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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board


Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index


Hello everyone,
I've haven't posted in a couple weeks -- My doctor appt is this coming Monday and I've been pretty darn stiff -- It's kinda weird actually. It's very difficult to get up in the night to go to the bathroom. It's always taken me a bit longer to get started from sitting position -- For example, getting up from my car, sitting at a restaurant, being in my desk (I work in a 6th grade room), etc but anyways, it's so weird. My hands are stiff and sore and things like this just never happened before my diagnosis of RSD. I'm just over 1 year and I was diagnosed early so I know I'm very fortunate.
There's a gal named Michelle that has posted about a lidocaine infusion and that it helped her very much. I'm hoping to hear from her before my doctor's appt so that she can give me information about it -- I discussed it at my last doctor appointment and he said he'd get me an appt with an anesthesiologist to see if they could do that. I'm not having tons of that awful electrical type of pain, but I hurt and my nights can be pretty bad.
I would really like to talk to anybody who has had that lidocaine infusion because I'm off work until the 5th or 6th of January so I have time to do it. The bigger question is whether or not the doctors will do it.
The weather has taken a turn also so I'm wondering if that's why I'm much more sore and stiff than in the past few months. It's beautiful and clear, but much colder here in San Diego County.
All of us have so much to deal with -- I'm grateful for this board because you all have helped me so I just wanted to say thanks.
Everybody take good care,
Deb
Hi Deb,
I'm glad to see your post as I was wondering how you were doing ! I hadn't seen a post for a couple of weeks ...I, too, am going to ask my P.M. doc about lidocaine infusion as it has proven to be so beneficial to Michelle who has written so much about her success with it ! It would be interesting to compare notes on what our doctors think about the procedure, etc. My next appt. is either on the 6th or the 15th depending on some circumstances! My doctor keeps talikng to me about a spinal cord stimulator but I am not ready for that..
I am glad the electrical sensations aren't too bad for you these days, but sorry to hear about the stiffness!! It could very well be the cold weather! I went out in my flip flops the other day with out socks ( I can only wear this one pair of flip flops ...I even have to wear them to work with socks! because of the softness, I can't even wear my crocs any more! They are too hard on the ball of my foot) it was a very cold day and I had a terrible flare-up of burning pain and terrible pain in general..it may have been the cold!! Then I did a hot epsom salt soak last night and had a terrible burning pain flare-up after that so I am thinking I can only handle tepid temperatures of anything on my foot!! I doubled my neurontin dose at bedtime last night because I had to have some relief.
The stiffness in your hands may be from the cold as well...I know that because I am unable to walk except for only a few yards, my whole body feels so stiff from lack of exercise...my walking ability has decreased so much in the last month, mostly due to the bottom of my foot..the nerves are so wildly sensitive..not the skin, but the nerves! Walking also causes a burning pain flare-up. What a catch- 22...Mobility is of the utmost importance but movement creates a flare-up...Yikes....
I am so curious as to what my doc will say about the lidocaine infusions..then there is the insurance to deal with..this is a WC case..I am only hoping I can make it through work which starts up on Jan. 5th for me, (I have 12 days off!!) as I must keep my job!! Like you, according to some past post I've read, financially, I have to keep my job!!
It was good to hear from you Deb..I hope you had some enjoyment during your time off from your Special Ed job!! I know the time off is so precious!!!
Hugs,
Tigerlily
Hi all,

I, too, would like to find out more about the lidocaine infusions. I had my first SGB on Chirstmas Eve, but slowly but surely the pain is back. Especially at night. My hips and legs ACHE and burn when I lay down. And my hands and fingers are also getting stiff. Our weather in the NE is warm but wet, the snow is mostly gone. Maybe it is the dampness. But I feel much worse now than I did a month ago and it's scary.

I am also trying to find info regarding ketamine, I have an appt with Dr. S. in Philly a year and a half from now. I am hoping that more doctors are finally offering them, I heard that they might have it at the Beth Israel in Boston. I plan to call them tomorrow to get more info.

As my injury is WC related, I have no idea whether these infusions would even be approved...but if they provide a way for me to get better before this monster spreads even more and becomes more intense, you would think the insurance company would be less likely to deny them. But then again, maybe not.....


Have a good night, Sandy
Hi there, it has been awhile since I have been here.. Happy holidays to everyone, please excuse the long post.

