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 10-08-2011, 08:10 AM #1
irish4luck irish4luck is offline
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Frown Scared of need to switch Doctors; mine left

I had an awesome, compassionate, caring, and supportive physiatrist (pain specialist) who had been with me from the beginning, a week or so after my auto accident. She was completely aware of my day to day challenges, struggles, frustrations, and sometimes emotional breakdowns due to the level of pain and loss of us of my right arm and hand. She also empowered me to tell her what I needed and then would figure our how she could, to the best of her ability, meet that need. She has now moved on to Hospice and Palliative Care. I met with her about a week ago at my regular appointment and we discussed her decision. She was actually teary-eyed and asked for a hug before she left at the end of my appointment.
I am so scared, apprehensive, and worried that the doctor/physiatrist I am now assigned to will not be as compassionate as she was. My P.T. knows my new doctor and said that he is extremely knowledgeable about RSD and what to do for each case, is highly respected by his peers, but does not have the same type of "bedside manner" as my original physiatrist.
I'm in a internal battle: RSD knowledge & compassion vs. RSD knowledge and blunt personality.
Am I making too much of this? My biggest fear?: being touched and prodded in places on my arm that will set off a "flare." WHY DID SHE HAVE TO LEAVE!!
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Old 10-08-2011, 09:39 AM #2
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I am so sorry that this has happened. Try not to stress too much until you actually get to meet and work with this new doctor (goodness knows the last thing we need is stress on top of everything else). If he is knowledgeable about RSD then you shouldn't have to worry about him doing anything to aggravate the pain and cause a flare (one would hope anyway). Make sure to tell him your fears, be open and honest with him, and see how things go.

My first pain management doctor who initially diagnosed the RSD had a poor bedside manner and often made me angry...but he was a good doctor and in the end what he brought out was my stubborn streak and determination to fight. This is something that I can see in hind sight...but didn't appreciate until he left the practice and stopped seeing patients and I was forced to switch. Now I'm with a compassionate doctor like the one you say is leaving you. She's offering essentially the same treatment as I got with the first one (PT and meds) but when I leave her office I always feel at peace and optimistic as opposed to stubborn and determined. The results are the same and neither one ever did anything to aggravate the RSD...the biggest difference is just how I feel coming out of the appointments.

I hope things work out with your new doctor.
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SandyRI (10-08-2011)
Old 10-08-2011, 11:20 AM #3
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Default catra121 thank you!

Thank you for your persective which gives me "food for thought." Our doctor visits are for getting our medical/RSD needs met as much as possible; not to be a best friend to our physicians. I'm going to meet my new pain doctor the end of October. I plan on meeting him with an open mind.
I agree that added stress for someone with RSD just makes the situation worse. And yes, we want to avoid a flare-up at all cost.
Again, thank you. Your words of wisdom verifies why I became a member of this site.
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Old 10-09-2011, 04:40 PM #4
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When the only thing standing between you and suicidal level pain, is the care of your doc, an RSD patient's need to trust and feel comfortable with their pm is understandable! They inherently have a major impact on the quality of our lives for goodness sake.

If you can keep things in perspective, that if the worst case scenario happens, and you can't develop a good relationship with this new doc--that there are other fish (with medical degrees) in the sea.

A longer period of transition would have been nice from your former doc, but C'est la vie! A bad situation will only be a temporary one because you can be proactive about finding good care.

You might just find your new doc brings fresh ideas to the table, and it might be this doc that helps you on the journey to put your RSD into remission...
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Old 10-10-2011, 08:05 AM #5
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Quote:
Originally Posted by irish4luck View Post
I had an awesome, compassionate, caring, and supportive physiatrist (pain specialist) who had been with me from the beginning, a week or so after my auto accident. She was completely aware of my day to day challenges, struggles, frustrations, and sometimes emotional breakdowns due to the level of pain and loss of us of my right arm and hand. She also empowered me to tell her what I needed and then would figure our how she could, to the best of her ability, meet that need. She has now moved on to Hospice and Palliative Care. I met with her about a week ago at my regular appointment and we discussed her decision. She was actually teary-eyed and asked for a hug before she left at the end of my appointment.
I am so scared, apprehensive, and worried that the doctor/physiatrist I am now assigned to will not be as compassionate as she was. My P.T. knows my new doctor and said that he is extremely knowledgeable about RSD and what to do for each case, is highly respected by his peers, but does not have the same type of "bedside manner" as my original physiatrist.
I'm in a internal battle: RSD knowledge & compassion vs. RSD knowledge and blunt personality.
Am I making too much of this? My biggest fear?: being touched and prodded in places on my arm that will set off a "flare." WHY DID SHE HAVE TO LEAVE!!
Hello Irish4luck! Just wanted you to know that I am thinking about you and I really hope that you find a wonderful doctor soon. Karen67
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Old 10-10-2011, 08:16 AM #6
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Irish4luck,
I too hope that you find a good doctor soon my friend. Most doctors, if not all, should have some sympathy for your fears and pains. Just be in charge and communicate to him/her. A good doctor listens as well as diagnose problems. Will send thoughts and prayers your way....
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Old 10-10-2011, 09:59 AM #7
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Quote:
Originally Posted by irish4luck View Post
Am I making too much of this? My biggest fear?: being touched and prodded in places on my arm that will set off a "flare."
Only time will answer that first part; IME, stressing over things outside of your control is only going to be detrimental/exacerbate things, and likely needlessly.

As to your biggest fear, I agree with others who've suggested talking honestly & openly about this at your first appointment. Being prepared ahead of time to accurately describe things verbally should help avoid/reduce any need for poking & prodding. The (google: ) McGill Pain Questionnaire may help. Also, googling: pain adjectives

HTH,

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