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CRPS/RSD information

What is CRPS/RSD?!

It is Complex Regional Pain Syndrome and is also known as Reflex Sympathetic Dystrophy.It is a chronic pain condition that usually starts in a limb after an innocuous injury causing pain beyond what is expected. It can spread along the limb, mirror to another limb or spread whole body; including internal organs and eyes/face.
There is no known cure but through this blog I hope to share more on what it is.

Week one after diagnosis of CRPS

The early days Posted on Sep 06, 2013 19:54

Well, here goes…i’m gonna start with the day my physiotherapist told me I definitely had CRPS. About an hour after I left his office, I started having the worst pain i’ve felt since I did the original damage in March. Not entirely sure what brought this on so I panicked and worried but due to the fact I could only get a Doctors appoinment on Wednesday. I had almost two whole days of purple foot, difficulty sleeping and constant pain. During this time I put in 30 hours at work (at least 12 hour days) which I thought would be commendable behaviour however it only resulted in people not understanding why I struggle with flights of stairs and walking 2-3 miles a day if I can put in 30 hours (most of that sat at a desk) work time. Once at the doctors appointment he asked the rather amusiong question of “How was I and was I coping ok?â€, as this was the first time anyone other than my physio had asked me this I didn’t actually know what to say, other than “struggling- how do I tell people i’m in pain if they think i’m faking it to be kicked out?â€. However I couldn’t say that cause I didn’t want to cause alarm bells to ring, so instead I said “struggling- finding it hard to keep upbeat seen as it’s getting worseâ€. To this he said that the pregabalin should help cause once i’ve got used to it again it’ll help with the pain and I would hopefully be able to do all my physio properly and possibly get off my crutches in a couple of months or so. I was ecstatic at this news, so went back to work intent on letting my boss know.

However between leaving the doctors and getting back to the main office, the pain was intent on kicking in and skewing my happiness. So I took the pregabalin I had been given. It did what it said it would do it took away the pain and turned me into a zombie. However I continued to take it until Friday when after a long, confusing day in work I collapsed in my room and slept through 27 missed calls, 3 alarms and then reawoke at 0700 hrs the next day – after 13 hours sleep. Due to this I missed my Mum’s university graduation ceremony which she was suitably upset about. I then continued to spend the weekend resting my foot (hoping for a miracle) and not taking pregabalin!

On return to work on the monday, I spoke to one of my seniors about the weekend and got no advice, apart from speak to the boss. To this I thought “screw it†and called the doctors for another appointment. Between that phone call and the following days doctors appointment, I had a meeting with my boss and welfare (army social workers type people). During this meeting I told my boss every niggle that had been affecting my performance and trying to explain what I had been told by both doctors and the physiotherapist about CRPS. I even took along factsheets I got off the website.To this I told not to look further into it than I had been told and to not think it was painful when things I know said hurt didn’t hurt initially!!! (Please bear in mind she did not read the sheets or have any prior dealings with CRPS) To this I realised it was a lost cause, however when you read below you’ll see she now thinks I am going to throw my prognosis at her every time she or anyone else tells me off for getting something wrong. I have been in varying degrees of the same pain for 6 months now, so I am coonfused why I would suddenly start using it as an excuse just because the pain actually has a name!

This I had this morning and was told pregabalin had to be taken and work would have to understand. Work have now referred me back to the senior medical officer to find out whether I have to take them and if I do then they don’t want me, but in the same token- after the week i’ve had would you want to work with them either???

The fallout…

The early days Posted on Sep 06, 2013 19:53

Well I’ve been and have been taken off pregabalin but with no alternative’s which is interesting! However as far as work goes, everything came to a head today and apart from crying like a baby for most of the day. I finally told my boss why the pain and injury has been gettting to me so much, i think she understands. I’m gonna be under constant supervision for the next month and if things don’t change I’ll get discharged. Tad disappointing from where i’m sat however at least I know where I stand now and cause people will be watching me, they’ll know i’m not messing them about on purpose (I hope!).

However onwards and upwards! I can now only do as much as I can and as lon as I smile through the pain and confusion and get my work done, they’re going to be happy. That can’t be that hard, can it???

Why is it happening????

The early days Posted on Sep 06, 2013 19:53

Ok, well it’s 5 1/2 weeks since I got diagnosed and I thought once they knew what the problem was they’d help me a bit more. I couldn’t have been more wrong – it seems until I get into the rehab unit they’re just gonna leave me to it and hope for the best. But it’s not just the pain I have to deal with anymore or the numbeness, the cold, the colour changes or the fact my foot looks alien to the rest of my body most of the time. I’ve lost my mind – I don’t mean in a depressed way (even though I did do that a few weeks ago), I can’t remember anything anymore; people’s names- forgotten as soon as I’m told it, tasks I have to do in work, appointments I make, even going to the toilet sometimes and forgetting where I move something to or put it down. Everything is shod – if I don’t think about it constantly it’s forgotten.

