we all have something a bit diff, and someone may have more of something then outer, they just look bad, when I am going in to full body, I think stress makes then worse also, not sure, I know riding in a car, can make them a lot worse just as soon as I get out, look out, I been strap down to a table before due to them and that is after I been given a shot of Valum, like for an MRI
or getting a test down, and my Dr makes someone stay with me to keep me from falling off the table, I even had my foot come out of the stirrups ( us lady's know what I am talking about)
and almost kick my GP,, I felt so bad, but its not me doing it, just looks bad
after that I told my Dr I am never going to do that again,

but never feel bad for asking something ,,, we all have something that is worse,
then are fellow RSDers,

I got RSD from an auto crash, back in Nov of 05, but did not know what was wrong till July of 08,
we all just thought it was my neck, Hern C4C5C6C7 from being hit
then on the 3rd day, I had burning pain in my thumb,that burn so bad that I could not stop crying, I felt so dumb but it was real,,,, and it hurt, as we all know,,,, that just kept getting worse, then weakness, stiffness and so on ,,and 20+ Dr's later, and from NY to NJ to Oh, and Mi, was told full body RSD, the 1st time hearing about it,
I am mad cuz I was begging for help, just thought I needed surgery on my neck and I would be ok, WRONG!

I hope you find the right med you need,
its nice to hear, you are not alone, with this, but hate that anyone has this,

peace

I'm so sorry it took so long for you to be diagnosed. That is what is maddening about this disease to me......that SO many docs have no idea what it is. I actually ask EVERY SINGLE PERSON IN THE MEDICAL PROFESSION that I run across if they have heard of RSD and, if not, I take a moment to educate them......whether it be a doctor, nurse, or technician. I could care less whether I offend or embarrass a doctor. I make it my mission in life to raise awareness about this disease SO THAT people like you and so many others don't have to go to 20 docs over years before they're diagnosed and properly treated. My hubby had skin cancer removed from his hand yesterday. As he's cutting into him, I take the time to ask the doctor (with nurse present) if he'd heard of RSD (he had.....but knew no details.....so there follows the conversation for the duration of the excision!!). I at least waited until AFTER he gave hubby the numbing meds to bring it up!!!

I thank you so much for taking the time to answer my questions. I greatly appreciate and respect all of your input!!

Hello MominPainRSD
1st I am sorry about your hubby, I hope he is going to be ok,
now that must be hard, for the both of you, being sick,

Just a bit of info, you might want to look in to,
Here in Mich it is law, that RSD is real, here is the law as it is here in Michigan
please look up your St, and see if there is a law on RSD, if so, everyone in the med field have to learn about it, and more, it is law,,, but its seem its been up to us to make sure they do that also, you can call the RSD foundations in CT, and ask them to send all the info to any hospital or Dr's you might want to see,, they will send it out for you, also do not forget about the
EMT's that is near you,(the EMT near me are learning about it) and so on, but look to see if RSD is Law is your St
if not, you sure can start looking in to that, if you want to, Even my own Lawyer did not know about this Law, when I found it, I sent it on to him
and that help my case,
sorry about getting off track here,

I think its going to be up to all of us RSDers to bring RSD out of the closets
no one is going to do that for us,

again I am so sorry to hear about your hubby, also,

Peace '


https://www.legislature.mi.gov/(S(uw...e=mcl-333-5141

I take baclofen....my wonder drug! I went on it because the jerking of my legs and arms was getting to be too much and the muscle spasms were moving past annoying for me. I used to deal with it multiple times a day, and now have them maybe 2 times a month or less. Baclofen,soma and zanaflex are all for long term use, the flexeril is a short term use relaxer and shouldn't be taken for longer than 3 weeks. I've heard a lot of people say zanaflex didn't work for them very well or for long.

The only side effect is sleepiness. It made me sleepy for a few days but then it went away. I take 3 a day and have no problems.

Hugs,

Karen

I've actually been on the Zanaflex for over a year for my TMJ. No, it doesn't seem to help much, but it DOESN'T make me sleepy (the Lyrica does enough of that). Hmmmmm.....I've never heard that Flexeril shouldn't be taken long term. My doc KNOWS I'm on it. I think a phonecall to him is warranted. It doesn't seem to help with the twitching either (I just imagine how terrible it would be without ANYTHING)......I will mention the Baclofen as an alternative. I'm thinking of going off the Lyrica because it makes me SO tired I can't stay awake (and I get REALLY low blood pressure for hours in the morning). I only take it in the evening (50mg), and I'm drugged for a good 16 hours after. I can't do that with a five year old to take care of. Thanks for responding!!!