"Folded Sock Syndrome" Help?
 

I debated whether or not to share this with everyone, but if it's of a little help to another, then it was worth my time to type this out.

If you understand what I'm referring to with the "FSS" nickname, then you've probably have experienced it. I'm on 40mg daily of Nortriptyline, & after my body got used to it, it was like flipping the switch to the "off" position on the pain relief for it. The Nortrypyline definiely has helped with the burning, tingling, stabbings, etc, though. When I talked to my Neuro about the FSS, I could tell from the expression on his face, that he really didn't know how to help & the best I could do was try to work it out on my own.

When I first came down with PN in my feet, I thought it probably has something to do with some other sort of foot problem, like morton's neuroma, so I went to a podiatrist. That really didn't work out well, but had given me an idea. I was given test insoles with a metatarsal pad, which really didn't help much. This time I went out and bought some metatarsal pads at WM and stuck them to the underside of my removable insoles. After much moving them around, I was able to get them somewhat comfortable enough, that after some getting used to them, they did help. Unfortunately, after wearing these awhile, it felt like a large pebble in my shoe & was back to square one.

These metatarsal pads were similar to the teardrop shaped ones that most would recognize. Out of curiosity, I tried some "axe-head" shaped PowerStep metarsal pads which are much thinner & I am having some relief with them. Definitely not a cure all, but I went from a feeling like a string of broken glass behind my toes to more of a dull discomfort, which I can manage with for longer periods of time. I used a vinyl tape that's easily removed so I could reposition the pad on the underside of my insole, to find the best place for them.

I'm not a Dr, and this is something I tried on my own. I guarantee nothing except that it has been of some help to me. I wear a US mens size 9, and the front edge of the pad is about 7 inches from the heel (back) edge on the insole. You can get these off ebay in the PowerStep or New Balance brand for $5.50 to $6.50 a pair, delivered. If you try it and it helps you, let me know.

I'm also a believer, now, of New Balance, extra wide-shoes. Much fewer & less pronounced "MS hugs" going on.

http://www.protherapysupplies.com/Sh...sal-Relief-Pad

Thanks for the 411, Grouch.

FSS bothered me a lot for the first year or so -- it was the first symptom I recall manifesting. By the time the burning began, I had been to a podiatrist (no help at all -- just wrapped my feet in duct tape and told me to leave it on for a week... didn't do squat) and the neurology route that wrote me off with a scrip for gabby. Right about the time I broke down and took the first gabby, I also got ahold of some RLA, and within 48 hours the burning was gone. Since then I've tried other supplements as recommended here, but the only one that's made a difference for me I found on my own - pantothenic acid (B5). Over time, the shocks, cramps, and FSS have all lessened, but never gone completely. So I can pretty well attribute it to time, RLA, B5 or a combination of 2 or all of them.

Just my $.02

Doc

Doc:
Glad to see that you've been back, for awhile. Hope the "break" you took wasn't anything serious.

The Gaba worked for about 3 weeks, then would have to up my dose. When I hit 600mg - 4x daily, I felt I had enough. If I go above 40mg daily on the Nortriptyline, it's like I've ODed on caffeine. No fun, either. I don't think my feet felt any better at 50mg, but didn't stay on it (twice) long enough to know, maybe. Another fellow on here suggested natural vitamin E made his feet feel better in 2 or 3 weeks. After being on it for 2 weeks, I found my feet were no longer icy cold. Just kinda cool in the AM, to near regular body temperature later. That wasn't what he meant, and he never did tell me what "better" was for him, but if it helps my circulation, I would say (& my Neuro agrees) it's a good thing. I just added Omega 3 & am giving that a trial run, but will keep the B5 in the back of my mind. Don't like to try multiple new supplements at once. Hard telling what's helping.

Agree. Supplements can seem like a crapshoot sometimes. Everyone's different, and it takes time to find that combination of supplements that work for each of us. I'm really glad the RLA works for me though; gabby & Lyrica S/E are intolerable, and rob me of what's left of creative abilities.

Here's the blurb that put me on to B5:

Pantothenic Acid

I'm told I'm not diabetic (always test negative) but my PN responds as if I were. Go figure. :Dunno:

Doc

Thanks again. What dosage of B5 works for you? I've been taking ALA, and trying R-lipoic didn't seem to work for me.

