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Debby · 03-24-2010, 11:53 AM

I had problems with UCD (a teaching hosp like Iowa City) in Sacramento, long story, but that did get cleared up & I might try to go back there, as I am tired of driving to Sausalito to my PM Doc. mostly cause mine left the clinic after 5 yrs there & I don't have the rapport with him like I did with the doc who left. And also I am tired of the drive, actually my hubby is......as he does the driving over there.

Anyway, look I know the frustrations you are going thru, all of us do. Heck I went without prescription coverage at one point for 9 months. BUT I didn't let that get me down & I didn't go with out my meds either. I don't remember how I found out about the website needymeds.com, but it is a Godsend. I got everyone of my meds, but one, for free thru the pharmaceutical companies the whole 9 months until Medicare Part D started. It was work to get them free, paperwork etc, but it was so worth it. BTW, Lyrica is listed on the site. Check it out.

Now about your pain control, I went for over 2 years without enough pain meds to make a difference. My GP would only give me 3 Norco a day while I was trying to find a PM doctor, might as well have been sugar pills. One doc I found was like Hooshmond, he doesn't believe in giving pain meds to people who have RSD because you have to keep increasing the dose. He does do my procedures(SGB's etc) to this day tho. I had to keep looking then a friend referred me to one over in Mill Valley (now in Sausilito, both next door to San Fran) so I called & I had to wait 6 months to get into him, but it was so worth it. Then it took almost a year to reach the dose (which I am still on since '05) that made me comfortable enough I could function again. He started me out at 30mg & I now take 200mg of the pain medication every 8 hrs. The only thing that has changed is the amount of BT pain meds I take when a flare starts up or when one hits me over the head like what has been happening lately. SOOOOooooooo a good PM doctor will start you out on a low dose so he can work you up to one that helps you. They try to keep you on the lowest dose possible & that is the only way to do it. Those 2 yrs are like blur in my mind now.........I was conscious, but in so much pain it is hard to remember anything else. So when working with PM docs, clinics etc you have to have patience until they reach the dosage of meds that will work for you. Am I in pain? Yes, but at a level that I can manage. I have gotten so use to the pain in both of my feet now, that I can pretty much ingnore it unless it is flaring, or they cool to cold. So if you only stuck with the docs a few monhts you didn't give them a chance to work up your dosage & maybe you should try them out again. When we are in 'this' kind of pain we want it gone NOW. I wanted to die during those 2 yrs, but my darling grandchildren kept me from doing anything drastic, but if I had died during that time frame, it would have been a blessing to me at that time. Now that I have a better pain control & a better grasp on my pain I am sooooooooooooooooooo greatful that I didn't die.

Debby
ps: I remembered how I found out about needymeds.com. I was dx'ed in 1989 with Fibromyalgia. Before there were forums like this, there were & still are news groups. There is probably even one or more on RSD. Well anyway I use to belong to a Fibro news group & someone there recommended the web site to someone else & I have just always remembered the web site. It literally saved my life those 9 months I had no prescription coverage. After having the type of pain control I still have, I don't know if I would have been able to go back to NO pain control during that time frame & not do something really stupid. I lost my health ins after my employer (I worked for the county I live in at the time) let me go finally after a year out on disability. And there was no Medicare Part D yet. My hubby is on disabilty also, he was when we married. The plan was I work he stay home take care of his 2 grandson's we raised, while brought home the bacon. Was a good plan cause I loved to work. Well, life decided that that was not the plan it wanted for us.