Had to stop drugs now what???
 

:confused:
My liver function tests were rapidly increasing so I have had to stop the carbamazepine which has left my in so much pain, I have tried gabapentin but it doesn't give me any relief, also had duloxetine but that hasn't helped either.

My arms wrist and hands are agony my feet and ankles are getting worse, I am sleeping with ice packs to ease the burning, I am so tired.

This SFN is just so difficult to manage, I was just about doing ok on the carbamazepine but what can I do now?

Next neuro appt isn't until April next year :(

Very sorry about this. Did your doctor not have any suggestions? You should call and ask for alternatives. April is way too long to wait.

Pain clinic doc has offered a 2nd round of lidnocane infusions but they can't fit them in until mid December, I have to have more bloods and maybe if they are normal I can try a low dose of cambamazipine again but have weekly blood tests to monitor it.

Do lidocaine patches help at all? They seem to help my feet.

What is a lidocaine infusion?

It sounds as though you are desperately seeking something to help until April, or at least December. It also sounds as though your Doctor's are failing you and leaving you to live in pain.

If I were you I'd seriously consider marijuana. I'm not joking. It has helped many. If I was unable to take pain medications I wouldn't hesitate.

Lidocaine is given IV under careful conditions for systemic nerve pain. Since lidocaine is a sodium channel blocker, it works for some.

RSD patients try it, and we've had Malawigirl here get them in UK and post about it.

There is research on Nav1.7 sod channels ongoing.
http://www.ncbi.nlm.nih.gov/pubmed/23232607

http://oicr.on.ca/news/news-releases...channels-safer

There may be an oral drug in the near future. Lidocaine can affect the heart, so it is not an ideal solution. The patches may work on targeted areas, but global burning symptoms can't use many patches a day.

I'm so sorry to hear your feeling so bad. Can you email your neuro? Mine has a patient portal that I can message him though.

I'm not sure if you can take Elavil with your liver enzymes. I just started it and I think it helps a little. If nothing else it helps me sleep. You need rest! I'm always so much worse when I don't sleep!

I can't take amatryptilene as it stops me peeing 😳
I had had the lignocaine infusions in June as a day patient in hospital, I had to be hooked up to bp and ECG machine and had obs every 15 minutes during the infusion. Then there is no driving for 24 hours. It was done once a week for 3 weeks and gave about 5 weeks of good pain relief, so it was effective but quite short lived and takes two days out of my work week so not very convenient but worth it to get rid of the pain at least for a while.

I tried increasing the cymbalta but it makes me feel so ill, I have to lie down all day and the pain is still there so not exactly effective.

It would seem that the sodium Chanel blockers are what works for me as both lignocaine and cambamazipine are those. So maybe that means my SNF is caused by a problem with that bit of my malfunctioning body ????

X2 on cannabis.

While I respect your choice on drugs, I cannot go down a road of illegal drug use, both my husband and I are in jobs that definitely preclude that as an option, so it's prescription only or over the counter for me

I understand, and meant no disrespect. Was pointing it out because its not an option people tend to think of, and in some places it's legal and proving beneficial.

Like you, I don't get sufficient relief from anti-seizure medication (Gabapentin, Lyrica), but if combined with a little Tramadol they see to work together nicely. With that combination my pain is halved, and from what I've read that's about fair enough to expect. Apparently 100% or close to is, in most cases, impossible.

Lyrica takes some weeks to get used to. At first I suffered headaches constantly, but Doctors advice to hang in there paid off as the headaches slowly subsided after about 2 weeks.

Hope you find your solution soon. Different things work for different people. Half the battle here is finding out what works best for you.

No offence meant or taken re the drugs ☺️
I am gutted that the carbamazepine is effecting my liver as it really was pretty good for managing the pain.
Tramadol makes me horribly ill
Gabapentin did work but I have kidney disease so can only take a low dose which doesn't seem as effective as it was.
Cymbalta I take 30mg a day I tried to up it to 60 but was through up and felt faint unless I laid down I stuck it for 5 days and it was not improving so had to reduce it as I have to work.
Back to see my gp soon to see where to go from here. And still waiting for my appt for the lignocaine infusions

Just a reminder, that Cymbalta is also hard on the liver.

Yes I know, I have another blood test tomorrow and if the liver result isn't good then I have to stop that one too 😁