Reflex Sympathetic Distrophy

Foudn out last night that my fat leg is 'RSD'.

Anyone else had this, experiences....tips for dealing with it?

Little literarure on the subject....well there is some, but very little 'knowledge'. 

At the moment I am using a TENS machine, and trying to use the leg as much as sensibly poissible given that I have another injury in it, the exact extent of which is unknown at present.

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Comments

  • ((Nick)), I've known people with this. As you say, there's not an awful amount of knowledge about the condition as it's a relatively recent discovery. One lady I know suffered for years having been labelled a hypochondriac - even though there was obvious swelling and skin change of the affected area. I think one of the problems is that this (and the associated 'complex pain syndrome) often occurs after a relatively minor injury so no-one used to anticipate much in the way of chronic problems.

    Have you looked at the RSD support arena ?

  • nope..not looked...just been reading up about it.

    I went non-weight bearing on injured leg about 10dys ago, and this started after about 4. Its fecking painful. Will have a looksie at the support thing. Thanks. 

    Im in a tricky situation of needing to rest the injured leg, yet things i read say you need to use it to help RSD

  • Blimey Nick! Just been reading about it.

    ((Hugs))

  • ive just read some of the stories on the support group. They are horrible, and to be honest, i wish i had not read them.

    Why do they not have any positive stories?

    My head is now thinking 'what if I am unable to recover from this'. If this sticks around, I will be unable to run...ever again. That might sound melodramatic, and perhaps is, but there are some cases of this sticking around for a long time.

  • Oh dear, I'm sorry, Nick, perhaps I should have read it through before posting the link!! They said that they would not show  'emotive pictures portraying suffering' I thought the site would be fairly safe (that and the fact that it was signposted by the NHS approved site 'patient.co.uk' that I use a lot at work ).
  • no need to apologise slugsta...im probably more conscious of the negatives in the cse studies....which tended to be long term...lots of misdiagnosis (im lucky - it was identified about a week after it started) so thats good.

    Oddly I am much more worried about this than the Stress Rection/Fracture in the leg that has kicked this off!. There is an established treatment for that, whereas this seems so much more unknown/unclear

    I should get a grip and crack on with trying to treat it myself before my consulation on tue for the SR/SF

  • What input are you getting for the RSD?
  • by input if you mean drugs, then nothing, as it was only spotted yesterday afternoon.

    Seems that the best are either anti-depressants or anti-epilepsy as they work on nervous system

    If you dont mean drugs i dont know what you mean.

  • Hi Nick

    I had a similar problem pain remaining long after original injury had healed. Amitriptyline (prescribed by my GP) alleviated the pain and consequent depression. There are side effects for the first few days and it takes several weeks to work, but it was a life saver for me.

     Good luck

  • thank you WW - I have noted it and will discuss it with the consultant who I will be seeing on Tuesday.

  • Nick, I meant had you been referred to a pain specialist or someone with experience of RSD. The average GP doesn't usually see enough cases to be expert in it's management.

  • I don't have any advice but I do hope you can get some useful stuff from the referal, cos it sounds nasty :-/
  • Hi Nick

    As a physio who has previously specialised in pain management, and has also had complex regional pain syndrome (AKA RSD), I would strongly suggest sorting out a diagnosis of the underlying injury/ problem with your consultant, and getting that managed properly. I am surprised you have been given a diagnosis of RSD without a diagnosis of the other, unless they have ruled out a large number of other potential problems (in what sounds like a very short period of time). It will be difficult for you to know/ judge how much is safe/ not to do with your affected leg until this is done. To my knowledge there is still a huge degree of uncertainty regarding the reason some people develop these sorts of problems and others don't.

    Once the injury is sorted (diagnosed or treated depending on the problem), and if you still are having problems, ask for a referral to your local specialist pain team. They will be able to diagnose the CRPS/ RSD, and help with management strategies, as well as the medication if you need it - see above. You could try googling 'mirror therapy'/ 'mirror visual feedback' to get an idea of what you could try.

    Sorry for getting technical...

    Matt

  • Slugsta and Matt - perhaps i should give a potted history of whats been going on:

    • Did 100k weekend of London mara...went really well. Rested a couple of days
    • Couple of runs following week...Thu felt tightness/pain in soleus-y sort of area.
    • Fri - had some accupuncture/gentle massage as itt felt soft tissue because......
    • Sat 30 miles in 7 hours as part of friends Cotswold way in 24hours run. The above 'niggle' was always there, but not too bad, although I didnt 'like' it
    • Went to lakes for few days.....walking
    • Physio session wednesday.....as i like to deal with probs. Physio did normal checkup, also found and thought soft tissue as there were some things going on in calf. She tested for SF....no pain/reaction to positive test. Told me i could run
    • Friday.....13 miles - niggle was still there, but not too bad.
    • Sat 23 miles - niggle still there.....perhaps a little worse
    • Sun - cycled....not aware of anything. Was supposed to be racing 10k on monday, and thought i should 'test' to see whether i could run at race pace. Tested on treadmill.......stopped after seconds, leg did not feel happy.
    • Went back to physio wednesday....she diagnoses Stress Reaction....no resposne to SF tests, no tender spots on tibia (where now diffuse ache is when i run or load leg) Muscle is fine, the only other thing in that area is muscle.......(this is perhaps an oversimplification of it)I told her to watch me run so she could see how it was affecting me
    • Walked into physio - came out on crutches, non-weigt bearing for few days. No real 'pain' though...a slight ache upon standing up and going down stairs. Also had an aircast. which i began wearing
    • By Sat leg was aching....i felt cast was causing this, so stopped wearing it on Sunday.
    • Monday leg was starting to swell.....and become rather achy...(i.e. really fecking painful)
    • Go and see GP (monday) for referall to private consultant using health cover.
    • Friday - get appt for consultation through. For ths week I notice leg is swelling....istarted a thread about this....cos i was curious (i had been very strict about non-weight bearing)
    • See physio - who immediately says RSD - she has seen it before.....does some physio on it. Also notes that I found a slightly tender spot on tibia in the area of diffuse earlier pain.