Also, I can’t oncentrate for any longer than an hour – if i’m doing something I can concentrate perfectly and it goes in but after that hour if it’s exactly the same thing, I’m gone – forgot what i was doing and how to do it or I can’t piece it together, everything just goes fuzzy.

Then to add to the fact i’m forgetting everything, I’ve also got pain in both wrists – nurse reckons it’s RSI, I can only hope she’s wrong in a way cause RSI usually involves damage to the nerves and 3 guesses where our lovely friend would want to visit next? Although I don’t know why i’m surprised, why let my hands be free of pain when they’re the only thing was left working perfectly. 🙁 My foots injured so shoes, walking etc are screwed; my heads messed up cause my memory’s shoddy and to top it off both my hands now hurt with use too. I’m just waiting for it to effect everywhere else- I mean hey I’m only 21 it’s not like I had dreams or anything!!!! Sorry, I know most of you are in a similar position- I just needed to let it all out cause it’d drive me insane otherwise. :-/ Now what was I supposed to be doing before i wrote this?????

First week at Headley Court

The early days Posted on Sep 06, 2013 19:52

Well after 6 months of waiting to get to Headley Court for treatment, I finally started last monday (woo hoo!!). However if you keep reading it didn’t stay woo hoo for long :-/

On monday I was led to believe that it was just an administration day, however at 0900 hrs when i first went in with the physio and my pain went sky high – I knew I was in for a rough few weeks. The physio got me to stand flat on my foot for 30 seconds and then was super cruel by getting me to put it flat on the floor and the squat forward on it (it hurt sooooo much!!!!!!!). Within like 5-10 minutes my whole lower leg was burning and aching like mad and by lunchtime and both the rehab instructor & docs had played with it my entire leg was aching.

As the day wore on my foot did ease off slightly but by the time i got to tesco that evening I was still in too much pain to limp around so had to borrow an electric buggy thing and by the time I managed to get to sleep at gone midnight I could still only sleep with my leg hanging off the bed.

When I woke on the tuesday, I was only in touch sensitive pain which was a good start. During the course of the day I did upper body weights to fill time but had 2 sessions of cyrotherapy which meant 20 mins of 2 degree celcius heat (well…cold) with alternate pressures and had a session in the hydro pool which involved moving my foot around in the water then they had me walking across the pool back and forth (which really really hurt by the way). Then after lunch I was back in physio getting more cryotherapy which once i’d had it the physio got me to walk/hobble 20 steps, which surprisingly because of the numbness (i’m not sure it’s healthy but hey) didnt feel that bad until I irritated the ball of my foot where the initial injury site had been. I then had pain from hell… till…well to be honest with everything else thats happened since it hasn’t yet stopped…

Anyhow on the wednesday I had a repeat of the tuesday, so by the end of the day my leg felt like it was being sawn off from the inside out. However luckily i’d had so many pain meds during the day that by 1630 hrs I was exhausted and fell asleep (again with my leg off the bed) and woke up 4 hrs later to my roomate asking whether i wanted food as I hadn’t eaten yet. So I had some but as I was still in agony and wasn’t quite exhausted so only fell to sleep at gone 2 in the morning.

When I then woke up on the thursday morning I was still in a degree of pain (but it was manageable by that point) so eaded of for the day hopeful. This hope then actually lasted till half 7 at night as between the drugs and a slightly warmer cryo session (7 degrees celsius) and an extra hydrotherapy session I had relativly low pain all day (probs about a level 4/5 which is normal for me) but after my drug induced nap at the end of the day for a couple of hours I woke up to my foot killing me- it felt someone had a red hot poker shoved through the inside of my leg and was doing a sawing motion with it and then a few blow torches on my foot which even though i took 2 buprenorphine the pain (although faded) was still there anough to make me not able to go to sleep which meant even though I was almost at the point of complete exhaustion it still took me till 5 am friday morning to go to sleep- which then evolved straight into nightmares that involved pain to my bad leg and the inability to run away from it cause it hurt too much (I had some sort of animal with it’s teeth wrapped all the way around- kinda like a mouth and throat full of really really sharp teeth).

