CRPS and My Virtual World

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6 years 7 months ago #20096 by Josie
Replied by Josie on topic CRPS and My Virtual World
Hi Johnno
Thanks for that, you are absolutely right about the drugs but I do not take drugs apart from 1 Endept at night 10mg so I cant really blame that. I apologize for writing such an ambiguous sentence; what I really meant was when I was hooked up to the Ketamine infusion and I asked what dosage I was on I did not comprehend the explanation of dosage strengths fully, as this drug has some powerful side effects including a fuzzy memory at the time I had an excuse for this.

However Johnno pain alone can definitely affect our ability to concentrate and I do appreciate your words of support. I have in the past trialed Lyrica and Epliem and other similar drugs, each drug separately of course for about 4 - 6 months periods, the side effects were hard to deal and these drugs did nothing for my pain, I changed specialists and was told to stop them as he considered they were of no use to me, I agreed of course, this then led to my spinal cord stimulator which has improved my quality of life thankfully. OH and at the time I was on Lyrica I was doing some paid computer program bookkeeping at home for a company-you can imagine how hard that was! so I can relate to your struggles at work.
all the best
Josie

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6 years 7 months ago #20097 by Mrs S
Replied by Mrs S on topic CRPS and My Virtual World
Hello,
just wanted to let you all know that APMA is currently looking for people who suffer from CRPS to participate in a study, in regards to pain, treatment and the effect this difficult condition has had on your lives.
m.facebook.com/story.php?story_fbid=7613...4&id=223536391023779

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6 years 7 months ago #20099 by Josie
Replied by Josie on topic CRPS and My Virtual World
Fantastic, thanks for the information , I have sent of an expression of interest.
Josie

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6 years 7 months ago #20104 by Mrs S
Replied by Mrs S on topic CRPS and My Virtual World
Your're very welcome Josie.
I am sure you and others who suffer with this little understood condition will be able to give them the firsthand knowledge which will help them to understand better the impact this has on your daily lives and this can only bring positive changes.
Cheers

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6 years 6 months ago #20272 by Rosie
Replied by Rosie on topic CRPS and My Virtual World
Hi everyone,
This is Rosie. I haven't been on for a while because of my health and changing medications. Nothing is helping a lot yet but I have my fingers crossed.
My GP encouraged me to go on the disability support pension, so I decided I would. I had to go through a fair amount of paperwork, but I managed. My application was accepted which has been a great help with my medications. My husband is in the process of applying to be my carer so we'll see how that goes.
I recently attended a pain clinic, which did not specialise in crps. The doctor did a thorough examination and confirmed my diagnosis...which I didn't need..He then proceeded to tell me they wouldn't change my current medications, but offered me physio....I left feeling disappointed.......My GP said this wasn't right, that he's expecting help with pain such as infusions..I'm now on the waiting list for another pain clinic..hopefully the wait won't be too long.
Well I hope everyone is doing well.
Take care,
Rosie

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6 years 6 months ago #20274 by Mrs S
Replied by Mrs S on topic CRPS and My Virtual World
Hi Rose, i hope that the change of medications will soon start improving life for you. And it is a positive that you were able to get the disability pension and reduce your medication costs.
I hope that the next pain clinic is more helpful in addressing your needs and that it wont take long to get into it.
Take care and good luck

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