I have been getting lidocaine infusions since May of 2008 and I fully recomend this for anyone with RSD/CRPS. I have full body RSD.

Before I started the lidocaine infusions I spent alot of time in bed and my clothes hurt me a whole lot more than they do now.. I could not tolerate a breeze on my arms or the water from a shower without my pain levels going sky high, the lidocaine seems to realy help these types of symtoms for me and it lowers my general overall body hurts.. it is hard to explain.. but it has been a real godsend for me.

I get lidocaine infusions every 3 weeks. They first start you out with a test dose to see how well you tollerate it, this is given in an IV procedure, and the symptoms can include headache, nausia and blurry eyes, tingly lips etc :dizzy: .. you let the nurse know when you notice any symptoms so they turn it down and they know what dose to start you at.. it also goes by your weight.

Then they will take out the IV and it should help for a few days ;) or more, and they will ask you to return for an apointment in 3 weeks to a month.
At that apointment they should start the regular infusions, these are done via vacume sealed IV bottles that fit in a little fitted sack that clips to your clothing. My sac says "Pain Pump" some just have the name of what ever med compamy makes them, they are quite small and discrete as you will wear them home.

The Subcutanious Infusions were first placed in the fleshy part of my upper arm's (we switched sides each time) via a tiny needle and tubing, the needle was quickly removed leaving the miniscule butterfly tubing taped up and attached to the tubing that goes to the vacume sealed bulb of lidocaine (looks like a baby bottle with a bulb in it lol)

These infusions work on an infusion time vs weight ratio, they need to be infused slowly.. the slower it goes in the longer it'll last is what I have found, my infusions were suposed to last 10-12 hours (each one has a specific time aloted) but sometimes mine go through too quick and it dosn't last as long.

hope this helps,
Sandra
What have you heard about Lidocaine infusion therapy ACTUALLY working on RSD? My Neuro is working with an anesthesiologist from a NY pain center (no name of course as he forgot whilst I was there today) to start me on Lidocaine infusion therapy ASAP!? Do you know anything about it REALLY & TRULY working for longer than they've got you hooked up?!?!? I know I've tried it personally and it does work but only while its in me and so my last anesthesiologist wanted to have a pump implanted with it but they didnít have enough medical team educated enough to watch me round the clock should something go awry with it. I don't know if this new MD has something different to offer regarding the Lidocaine but I'm assuming they're using the same guidelines'. Which when looked up - says it lasts as long as they've got it in you. Which is false hope!!!! Circling right now for answers and am not finding anything good at all out here, nothing new there. Any help at all is always appreciated!! Thanks in advance
~h
Hello, I have had several lidocaine infusions and after the last one they put me on a med called Mexelitine which I have had great luck with. It made the infusions last longer and my RSD in arm is much better, in fact if I miss a dose my body seems to let me know! I have also heard of lidocaine patches and used them as recently my RSD spread into my right leg due to another accident. When trying to drive it would aggravate the RSD and I was completely unable to use the leg at all. With the patch on my thigh I could cope with the drive as I have a son with a kidney transplant which then gave him cancer so I HAVE to drive. We are currently trying to decide what to do for further treatment and actually meet next week but had to have and emergency block yesterday to be able to walk! I don't know if I would agree to a lidocaine pump as a morphine pump is one thing we have thrown back and forth. I hate pills but they make me feel as if I have some control whereas with a pump you have much less control. I have a friend that has one, I will ask her how she likes hers!

Good Luck!!! Hope for pain freee days for everyone!! Lisa
:) glad you took the time to read and write!

I'm not being offered or receiving the pump...they wanted to last time however there were not enough medical professionals around to care for such a pump 24/7/365. And so it ended there. That was late 2007. MY pain MD at that point retired and I've been kind of screwed since. There was nothing like her. Anyhow my neuro is reinvestigating the infusions for me. I hadn't heard of this medicine though. And as was not aware that that would be protocol. I thought it was just the infusions and then you'd need follow-ups. Did they make you get off everything to get going? I'm off pretty much everything as a personal choice as nothing was helping just making me comatose. So I opted off it all cept for 3 percs a day and some baclofen and diazepam for all the tremors and bs. Interested in hearing more. Sincerest thanks ~h





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