Today my wife's feet and ankles are very swollen, red-purple rash that seems to spread right before your eyes because of her RSD. It's not the first time its happaned and of course she's very concerned about it. She is an active gardener which it seems to be causing the swelling from stooping, bending of the ankles etc. She takes 200mg Celebrex and advil for inflamtion. She does wear very soft socks and openned back shoes. Can anyone give their advice how they've delt with this swollen feet issue? A procedure or method to reduce swelling, maybe? Thanks very much!

Hi Jim,

Sorry to hear about your wifes swelling! I hope it settles down for her soon and you are both in my thoughts.

I also deal with a lot of swelling. When my leg first started to swell, my Doctor thought that I may have a blood clot so did an Ultrasound as the swelling just appeared overnight and my leg was about three times it's normal size and discoloured!!

The ultrasound results came back negative apart from some muscle swelling so my Doctor said that it must be from the RSD, even though he had never seen it happen before like that.

My swelling varies on a daily basis and how much I have done. Some days it can be really bad and literally feel like I have a cast on my leg as it's that heavy and other days it can only be swollen a little.

My Physical Therapists gave me and my mum some things to do when my leg started swelling. One of them was to massage my leg with aromatherapy oils - that is extremely painful sometimes but can help a little. When massaging, we were told always to massage downwards and not upwards or near to the heart and chest area.

My Doctor also suggested trying compression stockings like the ones you wear on planes. I wasn't able to tolerate them due to my skin being so hypersensitive but it might be something to look into for your wife.

Please tell your wife to move her foot and leg as much as possible also! I KNOW that it is really painful but that should hopefully decrease some of the fluid build up. Start doing gentle exercises and then gradually build up when your wife feels able to.

Sorry that I can't help you that much. I hope that some of the above suggestions will help and that your wife feels better soon! Please send her my love and tell her that we are all here for her!

Alison.

Sleeping with the legs/feet a tad bit elevated will help with the swelling (higher than heart). It won't stop the swelling the next day, however, but it will hopefully provide some relief.

Hey there, I too can't tolerate any compression around my feet and ankles - this being So. Cal. I go elmost everywhere in sandals - but have managed to keep the swelling (in both feet) maybe 70% under control with the use of a class of prescription medications called diuretics, which expell excess fluid from the body. However, they are not for everyone, as they can cause something call orthostatic hypotension - extreme lightheadedness while getting up from a seated position - particluarly for people on narcotics, as they will lower your blood pressure. I take up to 80 mg. of Oxycontin a day and luckily it hasn't been an issue for me.

Secondly, the diuretic (I take 20 mg. of Lasix, 2/day) must be taken with a prescription potassium supplement and you have to have periodic blood tests (every 4 weeks is suggested) to make sure there's no impairment of kidney functions. Interestingly, I was presented with this concept/prescription neither from my neurologist nor my pain mngt. doctor, but my internist, with the other two later concurring in the decision.

Finally, when you are on a diuretic, they will make you thirsty. It's important not to drink too much so they will do their job. (Hense the need to periodically monitor kidney functions.)

I hope this is helpful. Good luck!

Mike

Back in high school my Dad called Mom from work and asked what she was doing to shrink his socks! He ended up having nephritis from undiagnosed strep. With the RSD my legdon't balloon like his did but I'd like to know whose shrinking my shoes every day! Would something like a "Lawn Buddy" help with not having to stoop so far? It's on wheels and is a good sitting height and stores small gardening equipment. It's so hard to try to do something you enjoy when it brings pain and complications. Wish I had a magic wand to making her swelling go away. LYNNIE "ONE MOMENT CAN CHANGE EVERYTHING!"

Thanks for the responses everyone!
ali12, the oil rub thing is out. Suzy says that would put her in pain for a week. She is all for moving around as much as she can to avoid severe stiffness and atrophy.
CRPSbe, your advice is what the doc told her to do, elevate her legs but didn't mention "above the heart" which makes much more since in which she is now doing, thanks!
fmichael, my wife may try an over the counter diuretic first to see if she sees results with it before moving to a prescription diuretic.
RSDLynnie, a lawn buddy sounds good. been pricing them.

Thanks again everyone and have a great day!

Please be careful with the use of diuretics...you gave a great run down of warnings but also be aware that it if you have heart conditions it can cause serious problems. Also note that our swelling is not linked to the amount of fluid in our bodies but is from the rsd....the "edema" is not the same as it is for those who have other conditions that cause swelling. It may work for some though but I would caution using them on a as needed basis...due to the need of close monitoring that mike mentioned . If your wife finds that her swelling occurs during certain activities (like gardening) have her get up and move around every few minutes to keep the blood moving...this may help. I am new to the leg rsd...I just found out about my spread not too long ago so I want to thank you all for these responses because I will use some of the advice too.

Jennelle

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Hello Jennelle,

I agree with you about the use of meds for the swelling. Kind of like NSAIDS, did everyone see this past week where the gov't warned all seniors about using those?
Oh boy, now simple aspirin isn't "all that safe".

Now, this is gonna sound like a real P.I.A. (and it is) but, once you get set up right, it's great.

