[dealingwithtos]

Hi Everyone,

I am hope that you can help me.

I'll give you some background on me. I've had RSD for 4 years. Undiagnosed for 2. I had a SCS implanted November of 08. I have RSD in both of my arms

I am having some real issues with muscle pain, bone pain and pressure. Like I have a bus on my arm. The stimulator only helps with nerve pain.

I am currently on Neurontin 2700mg per day, Baclofen ?mg per day.

Can you tell me what you guys take for muscle, bone pain and pressure?

Thank you.

[abrown176]

Hi! My PM doc has me on Norco, for pain in general, Orphenadrine 100mg, for muslce pain and spasms, meloxicam, for inflamation, and nuerotin 2400mg total in a day. My physicatrist also put me on sertraline for OCD and depression but he said it mixed with my other meds would help with pain. I also use lidocaine patches for pain and tenderness of the skin. I have a SCS too. It has been in since April 09 but, I am going in for a third surgery soon to redo the batterys intenal stiches. It works great but Im getting tired of surgery. Hope this might be helpful and hope you get to feeling better soon!

[dealingwithtos]

abrown,

Thank you so much for your reply. I did some research on what you're taking. Norco won't work for me because I don't want to be on narcotics. Can you tell me if you work? I'm having a hard time finding things that I can be on while still working.

The orphenadrine seems like a real option for me. I also have fibromyalgia so this will also work for that. In addition, I am able to take the neurontin and the baclofen while taking the orphenadrine so I wouldn't need to ween off anything. This is to be taken for me primarily at night. So, it doesn't interfere with work.

None of the doctors I've seen has thought of this medication - in addition to my pain specialist. I don't know about you - but since having my SCS implanted, it seems that my PM doc doesn't want to do anything else for pain.

I am so sorry that you have had to had surgeries for your SCS. I hope it has helped you as much as it has me. I am able to wear clothes without a pain patch now. It really does help, but it's not a "cure all."

Wishing you pain free days,

[abrown176]

I can not work. I have trouble standing, walking,or sitting. I have to walk with a cane due to the numbness and tingling, I fall alot. I have a pretty pink cast on my RSD foot and leg now. Sitting just makes my back feel like it is crumbling so then I must lay down. All of my meds make me feel dissy headed or out of it. I applied for disability but have been denied. I attained a lawyer from allsup. My PM doc every time I go I try to tell him that I am still in pain and the Norco is not working so now he put me on ambien to sleep at night. They are going to reprogram my stim to now cover my back. He does seem like he doesnt want to give me anything else stronger its always just try this and try that.

[RNcrps2]

Hi. Different meds work differently on people. For instance neurontin and Lyrica are not much different but people respond to one better than the other. I use lyrica and find it works well. Maybe its not a matter of adding another med maybe you can switch.

[hollyk24]

I also have that pressure feeling on my foot . . . . Not quite as stong as your bus, but like something like a 20lb box is on top of it. Unfortunatly, I haven't found any magic to make it go away yet

[dealingwithtos]

RNcrps2,

Hello, I have tried Lyrica and cymbalta both. The lyrica caused myoclonic seizures and cymbalta made my eyes permanently dialate. So, that doesn't leave very much.

abrown,

I have read your posts about you falling quite a bit. I am so sorry. I don't know if we get to the point where our nerves don't respond to medication or what. It just seems that no matter what I try, it doesn't help. It's frustrating. With your numbness and tingling sounds like a pinched nerve. But, that sounds too simple of an explanation. In my state, I have to be out of work for 1 year before I can even apply for disability. I would lose everything if I didn't work. I have changed my hours so that I work 6-2:30. That leaves the afternoons and nights where I am at home - which is my highest pain timeframe. Nights are just horrible for me. I'm sure it's because of my muscles relaxing. Atleast that's how it feels.... I do have to say that sleep is really very important. Not only to function, but to fight pain. I can tell my pain is much higher when I'm not sleeping. I take something to help me sleep every night - if nothing else to knock me out.

Pain free hugs everyone,

[Imahotep]

I think ya' got my bus. Does it have uncomfortably warm tires?

Next time it comes around you're welcome to keep it.

I'm pretty lucky I guess. The gabapentin works pretty well for me ~1200 mg/ day. I take tramadol for break through pain but don't use it much. It doesn't help a great deal; none do for me.