Hi Guys!!

Some history on me first...I have had RSD for 21 years now. First diagnosed with it in the right side of my face. I was in remission for 13 years until a huge flair in 2005 brought me out of remission. In 2009, I hurt my right hand and developed it there. It then spread to my left hand and then after a bad blood draw and shoulder surgery, it moved on up my arm to my shoulder and mirrored over to the other one. Also in my left leg and then hurt my right foot last year, and yep, you guessed it! It is in both feet now.

So now, we think it is affecting me internally. It is the only thing that can describe the pain I am experiencing in my side and in my head. These pains feel the same as the ones I have in the RSD areas and they are debilitating. The dr agrees that it is the RSD spreading and can't stop it, which I know that already.

I don't really know what to ask here. I know many of you are experiencing RSD internally, have you had it affect your head too? Did it spread rapidly when it went internal? I know everyone is different, but I am curious.

Thanks all!
Nanc

I have full body and internal RSD, my internal RSD affects my stomach,bladder and heart. My stomach is always burning sometimes worse then others, I have to watch what I eat and have 5 different meds for it. The bladder I only have issues with if Iam in a flare and dont get help it shuts down sometimes for 2 weeks. And my heart I have really high blood pressure and heart beat which scare the doctor sometimes when it gets so high.

As for in the head, where on the head is bothering you. My whole face burns and hurts, my eyes burn along with my whole scalp so I have to be carefull brushing my hair. I also get migrains pretty bad.

Niki

Dear alaska - Could you please describe how the bladder issues that you experience feel? I was unable to get to sleep for hours last night due to odd bladder sensations.
I have RSD issues in all 4 limbs and my head. thanks SS

Dear nanc - I get burning in my head. I hate it. My head surface, eyelids, eyebrows, cheeks, earlobes will burn with singing nerve misfires. SS

Hi Niki! Thanks for your reply. Sorry about how all you are having to deal with RSD. I have suffered from migraines since I was a kid. These pains I get (aside from the migraines) are in the top and/or sides of my head. They are sharp, shooting, burning pains. They feel the same as the ones I get in my abdomen and other RSD areas.

What kinds of meds help your stomach, if you don't mind me asking?
Nanc

Sallysue my bladder when it shuts down or bothers me burns really bad and have like a dull pain. I have to get help quickly or end up needing a catheter for a couple weeks.


Nanc the meds I use for my stomach are
Prilosec which helps with the damaging acids and premotes healing stomach liner.
Reglan for nausea and vomiting
Dicyclomine which calms down the stomach spasms I get
and Metoclopramide its ued for gastro reflux and it also speeds up digestion as the RSD with the inflamtion has slown down my digestion system.

When they did a scope down to my stomac they couldnt believe how bright red and inflamed my stomach was. If I am in hospital in a flare they give me 3 other meds for my stomach but cant remember the names but these are for only in the hospital.

Niki

Hey Alaska since your RSD is full body i have a ? for you. about 3 months ago i lost my voice during a REALLY bad flair. at first i thought maybe i was sick, but then it happend again just a few weeks later and its continued when im in a bad enough flair. I loose my voice and it burns.

I havent lost my voice before but I do know of a girl in WA that lost her voice too for 6 months and she had the burning, I forget what they did but I think they massaged they voice box area and also gave her ketamine lossanges. I did loose the ability to swallow for 5 months, I had an ultrasound too my ganglion nerve and the vibrations shorted it out so I needed a feeding tube for the time and also could hold up my head. It took 3 months of a speech therepist coming too my bed every day to help retrain my swallowing.

You might want to find a speech therepist that knows something about RSD and see what they would reccomend. The speech therepist that helped me really understood infact she had RSD too from getter her tonsels out.

Niki

Hi
I have it on the right side of my face, it effects my eylids, inside my nose and cheek. I also have it in my womb due to birth complications when having my son. I took a while to convince the drs of that though. In the past I have had burning and stabbing pains in my kidney areas. So far I havent had any luck with treatment but to be honest it is not to bad compared to the other effected areas. good luck

I have RSD that started in my left foot after bladder surgery. I have terrible reactions to any meds they try to give me. Sometimes my mouth and tongue burn do bad a cant stand it. Does anyone else have these symptoms in your mouth.