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Had pamidronate infusion at Addenbrooke last friday in an attampt to help te RSD. Ended up in L&D A7E last night. Infection right up to shoulder Dr did ultra sound which showed 5 or 6 deep vein thrombosis which they say could be fatal. Yet again after telling them not to touch right hand they just can stop themselves . Could get bllod out of rigth arm. Admitting doctor couldn't get blood out of left hand so asked if she could take it from right still had to tell her know. later she still ried to take hold of right hand.
Enough is enough I can' t face another 10 20 30 years of this so walked out and came home.
see your gp for a check up thats all ok
It,s not OK and with RSD it will ever be OK. Death is the only release, got no idea how fast these things kill. Hopefully not until next week as first grandson is due anyday. After that the sooner the better.
You really have been through it old pal and, just as it seems there is no light at the end of the tunnel, remember any life is better than no life at all. Hope springs eternal they say, so keep on fighting in the hope that one day you will be pain-free and able to draw a line under this dreadful period of your life.
All you cyber pals wish you well and offer you moral support.
International RSD Awareness Week is Nov 1-7 below is a small portion of the e-mail I have sent out to over 260 TV Radio and newspapers but please don't wait read these 2 links because one of your loved ones or friends could be suffering from this and been told it's all in the heads. This conditon could be caused by something as simple as a sprained ankle and you all need to be extremely forceful with any doctors/nurse who treat you. Please note the site is wrong on one point. The pain does not have to be constant acute 24/7 for you to have RSD.
When I first started to research RSD I tried to explain it to my wife and she compared it to cancer. There is really no comparison.
Cancer NHS spends Millions every year on Research. As far as I can find out and I may be wrong nothing is spent researching RSD.
Cancer has Charities which finance research and give support to sufferers and their families. RSD has none.
Cancer can be operated on to remove the infection. An operation in an RSD area may cause it to spread.
Cancer Treatment can give a cancer free remission lasting years. RSD treatment may give a remission which means you suffer less pain for a while but there is still pain.
Cancer at it worst will kill you. RSD at its worst will make you pray for death. According to one story, the suicide rate for people with this disease is 900% higher than for any other group of people.
Given the choice between keeping my RSD or swapping it for Terminal cancer which would kill me within a month I would not hesitate to swap as I know my suffering would end soon.
You may want to speak to your GP about your feelings as well the RSD.
I hope things improve, really improve, for you.
Oh 'ell, mate, wish there was something I could do to help through this.
Waitng for talk therapist.but that wont make the NHS Doctors and Nurses read thier own friggin website which tell about RSD/CRPS and who a patient should be reffered to.
lotvic there is read the links if I can stop one other person going through this and help them be treated better then it's worth it.
I am sure all on the forum are thinking of you and hope you find some relief.
We are not meant to give medical advice here, but there are a few points I would make. 1 Your GP is like a "broker". If you are unhapppy with the hospital or specialist you have, insist he finds you another. 2. pain relief.My wife has had excruciating back pain for years, and only after seeing a private pain relief specialist would the GP prescribe "Fentenyl" patches - they are a bit of a last resort as they are morphine based, but again I would insist your GP sends you to a Pain clinic as well - do press them on thes "Durogesic" patches. I am not a doctor, merely sharing an experience for you to discuss with your GP. I really hope you find an answer.
just read your first link, has got me a bit worried. I have similar on my right face/jaw/ear/scalp been told its result of a side effect of max dosage of verapamil [960mg] been cut down to 740mg some of symptoms eased.
but got the burning pains and the sensitive to touch, also talking,chewing,freshair set off cronic pain. found by chance eating hot chilli sauce gives half to one hour pain relief.
my conditiond looks temp as its a side effect of meds but i can imagine how you feel having this all the time, it wears you down mentally i have only had it three weeks.
please do not give it and try to fight the despair you get with constant pain.
has the dr sent you on a pain management program?
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