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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board
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Old 01-26-2009, 07:16 AM   #1
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max06ie HB User
RSD Headaches

I have had RSD (CRPSII) in my right shoulder/arm/hand for eight years. In August 2008, I had my intrathecal pain pump medications changed from Dilaudid to Prialt (a non-narcotic medication). I had severe side affects from the Prialt and had to increase it to a very minimal amount. On Nov. 25, 2008, I started having severe headaches. I am VERY sensitive to noise, light, TV, computer, stress. My head feels like I have a rope tied around the hairline and someone is pulling on it. My scalp is very sensitive also, like my hair is being pulled. My ears are red hot and my face is also red hot. I feel like I am burning from the inside out. Plus, a feeling of RSD burning pain. Does anyone know of these types of symptoms? I have done everything I know how to deal with thiis. Thanks for any help.

 
Old 01-26-2009, 01:19 PM   #2
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Re: RSD Headaches

Dear Maxie

The burning is definately a symptom many of use deal with!!

I also get awful headaches - mine seem to be related to muscle spasms in my upper traps. The pain starts in my neck and bottom back of my head, and if I can't get meds in me in time, it will spread to my whole head. When I see my physcial therapist he tries to loosen the muscles with massage.

Percocet helps me. I also use a heating pad sometimes on my neck and the back of my head. I have sometimes put cold compresses on my face because it gets so hot, but never on the area in the back of my head where the RSD is. ICE is a no-no for us.

My RSD started in my right shoulder, also, from a torn rotator cuff in Nov of 2006 and then 2 surgeries to fix it, with very aggressive PT after the 2nd surgery. That's when the pain just exploded and I ended up in pain management.

I've tried over the counter pain relievers for the head pain, but only percocet seems to help. I also take Soma, Neurontin, Cymbalta and Clonodine. And Ambien to sleep (hard to beleive that I still need help sleeping with all of the other pills!!!).

The best of luck to you, this board has a lot of really good info on it and very helpful people who post on a regular basis.

Sandy

 
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Old 01-26-2009, 04:43 PM   #3
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Re: RSD Headaches

Thank you so much for your posting. I feel better (kind of) just knowing there is someone out there with a similar issue. Do you have a good doctor, and did they conduct any diagnostic study for the RSD in your head? In other words, is there a test I could ask for?

 
Old 01-27-2009, 01:59 PM   #4
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Re: RSD Headaches

Hi

My physical therapist has been an enormous help. When the head pain started, I asked him if I should have an MRI or CAT scan of my brain just to see if there was something in there. He spoke with my pain management doc and they agreed that my symptoms were from the RSD, so I haven't really had any tests. Just the PT and pain mgmt doc comparing notes and ruling other problems out.

I feel way worse when the weather is wet and/or cold and windy. I try to keep my neck and head wrapped up when I go outside in bad weather because otherwise I flare.

I was referred to pain management by my orthopedist a few months after the 2nd surgery because I was such a mess. The pain management doc sent me to a physical therapist that he works with, who has been wonderful. The RSD still sucks, but at least I have professionals that seem to want to help me, I also see my PCP on a regular basis.

Can you find a good pain management doc in your area? Maybe your regular doc can refer you to someone? Physical therapy is usually standard for RSD, if you can find someone that has experience with it that would be great! You have to be careful, though, because if the PT is too aggressive it will hurt rather than help!!

Wishing you the best of luck, Sandy

 
Old 01-31-2009, 06:46 PM   #5
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Re: RSD Headaches

I use to get really bad headaches with the RSD.. If I didn't catch them in time.. I would be so sick from them.. Now I am smart about it.. I take something right away.. I use the warm compress on my neck and one over my eyes... Such a lovely sight to see... lol.. Its helps..
I am actually in a research program with Dr Schwartzman right now.. RSD and headaches.. They're finding that its more common then you think... Hopefully after the research they'll come out with something that will help us..
I haven't heard from them in a while.. So nothing yet.. Let you know when I do..
I do get the burning in my face when I have these headaches. and my face feels tight.. No swelling so I know its not that.. I am very sensitive to noise, light etc. I think its actually migraines your having.. Thats what mine are.. Best to try to catch it, lay in a dark quiet room, with warm compresses.. and take a pain killer..
Michelle

 
Old 02-01-2009, 03:05 PM   #6
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max06ie HB User
Re: RSD Headaches

Thanks for your reply. I really appreciate it. I've had migraines before when I was reactive to birth control pills. This isn't that type of headache, although it could still be a migraine. It never goes away, which wasn't my experience with the migraines. Just reacts to all the sensory information I receive. My accupuncturist thinks it may be related to 3 diagnotic tests I had for esophagus issues. The barium swallow and the manometry were especially aggravating to me. The night of the manometry, I had a real hard time breathing for hours. I have felt all along that the RSD spread to my head (which I've never heard of before) due to the stress of these tests. I finally have an appt. with my pain doctor Feb. 11; he has been on vacation for a while. Thanks for letting me know, if you find out about the research. Take care.

 
Old 02-06-2009, 05:39 PM   #7
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martra1025 HB User
Re: RSD Headaches

Max,
My husband has RSD in his right hand and left foot and at times has severe headaches. We always thought it had to related to the RSD.

 
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