First, get to a durable medical goods store, (most insurance covers these 100%, just so your doctor writes 'em). (This might be Amazon for lots of ya'll). They're Dark Blue (get the darker ones), vinyl pouches filled with "Putty". (These are the same thing your PT or Chiro uses for therapy, they keep them in the freezer, So do you! I had a small one "Neck sized", and a full back size.) Heck, I had four of them in each of my freezers. I had lots! So, like one the size of a magazine, and one, twice that. (Just as I had the electric, "sand filled" wool wrapped hot "Hydrocolators", and the cold ones are the same Co. They' actually elongated a bit....
"Hydrocolator" are the hot ones, buy the ones that plug in, and "Chatanooga" are the ice packs you keep in the freezer. Know what?
Here's a great link to start shopping:

http://www.amazon.com/Chattanooga-St...2264288&sr=8-1

(Glad I kept it short there, huh?)

Get the "better" more HD ones of the cold packs, (they'd be the real darker colors.). Rinse them off, and toss them back in the freezer when you're done, what's great is, they stay PLIABLE! Yea, you can shape them to your feet when they're ice cold! Sit down for 45 minutes or so, and these little babies take the swelling right down! Do that, for a few / couple / once times a day, and you'll have the swelling under control! Along with the "worst" of the mottling and discoloration! My feet started this crap two years ago, and I said, No Way!

I "Iced 'em and Diced 'em"! They still give some crap every again and now... but, it's under control... for now.

Benefit: They also work great for headaches! And any other place that swells! (that shouldn't). Especially Summertime!
(Actually, I had them for the HA's first).

I recommend that you get a few. one for each foot, and if needed, one for your neck, or head. (JMHO). Two will get you started.

So, choose you chair (bed, ottoman, bathtub, whatever) have some medium sized bath towels, one for each foot, and a Chatanooga "Cold Pack" for each foot. I'm getting new ones. In the fall, I'll be talkin' about the electric ones! But, less than $25Us I'd figure each foot? Like that..

So, you sit, lay, recline, and wrap each foot in the Towel/HD Icepack/Towel over top to insulate. One towel should be big enough for each foot, get it? So, you're foot is gonna resemble a kind of "roll up". Towel to keep the "ice" cold off your skin, then around the out side of the pack, to insulate it and hold it on.
Towel over foot, then ice pack, then towel to cover!? Easy enough a HUSBAND could do it!
(Now, here's what wifey will forget. To keep the feet UP)...
We all on the same page now?
PM me, if not...

Heck, if you got a got a good ice maker in your fridge, you can make do with a pan.... tin pan alley..

Wrap, Wrap, Wrap,,, Wrap it UP!
(I"ll Take It!).

I hope that some one, somewhere gets a happy set of puppies for/from this story.....


Also, use "Gold Bond" powder, it's got all kinds of menthol in there that'll keep those Puppies cool when you've gotta be on them, and they make this new "Luxury powder" stuff, (says AintSoBad All over it!), it's great for Everywhere... It's a "Secret Ingredient",,,, NOT Talc!


Remember, NEVER EVER, Use Menthol anything, "Menthol ICE", like that, with a Hydrocolator, or HOT PACK! You'll BURN YO' SELF!

OK,
Get It?
Got It?
Good!

Pete
ASB

Dear Jennelle -

Hi there. I never meant to suggest that edema in CRPS patients is "caused" by the amount of fluid in our bodies. Neurogenic edema is indeed a creature unto itself. From what I understand, it is generally agreed that we have what's called a neurogenic vasodialation, that is that sympathetic nerve system ordinarily maintains the tone of the blood vessels and thereby blood pressure (it is said to fill or "innervate" the vessels with nerves) and as there is a local dysfunction in the sympathetic system, there is in turn a loss of vascular tone and with it a build up of fluid in the area. But fluid it is. And while the edema is not caused by the overall level of fluid in the body, it can be relieved, albeit temporarily, by reducing the overall level of fluid. This I know from first hand experience.

That said, these are by no means do-it-yourself medications, and should only be taken under the guidance of an internist who knows what s/he is doing, as there are the potential for significant complications if either the wrong drug is prescribed or you are contra-indicated for the drug. And as far as monitoring is concerned, a basic metabolic blood panel is no big deal. The doctor can give standing orders to a lab and - if this is the right choice for you - you show up every four to six weeks to have a single tube of blood drawn. I had to do the same thing for Trileptal, that is until my level of blood sodium started to fall all of a sudden, and then I was off the drug. Truth be told, we are all probably on medications for which we should be monitored. (But we're not.)

Now, a couple of thoughts for Pete. You will forgive me, I'm not sure it's appropriate to draw a comparison with Vioxx, where we now know that was a new drug that was rushed to market without a careful (as in any?) look at the major studies that had reviewed it's use. In contrast, it is my understanding that many of the diuretics have been around for a long time and the medical community has substantial familiarity with their use.

Secondly, everything I have heard from any reliable source in the eight years since I've had the pleasure of knowing this beast is to the effect that ice is to be avoided at all costs. I would seriously urge you to check out that procedure with your doctor, lest you really hurt yourself, as in possibly facilitating the spread of our shared acquaintance.

Mike

Thank you for posting this Mike.

I too was always told never to ice an RSD limb as it can make things soo much worse and can cause severe nerve damage.

Before I was diagnosed, the PT's told me to ice my leg and it made everything so much worse. The swelling, bruising, hypersenstivity, colour and temperature changes all got a lot worse and it was only when I was diagnosed that my Pain Management Doctor told my mum that icing is one of the worst things you can do for RSD.

I have since read lots of articles on the internet about ice being bad for RSD - it's just a shame that myself and others have used it thinking that it would make things better and it didn't.

We asked my Doctor whether using hot and cold bandages would be OK and he said that I could try it but that he doesn't recommend it either as research as proven that it can make things worse.

Thanks again for posting this !