hi cat2000  so sorry to read your struggle, have you tried meditation to help control some of the pain..i wish you strength.. cococat

Hi I take the gabapentin as it helps with the nerve pain but it doesn't always work and I still get "attacks" as I call it, as it comes with no warning and is extremely painful. The gabapentin helps control this but it gives me other side effects such as making me have heart  palpitations , thank you x 

Hi cadon

thank you for your reply!! I am so sorry you have to go through this , knowing how bad the pain can get I really do feel for you. Thank you for the suggestion on the medication but unfortunately I have had the discussion with my doctor which they said at the moment gabapentin if the most effective for the pain and the other tablets have the same side effects 

take care cat xxx

Hi Carollyn

i get the pain in my jaw , top of my mouth and in my teeth. They called it trigeminal Neuralgia. I find that I have to avoid the cold as that makes it worse but not much seems to help (other than the meds) . I used to take Ibuprofen and parecetamal but was told to stop because they weren't having any effect at all. 

I hope the pain decreases soon, it helps to find triggers or things that make it worse so that you can avoid them as often as you can.

cat X 

Hi Cat2000,

I can totally sympathise with you. I was 7 years old when I was diagnosed with Leumaemia, I am now 29 . Like you a side effect of my chemo and radiotherapy is that i have severe nerve pain in my legs. I feel like they are on fire constantly. I never used to be a restless person but since the pain started I cant keep my legs still. I am used to it now and i found that moving my legs alot especially when i am cold gives a totally different sensation that helps ease the pain. I also found that giving my legs a massage with a massage oil that has been warmed slightly helps as well, but please speak to your doctors and an aromatherapy specialist first before you try this as I know your skin can become very sensative after treatment, well mine did anyway. Give your legs time to rest and keep them warm, stick a hot water bottle at your legs when your in bed and it will help settle you and help you get a goodnights sleep. Hope this helps and please feel free to ask me anything, i know how it can be, being so young and having cancer, its not easy. Hope you get some relief.

Kieran

Hi

just seen your post and wanted to ask how your doing with your jaw pain. I've had more or less the same treatment as you and my jaw pain is terrible from the radiotherapy. If I yawn it's agony!! I go to the pain clinic, referred by my GP. The consultant there has put me on amlytriptaline and Baclofen which helps a lot plus I sleep better now. Hope all is better for you now but I think realistically it's something we have to live with some how. 

Take care Carol 

Hi Carol

I have also been refered to a pain clinic, however there is a long waiting list, but they are trying to get me seen as soon as they can. Cold is my biggest trigger, i have been studing from home the last couple of days because i cant stand going out side, and when i do i have to cover my face. The pain itself has still not improved although i am hopeful that the pain clinic may come up with some alternative treatment, as the gabapentin that i am on is causing me lots of side effects that i am learning to manage. I have also been told that the tablets are giving me neurological symptoms. meaning that i may have to come off them which will be a challenge. I am currently reducing the medication which means that the pain is much worse again. However i see it as its got to get worse before it gets better.

on a more positive note i was given some very good news that all my scans are now clear!!! so as you say its just the pain that i have to live with now and hope that my scans stay clear for good.

hope you are well cat2000 x