If RLA didn't work for you, I don't see how ALA could, as only the RLA portion of ALA is useable.
Also, the study cited was for B5 with ALA, so if ALA/RLA don't work, I don't know that B5 would do any good either. But it wouldn't hurt to try it. I take 500 mg/day.

Doc

I'll give you the whole deal. When I started the ALA, I had the "stocking" feeling on my feet, or they felt swollen and they obviously were not. 600 mg of ALA seemed like it helped on again-off again, so I raised it to 900. I continue to take 900 mg (300x3) of ALA, which also helped slightly with discomfort. I've thought about trying to discontinue it, and see if the 40mg of Nortriptyline is enough to do it for me, but I haven't yet, as I had just "stocked up".

I'll try the omega 3 for about a month by itself, and perhaps add the B5 later. If I'm lucky enough, maybe I can tell my Neuro that nature has helped me. I don't know if I'd mentioned to you that my Neuro doesn't like to recommend ALA, as he believes too small a percentage benefits from it.

I got a similar story from my neuro, but I question their logic. I don't know the exact % of PN patients for whom RLA works (and I count my blessings that I am one of them). Gabapentin & Lyrica have been shown to help only about 30% of those who tried them, but they are prescription medications (vs. OTC supplements) and for many of those for whom they do work, they just stop working after a time. Worse yet, they are incredibly dependence producing (see threads here, and in medications & chronic pain forums).

In the spirit of Hippocrates, doesn't it make sense to still try the natural, non-dependence producing therapy before (IMO) the noxious ones that (virtually) enslave people to Big Pharma? :confused:

Doc

I agree with you, completely. When I look back on what I wrote, I can see why you misunderstood me. I told my Neuro that I was taking the ALA. I thought it was helpful to some extent, but still had pins & needles (I get some still, but not so bad) & other pains. This is when he mentioned it doesn't seem to help many, so he didn't recommend it to his patients. He asked me if I still took it, at my last appt.

The discomfort has worn me down. I tried the drugs for help, for which they have, to an extent. As I told my Neuro, the folded sock pain is the worst, like walking on a string of cut glass behind my toes, which the drugs only killed temporarily. So that brings me back to the Podiatrist and the metatarsal pads. I can pretty much do the experimenting on placement, without paying for office calls. Incidentally, my trying these new pads, and finding how much better these worked, than the old ones, was a "good feeling", pun intended. That's also why I offered my experience with it on the forum. I wish I could find other natural stuff that would make things tolerable for me, but I'll take what I can get. I wouldn't hesitate to taper down or completely off the Nortriptyline (at a safe rate) with or without my Dr's consent.

I talked with my Neuro about all the folks I've read about on NeuroTalk that are on a handful of different drugs, and aren't able to get relief. He confided in me that, that as a Dr., he was frustrated that many of his patients aren't able to get the relief that he wished he could get them.

And, yes, the next drugs likely in line, Lyrica and Tramedol, are tough to get off of, once you start them, he agreed. I told him I felt fortunate to get partial relief, and get around as well as I am. My pain is mainly when I walk & seldom have anything that would bother me at night, other that an occasional stabbing or cramping. I haven't given up on natural remedies (my GP likes them), but finding one that work for me gets discouraging. (Extra B12 & 6 didn't do a thing for me, but I'm a believer in B1, so I continue to take along with folic acid & a good multivitamin) The fact I learned about the ALA and vitamin E, which is somewhat helpful, keeps me going, on that end.

While I read the omega 3 being mentioned here, I found more stuff on the web about it but it doesn't seem to be recommended a whole lot, but I hate seafood, so I'm sure I'm lacking. LOL How's that for a reason to try it?

Sorry if you've mentioned this before (and I either forgot or missed it) but how long have you had this cut glass FSS? I ask because I've noticed that this condition (PN) has gone through phases with me. FSS was one of my first symptoms (though without pain) and I don't feel it at all anymore except during flares (like the day after I have a slice of pizza :o). IIRC, my FSS took ~a year to resolve.

I've heard that myself. Sometimes there's even more to it. I've posted this before, but it explains some things.

A Letter to Patients With Chronic Disease

In looking for the above link, I also came across this one, which I'd forgotten about...

Did you see this one?

Uncovering a Healthier Remedy for Chronic Pain

BTW -- are you taking a good antioxidant or 2 or 3?

Doc