Anyone with crps/rsd

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8 years 4 months ago #12126 by BIY
Replied by BIY on topic Anyone with crps/rsd
Hugs to you Atherone and Katiek....very gentle ones that is. CRPS sounds very painful and debilitating.

Sending you lots of empathy vibes,

Fee xo

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8 years 3 weeks ago #15481 by vicgirl
Replied by vicgirl on topic Anyone with crps/rsd
New to the revamped board, though I do recognise some 'faces' :)

I've had CRPS since a knee injury/surgery aged 14. Now 28 with 'systemic' CRPS.

Fee, I know your question is a few months old now, but I think any prolonged chronic pain process - especially a neuropathic one - will start to create odd sensations. The diagnostic criteria stuff with CRPS relies upon you fitting x number of things to make up a visual picture, as well as the intense pain - usually also a history of some kind of injury or trigger event - e.g. stroke can cause CRPS in some people.

Aetherone's fingers/nails...are a good picture there. My hands and arms hurt but don't look too bad these days - but my legs are that same deep red, toenails have fallen off, legs are covered in sores and so on.

It's a brutal disease for sure.

Laura

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8 years 3 weeks ago #15484 by kebsa
Replied by kebsa on topic Anyone with crps/rsd
i really feel for you, neuropathic pain is pretty awful full stop but CRPS?RSD is trully wretched. Its one of the things they queried me when my leg problems became severe yrs ago ( i have had that leg amputated a long time ago now) i had some of the features, the skin color changes and my lower leg would sweat allot but i did not have all the changes. I think what really scared me about the idea of CRPS was the fact that it can spread to other limbs which i take it is what has happened to you when you refer to systemic CRPS. it must have been hard learning to deal with severe chronic pain as a teenager - having a condition as unusal as CRPS in you teen yrs could have been mis read by some doctors as teenage attention seeking - did you have any of those kind of issues or dd you have sympathetic and supportive doctors who took you seriously??

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8 years 3 weeks ago #15488 by vicgirl
Replied by vicgirl on topic Anyone with crps/rsd
Hi Kebsa...you're right that any neuropathic pain is the pits.

'systemic CRPS' - I have extensive spread, and also a fair amount of autonomic dysfunction - orthostatic issues, can't regulate body temp, gastroparesis, just for a start. I've got a query Ehlers Danlos diagnosis as well - but all the autonomic issues have appeared as the CRPS has become more severe.

Teenage attention seeking - you've got it in one! Mine was triggered by a minor knee injury and/or the subsequent arthroscopy. My surgeon told us that I was an hysterical teen, attention seeking, malingering...eventually that I was mentally ill and the only help he could offer was a psychiatric referral! I hurt my knee again when I was 20, this time found a good and compassionate surgeon who - when the CRPS got a lot worse after surgery - immediately recognised it and got me in with a pain management doctor. Fortunately from that point I've never had a problem with my own doctors...I do my research, I stand up for myself and give as good as I get when needed...and the result is that I have a great team who I quite literally owe my life to :)

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8 years 2 weeks ago #15530 by Punk265
Replied by Punk265 on topic Anyone with crps/rsd
Hi,

I have recently had the CRPS term thrown around loosely due to my ongoing nerve issues & the secondary symptoms I have - such as the colour/heat/swelling/pain in my limb, however have not discussed it in depth with any of my treating dr's/specialists yet. I posted earlier tonight to another forum category asking if anyone had used the 'mirror box' treatment with physio's before, as my new physio is going to start that on my next appointment, she's indicated it has been used to successfully treat CRPS, so was just interested?!

Peripheral neuropathy/CRPS/Chronic pain

Keep ticking off the attainable by focussing on the 'Can' rather than the 'Can not' in your day.

It is what it is, tomorrow's a brand new day.

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8 years 2 weeks ago #15531 by kebsa
Replied by kebsa on topic Anyone with crps/rsd
hi punk265

i have a number of different problems, i have the Ms related stuff and i mentioned the leg injury that started my problems over 30 yrs ago nw. that lag injury lead to countless surgeries and the chronic pain problems i mentioned and eventualy i got so desperate that i agreed to amputation. i was still left with a lot of the chronic pain stuff after the amputation, they started to speak of central nervous system wind up. But on top of all this after the amputation i also had phantom pain- pantom pain ranges from mild sensation that is not pain ful at all just odd! to really really horrific nerve pain- sometiems it will be the senasation of the limb be contorted into a really painful position that you cannot change other times it will be horrendous elctric chocks- that is the type i still get mainly- every now and then, usually at night for a few hours this invisible cattl prod will kep inducing massive elctric shocks that make me yelp and make my poor littl dog hide in the next room! but when people get the other type of phantom pain where it feels like the limb is twisted or being pulled into really painful positions, they sometimes use the mirro box to help - i have heard of good reports from it but have not heard of it with CRPS, that is and interesting thought.

one example i know of was a frinds husband who had hisarm and shoulder amputated because he had bone cancer in the shoulder joint. when he was taken to surgery and was being sedated e said he remebered themfolding his arm across his chest and tucking it in with a sheet- that was his last memory - after surgery when he was recovering he started having dreadful phantom pain- he always felt his arm was twistedup tight and clamed tight across his chest- with his fist clenched so tight his finger nails were digging in- it was driving him nts. he had misrrow box therapy for a while and he did say it was helping- the phantom arm was loosening and fading a bit and while he was actually using the mirrow box he was not aware of phantom sensation. unfortunately i don't know how well it would have worked long term as he got sicker as the cancer had spread to his lungs and brain so he passed away not long after - it definately did seem to help though. apparently it is supposed to help re map nerve pathways that have become confused.interstingly with phantom pain they have found that the phantom limb is often felt in what ever position it was in just prior to amputation. with my phantom limb, most of the time i have this vague feeling of half my foot comming out of the end of my stump at knee height- i don
t fell the shin at all. The CNS is a stranghe thing and i am sure there is a hell of a lot m ore they have to learn but based on what i have seen with mirror bx, ifit is offered, give it a try! its painless, simple and it definately helped my frinds hubby!

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