Nerves

[mazsa]

Has anyone found out the best way of coping with peripheral nerve damage, mine is chemo induced and is affecting my feet & lower legs & it hurts like hell. I started taking amino acid tablets & saw an acupuncturist today. Just trying to walk hurts so if anyone has discovered something else that helps I would love to know. Mazsa

[wombat4]

Hi Mazsa, My wife had neuropathy in her hands, but only a slight tingling, she was on Folfox and its the Oxaliplatin that causes it as you probably know, she had 8 cycles of Folfox. Thankfully It never got to her feet as yours has done, changes in ambient temperature can start it, car a/c, sitting outside, Fridge / freezer should be out of bounds if possible, keep gloves handy as some shops have cold a/c, try to keep away from the freezer ares in shops because that can be an instant temp drop of some 10 degrees I was also concerned about dryness in her skin, particually hands / feet, so every night for one hour for 2 years, we would sit down on the couch with her feet on my lap and I would GENTLY massage her feet with Sorbelene. She would do her hands. I am not sure if this helped prevent the neuropathy from increasing, but it didnt get to a point that caused a lot of discomfort. It certainly prevented any skin cracking and dryness. Dont forget to mention the acupuncturist and the amino tabs to your oncologist. Best wishes wombat4

[SILLY]

I take Lyrica for post-operative nerve pain. My surgeon ignored it when I complained of it but my gp prescribed it .I've been on it for 18 months now. It is expensive and not on the PBS. I have reduced the dosage recently and hope to further do so . Lower doses have reduced side effects and are cheaper. I am not suggesting this is what you're after but there is this and other drugs for the problem . Ask tour oncologist as he/she should be addressing it if it is caused by his/her treatment. If you are not satisfied your gp may be able to help you.

[david71]

i have had neurapathy for 10 years getting worse every year my feet hurt to the point when it wakes me up and now my fingers start to hurt unnfortunately i work in construction so i have to work outside i havent had lyrica does it work and can i get it on perscription or do i have to buy it ,i have tried mostly every thing bar this and would like some help please

[mazsa]

Hi David, I haven't tried lyrica but what I have read about it and the side effects I don't want to try it. I use L-Glutamine, Methyl B and Alpha Lipoic Acid to help ease my peripheral neuropathy & it is working slowly but surely and all are available from a health food shop. I also have acupuncture from a qualified acupuncturist who specializes in nerve control and was trained in China again this is also slowly helping to ease the pain and heal my nerves. Hope this is of some help or use to you

[SILLY]

My surgeon and my rad/onc. ignored my complaints about nerve pain .A nurse told me to see my gp about it. The gp prescribed Lyrica but did say if it doesn't help there are other medications to try. It is expensive .The cheapest I found was $112/ month for 150mg when I took it twice a day but the 75mg is cheaper. Cost depends on dosage .We claim it on our health fund and get back $35 per script, no matter what we pay. It also comes in 25mg. I know it helps me . Before I took it I was so depressed ,having to put up with the pain and the weird discomforting sensations. There are side effects but for me minimal. Ask your gp about trying this or another medication. None will be on the PBS so all will be costly. Quality of life is what it helps with. I still get the minor pains etc. but that is mostly when it's time for another tablet. Certain activities seem to trigger the pain . I sometimes think it will never go away. I hope this helps a little. Let me know how you get on.

[SILLY]

Your pain must be bad to wake you ,worse than mine by far.

[exhausted]

Hi all I take endep for nerve pain following a back injury, helps a lot and it is on the PBS.

[SILLY]

I would try what is on the PBS first rather than Lyrica. My gp had not told me that there is something on the PBS. I will check it out.

[SILLY]

Just googled Endep and on both sites it said that it is prescribed to treat depression. Sometimes drugs can do more than one job,depending on the situation. I guess it suits your situation,Exhausted.

[exhausted]

Yes silly thats correct but is used at a lower dose for nerve pain. My doc started me on it in the hope it would work as Lyrica is so expensive so we would only go there if I got no relief from the endep but it helped me a great deal.

[mazsa]

I replied to you before that I had read about lyrica and opted out of trying it. I saw my oncologist yesterday and started on a low dose lyrica today. It is available only by script and is not on the PBS list. I am on 25mg twice per day and it cost me $41 for a months supply. Apparently it is the only thing that works but the higher the dose you go the more it costs and the more side effects you have. Talk to your GP it may be the only other movement left for you to try but I know my oncologist is very positive about it. Mazsa

[mazsa]

I started off suffering with edema in my feet and ankles waking me now its just the neuropathy and it mainly keeps me awake but I started on a low dose of lyrica today so hopefully soon it will start to ease off and my sleeping patterns will get back to normal

[SILLY]

Glad to hear it. I know some medications work for very different things sometimes. Lyrica is used to prevent convulsions in epilepsy mainly.

[SILLY]

I hope it works for you.

[mazsa]

So far three days on Lyrica at 25mg dosage and have already noticed the difference as in the pain is greatly reduced but I am still seeing my acupuncturist who is now concentrating on my toes as that is where the main problem currently is,still really bad pins and needles and a burning sensation, I still have some aches in calves & mainly right leg to and including the knee. My oncoligst has told me that it may take up to 12mnths for it to go away and then again it may never stop. Right now I'm happy so far and I'm off to a Country Music Festival on the weekend so really need my legs and feet operating as I'm going to be on them a lot and wearing low heeled boots in comparison to living either barefeet or just wearing thongs.

[purpleangels]

There is also gabapentin which is not on PBS but cheaper than lyrica. My husband gets Lyrica through the hospital pharmacy- he did a day at Lismore Pain Management Clinic and they order the Lyrica through there and have it delivered to Tweed hospital. It only costs $5.80.....as he has a health care card again. Maybe investigate going to a pain management clinic and see if they can sort it for you....... PA

[SILLY]

Good news!I wish I was going to that festival with you. Enjoy.

[SILLY]

If it is not on the PBS maybe he is having it subsidised by the state government or the hospital. I have a health care card too but for medications not on the PBS it does not help. From what I read both medications are similar but Lyrica works better for more people . The other works better for some. I will enquire about the one you mentioned .I have accepted that I may take this for a long time,maybe forever but I hope not. I started on 25mg twice daily and got some relief but not enough. I moved to 75mg twice a day,then 150 twice a day. A few times I tried to swap a 150 for a 75 and finally am managing on 75mg in the morning and 150mg in the night. My next try will be to get to just the two 75mg a day. I get the pain still and it's on and off but I can cope easily. Being pain free or almost pain free means quality of life . I would choose that over an overseas holiday or any luxury. This year I am investigating plastic surgery to my eye which was disfigured from cancer removal. If it is possible I will feel a lot better emotionally.If not I will accept the way it is .