Reflex Sympathetic Distrophy

...anyone else suffered?

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22/05/2010 at 10:11

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.

22/05/2010 at 10:23

((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 ?

22/05/2010 at 10:43

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

LIVERBIRD    pirate
22/05/2010 at 11:46

Blimey Nick! Just been reading about it.

((Hugs))

22/05/2010 at 12:07

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.

22/05/2010 at 12:33
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 ).
22/05/2010 at 12:48

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

22/05/2010 at 13:31
What input are you getting for the RSD?
22/05/2010 at 13:51

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.

22/05/2010 at 18:58

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

22/05/2010 at 20:11

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

22/05/2010 at 21:22

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.

Ultra AJH    pirate
22/05/2010 at 21:39
I don't have any advice but I do hope you can get some useful stuff from the referal, cos it sounds nasty :-/
22/05/2010 at 22:37
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

22/05/2010 at 22:51

Bloody hell.

I've just been reading about this too. Sounds depressing.

I know what it's like to be plagued with injury so empathise with your pain. I hope you recover soon.

23/05/2010 at 09:38

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.

seren nos yn canu    pirate
23/05/2010 at 09:45

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

xxx

23/05/2010 at 10:37

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....

LIVERBIRD    pirate
23/05/2010 at 17:29

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

Basil Brush Mk II    pirate
23/05/2010 at 20:15

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?

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