Hey all. I've been gone. Feeling really really under the weather- RSD pain high, nausea/ vomiting/ passing out from the pain, and migraine headaches back again.

Firstly, a lot of people mentioned "seizure" to me when I say that I am passing out. My Dr doesn't think that is what is happening.

I really haven't talked about my dr situation much here, I had a dr who treated me with medications and physical therapy (and she tried to pull the "see the psychologist" thing on me, but I stood firm in what I believed was best for me...
My dr wouldn't do nerve blocks or injections, because "your pain is too widespread". Why can't I just get one area done?!

Finally!! Found a NEW pain management dr! He is great. He is nice, doesn't think I am psychological, and doesn't believe I should do MORE hours and hours of physical therapy that isn't helping and making me worse and worse. Well, when my physical therapist said "enough" I stopped PT after 5 long months with 3-5 hours each day, my world crashed around me, so to speak. I guess I believed that the PT was going to "cure" me and one day I would walk out of there healed and get to go back to "normal" life.
I wasn't better- I was so much worse than when I started (except for more movement and less sensitivity in my arms/ shoulders). I was so dissapointed

New PM Dr wondered *why* I hadn't had any blocks or injections. He let me! And today I had my first LSB. Only worked for two hours (dissapointing, but I will try again the week after next), but it means that it kind of "rules in" the RSD, as it will usually respond to blocks. New PM Dr is sending me to a neurologist (for migraines/ passing out), and a rhuematologist (to rule out other stuff).

It *appears* that I might have something other than RSD AS WELL. I do have many symptoms of MS, and a few others, but MS stands out the most. Who knows, but Dr never tested me for things other than Lymes, Lupus and Arthritis, and gave me one bonescan. Never sent me to a rheuematologist to rule out more. More should have been looked into as I have all the following symptoms: ringing in the ears, loss of hearing, numbness, PAIN (stabbing, shooting, burning, throbbing), migraine headaches, skin temperature changes, skin color changes, allodynia, hyperalgesia, loss of motion, severe muscle spasms (that lock my jaw, and do numerous other things)/ contractions (that "lock" up my limbs, usually on the left side), swelling, abnormal sweating, tingling, difficulty swallowing, heart palpitations, weakness (enough that I can no longer walk unassisted, and have to use a walker), passing out, double vision, burning mouth (which some might call BMS, but it is the RSD in my mouth/ throat), shortness of breath (and at times I stop breathing out of nowhere repeatedly)... too many! -and all pretty scary, and when put together I= a mess! LOL! I have to try and make light of the situation as it is pretty overwhelming! Trying to explain to people what is wrong with me and I am so young is hard.

The lyrica has proven to be an excellent option for me together with neurontin. I have less allodynia when taking 450 mg per day.

I have quite a few questions since I have last visited:

*If you've had blocks, if the first one wore off in the first few hours, did the next ones wear off sooner, or no difference or did they last longer?

*Those of you with RSD in the mouth/ throat: what has helped with that? I have found cold ice water helps, but not sure about using that with the ice/ RSD issue?!

*Does anyone else BESIDES me and Frogga pass out from the pain?

*At what dose of valium has your muscle spasms lessened/ stopped?

*What is the highest dose of amitriptyline you've been on that has helped for sleep?

*How many of you have been approved as "handicapped" and gotten a handicap tag for your vehicle? How did you go about it? (trying to figure that out)

*Who has in home heath aides to help them? How were you approved as "needing" that?

*Any good positions in bed you've found helpful, if you have full body RSD?

*Trying to figure this out: which ones of us on here have full body RSD? (trying to get a count)

I am pretty overwhelmed with everything now, and if you don't see me around much don't be suprised. I am VERY exhausted, and everything is getting worse, and I have no energy to type, and my hands are hurting terribly from the RSD. The RSD is nearly full body at this point. I am trying to fight hard but it gets so frustrating day after day. Being young and house bound isn't easy. I am able to get out once in a while to ride a motorized cart in a grocery store, but I can't walk through a store. I am repeatedly falling. Frustrating, as I said, but I am not giving up. I am seeing the neurologist in July and he has more to offer than the PM Dr, so if blocks fail the neuro can do trigger point injections. There are other medications that I haven't tried, and I WILL GET THROUGH IT!

Some of you on here have blessed my life tremendously! Thank you tons everyone, you are so appreciated. I appreciate your prayers, best wishes and sweet posts to me.

With help of my sweet positive and determined to make it through everything Frogga, I am helped millions. ((hugs)) And by others here as well who I have talked to privately (you know who you are and know I love you! ).