Hi to all and many thanks for all the fine work done on this site.

I have chemo induced peripheral neuropathy which started with my first treatment in March 2008. My arms/hands and legs/feet are affected with burning, muscle weakness, tiny "explosions" of pain occasionally, sometimes flu-like aches, stiffness and general fatigue. I have been taking oxycodone (5 mg) anywhere from 3-6 caps daily for the pain. It is a bit helpful, but not a as much as I'd like. I do yoga several times a week, which helps a bit also and have been trying to walk a little more. I find when I try to introduce any additional exercise or increase what I do that the symptoms tend to flare up. So if I want to add anything, I begin in tiny increments - almost having to sneak it past my body.

Found your forum this spring and began to use the suggested supplements about April 9th 2011. I started with:
B12 (5000 mcg)
B100 Complex
D3 (2500 iu)
Alpha Lipoic Acid (500 mg)
Fish oil (4 caps)
Acetyl-L-Carnitine (1000 mg divided)
Multi vitamin
Calcium/magnesium liquid blend (1200/600)

By early May I was feeling so incredibly well, it was AMAZING! My energy level shot up along with increased stamina and terrific general well-being. I was back to work in my art studio and just couldn't do enough. It was almost euphoria. The symptoms had not disappeared, but were easier to tolerate and I had improved sleep. This lasted a few weeks and then... I began to backslide.

I added some new supplements:
B6 (500 mg)
C1000 complex (2 daily)
Probiotic
CoQ10

Improvements leveled off a bit and have been continuing to go down rather than get better. This strikes me as a bit odd.

Is this a normal reaction? Can I expect to have a roller-coaster ride? I understand that healing is not linear, but is this a bit dramatic? I am curious as to other people's experiences with the guideline supplementation. Today I am so low contending with the pain and exhaustion once again. I just need some sleep as well. What is happening?

Any comments?

Artgirl

Too much B6! Really... most people don't need nearly this much.

Most people should stay at 100mg or below.

PN does fluctuate and the body adjusts to the supplements some.
(just like it does for many drugs).

Also too much Vit C may cause some acidosis...which your body has to cope with. (unless you use Ester C form).

Probiotics may cause a die off of the nasty bugs in your GI tract that you may harbor, and that die off can feel pretty yukky.

Another way to improve stamina is to try d-ribose. Start at 2.5 grams at night for a week or so and see how you feel then. This sugar does not act metabolically like glucose, but does help synthesize adenosine...this is the base for ATP, AMP, and ADP which are made in the mitochondria for energy transfer. Adenosine also improves fatigue and muscle pain in chronic fatigue and Fibromyalgia. I got up to 7.5grams a day...and that took several months. It is a slow supplement, but very nice when it works. You buy the powder and mix with juice or even water...it has no unpleasant taste at all. In the beginning it may cause sleepiness, and this is because adenosine outside the mitochrondria is the sleep signally compound we use to go the bed at night.

I would definitely stop the high B6 intake...this can be very complex because high B6 causes another type of neuropathy! The only supplement that deficiency of or excess of gives neuropathic symptoms.

For me I am on a rollercoaster with pain and symptoms. I will have better times though still with pain but then will fall back into worse. It will be from nothing I can put my finger on. It takes a mental and physical toll. I know some things one can't change can impact us such as weather,stress,anxiety so I try to work on those things to do the best I can to make them better.
For me when I add in activity it is so key to start very slow and work my way up.
Hope you have better times ahead. It sounds like you are working very hard and you should be proud of that

I too am having wild swings and cant put my finger on it. Today I am the best I have been in 6 months with hardly much pain maybe a 2 which is strange but no complaints.

last week my feet were trying to turn inside out along with jack hammer strength pins and needles and deep numbness along with severe broken bone pain. That was very stressful since it just would not let up and couldnt walk far

To make it even more confusing I stopped all meds (just on 10mg elavil and tramadol on standby) so i could get a feeling for the pain threshold so nearly no meds and feel great but it WONT last I know it!
some serious pain swings going on here

oddly enough the pain reduction comes along with substituting green tea for water last 2 weeks. is it possible? green tea? Naaah but nice to dream

Thanks Mrs. D. I had just found the info on d-ribose and was considering it - so I'll give it a try. I am working with an alternative medicine dr. who prescribed the B6 amount - I was concerned and definitely will cut back. I'm thinking that the members of this forum are a little more experienced than she!
Anyway, thanks for your input and I will take another look at what I'm doing.

Daniella - Thanks for the encouragement. It does get a little lonely being out here in chronic pain land. My hubby is supportive, but I know it gets a bit much for him sometimes.
I am interested to know that you too experience that activity thing. It's a strange phenomena. I hadn't met anyone else who did that. Good to know it's not just me!

Hey Zorro13,
Good to know you are having relief for now. I really enjoyed my brief weeks of it. I keep thinking that if I got there once, I can do it again.
I was prescribed green tea by my alternative dr. She feels it is very important. Only problem for me is that it makes me nauseous. So, maybe it is helping. Keep up the good work!

Artgirl..... what do you have in the art studio? You returned to it, and then had a relapse?

solvents...paints? I've been thinking about that.

Thank you for your thinking this over.
I use watercolor and do a lot of drawing and photography.

The last few days my exhaustion has been so deep that I have barely been able to drive. It's like it's incredibly difficult to even move - as if my limbs weigh tons. Sleeping quite a bit. Then, yesterday, I could feel the pattern breaking. I was able to cook dinner for the first time in about a week. There seems to be some sort of cycle in the feel okay for a few weeks then crash for a week to ten days, with considerably more pain levels. I have no idea what starts or stops it. That's why I was so excited when I first started my supplements....and so sad when the positive effects began to wane.

At any rate, everyone's symptoms seem similar yet unique. I'm still very grateful to have found this site. I have adjusted my supplements as you suggested and will see what happens next.

Thanks again for your input.

There is a virus going around that causes a horrible fatigue.

I mentioned it to a friend and she said her doctor told her about it.

I had something 2 weeks ago... lasted almost a week. I was taking naps every day, and then bingo it was over. My friend thinks I had this mystery virus! (I thought it was my old mono coming back to torture me!)