Help for symptoms while in limboland

[breb2]

Hi there,
Would someone please share some suggestions of what has worked for their nerve pain while in limboland?  I am in the "possible diagnosis".  I have been prescribed Lyrica and have been taking 100 mg twice a day for the last 2 weeks now.  I don't know what the best dosage "so to speak" is because this is new to me and my neurologist said it would work fine.  However, there are times when I am in so much pain I can't sleep and it affects my day to day goings on. Thanks for any suggestions!  

[Udkas]

Hi there and welcome to the MS Forum,
There are loads of people here both diagnosed and in limbo who can relate to your nerve pain and we all take different drugs, Lulu is right, sometimes you need to try a few things before you will find what is right for you.  Please discuss this with your neurologist as chronic on going pain can lead to being very depressed if it's not controlled, well I know I ended up pretty miserable!  

I take Gabapentin (neurontin) and I have had great success with that and very few side affects on the drug as well, which is a bonus, you do need to slowly increase your dose on Gabapentin but it has been helpful for me with pain, It however doesn't stop all the pain as Lulu said nerve pain is very difficult to treat.  

At one stage my pain was so bad I tried a combo of Gabapentin and amitriptyline but I was unable to tolerate the amitriptyline i had it for a week and I was still so sleepy I was unable to function or go to work, but meds have different affects on different people.

I hope you get some relief soon.
Cheers,
Udkas.

[cydpink]

Hi all

I got prescribed Amitriptyline and upped the dose slowly over the course of a couple of weeks - I too felt like a zombie for a while - that has worn off now (sadly as it was nice to actually get some sleep for a change) it helped with my pain but not enough so my GP prescribe Gabenpentin to work alongside it.  Now I still get pain, but not as much as before.

If you are still in pain go back to your prescribing doctor as there are other options out there, it may take a while but I hope you will get some relief soon x

[zenhound]

I'm in limboland too.  My doc has prescribed amitriptyline for nerve pain (trigeminal neuralgia) and help with sleep.  I pretty much take it before bed and it seems to help sort of dull everything down compared to what I was experiencing before.  If you end up getting a prescription for it, make sure to give it some time to get into your system before you give up.  The first couple days after I took it I felt like a zombie (maybe start it over a weekend if you work).  Then it evened out and things are normal now but with less pain and easier sleep.  

[ack65]

Hi there,

I am also in limbo land and have significant nerve pain.  In fact this was the symptom that brought me to the dr.  So far they have given me T-3 (tylenol with codiene) which does little to help but my new GP is waiting for my neuro appt on April 18 before she tries other meds like lyrica.  I have done physio with accupunture which helped somewhat bu I had to go 3 to 4 times a week for almost 2 hours each visit and with kids that's not always possible.  I find resting helps too but again not always possible with  a family.  Sorry I can't be of more help but just wanted you to know there are others out there trying to cope with this type of pain.Anna

[meg321]

Hi breb,

Just wanted to say hin and welcome.  But I do not have nerve pain and hope I never do.
Someone will know something about it...and Lulu is one of our experts on her.

hugs, meg

[Lulu54]

Hi Breb, I don't think we have officially crossed paths before, so let me add my welcome to the others.  It can be pretty slow around here on the weekend so don't get discouraged if you don't get an answer right away.

I thankfully do not have nerve pain, so I have no tips to offer.  From what I've read here, this is absolutely the toughest of the pains to get under control.

You may need your dosage adjusted or even try a different med.  Are you able to call your neuro to discuss this?

hang in there,
Lulu