Well actually, it has been over a year now that I have had this syndrome, disease, dystrophy, whatever…I remember at the beginning the doctors telling me it was a good thing we caught it early because now we had a good chance of this thing going into remission. But the same doctor told me CRPS does not spread from the original site as I was pointing at my swollen and purple feet and legs that had lost most of their hair. Now I know when it is going to spread by a severe burning pain in a new area on my body. It is pretty much everywhere now. My ribs, chest, neck, face…you get the picture. I have been on several pain meds. The one that actually worked the best for the deep bone crushing pain was the Fentanyl patch. Ten times stronger than morphine, ya baby…But I had too many problems with the patch not sticking properly and issues with when the weather was hot. When my body temp when up, I got too much of a dose…not good. So I had to give that up and go back to Nucynta, which works ok, but not as good as that patch! I’m also taking 600mg of Lyrica still and Amatriptilyne at night. All this manages my pain at about a 4 or 5. sometimes a 3, on a really good day! But it has become my new normal. I can’t remember a day without pain so you sort of get used to it. But sometimes I will have flares. That is when the pain just goes crazy and the meds don’t really help. They can last a couple of hours or a few days. Fortunately I have learned what causes them and I don’t get them as often. They can be brought on by stress very easily, so I gotta keep cool at all times hehe..Also, certain music. No country / western! LOL! Barometric pressure changes. Can’t do much about that one. Cold fronts kill me though. So winter sucks. Wonder if I can get a prescription to move to Hawaii?
So anyway, things have gotten worse in some respects but my hand is actually better as far a mobility. So that’s something. As most of you know I saw a neurologist that was supposed to be promising. Well after all those ‘likes’ on FB it did not work out for me. His diagnosis was way off base and I will just leave it at that. Needless to say it was very frustrating. I now have an appointment with a Dr. at USC very soon. He is a specialist in treating CRPS so we are hopeful he might have some creative ideas. What I am really trying to do is get away from popping all these pills. I mean I know at this point I am dependent on the opioids so that is going to be a tough one and Lyrica has withdrawal symptoms too. I’m gonna be one strung out spaghetti mess! But I look forward to the time I can get off this shit. Being in a foggy pain place all the time sucks!
So I went to a CRPS conference up in San Francisco last month. It was well worth the trip. Learned a lot about some alternative treatments and the use of opioids for pain management and how they eventually will make you more sensitive to pain. Hmm. Met a lot of really nice people all going through the same thing as me. Some way worse off than me yet they were able to come anyway. Amazing! It really opens your eyes when you get around other people that are going through the same thing. You know your not crazy for feeling a certain way or a certain thing. And everyone was so nice! Here there is a room full of people in horrible pain and everyone is happy to be there…I took a lot away from the conference…and I didn’t take any notes…
So I think this thing has changed me. The meds for one thing. I can’t remember shit. I forget peoples names that I have known for years. I start a conversation I can’t even finish. I’m talking a lot, but I’m not saying anything! Oops, sorry…Talking Heads creeped in…but it fits beautifully! They say part of that is due to the CRPS and not just the meds…ok. One thing I noticed is with the very little driving I do is I don’t care if someone cuts me off or does something stupid. I just wave a smile. Normally I would have the finger out with a vengence and would be spouting things like “stoopidmuthurfukurpeecofshhiittt!!!” But not now, gotta stay cool at all times…..Peace…