5 years out - Chronic Pain
 

Hi All - It's been awhile since I posted but I do lurk to see how everyone is doing. I am coming up on my 5 year anniversary from diagnosis which is awesome but suffer from chronic nerve pain. Has anyone experienced this? It was very mild after I finished all treatments but in December of 2014 it started intensely and lasted almost a month. It's excruciating pain in my fingers, toes, hips, back, etc. - it doesn't happen all the time, I have weeks where I am good, but when it does happen, it's been debilitating.

Been to so many doctors, done so many tests, but no one seems to find anything. I have read posts from other cancer survivors on the Cancer Society website and there are many survivors that have this and it may be chemo induced fibromyalgia.

I feel like I am going insane since all the doctors I see feel I am lying or a hypochondriac! Just wanted to see if anyone has had this type of chronic pain after chemo.

Jessica

Re: 5 years out - Chronic Pain
 

I am so sorry, not only for your pain, but for those doctors who are dismissing your pain and treating you like a liar/hypochondriac.

Just because you've had cancer doesn't mean you can't get fibromyalgia, whether or not the chemo is responsible, this is how you are feeling now and what you are experiencing. It drives me crazy that docs get on a narrow track and can't see that one condition doesn't negate something else happening.

I have not experienced this, but at the very least, is there any way you could bypass the cancer docs, and see someone who specializes in diagnosing/treating fibromyalgia?

I know, you probably already thought of this ... just wanted to let you know I am here feeling frustrated right along with you!

Carol Ann

Re: 5 years out - Chronic Pain
 

I have had fibro for years and honestly, the best things I've found for the pain is Epsom salt baths, ibuprofen and getting enough rest. Cancer has kicked it into high gear, but I also take a lot of supplements to counter act the toxicity. Stress and fatigue are your worst enemy with fibro. Find a naturopath to help you�� best wishes!

Re: 5 years out - Chronic Pain
 

Hi Jessica,

I'm sorry you're having to deal with this. I noticed the last comment on your signature is that you're on arimidex and I'm wondering if that's the issue. My guess is that it is at least contributing to the pain and discomfort. I was taken off of it for other reasons but I did experience significant pain in the areas you mentioned while on it. Once off of it things went back to mostly normal (some cancer treatment side effects are harder to shake than others).

Good luck, I hope things get better for you soon.

Re: 5 years out - Chronic Pain
 

I had fibromyalgia before BC, it went away during treatment (chemo killed it, according to my homeopathic dr.). Came back after treatment. I have been seeing a homeopathic dr. (okayed by my onc. and now GP) for a number of years, she has gotten me off many meds.
I take two homeopathic remedies for fibro - Rhus Tox and Arnica. Major relief for me. I would highly recommend seeing a homeopathic dr., of course have your onc./GP okay it. My GP has been so impressed with my homeopathic dr., she has sent a number of her patients to her for various reasons that she cannot help with conventional medicine (things like weight loss, help with tapering off anti-depression drugs, etc.)

I also find Epsom salt baths and ibuprofen (occasionally for me) help.

all the best
caya

Re: 5 years out - Chronic Pain
 

A friend has this induced by chemo. Lyrica helps her. Maybe it can help you.

Re: 5 years out - Chronic Pain
 

Thank you all so much for responding - this website and all the support has been such a blessing through my cancer ups and downs! I hired a new concierge doctor yesterday (a new practice popping up in my area) and he was very diligent in listening to all the issues I am having. He had already accessed my medical records, studied them, and was ready to go with a plan of action! He is looking into several things so I'll keep everyone posted on what we find out. Hoping for some relief from the pain finally!

Jessica

Re: 5 years out - Chronic Pain
 

Great news, I am so glad you are getting help!! Keep us posted!

Carol Ann

Re: 5 years out - Chronic Pain
 

Jessica,

I have developed a brand-new theory that chemo might bring on "MCS," or multiple chemical sensitivity. A lot of things that cancer survivors report are identical to MCS, including "chemo brain."

Watch this video: https://www.youtube.com/watch?v=aJuBuXXMaiA

It might not apply to you. It certainly ties everything together for me. I have had several significant mold exposures since my diagnosis. Most recently, I was sleeping in a bedroom with a toxic "bloom" of mold in the week I started back on a taxane chemo.

Avoid fragrances. Get an air purifier with a HEPA filter. Get a vacuum cleaner with a HEPA filter and use it on everything. Maybe wear a respirator with a P-100 filter when you clean. Get a good range hood and use it every time you cook. Make sure all your cleaning products are unscented and "green." Use unscented laundry detergent, body wash, hand lotion, etc. Avoid cigarette smoke, gasoline fumes, pesticides, air fresheners, diesel fumes, perfume, incense, chlorine, hair spray, spray deodorant--anything with an odor. Figure out if you have mold in your house and get it remediated.

Eat only fresh or minimally processed foods and make sure you get a lot of antioxidants and anti-inflammatories. Take fish oil. Drink plenty of water.

I hope it helps. . . .