NeuroTalk Support Groups - CIPN - BURNING please give feedback or help!!

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CIPN - BURNING please give feedback or help!!

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 ❤️:Help::Help::Help:

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

Quote:

Originally Posted by LisaPeach (Post 1202771)

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 ❤️:Help::Help::Help:

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.

Hi Lisa....I also live in GA :)

I am so sorry you are going through this. I have not met many that have the chemo induced. I went into chemo pre-diabetic and then with the large doses of carbo/taxol (for papillary serous uterine cancer) it seemed to fry all the A and C fibers in my feet. My skin punch biopsy results were 0.00 and 0.06 on the 2 punches they did right above my ankle. My official dx is Severe Small Fiber Neuropathy.

I had very few neuropathy symptoms during the chemo but he did lower the taxol 50 mg after my 2nd of 6 treatments. It was not until almost exactly one month after chemo ended (March 2013) that the pain in my feet got so bad I could hardly walk. I went to my PCP and she immediately said 'neuropathy'. I had no idea what it was. Went through all the blood work and MRI of neck and back and the test where they hook u up and zap you and then stick the needles in your muscles :eek:. They could find nothing that pointed to neuropathy.

5 months later I asked my foot and ankle dr to do the skin punch biopsy. He only did it above ankle....I didn't know at that time he should have done probably 3 different places. My results were listed above the lab was BAKO which I haven't seen on here much.

I'll add to your message below in magenta :D

Quote:

Originally Posted by LisaPeach (Post 1202771)

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.
Mine started in my feet and now it has spread to my hands, both upper arms, both legs and my gums (teeth hurt like crazy at times).

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 feet are the worst of all. I have all the crazy symptoms associated with neuropathy in my feet. Some numbness, electrical zapping, severe burning and stinging all the way to my ankles, stabbing in the middle of each foot at the same time, etc. These come and go all day long depending on how much I'm on my feet. My legs and upper arms get this severe, to the bone, aching like when you have the flu.

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.
My PCP told me to immediately file for disability. She had known me for about 5 years and was devastated when she saw how bad I was and how much pain I was in. I was awarded SSDI in Georgia at the reconsideration stage. I found out I was approved approx. 8 months after I filed in May 2013. I cried because I was only 51 and had worked since I was 14 or 15. I felt defeated but now I'm so glad I listened to her. There is no way I could have worked in these last 3 years and I don't see that I'll be able to in the future.
The SFN and pain make me extremely hot and I also have 2 fans on all day long in my bedroom. Sometimes the air from the fan even hurts my feet. Sometimes I sleep with my feet off the bed.
I go barefoot in the house. I also can't wear shoes and when I do I have the slip on sandals that have the Velcro adjustable strap over the foot. That's all I've been able to wear the last 3 years and even they hurt where they touch my feet.

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...
My SFN has not shown to immune related. But my PCP wanted me to try the prednisone......I found that a week of 20 mg really helped when going on vacation and then 6 months later around the Christmas Holidays. But now I don't seem to get much help from it. Have no idea why.
My oncologist would not accept that the chemo had anything to do with my SFN. I changed oncologist after that and my new one knows it contributed to my SFN along with the diabetes.

He has me on 2700 mg of Gabapentin, B1, 6 & 12. Morophine and Hydrocodone.
I take 1800 mgs of gabapentin a day. If I go any higher I hear muffled voices and music. I just changed from the BuTrans patch to ER Morphine 15 mg 2 times a day but it doesn't seem to be helping much and my pain mgmt. dr just told me he would not raise the dose....very upsetting to me to say the least. I'm also on oxycodone for breakthrough pain. 10-325.

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 ❤️:Help::Help::Help:

I have been through so much in these last 3 years and I'm just tired....so tired of trying to feel better.....to not hurt so much.

Sorry for the book but I guess it was time to spill my guts again. All this info is on other posts of mine.

