I'm 9 weeks post Tx. two weeks ago I started getting nerve pain in my upper body from my head to my chest and arms. It's as if my skin is over sensitive, much the way my neck felt for weeks after my selective neck dissection. Touching my skin is painful but not in a deep tissue way. It's more like painful over-stimulation if that makes sense. Pain meds don't do anything to relieve the discomfort and it just remains at a 4-5 level and is exhausting.
I emailed my team and got a call back from my oncology nurse practitioner. The first thought was that it was shingles but I have no rash or visible signs and it's been consistent in the level of pain. She said it could also be side effects from Tx and to visit my PCP (he's been keeping up with the teams assessments and reports as I requested).
I visited my PCP today and he feels it's a delayed reaction to the Cisplatin. I have no numbness in my hands but I do have some in my toes, however, I've had that prior due to circulation issues stemming from cardio vascular disease. It has gotten a worse since Tx.
He prescribed Lyrica which I started taking this evening. We'll see if this helps. Has anyone experienced a similar side effect/ailment and what was the reason/cause?
"T"
Oh yeah, for years. I had to wear a cap, long pants, socks, gloves, due t over stimulation of touching or lighly touching something.24/7. I still have to wear long pants, socks to bed. If it's the same, it's neuropathy, and very common with platinum charms. They kills cancer cells, but the good cells too, including fast acting cells, like nerves, hair. I currently take Lyrica mostly at night when the pain a more noticeable. As a result, I can't move none of my toes, feet in certain direction,or flex then, and have difficulty walking, standing still.
In some it may dissapear in two months, and some maynbe longer, even up to 17 years, if it ever gets better by then
.I'm 3,6 years, and its gotten slightly better. Even the wind bothered my head, and reason for the cap.
Some take B5, other B vitamins, C, E, L glutamine, and had no relief with them.
I heard accuouncture may be good, and acupuncturist said they could treat, but before damage is done, around 30 days. I was a coupe hundred days over that.
Light massage may help. And light exercise to get blood in the area.
I noticed weather, and certain foods I eat, drinks , bother my neuropathy more.
Good luck.if there are any typs, I bane the lyrica. Stuff is strong,,but the gabapentin was worse.
I better stop typing on the dark lol.
Paul,
~lol~ about the typing. Dunt werri aboot it
Yes, what you described is what I'm experiencing. Fortunately to a lesser degree it seems. It's as if the nerves are waking up. I was on Gabapentin throughout treatment and my PCP said to try that if the Lyrica doesn't work. I really don't want to start taking that again. My RO prescribed it but it didn't help as much as he said it would due to "set in pain" from my surgeries.
I hope the Lyrica works. I'm already taking glutamine (have been all along) and I'm beginning to work in the natural supps I was taking before treatment (fish oil, glucosamine/chondroitin, B complex).
"T"
Hi,
I had something similiar, though my pain level wasn't quite that high. I ended treatments near the end of March, 2013 and noticed the pains towards the beginning of May. They started on one side of my upper back, stayed there for a while and then 'traveled' its way across the middle and then to the other side. I had a slight case of shingles a few years back and that is what I thought of immediately; no rash ever developed though and after a few weeks (2-4?) it has gone away. I was still taking liquid Roxicet for throat pain and that was enough to relieve the pain, but not fully take away the sensation. I had mentioned it to a few doctors and got that puzzled look like they thought it was in my head. Whatever it was has passed now without any residual effect (I hope).
Best to you,
It could also be part of paraneoplastic syndrome, from the cancer itself; one can see vascular, nerve, abnormal clotting, and other changes as part of this syndrome.
I took my first dose of Lyrica last night before bed. My PCP prescribed tramadol as well. This morning I awoke feeling just as lousy as I was last night. I took the tramadol at around 10am. . By this afternoon I realized 'hey... I'm not hurting as bad'!
The nerve pain has lessened a bit and my shoulder feels much better. I'm able to lift it laterally without the severe pain it causes. I don't want to jump the gun but hopefully the Lyrica will be the ticket to relief.
Coincidentally, there's an article in "Cure" magazine on the subject.
http://www.curetoday.com/index.cfm/...d/9/enableStageSubMenu/3/article_id/2116 "T"
Glad to hear it gave you some relief. Thanks for the link. I have walking, and balance problems. PT used to have me stand straight, arms crossed, eyes closed, and was supped to stand for 10 seconds in that position, and couldn't. I did get better this year.
That feeling of numbness, tingling, pain, etc., in limbs can most likely be nerve impingement/entrapment in the scalene muscles. If the superficial neuropathies are confined to the skin it is exactly what you think T. The nerves are healing, reconnecting, vascular healing is sending more blood there. The posture shirts I wear are designed to stimulate the blood flow and makes it go away. For that excited nerve feeling on the skin I started using Paloxin, the strongest concentration of Capsacian from peppers. It creates a warmth as it excites the nerves and then they calm down. I have that all over and it feels like walking through spider webs. My RO says it is Cisplatin, the MO says it was radiation, the otolaryngologist says both.
