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 02-13-2009, 05:16 PM #31
MominPainRSD MominPainRSD is offline
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MominPainRSD MominPainRSD is offline
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MsL,
How very interesting that you and I both suffer from TMJD on the same side as our RSD. I mean, I suppose it could be 50/50, but I think there is SOME correlation. I look forward to the kids going to bed so I can read the link you sent!! It sounds very interesting and intriguing.

I'm so glad your painful days are fewer in number. The pain in my ear almost outweighs the pain in my feet/legs (although they're catching up, unfortunately). Anyway, thanks so much for your input and sharing your experience! Best wishes!!
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Old 03-26-2009, 01:25 PM #32
kimmie kimmie is offline
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kimmie kimmie is offline
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HI ,my name is Kim was it dose hafe to do with thr r.s.d. i have had r.s.d. for 15 yeares the last 3 years my left ear stated doing the same as your s .i went to ear doctor several times. after sevarel test they said it was comeing from my r.s.d. i even have it today god bless kim
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Old 03-26-2009, 01:44 PM #33
Josephina Josephina is offline
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Yes, you can have hearing loss with RSD. It can come and go too!
RSD can have what they call 'hysterical' symptoms, because they are so out there, people won't believe you!
It is a good idea to understand what is going on with your body. It is good to have your hormones checked, especially your thryoid with the Free T3 & T4, and well as all your other hormones.
I am glad you are getting off the Lyricia. It sounds like a good idea, but I don't know of many people with RSD that do well on those type of medications. The best one for is is Klonopin ( name brand only). I also take Baclofin ( generic)
I try to have the additude that I have bad kids in me that are just out of my control. People will not understand, but as long as you do, that is all that really matters.
I can't stress trying to get into a deep hyperbaric oxygen chamber enough to help all the RSD symptoms. Insurance no longer pays for the treatments, so places are looking for warm bodies! Rates can very from place to place... 2 or more people and work discounts!
Be kind to yourself as no one else is going to understand what is going on with you. Practice deep breathing.
Living with RSD since 1984 and doing well.

Quote:
Originally Posted by MominPainRSD View Post
Hello all!! I was just researching on the web about this strange phenomenon that has occurred over the past month......actually ran across a thread from this forum and recognized many of the names here!! I want to post this question again.

I have had problems temporarily losing my hearing in both ears (it fades out quickly to where I can hear almost nothing and then slowly returns to normal after rushing noises or a deafening hum or a roaring sound (tinnitus). I thought it was med related.....went off the Lyrica thinking that was the culprit.....it is still happening almost daily.....(AND now I'm in worse pain from having come off the Lyrica on top of it).

It happens about once a day so far and takes about 10-15 minutes for it to normalize again. My hearing seems "normal" when this symptom is not present. I do have a history of TMJD and they have done every test imaginable on my ears in the past 3 years.....MRI, contrast MRI, CT scans, Tomograms, etc....they all showed some bony or joint abnormalities but nothing earth shatteringly wrong (except the unexplained extreme pain I am in constantly in my left ear).

I asked my pain doc if this could be from the RSD or if the TMJD could actually be RSD.....he said no. I am wondering what all of YOU have experienced?? Does anyone have any pertinent articles on hearing loss or Meniere's disease and RSD???? Is there a connection???

I should also mention that often when I experience this, I also feel EXTREMELY weak......cannot pick up a glass to drink or a pillow to lay on. It is literally like my limbs do not want to work properly. My blood pressure does seem to be somewhat low at times, but not alarmingly so. I have had pretty wild swings in my BP since my diagnosis 2 months ago ("wild" for me......120/80 to 80/40 throughout the day).

I just cannot make sense of all of these bizarre symptoms and cannot afford to go to 10 different docs and have 20 different tests run to rule things out.

I would be very interested in anyone's input who has experienced some of these same symptoms and what their docs did about it. Thanks in advance for any replies!!!
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