[Donna7]

Hello! I've been on and off these boards for a long time...mostly on the TOS board, but I guess I've had to migrate over here :-(

I was wondering if any of you could tell me if this sounds like RSD spreading...I have had an atypical case of RSD as a result of TOS and sternoclavicular instability (from a car accident 9 years ago). Mine has always stayed the "warm red" type, and I haven't had a lot of the burning pain in my arm. I have been taking 450mg of Lyrica for several years, which I know is responsible for keeping things calmed down. I do occasionally get the stinging/burning sensation in my arm, along with swelling and redness, and if I am in a hot room my arm catches fire...so to speak. I can usually calm it down with a cool, damp towel wrapped around it.

But, recently, I have had some concerns about it possibly spreading. I have had issues with my left foot (my left arm is my RSD/TOS arm) swelling, getting numb or tingly, or feeling a prickly burning sensation. I haven't noticed any real redness, but definitely the heat and swelling, so much so that my sandal straps dig into my foot (and they are usually loose). I haven't been able to trace it to anything, and it just happens in my left foot.

And this week, I started having an incredibly sore jaw...I waited a few days and called my dentist, who x-rayed it and said there had been an abcess that ate the bone away, and the tooth had to come out (again, my left side). I have in the past had pain and numbness in my face, which I attributed to the TOS and/or RSD, along with a full feeling in my ear (I know that the blood and lymph vessels don't drain well in this arm) and a drooping and twitching eye. Well, my dentist doesn't know anything about RSD, but I have him a quick lesson, and he used a lot of extra numbing medication for the extraction, but as soon as all that wore off I was in absolute agony, and have been ever since. I called the dentist the day after, and he said it was actually an easy extraction since the bone had been worn away, and he wouldn't have expected me to need any more than some Tylenol. I have been taking Percocet on top of my Oxycontin, and still barely getting a handle on the pain! Woke up at 3 a.m. with it again...because the pillowcase had brushed against my cheek. Yesterday I was sitting in front of a fan, and a section of my hair brushed up against my jaw, and it felt like a hot poker! The left side of my face is swollen, warm, and slightly red. The dentist says it is probably because we stirred up the nerves, but he expects it to be better in a few days. I hope he's right!

But...due to these two incidents, I am considering going back to a pain management clinic (right now my family doc has been refilling my pain meds and Lyrica). Do either of these issues sound like the way RSD spreads? Can anyone give me some advice, and is there anything I can do to stop it?

I would appreciate any advice you could give me!

Donna

[Russell]

I agree with your feelings about RSD spreading. I have a number of the same issues.
My RSD is from an accident effecting my left arm with burning pain too. It's now spreading to my face and down to my body and leg. I get numbness in my face and eye twitch. All on the left side too.
I also have degenerative cerebral atrophy effecting my motor skills, speech and balance so when my leg starts getting that tingling pain and I'm standing or trying to walk I fall.
I'm writing this just so you wont feel alone with this monster...

[Donna7]

Thanks for your reply! Things seem to have settled down in my face for now...I took an extra Lyrica for a couple of days, and I think that calmed it down again. I will have to be more careful in the future with dental work, though, I think!

I hope you are finding some relief, Jimbo. My son has chronic meningitis, and deals with a lot of the same issues you have, although he doesn't have RSD. The balance and speech issues, as well as some cognitive impairments and headaches/dizziness, really keep him debilitated. We are going to the Mayo Clinic in October to see a specialist in chronic meningitis, which is very rare. I appreciate your compassion in replying, and again, hope things don't spread for you...you have enough to deal with! Take care...

Blessings, Donna

[Russell]

Donna,
Thanks. I hope everything goes well for your son and you. I too take Lyrica. 600 mgs. a day which is the highest a doctor will prescribe. If my flare ups get any worse I have to find some other med to combine.
Oooo I love Colorado...

[Donna7]

I am taking 450, so when I add one I'm up to 600. My neuro was going to try to increase me to 600 but I get a lot of side effects at that dosage...but will probably see it someday. He hinted that he might be willing to go higher than 600 if need be, said something about the limit being somewhat arbitrary if I remember correctly, but of course I'm not sure I would want to take the risk. I am not really seeing that neuro anymore...but just so you know, there might be someone who would be willing to go higher than 600 if you were willing to try it. Again, I'm not sure I would...I would search long and hard to see where people have gone with it, since some of these neuro meds can have such horrific side effects. Not that RSD doesn't have horrific effects, too.

Take care, Jimbo, and I wish you the best too...

[Russell]

Donna,
To be honest I have gone over at times. My RSD is bothering me so bad today that I just took 300 mgs. more after reaching 600 mgs. 3 hours ago. Whenever I go over 600 mgs. I get the shakes and a slight headache but the RSD pain is controlled. I just haven't told my neurologist yet...

[Donna7]

Ah, I understand, but be careful my friend! Glad you are feeling better!