Ada,

Thanks for telling me all about that!

My doctor prescribed 5 mg of Methadone every 12 hours... I think it'll work... I have hopes! (especially after talking with you!!)

The Baclofen feels like it's working well... calming down my hands some, and I am off the Valium, and the Baclofen is keeping my jaw from locking! Goody!

What is the Prevacid for??

I also feel that the Celebrex is helping! Woo! I think I am getting the bad headaches from it a few hours after taking it though... so might have to change that around.

I can't start the Methadone until next week, as I have to work with the Baclofen and see how my body handles a larger dose- working up to 30 mg a day.

Thanks again, Ada!

ETA: My neurologist is also increasing my Neurontin by 600 mg more per day- which will be 3300 mg a day.

Hey Sea monster...

Sounds great! glad the baclofen is helping you!!! at 5mg you should be having a wonderful reaction at 30mg (I'll PM you about some of the side effects you should really watch out for!)....

So glad it is helping love ya tons and tons

Froggsy xxxxxxxxxxxxxxx

Oh yes, Rosie! Would love the PM with info! That'd be great!

Also- wanted to tell you- remember a while back we were talking about pain management programs and how most PM Drs will give you meds for the breakthrough pain (except mine wasn't)?? Well, my (new) neurologist asked about what I take for breakthrough pain, I guess he was rather surprised that I hadn't been prescribed something sooner... and that's when he decided on the methadone. See, he wanted something with slow release that would give me relief through the day. And then, I can use the Darvocet as needed, but not regularly like I was (just) doing per the rheumatologist's suggestion.

Anyways, thanks! Love you bunches! xxxxxxxxxxxxxxx

Love,
the Sea Monster (I have to love this name! )

P.S. Bets made up the Monster title for me. LOL!

Ah, the nickname just came to me...and now I see that it's been picked up by more people. Soon, everyone will know you as "Monster," whether you like it or not.

I'm glad this guy knows what he's doing!! If only all doctors could figure it out, we'd have much easier lives!

Love,
Bets

ROTFLOL!! Ah, well! I know that one of my special friends made up the nickname! ((hugs)) I told you, only one other person ever thought of my name (Nessy) resembling the Loch Ness Monster... hee hee!

I think he does know what he's doing. I am trusting him, and feel safe with his care. He's the best doctor for RSD I have ever met! I wish every one could have the best caring doctors for RSD... but it's not so.

How've you been??

Sorry for not emailing you yet! I will try to soon... I have been kinda pounded with so much since getting back from PA.

Sending you pain free hugs xxxxxxxx

The Prevacid is for my PUD and GERD. For some reason the insurance doesn't want to pay for it.

As far as the Methadone, is it for the breakthrough pain or the regular pain.

I found that mine didn't last the 8 hours it's suppose to so that's why we decided to do it every 6 hours. I have been on it for over 4 years now and I like it.

I am so glad this Neurologist is helping you. I have seen 4 different Neurologist and all I ever saw what they were good for are EMG's. I went to one once with chest pains not related to my heart and he did an MRI on my brain. Never could figure out what it had to do with chest pain. It did show I'd had a ischemic stroke though.

I'm glad he has given you all the meds to help you. I will say this IHH, I think you are very determined to see better days and that's a plus. You are so much like me. I told my PCP once that I was going to turn getting well into a job, I've never quit that job.

If you start seeing constipation, you might try Merilax. I am thinking it is over the counter now instead of prescription.

Hang in there and have a good evening.

Ada

Oh, okay. Thanks so much for the long post- you've been a great help to me.

I am wishing that my doctor will be able to put me on something like that or an anti nausea medication. I am getting the nausea, vomiting and heartburn/ the like a lot. Last night I was up vomiting. It's been rough dealing with that aspect of the RSD, and I wish it'd just go away!! Anyway, it won't; I am afraid that my doctor isn't going to put me on yet another medication... so it may be out the door. But it stinks dealing with it. Most doctors are so hesitant of putting me on some medications because a) I am young, b) I am already on a lot. But I wonder how much longer the vomiting and nausea and the like will last...

