CRPS

Hi, I'm Sammi.

I'm 22 and I was diagnosed with crps 2 years ago. I've been on crutches since October 2014.

I have moved a lot since my diagnosis through unavoidable circumstances so my treatment is taking a long time.

I have had a lumbar sympathetic block which reduced the pain for about 4 days.

I have tried codeine, tramacet, baptized, gabapentin and now I'm on pregablin.

Until October 2016 I could hobble around the house without crutches, and the pain wasn't debilitating. I had burning pain and sharp pain caused by twitches in my leg but most of the time I could get on with most things without too much pain. I lost 11 stone because the orthopedic surgeon that diagnosed me told me to lose weight to help with the pain.

October last year I had what I thought was a flare up. I couldn't put any weight through my leg, the burning got worse, my big toe went numb, it felt like I had shards of glass in my knee if I tried to weight bare. My flare ups used to last a few minutes to a day at most. This hasn't settled down in 3 months.

I have another MRI booked and an appointment with pain management that have taken months to come through.

Reading other people's experiences of CRPS sort of makes me feel bad for saying I have it, because I'm pretty sure childbirth is worse than this, and apparently crps is worse than childbirth. It's bad but it's not a raging fire 24/7, most of the time it's just embers. Clearly a lot of people have it worse than me and it makes me feel like a bit of a fake. :-(

What gets me worst is the tiredness. I try to do as much as I can so my boyfriend doesn't realise how much pain I'm in. He has enough on his plate without having to deal with me in pain. Doing things now that used to be easy make me really tired. I could sleep for 18 hours a day if I didn't have to get up.

It's starting to wear me down. If it's never going to get better then what's the point? I'll never walk down the street holding my boyfriend's hand. I'll never climb mountains and wander through jungles. I can't even go out ferreting. Is my life housebound from now on?

2 Replies

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  • Baptized should have said Naproxen. Fat thumbs.

  • You have had the medical treatment and you have found it does not work very effectively. You going for an MRI scan. This will be useful to determine if something can be seen or not. An MRI scan will not show over contracted muscle. Over contracted muscle can be fairly painful. Over contacted muscle needs to stretched out. This is something a sports therapist or massage therapist can do.

    An orthopedic surgeon does not know very much about over contracted muscle. They cut things rather than stretch things.

    You need to find exercises which will help stretch the cover contracted muscle. These can be painful but they will reduce the pain in the long run. The stretching out of the over contracted muscle can be painful but again will reduce the pain afterwards.

    Worth seeing a chiropractor for them to see if their treatment can help. Joining a yoga class will be helpful.

    Hope this helps

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