Neuropathy pain?
 

I'm in my 6th week since the neuropathy started, so I'm still sorting things out, trying to figure out what is going on.

These last two weeks, besides the constant burning/tingling/prickling in my lower legs and feet, I started having what feel like muscle pulls/bruises in my thighs/calfs/knees. More of a dull acheing pain in particular spots, but unlike normal muscle pains, they don't go away. I can walk them out usually, but as soon as I relax for awhile, they are back, and don't seem to go away.

Is this related to nerve pain? I wonder if I am just so in tune to everything, I'm feeling pain where before I would have probably ignored it. The fact they don't go away makes me think its nerve related, like all the other things going on.

I'll ask my Dr. on my next appt in a few weeks, but until then, just thought I'd check with the true experts on this forum, those who have been dealing with neuropathy for years, if this is just part of it?

I don't know what this is, but I have it too. I have called it bone pain or muscle pain but you are correct, it doesn't go away...it just lurks there. You might ask to have your electrolytes checked, just to make sure it isn't potassium or calcium shortage.....likely it is a pain of PN, just not the tingling, burning type.

When you think about it, nerves transmit ALL kinds of pain sensation, so, why not dull and aching as well?

I have had much less muscle pain since starting the ribose. I have more stamina too. This was slow to materialize but it is helping me nicely. Ribose is part of the adenosine molecule that is involved in energy production in the mitochondria.

I have to wonder if the PN IS more commonly connected to mitochondrial functions, than we all realized? We know mito issues occur in toxic and drug induced PNs. It is suspected in diabetic induced. It might turn out with more research that mito issues are involved in all of us, to some extent.

I used to think, it was because we walk differently and favor certain muscles we wouldn't normally do, and those fatigue?

Chiropractors explain alot of pain this way, as stress on systems trying to make do with a "problem".

Were you ever able to find out any information on the supplement Enada, it is based on NADH, if I am correct....plays a role in the ATP cycle?

I think my pain is related to the low bicarb I have been running....low K, low Ca, high Cl, high Na. It can cause rickets and a kind of osteoporosis. I am attempting to get my docs to look at this.

It is a rainy day here today, and my body barometer is letting me know it isn't happy.

NADH increases immune function:
http://www.nadh.com/site7/SYSact15.htm#Top

Pain is acidic ... if you are low in bicarb, you are running acidic also. Why don't you take some bicarb and see what happens?
This is an example of TriSalts, which are used by environmental doctors for people with chronic allergy:
http://www.drhoffman.com/page.cfm/537

At least be eating foods high in potassium. Or better yet, get a consult from a holistic doctor..take your test results with you.

Questions to ask:
1) are your kidneys failing because of your autoimmune status?

2) are you acidic because your kidneys are failing?

These are just examples.

Yeah, bicarb, as in baking soda helps....I wish I didn't have to drink it tho....plus I have this arrhythmia thing going and I am worried about messing things up.

I think the docs are missing the forest for the trees....yes, both questions are valid and I am ragging on them regarding this. I believe this acidosis is not unlike ketoacidosis...acidosis is acidosis. Would not any kind of acidosis make neuropathy worse? I know it drains bone of Ca.

The kidneys are not acidifying the urine, as a result, too much acid is in my system and not enough bicarb. Likely it is autoimmune but it can be hereditary....or both. I know they make bicarb tablets but for some reason I am having a hard time getting thru to them.

I think there is some reluctance on the kidney issue, since I am on IVIG.....messed up kidneys will mean stopping it.....which could be neurologically devastating.....it is a nasty cycle. SjS folks with this condition are on Cellcept....I do so prefer IVIG.

Sodium Bicarbonate tablets are not RX... You can buy them.

But I do understand, reluctance to do it on your own.

This is why I think you need another medical opinion, esp if you feel better on bicarb.

Topamax causes low bicarb. Regular acidosis is not ketoacidiosis, because keto is formed from using fat instead of glucose for fuel, in patients with very high blood sugar.

The acidosis from Topamax is not the keto form to the best of my knowledge.

I've been complaining to my doctors about low energy levels for more than a decade, to no avail.

Can you provide more info on ribose? I notice that dosing may be between 5 g and 15 g per day. I hate to add yet another substance to my list of supplements because it seems like a big load for any body to process. Should I be concerned about this?

Thanks.

I have a thread about my trying ribose and why, with some links:

http://neurotalk.psychcentral.com/thread123731.html

I forgot to take it one night 3 days ago, and really noticed it the next morning.

I've been keeping at 5 grams a day for now. It is not like I am going to run a marathon or anything, but my pain levels are better, and I don't have so much trouble with stairs. We have far too many stairs around here!

I am just finishing up my first 8oz tub of powder.

I really was not expecting to find much effect. So I am pleasantly surprised and now am thinking others may profit from this too.

I am going to try twice a day use on vacation, where physical demands are greater than here.