    That is a very simplified version of everthing over the past few weeks.

    I should add that I have a lot of faith in my physio....she is well respected and very good. 

    On tue i intend to get a diagnosis of the Stress reaction/fracture (hopefully via bone scan)...and then deal with the RSD....as the paradox is that rest is needed for the SR/SF...yet use is needed for the RSD. I know a few osteopaths who have agreed with this. 

    As i understand it....one of the things that can trigger it off, is switch to non-weight bearing and/or being put into a cast. (as well as a minor trauma) ......

    I thnk that is about it.....blimey...need to go back to bed.

  • Nick ... just to say  i hope it can sorted soon for you...

    xxx

  • Thanks Seren...im feeling a little bit more positive today. I posted my melodramtic post yesterday after readong a couple of horrific case studeis (which is never a good idea) but also an academic article, which freaked me more so.

    Have a friend at running club give me a bit of a talking to and she had a prolapsed disc...and she is an osteopath (ironic or what...especially as she didnt spot it coming...but there was nothing to spot at first!), so was in a more serious situation than me.  Dont read the scare stories....

  • I know it won't make you better but I thought you might like this.....

    http://brandireland.files.wordpress.com/2009/02/cadbury_creme_egg.jpg

    image

  • Just a thought Nick, and obv I haven't seen or assessed you, but have you had DVT (deep vein thrombosis) ruled out? That would also fit with the history of a fat, painful leg especially in the context of enforced rest.

    If it is RSD, big sympathies. What kind of consultant are you seeing?

  • BAsil - DVT? Hmm no. That is something I have not considered though to be honest I wouldnt have known what to look for...this is all rather unknown. Ive broken things in the past/bad sprains...but have never had something like this happen as a result of staying off a leg.

    Mercifully today its not actually hurting too much.

    Im see a lower leg orthopaedic surgeon...(didnt really have a choice - there is an Olympic team doc locally, but my cover doesnt 'include' him)....really all i went to get done though is a bone scan.

  • just ahd a look at DVT symptoms...yes agree could fit. Although my leg was cooler than my good leg.

    I did think that the aircast could have been too tight.....perhasp that could have been a casue?

  • Nick - my mum has RSD - it took over 4 years to get a diagnosis! Unfortunately thats not uncommon as its a very difficult disorder to deal with and define...

    I dont imagine you will get any final answers on Tuesday (especially since orthopaedics wont deal with nerve damage specifically) but hopefully you have something more easily remedied and that you start to recover soon if possible.

    Its good news that the painkillers are working well too. 

  • Hi Nick

    Thanks for the potted history... it sounds like you have the right kind of team looking after you anyway - good luck!

    I agree that a) the NWB/ cast might have something to do with the onset of CRPS/ RSD, and that b) movement/ use is the best thing for RSD, but might aggravate everything else!

    Given the team you have, I'm sure they would have ruled out a DVT before now, but it might be worth asking, just to reassure yourself.

    Good luck again

    Matt
  • Matt - Thanks for the repsonse and associated comments. Dunno about a 'team' of people...just my fizz, and friends at the club. Dont think i warrant that many people!

     Curly - I dont expect to get anything re: RSD, as it wasnt even on the cards until late Friday....I want to know where I am at bone wise, as that will affect RSD treatment. If all ok bone wise, I can work fecking hard on getting through the RSD.

    I did search for this before starting the thread, and as far as I can tell no-one has mentioned this on RW before, so hopefully this will help to some extent if someone else happens to get it....assuming that this is what I have of course.

  • (((((((((Nick))))))))))))

    Oh matey, I've just seen this.  I hope you get it sorted soon. 

    Hang on in there and keep us updated 

  • Thanks Shims - obviously I do too.

    The most curious thing is over the past 12 days since stress resaction diagnosis - i have been resting and following physio guidance to the letter, yet things have got worse....well they 'feel' worse.

    I have my list of questions, and a potted history of the past few weeks for consultant so that will hopefully help him with assessment.

    Leg is probably about a 2 or 3 on pain scale today (0=no pain, 10=tennis ball in the nuts) which is nice. It had been I would say about a 6 or 7. Pain is such a weird thing though and very subjective....luckily ive never had anyhting REALLY bad, although a tennis ball in the nuts and getting pierced are quite high up there - both caused me to go rather dizzy. Actually warming up after really cold bike rides hurts like stink, and I have had to lie down because the room was spinning.

    Ice cream cures everything though! Not sure about Creme Eggs in this weather though LB - they'd be messy unless they were in the fridge!

  • ...course the pain of a broken heart and dashed dreams is the worst...... image
  • When are you seeing the consultant?

    ooh tennis ball in the nuts, bet that hurt. image

  • Tomorrow at 245.

    Yes it did hurt...was having a knock about a few years back on Bastille day with a french mate of mine. Went to the net.....wallop.

    I hit the deck and broke out in cold sweat....was not nice. People on neighbouring courts were laughing (as you would)...my friend was mortified, but was desperately trying not to laugh. I did say, that even though I was rather uncomfortable...I could see the funny side. I couldnt stand up for about 10 mins or so. Just curled up on the floor.

    Oh how I laughed....later in the day.

    I lost the game though cos im shit at tennis!

  • And the piercing? image

    (Hope you feel better soon though)
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