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Old 04-09-2015, 09:40 AM #1
Tina E Tina E is offline
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Hello. My name is Tina. I joined this group because my daughter Courtney has had RSD and Fibromyalgia for 10 years now, since she was 9. We seem to have the RSD under control. The fibromyalgia, not even close. She has been having episodes for the last 3 years of syncope. 3 neurologists and 3 cardiologists plus family doctor have not been able to find anything in tests and all refuse to say that it can possibly be from the RSD. It took taking her to a new dentist yesterday to find out that the RSD is more than likely causing the syncope. Does anyone know any treatment for this? her BP runs low sometimes but not terribly. We've done the lots of water and lots of salt to no avail. She is having as many as 10-20 episodes a day. we've pretty much confined her to the recliner where she can't get hurt! Feeling pretty frustrated.
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Old 04-09-2015, 12:25 PM #2
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Hello Tina, and Welcome,
It is not fair - and one questions the Universe - when a child is ill and you can do nothing about it. I will keep this brief: a quick search finds reference of syncope being found among RSD/CRPS sufferers who take Lyrica.
Could you give everyone here a list of Courtney's meds in case someone better versed than I can join the dots.

Dave.
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Old 04-09-2015, 01:06 PM #3
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Welcome Tina E.
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Old 04-09-2015, 03:08 PM #4
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Welcome Tina,

Wise words from Dave on the med possibilities. I am taking nortriptyline for nerve pain and was horribly dizzy so lowered the dose. Many of the meds for RSD and fibro both can cause orthostatic hypotension, especially when in combo. It is a good place to start. Please come see us on the CRPS forum. It is a wonderful place for support and understanding, we have quite a few parents and partners there. You can search for the syncope or start a new thread on fibro or CRPS or both. There have been recent CRPS posts on cardiac issues though largely tachycardia. I am glad you came and found us. Your daughter is clearly blessed by you and you are clearly blessed by her, there is obvious beauty there even in your short post.

I am sending Healing Love,
Littlepaw
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Old 04-09-2015, 03:20 PM #5
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Hello Tina,
I'll just leave the links to a couple of forums here for you below.

Reflex Sympathetic Dystrophy (RSD and CRPS) Forum

Fibromyalgia and Chronic Fatigue Forum

There is a button at the top of the threads on each forum that says
"Search this forum". You can use that if you want to find past posts using a particular keyword - e.g. you could search RSD forum for "orthostatic hypotension" or "tachycardia".

I'm sure you'll find information and support here to help your daughter.
take care.
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Old 04-10-2015, 12:20 AM #6
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Tina,

Hello and welcome, happy to see you have come to be with us, it a great place to be. As you can see we have a great number and caring fellow members here, where you have find a supportive and relaxing place. Have fun looking into the different forums. Our shoulders are here for support in many ways.

Please keep us up to date on your condition. Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.

Darlene
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