I've not been on the forum for a while now. My RSD had a major flare and spread & one of my friends killed herself as she couldn't cope any more with her RSD, it's been a really upsetting & trying time.

I saw my consultant on Monday & he said he wanted to do a lidocaine IV infusion asap, the waiting list is a month+ to get it. I got a phone call from the hospital today I'm going in for it tomorrow morning straight after physio... and I'm very scared, are there any precautions I can take to stop the IV sight from also getting RSD in it? I already have it in both legs, left arm & left side of neck & I'm still in flare....... I really don't want it in my right hand from the IV. The consultant says it's the only way to bring my pain under control & he's said it'll only help for a couple of weeks, so I'll need more. BTW I live in the UK & we don't have many options for treatment available to us.

Thanks for any advice xx

Wow Cinders999...I am so very sorry that you have been having such a hard time and your friend passing is alot to deal with on top of all the rsd junk. I have had lidocaine and ketamine and with the lidocaine after I got out of the hospital I was able to use my bad foot/leg which I had not done so in a year and a half so for me it worked. I did have alot of exhaustion and was tired esp the first month with it. Dr. S uses Mexelitine which is normally used for cardiac patients but with rsd is works like Lidocaine and blocks alot of the burning pain. I used Mexelitine for several years the only side effect I had was that it causes blurred vision which I had for years and I thought once I stopped it it would go away but unfortunately it did not. I continue to have blurred vision and now wear glasses to read. It was hard to have this happen as I never wore glasses and always had 20/20 vision. I guess with everything you have to weigh good with bad. I do know I was in the hospital for five days with lidocaine and they had to change sites a few times which was not pleasant but oh well. I did almost pass out the second day. You may want to have a commode close by so you don't have to be up long.

I am happy to say I have received a miracle from God as my rsd is going into remission after several years. I will not take any more invasive treatments again. I have been doing iv's of natural vitamins and trace minerals for about a year and a half...after a fall in neuro ICU (their fault) which almost killed me along with a cold turkey withdrawl of fentanyl. It was a bad time. BUT I got off fentanyl and currently take 1/2 muscle relaxer and melatonin to sleep but NOTHING ELSE. That is a miracle. It has been a long prayerful journey and I am growing each day but my burning pain is real low except right before any rain it seems to increase but nothing where it was before. I am praying that God will allow me a complete healing in order for me to help others through their journey. I hope all goes well with you and NEVER GIVE UP HOPE!!! Keep positive and laugh alot and you will be fine. It seems like England and the U.S. are the same in that we don't have many options here either and if you can do one thing it is just about impossible to have it done as the ins co's don't want to pay for anything. They would rather see you suffer and take lots of meds the rest of your life. Amazing we are supposed to be so advanced and yet in some ways we are not. Best of luck to you.
kathy d

Given that you will only get a couple of weeks relief and that you have already experienced a spread it is a lot to weigh. Have you considered a course of tDCS to see if you can get your pain under control? It is non-invasive, painless, low risk and quite effective if you are a responder.

If you are not totally comfortable with the plan for infusion maybe postponing it would be helpful for you to do your own research, ask more questions of your doctor, maybe get a second opinion and explore non-invasive treatments. You can always reschedule your treatment if you decide you are comfortable with it.

I had lidocaine infusions before with no success. How did yours turn out?

I know this thread is old, but for those who haven't had it done it... Perhaps they could numb up the IV site with lidocaine prior to insertion. They generally use a tiny shot of lidocaine first. I've had that done when I needed very large IVs placed in my hand. I didn't even feel the IV then.