New symptoms

Hi.  Have you ever gotten some orthotics made?  I've had several from podiatrist in different cities.  For the last one I finally got a podiatrist that looked at the mechanics of the entire foot.  He said that's his thing.  Turns out the pain is caused by a different spot than where the worst pain is. The orthotic he made stopped at the ball of the foot and was made with a hard acrylic.  I thought it looked awfully hard, but it's molded from the foot, so it's comfy. More so than others I've had. Even tho they are all molded in some fashion.


Most of my pain is in the balls of my foot and the problem is the ball above the heal is sitting too far in front of the heal's socket.  My foot continues to spread and I don't keep up enuf with it's latest proper shoe size.  Make sure your shoe size has not increased without your realising it. I also am told I would do better with a rocker shoe...it's rounded so it's rocks heal to toe, but those shoes don't come in my size, so I've settled for a stiff hiking half boot.  Your needs may be completely the opposite.

My point is you may need to doctor hop.  And I bought a lot of useless shoes I til I figured out what seems best.  Some of them start stiff, and get too broken in for me. Anyone need some size 13 1/2 shoes? Lol, what size will they be when I'm 75?

Neuropathies are very common in fibro. I believe there are 6 fibro/ neuropathy studies. Now I'm editting my response: you should research whether your MTHFR enzyme deficiencies could be behind any neuropathies. I'm pretty sure a B vitamin deficiency can do that, but can't remember off the top of my head which one. Like one of the b' s being deficient can cause carpal tunnel. Now if it's folate, that might explain that issue for you.

You might want to check out the threads on getting methylation cycles working. I'll come back with a link in a bit.
Oaklander's polyneuropathy-fibromyalgia study which I've read was not the best, as far as other researchers (like the Venule shunt researchers, being able to mine for information, but nevertheless it sure points to the benefit of trying to find a reason behind neuropathies besides assuming "It's just fibro". Levine has one, and in his other non-fibro writings he has emphasized that he thinks biopsies can be useful. I can get a link about 4-5 of those studies that I wrote about if you wan

And I noticed the neuropathy studies were done by mostly (or all?) neurologists. They may be more comfortable with doing the biopsies.

Might find the link using the search box here and keyword "polyneuropathies".

I've had nerve pain at my heals go away when I did home P.T. which that same good podiatrist explained to/for me to do for the plantar fascitis I developed.. My latest weird thing is that many days I feel there is a hair caught over the top of one toe. Well that is much better than pain, and I figured out it wasn't my hypothyroidism making my hair continually fall out.

I have gotten pain from vasodilation before as a medication side effect. But it's different from yours. Usually it was the blood vessels in my hands blowing up to the point of being painful. Sometimes one arm ached.
Doesn't happen much now cuz I rarely will be trying a new med. Been thru so many of them

Post Edited (Rockon) : 8/4/2015 10:12:36 PM (GMT-6)

Actually yes, at the chiro (same clinic as the ND), they did a scan on a special scanner as well as an xray, and I got custom orthotics. Been wearing them for probably more than a year.
At the time I got them, they said I was also walking wrong, thought that hasn't been brought up since.
I guess the orthotics aren't enough, since now it feels worse. I'm doing new PT where I believe it kind of 'flosses' the tibial nerve. Have not seen improvement yet. And by doing these, I found I cannot flex my foot outward, which is not normal.
I get phantom feelings too--like feeling I have a sock on when I don't.
And yeah, since fibro is not a disease, just a bunch of symptoms, there must be a reason for them.
I think that just b/c one has nerve issues, does not mean they have neuropathy. B/c that gets worse, like my mom's (tho hers was from diabetes). And if her future is mine, I will off myself early. And I'm very afraid of dying, so makes it quite the conundrum there... Eg, I'm scared to death. What I need now is HOPE.

I was taking a methylated form of B (and not sure which B) but after a year or more on it, a blood test showed that B was WAY too high. It also showed I am converting some of it, which makes sense since I'm only heterozygous. There's an intern at the clinic researching my genetic makeup as it pertains to my symptoms. I hope I hear from him soon.
I'll look at the thread.

And shortly after I wrote the post, my 'bone' pain came back. So I now get to try Lyrica. I'm kinda scared. My doc said I can go from one right to the other, but I might post a new thread on that. I need relief.

What you have going on with your foot sounds a lot like mine. I agree with Rockon's idea of wearing orthotics. I had 2 pairs made at different times. Unfortunately, they were both made with a very hard material and after a while, my feet were so sensitive that I couldn't wear them.

Also, good advice to wear the proper size shoe. I wear size 11, and my sister couldn't believe it, insisting I was exaggerating. She wears a size 8. But I have long toes, and find that my toes nearly go to the end of my shoe, so, yes, I do need that size shoe!

Instead of the hard-material orthotics, I got the soft arch support shoe inserts. Sorry-- I don't remember exactly what they call them; just 'arch supports' maybe, but some are lavender and some are blue in color and the brand is Profoot, I think. I found them at Wal-Mart in the footcare section. I also found stretchy bands which I wear around the foot, in the arch area. They support my (very high) arches. Wearing both the soft orthotics and bands really helps, and I have fewer issues with walking.

When the weather turns cold, though, all bets are off, as my feet stiffen (I live in the frozen Midwest). I also make sure my feet are warm, and try to buy good-quality socks. Sometimes you can find the 'extra soft' type, which is nice.

Neurontin (gabapentin) isn't for everyone, but it does help me with those throbs and foot 'buzzing.'

It was horrible when I couldn't walk very much, and I know it wasn't healthy. Just making these few changes, along with wearing supportive but light-weight shoes makes all the difference. I have to wear thick-soled shoes, but they can't drag down my foot or I get cramping. Asic brand tennies, especially the gel soles, have helped, too.

Hope this helps and hope you find relief. Keep us posted.

Good luck and have a great day!

Fibro is a condition to be managed, not cured, at this medical moment in time. Most people diagnosed spend a year or so figuring out what they need to do to manage the condition. This generally means trying different things, hopefully systematically. Some things work, others don't, and still others work when paired in tandem. Sadly, as you are figuring out, there is no easy and straight-forward answer.

Sometimes things feel different. I generally don't worry about them too much. I have anxiety (hereditary), but one thing I do manage to do well is prioritize. The new symptoms become a worry if they persist for more than two weeks. Until then, I have other things to worry about. My mantra has been in recent years "If I can do something about it right now, then I will put my brain power behind it." For me, it is always a calculation of benefits and loses.

The first few years is about learning your own stamina and learning to listen to your body. After a while, we learn where the line is between normal pain and severe, incapacitating flare.

Fibro hurts and is irritating, but it rarely causes serious physical/mental impairment and death. So, in the greater scheme of things, there are other,more serious, issues that rate higher for me. My management routine is pretty set, and changes or adapts every so often. If anything, fibro teaches awareness.