can ..........I do a lot sitting down, also an exercise bike or cross trainer? When I had physio, that was the machines I had to use as your not weight bearing on the bike then I progressed to the c trainer. I have a bike at home and I manage about 20 minutes every other day and I swim, which is good too. I can't walk , but can swim 20 lengths lol . Pain clinic does take a while depending where you live..............and I also attending a pain management programme. Hope some of this helps.

[KarenAa in reply to poormother]

Are you in the Uk.. I am.. I've got an exercise bike so have started to gently use that .. Not yet got to pool.. have asked and they can get me in.. will feel

funny as last time i was swimming like a fish now I can't walk yet! Only broke my ankle by walking pony to next field and foot went over in tractor rut ..and now all

this ..I'll look up gapanetin.. just when I do get prescribed I like to see what it is .. I just hope I can get on top of this quick.. How soon did you start your meds .. Ive just passed week 16 of this fibula break which was just the tip at bottom

[poormother in reply to KarenAa]

Yes I am in the UK, in South Wales actually. I started gaba within 8 weeks coz they had to prescribe it at the pain clinic, by the pain consultant. It works on neuropathic pain. I have had depression too coz of it and severe allodynia.... and so scared if anyone comes near my leg grrr. Also they use pregablin or amytryptyline ......depends on whats suits you. There is the side effect of weight gain with gabapentin grrrr. I am one cream cake short of 11 stone, when I used to be 9 and a half, hence the swimming! Get hoisted in and out and not very dignified but I don't care.