Just passing along another little discovery on my journey...

I've had edema in my feet, ankles and lower legs since before developing PN. I questioned early on (based on a comment on the Wiki page for peripheral edema - see Prognosis) whether my PN could be a result of PE, but that was shot down by all the doctors. They just gave me scrips for furosemide & calcium & sent me on my merry...

Anyhoo, between the PE and PN, I haven't worn my hard street shoes for over a year now. I wear some cheapie padded slippers I found that are very comfortable (but provide no support whatsoever) or cheapie padded shoe-boots ditto, ditto...

Yesterday I had reason to wear my shoes again - venue was not appropriate for slippers (or vice versa). It was... interesting, to say the least. I was able to get them on, but just barely; other attempts have failed. My feet hurt all day, and walking became more difficult as the day wore on; it felt like my shoes were now 3 sizes too small. There was no numbness (other than normal) or feeling of circulation being cut off - this is important. I had them on for 8 hrs without a break; fortunately I did not have to stand/walk too much.

Of course when I got home, they couldn't come off fast enough, and I was offered a foot massage (who turns down a foot massage?) which I gratefully accepted. Lo & behold (how often do I get a chance to use that phrase?) the edema in my feet had diminished almost entirely, and I actually had loose wrinkly skin on my feet. (My ankles & lower legs, however, were the same ). I fully expected this to be a temporary effect of wearing my shoes, and that it would be gone by this morning - but it's not, and the pain in my feet is substantially less. Don't know how long it'll last, but I'm going to try wearing shoes more often & see.

This is the second time in about a week that I've found "leaning into the pain" (for lack of any kind of term) has been beneficial. The other time was when I had foot cramps, and instead of treating them like a charley horse, I pressed in the direction that worstened the pain, and slowly, the cramp dissipated...

I don't recommend anyone try these things themselves. They could make others' symptoms worse. It's just something that worked for me that surprised the cuss outta me.

Doc

--there'd be a complete pooh-pooing of the possibility of developing edema of the extremities with peripheral neuropathy; since proper circulation is mediated to a great extent by the autonomic nervous system, anything that might compromise those (primarily) small fibers might predispose to edema.

People with small fiber syndromes often report some degree of autonomic dysfunction in the areas of blood pressure, fluid retention, sweating, and the like--though thankfully in the majority of cases it seems to be fairly minor and often subclinical. There are, of course, people with full blown dysautonomia.

Then, too, edema is a common enough side effect of many of the medications used for neuropathy--especially the anti-epileptics--that it may be difficult to distinguish that side effect from edema related to the neuropathy.

Nevertheless, as you've shown, there are strategies for self-help for this symptom. The simplest is the "raising feet above heart level" approach. But I'm not that surprised that active mechanical pressure to the area (to tolerance) helped somewhat--it does help to get things "flowing" more efficiently. I think most of us could use more foot massages (or massages of any kind).

John too finds that wearing shoes keeps the edema down in his feet. When I give him a foot reflexology treatment, it really reduces the edema. Unfortunately, he has to pee a lot that night. Fluids are being moved up and out by stimulating the lymphatic system.

Hi. I have a question about edema and PN and what I just saw in an advertisement and I'm wondering. "Would this help people with PN??"

It's called a lymphodema pump. I just googled that and found many links.

Here's one!!!

http://www.spectrumhealthcare.net/pr...FYFo4Aod6l8jHQ

And I have no idea if this is covered by insurance if one does NOT have a diagnosis of Lymphodema but one DOES have a diagnoses of edema (which Alan often has). He is on a water pill and we watch his salt intake but sometimes his ankles swell up and only when he lies down and elevates his legs, well they go down.

So here's my thoughts on this. And a long time ago, I had gotten Alan one of those CHEAP inflatable things that you put on the legs, and plug it in and they inflate and deflate but Alan said "Not strong enough", so we returned them. That was 10 years ago. I gather that these lymphodema pumps are STRONGER??

So here's my question. If one has PN and doesn't have Lymphodema and one puts on these inflatable things while they are sitting and watching tv and sets it to inflate and deflate, that would bring the blood down to the feet and that would then take the pain away???

Sounds like a dumb question but to me it makes sense. Alan is always shaking his legs saying "It brings the blood into my feet".

Wouldn't these lymphdema pumps do the same thing? Are they dangerous if one does NOT have lymphodema?

I mean, what if it's set on a lower inflatable pressure and just gently compresses??

Anyone have a thought on this.

Thanks much

Melody

Lymphedema is a real problem for some people. It isn't the same as fluid retention that many people get. I have a friend who has Lymphedema and not from breast cancer. Women can and do have it in their arm after breast cancer and have a breast removed. I knew of some of them. I would rather have fluid retention (edema), and sometimes I do, rather than Lymphedema. What a struggle my friend has with it.

Edema arises from venous insufficiency which is Not Lymphedema.


http://www.mayoclinic.com/health/lym...ents-and-drugs

Another site on Lymphedema pumps.

http://www.lymphnotes.com/article.php/id/406/

Another explaining it.


http://en.wikipedia.org/wiki/Lymphedema

if wearing shoes helps with edema maybe compression stockings or socks would help as well

FWIW, it happened the other way around. The edema came first, followed by the first PN symptoms several months later. When I questioned (several) doctors about a possible cause-effect relationship as mentioned in the Wiki, they all said my edema was not severe enough to cause PN. I had to convince one doctor that it was edema by pressing my thumbprint into my foot. It was not quite as severe as that depicted here, but very close.

I tried raising my feet at night for a few weeks, but it didn't help much - probably because I have to sleep on a high wedge anyway.

Doc

It's a thought.

There have been several threads about them here (and elsewhere on the web) in the past.
http://neurotalk.psychcentral.com/thread82064.html
http://neurotalk.psychcentral.com/thread119204.html
http://neurotalk.psychcentral.com/thread164689.html

What I glean from them is that they may help mild edema, but complicating factors like PN, RSD, and others make them to painful to tolerate. I still have enough sensitivity that massaging helps, but even my shoes hurt; I'd be reluctant to commit to compression socks.

Doc

Alan's edema is not bad at all. What I wanted to know if any of you think that a lymphodema pump would do what a massager does. When he holds a hand held massager to his thighs, it brings all the blood into his feet (at least this is what he says is happening because the pain goes away).

So I was thinking "What if he wore this lymphodema apparel and it compresses and decompresses (I have no idea how long one wears this thing) but I wonder if wearing this would bring relief to someone with PN?

Hey, it's a thought!!!



Melody

You have that right about the compression stockings. What an uncomfortable mess. Hard to get on, cut into your legs, and then IF you can get them off, you spend the night in the bathroom. NO THANKs. My cardio isn't happy with me, oh well.

Melody L, I had something that sounds similar during a surgery recovery. They were on me to prevent DVT, but also helped with the edema. Or so they said. I never noticed anything different. Again, a pain in the patootie to get on and off.