Hello everyone...
I survived stage 2 colon cancer. I had 8 rounds of adjuvent chemo with little or few side effects. 2 weeks after completion of chemo, I developed excruciating pain in my right arm and fingers but only at night. Because it was one sided and my toes were not tingly, the oncologist dismissed it as possible disk issue (the pain seemed positionally triggered). However, he did prescribe neurotin and urged I wait a few months for chemo effects to die down (months!). In time, it got worse. Both hands effected. Mostly feels like a truck is parked on my arm and my middle finger is set to explode. (Other fingers also hurt). It starts off as fingers tingling and ends up as pain (crying and tears and lack of sleep are a consequence). The oncologist seems perplexed ad to why it's so bad at night (during they day I may have tingling and numb feeling, but no pain). Does anyone else have similar symptoms? I will say I have some osteoarthritis and my hands used to fall "asleep" frequently at night (before cancer and chemo). Is pain typical of PN or am I just a lucky gal to get an uncommon manifestation of pn?
Funnyfingers

Hello FunnyFingers. I am new to the group also. I have had SFN or PN and Autonomic neuropathy for 3 years but have only been diagnosed for under a month. Yes, the neuropathy is worse at night. I have pain all day and night but I think I notice it more easily at night because it is quiet and I have to really concentrate on trying to sleep. They are others on here that can help you more than I but I wanted you to know that someone did read your post. I wish you all the best. God bless! K.

--do imply a compressive effect that increases or decreases with mechanical position changes. This may be in the cervical spine, or it may be in the nerve pathways farther down--the elbow and wrist are particularly sensitive choke points. Or it may involve multiple areas.

And, unfortunately, chemotherapy is notoriously neurotoxic. The effects generally occur during the therapy, with some improvement over time after the chemo is stopped, but not always.

You may be experiencing what is known as "double crush phenomenon"--nerves already compromised by some systemic cause, such as chemo, are then compressed mechanically and the symptomology is "greater then the sum of the parts". Have you had any imaging or nerve studies to see if there is compression, and where it might be coming from? It would seem a cervical MRI would be in order, as would a nerve conduction study and electromyography of the limbs involved.

Thanks for the replies -

Yes, there is pain at night. It's not that I'm distracted during the day. The restful, prone position turns simple tingling to searing pain..I can feel it coming on and I only get some relief when I stand up and walk. The longer I allow the pain to take over, the longer I need to walk to get rid of it. I have suspected that I may have entrapped or compressed nerves in my elbow or wrist, but it was never a huge problem until the chemo. Clearly the chemo aggravated (to say the least) an already compromised nerve situation.
Aside from gabapentin and lidocaine patches it seems my oncologist would like the prerequisite 3 months to pass before doing MRI or other studies. I see his point, because between 3 and 6 months, whatever chemo effect is going to leave, will start to leave by then, and might as well take further action with what's left behind and has the possibility of being permanent. None of this started during chemo and there is hardly any pain during the day- so I wonder if those small facts indicate the future of chronic pain for me. Everyone says to be patient, but it's very hard when every night, for several times, I wake up crying in pain. I have a high threshold (I almost never take pain meds, even after surgery), so its a deep searing pain I'm expected to endure for months.
But the reply posts have helped. At least I know I am not crazy (well, not about this anyway! Lol)

One reason pain is worse at night when not moving around is because of how the pain fibers are set up.

There are 4 major ones each with varying degrees of insulation/myelination. From thickly insulated (and therefore the fastest) to no myelination which are the slowest.

This link explains better:
Neuroscience For Kids - conduction velocity

The C fibers are very slow and will be unable to get your attention as the A-a fibers are the fastest, and get priority over the other 3 because the biological system evolved to do so.
We have to have constant attention to where we are in space, and moving either slowly or quickly. This is called proprioception.

The C fibers also are divided up, into heat receptors and cold receptors. Cold ones subsume the hot ones, and that is why cold
helps pain, and also why menthol helps topically for PN and minor pain. Menthol is a biochemical stimulant of the cold receptors.

So when you get up in pain, and walk around, that is what is happening. The burning is still there, but your proprioceptive A-a fibers are getting all the attention.

