CRPS and it's spreading quicy

It starting in my right knee after having a knee replacement and after just 4 years it's spread to my right foot and even my right shoulder and arm, hands and left knee. I have been in so much pain over the past week or so and nothing seems to help. Went to see my GP today and she said she thought I had a bug !

Oh they just don't understand us do they. I'm sure they would t like the constant pain and muscle twitching and cramping with spasms and of course to top it off there's the burning cold pain .

Like so many post on this site I am fed up, depressed. Annoyed , pissed off and of course why me !

Sleep would be great and just to be able to sit without putting my legs up so they don't swell and give me more pain.

I want to go. A ping with my kids this summer but I do t no if I can be bothered or have the strength to go.

I hope they find a cure for this terrible thing soon.

Thank you for listening to my ranting

Love you guys

5 Replies

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  • I'm so sorry you have had such a tough time - this is definitely the place to rant as we all get it. Not all the medics do tho unfortunately.

    Have you been referred to a pain clinic? Sounds like some real attention to getting your pain under control is needed. Go Ape - wow, that's a dream activity!! Whatever you do with your children I hope it brings a smile to your face and reminds you that we can still enjoy, even in a limited way.

    Hoping you have a more comfortable day,

    Very best wishes,

    Shirley

  • Hi Shirley and thank you for your reply. I have been to three different pain clinics and had a few things done but none have worked. They say they are unable to do any more for me so just take the pain meds and keep on going. Just the answer I wanted from specialists ... Then my GP wants me to come off the hydro morph as she thinks it's giving me more side effects than good results it I disagree and then take really high doses of gabapenton. I have been on large amounts before and its not fun

    Must go and take my meds and have a nice cuppa coffee.

  • Oh the meds are not fun are they - I'm on ( amongst others ) Pregabalin and Mirtazapine, both have caused weight gain which I'm struggling with as mechanically extra weight doesnt help but it's so hard 😁 Wretched side effects, but without my cocktail I can't function even in a limited way.

    We have to try and rise above tho eh? Otherwise the slide in the other direction doesn't lead to anywhere good.

    Hope you enjoy your cuppa ☕️

    Shirley

    X

  • Hey there,

    So sorry to hear your having such a rough time, I have been through all the meds and not had much success, I have been fortunate enough to have recently been implanted with a spinal stimulator for the worst of the pain (which is left shoulder and arm) but I rely on a careful regiment of heat and ice packs to help with the swelling (alternating one every hour), naproxen twice a day, omeprazole, co codamol and oramorph. I have found that fennel tea helps a bit with nerve pain, on a bad day I drink upto six cups a day -have to add two teaspoons of honey to make it drinkable though!

    You have definitely found the right place to rant and get some understanding - mine started left shoulder is now right down to fingertips, both knees, left hip and lumbar region, neck and has now shown signs of starting in my right arm, it is really hard to get docs to understand, mine were really good, they had a practice meeting and shared my diagnosis, discussed what it meant and how they could help, so unless its a temp doc filling in I don't have to go over the condition with them.

    I think the key with the pain clinics is finding a doc that specialises in crps, as the rest are not worth your time hun.

    I managed to take my daughter to Cornwall last year we stayed in my brothers dinky caravan, but was only able to do so because of my best friend who came with us, is there anyone who could help you camping with your children?

    Hope your cuppa was good,

    Amy.

  • If you want a cure then you have to be willing to fight for one. facebook.com/groups/7992470...

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