I definitely believe in fighting for my health and not giving up. It's like my mom's said to me many times "It's your health. It's in your hands, and you are responsible for it. You cannot expect the doctors to care and help, because some of them just plain don't care, and they aren't going to help you. You hold your health." So, she's taught me to not give up. She's been by my side as I've sobbed after appointments that were terribly disappointing. She's let me tell her my feelings, and then she's reminded me to not give up, to search until I find the doctor I need. I owe so much to her, she means the world to me. She rejoiced with me in the excellent find in the neurologist- we knew we had to find someone to help SOON, and she nearly cried in joy after this appointment. I left with tears streaming down my face I was so thrilled.

I am so happy about this doctor. Frankly, he didn't care about the EMGs... he saw it was SO obvious that I had RSD, and I had all these secondary problems that he didn't care about the EMGs. He told me himself- they can come back normal- they don't necessarily mean anything, so don't be disappointed.

He looked at the brain MRIs, but they weren't his main concern. He knew it was RSD, and all the tests show absolutely nothing. So, they all mean nothing, but for good measure we'll do them. KWIM?

I get the chest pain to. As far as I know, in my case, it's from my muscles not working right, and getting so tight in my chest, as well as pain because my autonomic nervous system is all wacky... causing my blood pressure problems, heart palpitations and pulse problems.

I hope the methadone will do something- I'll let you know.

Thanks again for all the help!

Hey Monster,

About the Prevacid thing...now, definitely be careful about this and go over your meds with a pharmacist before following my advice (if you decide to), but Prevacid is in the same class of medications as Priolsec, which is now sold over the counter. I take Prilosec every day, as I have some degree of GERD (my mom was kind enough to pass that on to me and both of my brothers). It comes with two weeks worth of doses, and if it works I recommend going to Sam's Club (or one of the places like that) to buy a big package that comes with enough for six weeks of doses.

That way, you don't have to ask for a prescription if you don't want to. As I said, however, you need to be careful because of all of your other medications. So discuss the possibility of interactions with your pharmacist. As a matter of fact, it can't hurt to find a drug interaction thing on the web and type in all of your medications to see, which will give you an idea if it's even feasible to ask!

Love,
Bets

I just wanted to talk to you about the nausea. Talk to your Dr. about it. Ask him about Phenergan. I love it. I keep it here in case I do end up with nausea. Since I don't have all of my insides, I really have a problem with meds and food.

The reason I ended up going to the hospital Tuesday night is because I couldn't even keep the Phenergan down. They ended up giving it to me some in an IV and then giving me a script for the suppositories. So I have both pill form and the suppositories here now.

A lot of people do use the Prilosec as Betsy says. It does nothing for me. I believe one of the reason's I ended up in the ER last week is because I am out of the Prevacid. If I had it in me, I might not have had the problems I had. I have some now because I dug for some here. After the move I couldnt' find it. But do talk to the Neurologist about your stomach. You don't want to end up with an Ulcer or GERD from taking the meds.

I'm glad you have such a great Mom. After losing Bill in Nov. it brought back memories of my Mom and Dad. This week has been a bad one again for some reason. I have missed Bill a lot again. I do good for awhile and then something springs the memories. With having such a good advocate on your side helping you get some help you are very lucky. I have a good friend that keeps me fighting, he would kick my ***** if I really did sat down and give up.
Bill was like that too, he kept me going, like my Dr. does. We need that support because the journey with RSD is too long.

Have a good evening girl, and keep up the fight.

Ada

Hi Ada!
Oh my gosh I sure do agree all their good for are EMG's! I do however thank my Ortho surgeon who had an MRI done on me.. they found Atrophy on my brain!! I looked this up and it is for the elderly!! my surgeon said I am way to young to have this. I don't want to spoil the posters question on this.. but please friends.. pray, pray.. pray!! thank you all!! Love, desi