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 02-12-2010, 04:15 PM #1
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Originally Posted by SandyRI View Post
Kathy--

Don't EVER GIVE UP!! That's what WC wants me to do - that's why they have tormented me, harassed me, harassed my treating physicians and other providers...Mike's answer was AWESOME - there is an answer for us - in the long run. It just takes time, which is so darned frustrating. We wait FOREVER for phone calls, and approvals, and appts, and treatments, etc. And for me, I am not made of money, so we need the cooperation of the insurance company, which is NOT going to happen easily. EVERYTHING is a battle, nothing falls in our lap, we have to work hard for it. BUT WE CAN'T GIVE UP. If ketamine is not the answer for us, then a pain pump likely may be. We need to ensure that we always have a Plan A and a Plan B. And maybe even a Plan C. You are going to see Dr. S soon - he knows so much, and can guide you to the best of the best. You hang in there...It's almost here.

FMichael - I have said it before, you are awesome!!!... as your were composing your posting I was in the process of trying to wean down off of some of my opiods. The brain fog and depression and crying spells are creating quality of life issues, and I think cutting down on some of my meds will make me better off - your posting was so timely. I just have trouble with the head and neck pain...they tend to get worse on lower levels of meds...but I want to give it at least several days.


Love and Peace, Sandy
Sandy...

You are awesome..can you tell I go high and low with my strength and energy to fight.. RSD is not our friend..but it has met its match..I know that if I am not a candidate with dr. S... (I have cardiac problem also).. i will be okay as I knew it was not in the cards for me.. but as you say..I will move forward.. how ?? Cuz of you and my friends here..feuling my tank... I so need your support and help..ANd you always have mine... I wish I could say something to help ease you back off of your meds and help you with not crying..Please.. don't cry... you are loved..

Hugz, Kathy
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Old 02-13-2010, 05:37 AM #2
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Dear Kathy -

I keep feeling the need to try and connect with you. I guess I was again struck in your last post when you noted that "RSD is not our friend..but it has met its match.."

Please be careful. It's been my experience after living with this for nine years now that the more we struggle "against" RSD, the greater our sense is that life has become unsatisfactory. Which may be the case, seems to be especially so if we express our satisfaction relative to meeting certain pre-set goals and expectations. I know some wonderful women who have withstood the greatest possible challenges of motherhood while fully afflicted with CRPS. It's my sense they have done so by modifying in some subtle sense the definition of what it meant to be a success as a parent, while not losing touch with its essence: maintaining a compassionate relationshio with one's child, through which the child will grow and mature. (Never easy for me in the case of my youngest son, now 12, who has no memory of me being healthy and doing a lot of the expected things with him, and which will bring him to tears in a second if focussed upon.)

But the key IMHO is not to wear ourselves out swimming against the tide. You let the rip tide take you where it's going, and swim into shore where you have the chance, not necessarily where you planned.

I was reminded of this over the last week in two related contexts. Firsts I was discouraged when a doctor changed my psychiatric diagnosis to "personality change secondary to general medical condition" (DSM IV 310.10) until a very wise psychologist who's currently repeating some neuro-psych testing on me in response to increasing complaints of loss of attentional skillls - which were never good - pointed out that I wasn't being told that I had acquired a personality disorder, only that my deep patterns of dealing with the world had changed. Then, case in point, I got my revised WISC III scores back (using the older test for better comparison with old data) and while the spread between my verbal and non-verbal IQ has increased to an almost unheard of 45 points (6 points is considered by some to be probative of ADHD, and 12 points typically conclusive, but 45???)* the thing was, although my non-verbal scores had decreased - as expected - my total verbal score was the highest it had ever been, with the most substantial increase in my ability to spot abstract similarities.

The point being, if we are determined that we are going to beat this thing, then we might as well stop trying to learn anything from it. In the words of Ram Dass, we "take the curriculum."

Of course, that doesn't mean that we shouldn't take advantage of opportunities when they come along, such as the chance that we may soon bave access to potentiated analgesics, with more effectiveness in controlling pain and less opportunity for developing either tollerences or GI/respiratory side effects. Which would be - in my own book of prejudged outcomes - not a bad thing at that.

Peace.

Mike

*This, by the way, is the reason I could never be a doctor.
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