CRPS and My Virtual World

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5 years 6 months ago #18370 by Wendles
Replied by Wendles on topic CRPS and My Virtual World
My CRPS is having a hissy fit at the moment because i used it to make rum balls. So new note to add to the big book of dates, symptoms, etc all that information that is needed. It is over sensitive, making me nauseous, swollen and I so don't want it touching any thing not even a breeze. But even with all that the hardest part is wearing the pressure bandage to try to get the swelling down, "oh what have you done, what did the doctor say" over and over questions like this come. How do you explain the problem that was from an injury 2 years ago and no I don't need to go to the doctor I know what to do. I actually think it is easier to not wear the bandage and cope with the pain. But they say you look so pail are you sick maybe you should stay home, but if I stayed home every time I was sick and in pain I would never leave the house. It is just too hard to explain,
"I am OK to work today"

Wendles

There is always a SMILE
in your day,
you just need to find it!

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5 years 6 months ago #18372 by Mary
Replied by Mary on topic CRPS and My Virtual World
I totally understand Wendles! CP and especially the CRPS form are impossible to explain to anyone who hasn't experienced it. And yes, if we only left the house when we weren't in pain, we would never leave!

I hope that it gets back to "normal for you" by Christmas. I think that we all hope that our pain levels will be at "normal for us" on special occasions, but it's hard to pace so that we can achieve that sometimes.

Mary

Not every day is a good day, but there is good in every day.

"“It’s delightful when your imaginations come true, isn’t it?” ― L.M. Montgomery, Anne of Green Gables

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5 years 4 months ago #18977 by Rosie
Replied by Rosie on topic CRPS and My Virtual World
Hi Josie,
It's Rosie here. I have just read your post and I can understand some of what you are going through. I hope we can be a support for each other, with our shared diagnosis.

I began having symptoms about two years ago, with my right hand becoming stiff. I initially thought I had arthritis, as my joints were stiff and swollen. Within a short amount of time, I couldn't move my fingers.
I was initially told to put a heat pack on it, which did nothing. I saw another doctor who tried me on an anti inflammatory, which had no effect either. During this time, the pain was very intense, with burning, shooting and stabbing pains. Within a few months, I began getting symptoms in my left hand too.
My GP became concerned and sent me to a rheumatologist. This was about seven months after my first symptoms.
She told me I had unusual symptoms, but she believed I had crps and I needed to see a neurologist. I had to wait months to get in and I was given no treatment.
Seeing this neurologist has been one of the hardest things I've had to deal with. I felt initially I had to convince him I really had something wrong, needing to explain in fine detail any symptoms, limitations etc. I thought I had explained myself enough until he started asking why I can't do certain things and how exactly I do other things.. I left in tears, thinking why would anyone make this up...
The next time I saw him, he seemed better, and started me on Lyrica and Endep and he seemed hopeful this should help.

A few months later I saw him and said that not only had the medication not helped with my pain or symptoms, that I felt I was getting similar burning, shooting pains in my feet. He became very unhappy, stating he thought I had crps but now he didn't know. He wouldn't look at my feet..he painfully forced my hand in to a fist position and said," there you go, you can make a fist"...He then said if the meds aren't working, then stop having them, offering no alternative.... I was really upset...
I went back to my GP and he sent me to my current pain specialist. She said I had obvious crps in my first visit, which in a strange way, was a relief.....
My crps is now throughout my body.
She has me on gabapentin and clonidine. I'm not seeing results but I'm hoping once I get in to the pain clinic, I will have more treatment options given to me.
I think I'm still getting my head around things and over do things a lot. I do occasionally get upset but pull myself out of it. I guess it just takes time to adapt to how things are now, as opposed to how they used to be.
I'm looking forward to chatting with others on this site.
Take care,
Rosie.
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5 years 4 months ago #18984 by Josie
Replied by Josie on topic CRPS and My Virtual World
Hi Clarissa

So sorry I somehow missed your post which you wrote over a month ago, December and up until now was so busy and I did not keep up with everything I wanted to. Anyway thank you for your warm response. I am up and down like a yo yo at present, summer is a time when I listen to others stories of trips to the beach and other summer activities, I feel the emotional pain of being different and being so restricted much more acutely in summer. Sure I accept things have changed and I am not the person I used to be but it doesn't stop the feelings. I try to acknowledge them and that helps.

How are you doing? Are you seeing a pain management specialist? If you have time I would be interested to hear more about your crps journey to date.

Best wishes
Josie
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5 years 4 months ago #18985 by Josie
Replied by Josie on topic CRPS and My Virtual World
Hi Wendles
I have been re reading posts in this topic I started and have missed a few. Anyway how are you doing at the moment?
I just replied to Clarissa so maybe read that post if you have time.

My foot is always swollen but worse in summer. Just had a pain flare on Friday, nocked me off balance for 24 hours, felt stunned after 6 hours of severe pain, you know tears and all that but I work hard at not staying down for too long, it is better in the long run but takes a huge effort.
Have you had any ideas for 2014 ? I know you are on a quest to find a new direction in life with your crps so I am just touching base and wondering if I can help.

Best wishes
Josie

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5 years 4 months ago #18986 by Josie
Replied by Josie on topic CRPS and My Virtual World
Hi Rosie
How lovely to learn more about you. I gather your crps did not have a known precipitating injury? I have read it can happen out of the blue but never met anyone online where this is the case. This of course certainly would have made it harder to get a diagnosis and help although I went through similar experiences before diagnosis of not being believed, utter frustration and humiliation. Oh that doctor who squeezed your hand- grrrr it makes my blood boil just thinking about it.

It certainly takes time to adapt to how our lives have changed in ways we could never have imagined. I have now given myself permission to have a good cry when I have a bad pain flare and feel physically exhausted by it. The crying is a necessary release valve but as I said in one of my replies tonight I make a huge effort to pull up from feeling so down as it is not where I want to be and serves no purpose if prolonged. However I guess we need to remember that depression can be part of crps and CP so we need to be mindful to get help if it becomes prolonged.

I'm so sorry the crps has spread, you mention a pain clinic, is this a pain management clinic that might offer you a course or more treatment options than your present PM specialist? I have learnt from experience that not all pain managements specialists are experts in neuropathic pain and cps. I am assuming you will be seeing a new pain management ( PM) specialist. Anyway it sounds very positive because there are a lot of other treatments apart from medication which does not always help at all.

Pacing is important as most people here know only too well because the mistake we all make when we feel a bit better we do too much and forget to pace our activities . The consequence is more pain or a pain flare!

Well enough from me. I look forward to hearing more from you.

Best wishes
Josie
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