Edema
 

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

Don't know why--
 

--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.

I too have edema in feet, legs and also hands along with my idiopathic pn. I did have it before my pn. Now that my feet are totally dead, I wear Merrill shoes so that I am familiar with how feet hit the ground. I also do not know if shoes fit correctly any more and it helps by sticking with a familiar brand.
I notice when I remove my clog type Merrills how funny my feet look because yes the part in shoe is smaller than my swollen looking ankles above it. I can still feel how tight my legs are when they are swollen tho.

My doctor back in late 90's told me to lie down two hours in morning and then again two hours in afternoon. Good luck with that. But when I have done so, it did help. I have also slept with my feet and legs raised at night time. I never turn on sides and have scared two different sleep specialist because I never move during the night. I even warned the last one and he still had to check on me to make sure I was okay.

That same doctor did recommend that I wear compression stockings. I tried too many times but they were so hard to get on that I seldom wore them. They did help when I could manage to get them on but by the time I managed I was usually to tired to go anywhere. :D

Hey Melody,

Please refer to my previous post #5 concerning Lymphedema. It is not the same as edema. And that pump is for Lymphedema not for edema.

Thanks.

I have no problem with compression socks which I have used on occasion.

They are called foot pump slippers which help prevent DVT. They felt wonderful after my surgery.

My friend (a long time ago) had some kind of leg surgery. She was in the hospital and when they sent her home she had to wear these long things on her legs that compressed and de-compressed. Can't remember anything else.

The reason I ask is that it makes complete sense to me. No amount of pain meds (which he hasn't been on for years because they don't work), no amount of lidoderm patches wrapped around his toes (again, didn't do a thing), no any kind of med did any good. The only thing that helps his PN is when I take the Homedics massager and run it up and down his back and he goes AHHH. And he has used it on his thighs and it makes the pins and needles in his feet go away. But he has burned through massager after massager. So, in my mind, I say "what about those big old lymphadema pump things" Why wouldn't they accomplish the same thing as the massager? I mean, he's sitting on the couch anyway, and he keeps tapping his foot like someone with parkinson (but he does it because he says it brings the blood into his foot), and anytime he is sitting at the computer he is always tap tap tapping his right foot. He has had PN for 20 years now.

Oh don't know if I mentioned this before but years ago we got him a similar item from one of those Harriet Carter kind of catalogues. You lay down and put these things on the legs and it compresses and de-compresses. I remember him saying "This would work if it would do it harder"

So then I go on the internet and see this lymphadema pump thing.

See how my brain works???

Melody

Doc,
 

I agree. I have edema and take Furosemide and Spironolactone daily to keep it under control. I purchased from medical pharmacy, compression knee hi stockings. Unfortunately, the ones I purchased were pretty expensive. After a short time, the pain from PN became overwhelming and cannot keep them on. All my shoes are slip ons (no backs). The shoes I wear in the house are slip on velcro sandals (no backs either). At least they can be adjusted to the swelling.

(Gerry)

i sweated when i fractured my ankles each time that they would want to cast it because that would drive me out of my mind. i cant stand to even have anybody touch my feet never mind massage them. back in october 2001 i was getting a foot massage from a volunteer in downtown manhattan and the pain should have been a wake up call to me then.

The skin over edema is very sensitive and prone to blistering from friction or other tactile activity.

Hence squeezing into shoes that seem too small, may lead to sores on the feet. Once a sore develops in a limb with edema, healing is typically poor and impaired. Preventing sores and injuries to the feet for patients with PN is a very important part of life therefore.

Kit.

I'm obviously not making myself clear. I'm not interested in the lymphedema pump for Alan's edema (which is not bad whatsoever). I'm interested in the fact that they compress and decompress and the fact that they do THAT, well maybe it will stop the burning and pins and needles in his feet, because the massager does the same thing. But we can't run the massager all day long.

It's like you have a gadget that is made for one reason and you find "wow, I can use it for this too". Like when they found out that anti-seizure meds which are originally prescribed for seizures, also helped with PN (in some people).

