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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board


Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index


Another Newby!
Apr 30, 2012
I was diagnosed about a year ago, by what seems to be the only doctor here in Carlisle who'd even heard of the condition, following a slip whilst lifting a box of fluids (I tried claiming I was fighting off two hulking, rugby paying, ninjas, but nobody believed me). Initial injury was a grade 2 hamstring tear. I had the usual treatment (RICE) and was encouraged to 'walk it off'. It took about six further weeks before someone (got to love physios!) noticed I'd also dislocated my knee (subluxation of my proximal tibio-fibial joint) so I'd been walking (hobbling) on a dislocated knee for six weeks. The pain initially settled but then flared and has remained ever since. Thankfully the A&E consultant who saw me, after I collapsed at my GPs (didn't that ruin my macho image?), managed to make me pass out whilst manipulating my leg and so decided I wasn't 'swinging the lead'. The usual tests followed and here we are.

I'm a 46 year old nurse (I'm sure there's a mistake on my birth certificate, I know I'm still 21) and I hadn't even heard of the condition myself. I've been through, what seems to be, the usual routine (mri, thermography, tramadol, gabapentin, physio). MRI showed a small tear in my medial meniscus and a bit of scaring, no difference on thermograohy, tramadol stopped as GP suggesting I may be an addict (????) and it wasn't helping anyway (and he still doesn't know what RSD/CRPS is), Gaba not able to tolerate and physio gave up as I couldn't be assessed due to 'guarding'.

So now I'm getting hydrotherapy with a new senior physio (who will be rewarded in heaven), been started on Amitriptyline (after her 'chat' to my GP) so far without results (two weeks and still most definitely allodyniac).

I live on my own (separated) and have managed (just, at times) on my own till now. Life has become very limited, I can't get out much (six months on crutches and now only limited mobility with a stick), obviously can't work, all my previous hobbies and interests were physical in nature, no real social contact either any more. Finally bit the bullet and admitted to myself that I do need some 'moral support'. So you all out there are it now. It's just nice to know others have been there, coped, survived and are still around.

I'll probably just lurk around picking up what I can from all the experiences you've been good enough to share. If I comment, I'll apologise now for my sense of humour it's both congenital and a coping mechanism (I've always been renowned for it, never a day goes by that someone doesn't tell me I'm full of wit - at least I think it was wit they said?).

I've already learnt a lot. Finding out that feeling weather change, concentration problems, insomnia, inability to find the right word in conversation, etc. are not just me going mad (madder?) is a relief. The thing I have found most difficult is the fact that people seeing me with a stick assume some leg injury that limits mobility but just can't seem to understand that I am in constant excruciating pain (having others describe it as 'the worst kind of chronic pain' is a boost too, I'm not as much of a wuss as I thought I was).

Surprisingly I've found distraction the best method so far in coping, music via MP3 player whilst walking helps (sometimes forget where I am and sing along. Not good although I did get asked for an encore once in the check-out queue at the supermarket), just wondering what others have experienced and your thoughts. Also 'immersion' (regular increased exposure) for the allodynia? I know with experience I can tolerate more and my perception has changed (what would have been a pin score of 10 years ago is now a copabale, if not comfortable, 4), any thoughts and experiences?

Oh, one question if anyone has any experience? I only started the Amitriptyline two weeks ago, two days ago I had an episode of dizziness, excessive perspiration , lethargy and weakness, being a nurse I visited a pharmacy and took my blood sugar. It was 2.1, so hypoglycaemic. Has anyone else faced a similar symptom and is it constant or just transitory?

Like I said, just relief and a confidence booster to know there are others out there who've been through the same.





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