There are topical things you can do... There are topical lidocaine containing products to rub into inner and outer wrists. Apply Aspercreme Lidocaine lotion/cream to your wrists and top of the hands and go up the arms a bit if necessary.This may take down the burning you are having. A little goes a long way. Don't apply to the inner hands, because the skin is too thick there to let much lidocaine in. The nerves enter the hands at the inner wrist
at the carpal tunnel. You can experiment with the inner hands, and depending on how thick the skin is on your palms it may work or not. I have good results with applications at the inner wrist myself.

Aspercreme Pain Relieving Cremes and Gels: Pain Relieving Creme with Lidocaine

Avoid hot baths, showers, hot tubs, heating pads, saunas, steam rooms, as these trigger the heat sensing nerves, and create a pain cycle that is difficult to break.

Did your chemo involve injections into your arms? It is possible that nerves there were damaged by the drugs, or even the blood vessels. Years ago I had IVs containing Aldomet a blood pressure drug. When I had my C-section, during the recovery I had terrible pain in my arms, and swollen hands etc. The doctors then said that Aldomet caused a vasculitis in my veins. I still get mild tingling in my hands (they called it a residual carpal tunnel), but it is not severe or everyday. I can live with it. I have braces to wear if I overdo gardening or using my wrists with tools, etc.)
But after my C-section it was over a year before I was mostly back to normal with my arms and hands. I do recall that after the surgery, my arms were worse than my abdominal incision which was a long 15 incher!

Yes the chem drugs are a main cause of neuropathy. Even more so I would think if they leaked out of an IV into the tissues where the needle resided. Statins for cholesterol and fluoroquinolone antibiotics like Cipro and Levaquin are huge offenders as well.

Nice to meet you and welcome to the group !

I got more help here when my small fiber neuropathy knocked me down than with any doctor. Great group of people with a lot more knowledge than I have !

I received 6 chemo treatments of taxol/carbo ending in March 2013. A month after that I could barely walk without severe pain in my feet. My oncologist wrote me off and said it was not the chemo. I did experience some very small tingling issues during chemo but no pain.
Went to my PCP in May 2013 and she immediately said neuropathy and started all the blood tests, x-rays, nerve conduction studies and the electro thing on the limbs.
All tests blood tests were normal.
X-rays showed issues in my spine but specialist determined no compression that would lead to neuropathy.
Nerve conduction and electro normal except for carpet tunnel showing in right wrist.

I have to be honest.....I had to be my own advocate and chase the reason down. Started with neurologist who started me on gabapentin and I was still on the Norco my PCP prescribed. Which the neuro didn't like but never told me not to take it.
Neurologist said no to biopsy at the time and wanted to wait.
Well I didn't want to wait and had already seen an ankle/foot doctor. Called his office and asked for skin punch biopsy.
Done in Sept and was positive for severe small fiber neuropathy.

So I pushed and had my dx within 5 months. Was advised to see a pain management specialist and finally gave in in Sept/Oct 2014.
Still with pain management.

Still in pain but nothing like 2013.

I also changed oncologist because I felt mine was only trying to cover his you know what. Heck I wasn't blaming him in any way I just needed help and he did not provide that for me.
My new oncologist is wonderful and wish I had used him in the first place.
Hindsight is 20/20 in so many situations.

My story doesn't mean this will be your path.

Everyone is different and I will pray that yours gets better and better every week until you have no more pain and can get on with your life.

Please keep us posted. We care

Debi from Georgia

Just wanted to update you all. Prior posts were correct, I have 2 things going on. A sort of double crush on my nerves. I have been diagnosed with carpal tunnel. Without the inflammation from the chemo, I might never have had symptoms. However, the narrow space caused the additional nerve compression, and thus, extreme pain, especially at night, when inflammation is worse.
The wrist bands and supports don't work, but steroids did help. While on a temporary 2 week dose of oral steroids, I got cordizone shots in both tunnels. Hopefully this will manage the pain until il the inflammation from the chemo is reduced, in a few months. If not, I guess, snip snip!
I still have tingling and numbness in fingers and sometimes toes (from the chemo), but the pain has been managed and I can finally sleep. I'm hoping the neuropathy also subsides eventually, although in many cases it is permanent.
Oh and , no hot baths either. That made my neuropathy worse. Oh well, I guess cool showers will have to be the norm.

Take care all. : )

Glad things are improving for you Funnyfingers. I hope your inflamed nerves will heal on your own, without surgery to decompress them. There's never any guarantees with surgery, so it should obviously be a last resort. But at some point you gotta do what you gotta do to try and get some relief..........