Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 07-05-2007, 07:45 AM #11
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Sweetie, I am sending you the ((((hugest hugs))))!! Hang in there. That's awful!!

Lots of huggies for you,

Love ya!

Nessy
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Old 07-05-2007, 07:51 AM #12
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Dang, Frogga, that sucks! I had sooo hoped it would be a good appt.... but I wasn't holding my breath, either, lol.

You can always tell a dr. that has never experienced true pain, or hasn't had a loved one hurt this much, from one that has. It really makes ya wanna grab a pair of their forceps and pinch them where it matters most! Grrrr.

So where does that dr. get off doing the things you told him not to?!? Touching someone in a way they don't want to be touched is called "assault" here... and even drs. can go to jail for that. Here, they just put "uncooperative patient" in your chart, lol, and don't do what you ask them not to. (Or maybe that's just me... I'm pretty sure they know I am going to knock them into next week if they do something I don't want them to.)

You DO have a choice whether you see him again or not, right? I'd hate to think they'd force a dr. like that on you, but I know next to nothing about your health care system.

Have some gentle hugs and a spoon or two... I can do without them.

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Old 07-05-2007, 09:17 AM #13
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So sorry you had such a horrid time of it, Frogga. I was hoping good things for you. But, please don't give up trying to find a decent doctor. You are much too young to be going through all this. I know you are tired of all this but there really are good docs out there. So, take a mini doctor break and try again. In the meantime you will be in my thoughts. Jeannie
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Old 07-05-2007, 01:11 PM #14
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Frogga,
I'm sorry to hear of the awful day you had. I had hoped it would have gone so smoothly for you...
Wishing you better days ahead...
Big Gentle Hugs to you
Dawn
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Old 07-05-2007, 05:24 PM #15
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Hi ya Frogga! I too like, Mary was laughing at your humor there, Missy Frogga, I feel so bad for you!! Are you going to go into hospital? Please know that we all love you so much and I too hate Doctors. Your so very young to be experiencing all this darn, darn pain!!You have and still are going through so much! Some doctors are very good. Look at how all of you told me NOT to give up hope at finding a good bedside mannered pain management doctor.. and I DID! I too hate hospitals, Frogga. Ya can't sleep, they are constantly taking blood.. blah blah. But if your Doc. feels that you should be admitted, tell him ok.. but as long as he doesn't see you while in there and another good hearted doc. will see you! I love ya girl.. you take care, and please keep us informed as to what your gonna do?? I say GIT YOU ANOTHER DOC!! Love, Desi and here are lots of gentle coming your way sweetie!
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Old 07-05-2007, 06:07 PM #16
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Thanks everyone so much, I am still pretty gutted about it. At one point the Dr was trying to suggest that it might be because I was "stressed" or because my body was "upset with itself so shutting it'self down". Erm. Right. Did you actually LOOK at my scans? my thermographies? my bone scans? my x- rays? the reports from the orthopeadics, neurology, rheumatology, opthamoligist and whichever other specialists have co-ordinated my care over the last couple of years. Obviously not. This Dr also appeared to know almost nothing about RSD - yes, he said I had it, but I said it was impossible to seperate the movement issues I have - RSD makes my muscles tight and stiff and incredibly painful, dystonia makes my muscles tight and stiff and pretty painful. He asked me the stupidest questions then didn't listen to the answers.

Mary - thanks! you cheered me up, the fact that me being rude to a doctor... I got thrown out of physio after threatening to bite the physio if she ever came near me again - so she wrote to my PM dr saying that she didn't feel my pain control was adequate. I also nearly threw a plate of food at a consultants head after he went to try and touch my leg. oops!!

IHH - thanks as ever babes

Rogue - he said that he would think I had something to hide if I didn't let him, and that I was impeding his work as a doctor. Doesn't matter that he apparently knew how much pain I lived in. Also, I was having a pretty bad day when we went up there - so all that travelling plus dealing with idiots never places me in the right frame of mind for dealing with doctors and trying to explain the most complicated medical history in the entire universe. meugh. Are you ok? There were some fittish policement though

Dawn - Thankyou so much hunny xxxxxxxx

Hey Desi - Thanks as ever babes! I hate hospitals and will do anything to stay out of them - but mum wants me to go in to see if they can help or at least better identify what is going wrong with me. I am just not convinced that this will help me, but never mind.

All my love and thanks so much everyone... I'm just still so gutted over this whole thing, it's really hrd.

Love ya all

Froggsy xxxxxxxxx

Jeanie - Thanks babe! I am going to have a mini dr break before I see anyone else again, I just can't handle them at the moment!
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Old 07-05-2007, 08:03 PM #17
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At the very least if you go into the hospital you will not have to depend on your sister for anything!! No more doing without food or food you can't eat. And just maybe some Drs. there will take an interest in your case and see what might help you. I for one vote for the hospital, if it doesn't go the way you think it should, check yourself out. Whatever you decide we are here to support whatever YOU feel is best. Carose
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Old 07-06-2007, 02:50 PM #18
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Dear Frogga -

I am so sorry to hear about what you went through. It sounds horrible. That said, do you have any idea of what sort of palliative care they could offer while you were/are hospitalized? I only ask because a number of years ago, I was in Philadelphia for a week long lidocaine infusion before being considered for ketamine, and when the lidocaine didn't work and the pain remained intense, the nurses were right there with the Demerol, which wasn't a bad way to go.

Second thought, I know they don't have ketamine in the UK, but there is quite an active program in Germany. Is there any way through the NHS that you could get a grant to participate in a high dose ketamine study in Deutschland? Could this otherwise horrible neurosurgeon have any connections in that regard? Just a thought . . . .

We love you.

Mike
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Old 07-06-2007, 04:01 PM #19
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Default Hi Frogga,

My PA that I had for years use to tell me I had a sick sense of humor. I laugh at things that most people cry about. I do think though it helps us to get through what we have to go through.

Like you, I had a Dr. in Denver that wrote in my charts that I wouldn't cooperate with him so that he could check out my TOS. He wasn't my regular Dr. there and I didn't need him to examine me for something they already had documented. Needless to say, I never went back to any Dr. in that office.

You would think they'd have enough sense to know that we are already in pain, why make matters worse. Like you, I was so bad off, I could go to a Dr. and I'd cry for days over the pain they put me through.

I like the ideal of the hospital to see what else is going on with you but I would have trouble doing it. I spend over 2 days in one and I am ready to get dressed, tie some sheets together and go out the window.

I would think though this Dr. could send you to several other specialist to ilimanate MS or anything else that is going on with you.

You are so young to be going through so much. I hope that you will get to a point to where you are getting around better and doing much better.
Ada
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Old 07-10-2007, 08:49 PM #20
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Dear Frogga -

I withdraw all but the sentiment of my last post and apologize for not having really read your latest. It certainly doesn't sound as though this doctor is anyone in whose hands you would want to place yourself for any length of time. Sorry about that.

Mike
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