When my alarm then went off at 0815 hrs – I was still extremely tired and still in pain was struggling to put my foot on the floor but went into the mornings warm up with enthusiasm (I’ve started using a sit down cross trainer machine so that the pressure can go more through my arms rather than my bad foot). After 6 minutes I had to stop and take a pain killer and then after 19 minutes (and most of that using my arms rather than my feet) I caved in and gave up as my entire leg was doing the pain version of screaming in agony. It was the worst pain i’ve felt since i ended up bed ridden and taking pregabalin back in October. I then went down to physio where she asked whether i wanted cryo, manual therapy or trying the g trainer (it’s a machine that blows up and lifts you up to take the pressure off your feet) and to that I said that as I was already at crying point pain it wouldn’t make much difference (i now realise that was a complete mistake). However, I did all 3 and after the cryo (did it last cause it numbs my foot, at least temporarily) i walked my 20 steps, but put a bit too much pressure on my injured sesamoid and had a really really sharp pain go through my foot which meant that i was in pain before the cryo wore off and then once it started to wear off I became bed ridden. Which is where I am now- bed ridden, unable to sleep and in so much pain it’s beyond. Ive taken max of my meds too; 2 buprenorphine tablets and a tablet of amitriptyline. It hurts so much!! But my physio’s answer today was, ‘the first week is always the worst but it’ll get better’.

Really people??? Will it get better or am I going to be worse off on leaving than I came here on monday last? :’-( :’-( :’-( :’-( :’-(

Week two and pains not letting up!!

The early days Posted on Sep 06, 2013 19:51

Right then on to week two! After a relaxing uneventful weekend with a cold unfortunately though. I get up ready for the week ahead and after the fact the physio’s said this might be the week I see my pain start to lower I’m pretty hopeful!
As I head to warm up i’m wondering what delicious (read painful) treats they have in store for me. Well nothing much seems to change in the world of Headley Court – I get my usual dose during the day of PT, ice and another go on the G trainer. Suffice it to say I ended that day in a lot of pain too but it got worse.

When I headed in for the tuesday I was already tender so really wasn’t looking forward to what was going to happen. I did my warm up and then went for my routine PT and ice session that then had 30 mins in a hydrotherapy pool too. So hopeful that my pain levels don’t go skyhigh when my foot goes from very cold to very warm in a matter of seconds I get into the pool, the burning starts straight away so I can tell then that it’s probably not going to get any better. Which it didn’t, after my foot and more to the point body had acclimatised a bit she started my session with squats, then moved onto heel raises and calf stretches to put the cherry on the top of my ability to handle pain by then getting me to walk two widths of the pool forwards and then repeat backwards. So if God is going to judge my silent tourettes because of the pain I was in for that session as bad I think i’m due to go to hell when I die.
Then after that my remedial instructor (physio’s assistant) decided that I was in enough pain to ease off my foot for the rest of the day- that is of course until the next day…
Although for me it got worse before wednesday even dawned as I got a migraine type headache just before dinner time which thankfully eased off after some paracetamol were taken, however it meant I went without dinner and then had to suffer my room mate having a go at me about being unhealthy and that I should eat in the cookhouse more often.

Well, on wednesday morning I got up headache free thankfully and my room mate wasn’t moaning either which was peaceful. However the joy didn’t last long as when I headed into the warm up I was delightfully told that today was going to be the same as the day before- queue plans to keep my pain to the bearest minimum, which never worked. As my physio decided if I was struggling I should hit it harder, me nor my foot agreed however and as the day wore on my pain seemed endless from that point until late on the thursday as I was put through similar torture again on thursday (Although no ice- woo hoo!!!).

Once I reached Thursday evening due to my then 4 days of solid pain I was beginning to think it would never change. It did but not for the better, the buprenorphine i’ve been taking (an opiate) has a 6-8 hour shelf life. Something i’d never really taken any notice of as usually when my pain levels grow so does my intake of the drug. However on Thursday evening I found out why to never let your painkillers wear off completely whilst awake and with no different ones in your system. As the pain that appeared out of no where was absolutely horrific compared to what I had been experiencing during the day- so all I can say is, I didn’t truly understand how much pain i’d be in day to day at the moment without pain relief.

So with Thursdays acute pain escalation you’d think i’d go into fridays sessions with more awareness, I did but the OT just told me I shouldn’t be worried about it and I should think of the foot as being pain free as it would be pain free quicker that way (does lying to yourself ever really work????) So when I came out of her session and headed for physio decided to go whole hog and was pushed in every respect
by the PT, which wouldn’t have been a problem however when I popped to the shops that evening i forgot to take extra painkillers with me, so I had te same sort of attack on friday as I had endured the night before. However this time it was helped along by another migraine type headache which took 3 hours to dislodge andon saturday when I woke again it was to find I had an even worse one which meant i felt sick, couldn’t move my head and struggled to even drink water.

So by the end of sunday I was more than thankful that week had ended and was hopeful this week was going to prove much much better!