Flares, Inflamation and Loss of movement
 

Since a rather dramatic lessening of PN symptoms in a short time frame I have been able to make some very relevant comparisons in regards to movement of my legs, toes and hands falling a sleep ( when I sleep)

To put it in perspective my PN symptoms have reduced by around 70% in several months since starting a clean diet and finally, religiously sticking to a supplement regime recommended by MRS D and many others here a great website that goes where no doctor dares to go

When I was at my worst the PN pain fluctuated between 5-8/10 ( my pain levels are conservative as I have high pain tolerance) and the odd thunderbolt screaming through all toes at 12/10 . This is apparently called a "flare" but for me every flare created more numbness and further PN travel.

When these flares were at their worst my PN affected areas would turn light pink/red and I could see it clearly under the toe nails.

During this time I noticed there was a lot of effort needed to move my toes and in some sitting /laying positions I could barely move them. Also noticed the gradual decline in leg strength to the point where 12 mths ago after booking a room on line and not checking for lifts I ended up needing crutches to get down the stairs.

I also have PN in the hands and particularly finger tips and started to habitually keep my hands in a semi fist with with fingers curled in to reduce the symptoms

Now what I did find out was that the above symptoms can improve quickly. I was under the impression that progressively disabling PN ( im long fiber) was difficult to stop let alone reverse. I can emphatically state that this is not the case. The above leads me to believe that "flares" are a result specifically due to inflammation of the nerves and those that have strong permanent PN pain maybe in constant state of inflammation

This inflammation some how affects the message the brain sends to the feet and distorts it causing difficulty to move/walk along with terrible burning. I know this for sure due to observations of myself in a relatively short period.

I still have problems, my feet are still numb with light feeling although my hands improved some some what. The big difference is my ability to walk with a normal gait now where previously I used to stomp and stumble around like a drunk. There is no pain when I walk except if I push myself . I still get some burning but only light on a 1 or 2 but the dreaded flesh eating worms have completely gone along with the thunder bolts

Another reason I believe that it may be inflammation is my addition of 10mg Predisnone daily

Thanks to lift your hands thread on diet got me thinking.

Im posting this to gain some further opinion on why there can be strong improvement without the need to regrow nerves at 2'/year. Also to encourage others to try everything at your disposal because it can be just a little change like gluten free diet ( im doing this) or something in a Vitamin supplement that may replenish the damaged/inflated nervous system. :)

Congratulations on your success and thanks for sharing.

I'm also looking into inflammation as a main cause of problems.

My current theory is that inflammation causes heat. If the heat gets trapped, the nerves are constantly under attack. When they are constantly attacked, and especially when the heat gets high enough, just like with a burn, the inflammation damages/destroys the nerves.

Neuro interesting theory and agree inflammation usually leads to heat .

it mostly comes down to luck in identifying what is the Trigger that causes the inflammation so a complete lifestyle change may be needed even then we probably wont know the exact trigger since it may be a combination of many irritants at once and the same applies to supplements, which one is it? or is it a bit of each.

I think a systematic approach can take most of the luck out of it.

I've been on two lifestyle change diets: the SCD (Specific Carbohydrate Diet) for IBDs (Inflammatory Bowel Diseases) and the Intractable Pain Diet. Both effectively removed all the triggers, and by slow experimentation, things can be tried/added back in one at a time, or identified as triggers and avoided like allergens.

The same method works with supplements, adding only one at a time. If, after a reasonable time, there's an improvement, keep it; if not, stop it and try another.

Doc

":The same method works with supplements, adding only one at a time. If, after a reasonable time, there's an improvement, keep it; if not, stop it and try another."

Im grateful that we even know where to start looking thanks to the site. My only regret is that I didn't take action sooner

Ive tried reducing my meds to see how far improvement has gone but the daggers came back straight away .200mg tramadol, 150mg lyrica, and 20mg Amytriptlyne is what it takes to keep me on a pain level of 1 or 2

lot of work to do yet and a few years of nerve regrowth to go me thinks. But I could happily live like this and its the first time I have though about the future in 3 years

My meds arrive today from I.herbs, mostly doctors best brands, will list them here.

Congrats on all that. As the nerves regrow, I think/hope you'll find you can reduce the meds. Nerve regrowth, I'm finding, is one of those "hurry up & wait"/"three steps forward and two steps back" processes - very frustrating at times, so my advice is to not try and put it on any kind of schedule/time table.

Doc

I'm starting to think the inflammation I've got is a vascular response to damaged cells. The damage was done by oxidative stress.

The reason why I haven't suspected it was inflammation until now is because there was neither redness nor swelling.