Debi from Georgia

Quote:

Originally Posted by bluesfan (Post 1202906)

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

Siylie/LisaPeach/Debi,

Quote:

Originally Posted by SylvieM (Post 1202940)

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

Totally agree with Gerry

Quote:

Originally Posted by ger715 (Post 1202952)

The ONLY dr that said opioids do not work on nerve pain was my neuro.

I honestly don't know what I would have done without them. Before pain mgmt. I had only used hydrocodone that my PCP had been giving me, not the neuro I was seeing at the same time. Neuro knew I was taking them and never asked me to stop which was a good thing :wink:

When I first saw my pain dr we discussed the different options and agreed on BuTrans pain patch. Started at 5 mcg/hr and slowly increased to his limit of 20 mcg/hr. Along with the BuTrans I took oxycodone 10-325 up to 3 a day.

The BuTrans helped some but I was still not happy with my pain levels if I did 'anything' and I mean 'anything'. So I asked to change and I suggested the ER morphine. He started me at 15 mg but as Gerry said my dr doesn't want to increase that amount. I got so upset at the visit I never got a straight answer as to why he would not increase.

I'm very frustrated at this point and need to get myself together and go in with my own info and figure out exactly what is going on. I've always really liked this dr and he was really nice on Thursday but......I still don't understand why he won't increase to see if that might work.

Debi

Dear folks,

I learn so much here....why I love this site. My primary problems are autonomic and my pain, while spreading, is now (sort of) managed by nortripyline. Yet I know I need to be better educated about opioids. Of course I'm grateful for and defer to all here who have direct experience in this.

I had read that more conventional opioids are less effective against neuropathic pain than less conventional ones...like methadone and levorphanol. I'm wondering if people here have experience with these, as well as ketamine....which is often discussed on the RSD/CRPS forum here.

I also had never heard of hyperalgesia until it was mentioned on this thread.....but it does sound like something to be considered by LisaPeach.

I do appreciate all I am learning.....thanks everyone.

Sylvie

Debi,
My first PM was insistent that I get off the oxycodone I was on and stay with Cymbalta and Lyrica. I felt like bomb ai with Cymbalta. The Lyrica made my legs feel like I was getting multiple bug bites.

At my last appointment with him he went on and on about how being these pain meds weren't good because I would need them for too many years, blah, blah,.......but insisted both Cymbalta and the Lyrica were the way to go. After a month or two with him I started looking for a new doctor. I was not going to stay in "limbo".

I had been seeing an orthopedic doctor who referred me to my present PM doctor which was several years ago. My current PM is what he is all about....Pain Management.

I really don't get it with your PM doctor 15mg's Morphine is obviously too little to even tap into your pain. No wonder there are times it is difficult for you to get out of bed.

As I mentioned previously, I set my alarm and take my meds at least an hour before I am planning to get up.(I take my Oxo ER at regular scheduled times every day.) It is a rare time I have difficulty getting out of bed in the morning and that's only because some mornings, I'm too tired; not because of the pain.

I really hope one of your other doctors, including your Primary can refer you to a new PM doctor. It is best to have a referral from a doctor that knows you because so many PM's do not know if someone is doctor shopping just for the drugs.

You are not one to give up and that's a good thing.

Gerry

Quote:

Originally Posted by jurgen975 (Post 1202924)

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

Hi jurgen

I haven't done too much searching for anyone on NT who takes LDN specifically for chemo induced PN but madisongrrl, who has Lyme disease with PN symptoms, is taking it. Here's links to a couple of her threads. If you search 'naltrexone' you may find more.

http://neurotalk.psychcentral.com/thread230056.html

http://neurotalk.psychcentral.com/thread230056.html

I've been researching it for possible use with autoimmune related PN for myself. I'm going to be requesting approval from my endocrinologist soon to try it. I would suggest doing as much research as you can to see if it might be relevant to your particular situation. Be aware there is a lot of hype on the net as well as factual information.

It's not a miracle drug but for those of us who are unable to take any sort opiates it may be an option. From what I've read it can provide about 20-30% pain reduction. Not a lot for sure but better than nothing - and it's not addictive and has few side effects. .