CAN ANYONE HELP?? Feedback needed!
I have CIPN (Chemo induced Peripheral Neuropathy) from chemo- Acute Myeloid leukemia. I have been dealing with it more since my 8 months of chemo ended in 2014. But it continues to worsen in my hands.
Thing is: I I don't ting or get numb -only burn with an unbearable burn that keeps my hands and feet on fire 24/7. I equate it as best I can as to like a chemical burn with a sunburn on top. I have developed a pain intensity scale of my own depending on the depth to which I burn:
1= top surface burn. 2=a bit deeper burn that is more intense and 3= the deepest burn that almost feels like I'm burning to my bone. My pain never drops below a 7. It's so bad that I can only wear flip flops. I can not wear any other kinds of shoes or socks. I can not handle blankets on my feet and I spend a lot of time on my bed with 1 fan on my feet and 1 fan to the side of my bed on my hands. My quality of life has dropped so drastically. The CIPN has me disabled- at 43.
I've been on prednisone since onset in 2013 to help with symptoms. My oncologist has overseen my treatment after initial diagnosis of CIPN by a neurologist. Before getting Leukemia I only took 2 pills a day: blood pressure and allergy. I do not like pills so...
He has me on 2700 mg of Gabapentin, B1, 6 & 12. Morophine and Hydrocodone.
My oncologist recently said that in all the years that he's practiced, he's never seen anything like this associated with Leukemia and his colleagues have not either.
Is anyone else dealing with this kind of burning with CIPN? I read so much about tingling and numbness but not just burning.
Thank you all for taking the time to read this.
God Bless ❤️

The pain you describe is definitely a neuro pain, I've experienced some burning, nothing as extreme as yours but annoying enough
I can only say I'm very sorry you feel that way, people who didn't experience it don't know how does it feel

I would talk with your doc about changing your meds, as those clearly don't work
You can also research medical marihuana if it's legal in your state
Everything is worth a shot to end the suffering
Hope you'll find answers you're looking for!

Btw check the supplements forum here, doesn't hurt to add few of them as well

I don't have cipn but do have sfn idiopathic. All I can say is it may get better. I had horrific burning all over my body all the time. After about a year it did die down. I still burn but not all day everyday all over. The intensity is also much less and I think I've become accustomed to it. I didn't do anything to make it better. I did take the recommended vitamins for about 4-5 months they may have helped I don't know. But I'm in better shape now ( burning wise). So Keep hop
E

I am sorry you are going through this, I had severe burning from COPD meds for years and I know how painful it is. Mine finally resolved with lower doses but obviously since you are no longer getting chemo that isn't applicable to you.

Do you remember if the pain improved when you started the opiods? I was under the impression they weren't too effective for nerve pain but maybe someone will chime in with more information. Do you feel like the pain has become worse after being on them for awhile? The reason I am asking these questions is there is a condition called opiod induced hyeralgeusia in which your body adapts to the meds and reacts by intensifying the pain sensation, it makes pain worse. You may not have that but it does happen.

I now get temporary burning from some antibiotics so the tendency can 'spread' beyond the initial medication. Do you think you could tolerate the pain without the opiods? I might be inclined to talk with my doctor about the possibility of hyperalgeusia or maybe a neurologist would be of some help.

I hope you can find some relief.

Hi Lisa,

I have probably a medicine induced PN and i recognize what your going true.One of the main symptomes of a chemical induced PN is that it build up very slowly over time so so it probably will be come worser for a period i have have gone true this thing to.

Burning will slowly disappear over time and the pain you have will pas into numbness.
I am now 7 years into this so i know what i am talking about.
There is not much you can do except for taking your suplements on a regulair basis.
I take at this moment 100 mg r-lipioc acid in the morning/afternoon/evening and 150 mg acetyl L-carnitine in the morning and evening and i also take fish oil but not on a daily baisis.
You could also try non-denatured whey protein

There is not much you can do only wait and hope for the best but the burning will slowly disapear take my word for it

Hi LisaPeach

Welcome to NT. Sorry to read you are dealing with such severe neuropathy.

You may want to look into Low Dose Naltrexone (LDN) which has previously been used to help treat chemo induced neuropathy.

Here's a couple of links to info:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3962576/

http://www.lowdosenaltrexone.org/others.htm

Please be aware that if you think this may help you then you will have to stop all opiate based medication prior to starting it.

All the best for finding some effective treatment.

Hi, I lived with Burn/Tingle for 5+ yrs from Femoral Nerve Damage (thigh) from hip replacement.

I was talking to a naturopath at our holistic pharmacy and asked her what I could do if anything and she suggested 4 nerve supps.

FlexNP (Evergreen)
Nervagesic (Standard Process)

Inosine and Sphingolin and I chose
to take these 2 and did for 3 months and burn/tingle
is pretty much gone. Now and then I'll get a tingle
and probably more so when I'm more tired at night.

My thigh is still 80% numb, but the burn is about gone.

I'm open to try just about anything that someone suggests.

I am must say that i am intrigued by this article so wher can i find the stories of people with CIPN and are helped with this drug

Dear LisaPeach,

I also extend my sympathy to you.....

There might be a lot of good information for you on the RSD/CRPS site here....where posters are dealing with severe chronic pain. I'm not sure if you are seeing a specialist in pain management....but it does seem essential you do so now.

Also, what Zygopetalum wrote about a painful reaction to opiods seems to make sense...especially in the context that they are not the best option for neurological pain. Perhaps a PM specialist can help you sort this out and also suggest other treatments to both wean you off and more ably address the pain.

I truly wish you the best in finding help for your situation.

S

I have been under Pain Management for 7or 8 years with the same doctor.

I take Oxycontin ER, as well as Oxycodone for break thru pain daily For the past 4 years, I have been on the same dose. We are all different and what works for one might not work for another. My PM doctor has Never mentioned opioids not working for PN. These meds have made my days at least tolerable.

I am far from pain free; especially with the burning ankles/feet which is usually worsened by being on my feet for long periods. Sitting down with my feet raised on a couple of throw pillows for 15 - 20 min. usually takes the burning level down considerably.

Debi is on a very low dose of Morphine 15mg's, which may not be enough to cover her pain. Unfortunately, her PM doctor does not want to increase her medication to 30 mg's. This of course makes it difficult for her to know whether her pain could be reduced by upping her dose.

For many with PN; the only way to control their pain and lead a more productive life is with medication for pain even if it is opioids .


Gerry