Melody

Hi,

You did make yourself clear. I do hope that you find the answer.

There are 8 different units on that page. One (the 6th one down) says:
Melody,

I don't know if this would work for Alan (I'd be interested to know if it would work for ME! :o) My first thought was that they looked like the machines hospitals put on surgery patients to avoid/prevent DVT/PAD as well. I have some reservations about there being enough pressure (the massages we do on me are point-loaded via thumbs) to reduce edema. I don't know if these machines would stimulate or restrict circulation, or which is better for edema (you probably know better than I).

I spoze it would be helpful if there were some way you (Alan) could try one for a period of time. A call to the company might find that out. I don't know if these machines would be found in a PT office/practice.

Jes' brainstorming/spitballin' here... :winky: I get where you're coming from.

Doc

I'm surprised that no one has ever tried this for conditions other than lymphodema. Wouldn't it be amazing if one tried this and all their pins and needles and burning would go away?

I have to add though that because Alan is on Plavix and aspirin therapy and has black and blues all over the place that while I'm thinking about the possible benefit of this pump, that all the compressing would probably give him more black and blues than he already has.

I know him. He couldn't care less if using this caused any bruising. He would just want the pain to go away. 20 years of pins and needles.

I wonder if they will ever go away and he might get some relief.

Melody

Hi Dr. Smith.

I guess someday SOMEBODY has to be a guinea pig and do some experimenting. But I do know that I was told that when I massage Alan I have to be careful not to massage his calves because it might cause blood clots. His former nurse told me this. So I never do that. He just loves when I put the Homedics Massager up and down his lower spine. He says it feels like the G5 machine that his former chiropractic neurologist used on him.

When he came home from a treatment he was in heaven for some time. Too bad the guy moved to Minnesota.

Melody

Wow. :eek: That gives me even more reservations about something like these machines. I guess I'd put the questions to the doctor who is overseeing that part of Alan's conditions. I would think s/he'd know about these (and other) kinds of machines for treating circulatory problems.

Doc

When I had my TIA last year, they used the kind that prevented clotting, and it was fabulous! I wished I could take it home with me, because that was the best my legs had felt in a long time. The hubs has been looking for a cheap(er) one for me to use at home, but as of yet, they are out of our reach.

At first I didn't want to wear it, then I didn't want to take it off :). The only complaint I had was that my legs would sweat at night (under the covers) when I wore them.

When I was in PT for my adductor injury, (thigh/groin ligament)
they taught me various isometric exercises to do in bed.
Contracting certain leg muscles, holding for a count of ten and relaxing, and repeat after counting to 30 or so. 10 reps and do twice or 3 times a day.

This moves the blood around and helps lymph return properly.
The muscles, then do not atrophy from disuse and the blood moves around preventing clots and improving circulation.

This is a similar process to having a machine do it for you.

Thanks so much Mrs.D. I'm telling Alan all about this as I type this post.

Will let you know if it helps him.

Much much appreciated.
Melody

That certainly sounds worthwhile trying. Any effect on PN (or different time frame)?

I tried poking around online for the exercises (many PT exercises can be found) but apparently I'm not figuring out the right search criteria.

Can you describe the exercises that we could try them, or maybe you have a pointer to a site where they're described?

Doc

These are similar to the relaxation type exercises. In fact if you do them in bed before you sleep, it will relax you too, a double whammy.

It is contracting various muscle groups... glutes, thighs, calves, etc one group at a time one leg at a time. I also flex my ankles.

I start with the feet and move up and end with the glutes.

There is another one where you lie on your back flat and slowly flex the leg and drag the heel toward you. It is like walking in bed.
Don't put alot of weight on the heel, or too light a pressure, but go for a moderate amount. This is movement without impact stress and also moves blood around.

I do these if I wake up in the night and find it difficult to get back to sleep. Many relaxation tapes, have this muscle contract/hold/release, as a beginning to various meditation exercises.