For a while I've been trying to figure out why there wasn't anything I could find in the literature on the treatment of CRPS-induced swelling with a class of drugs called diuretics, basically drugs designed to increase kidney functioning as a way of removing excess fluids from the body. My interest having been piqued by the ballooning of my feet over the last few months, six years into RSD/CRPS, to to point that over the last couple of weeks I haven't been able to fit into one of two pairs of sandals that had stood me in good stead through August and September.

Turns out that the stumbling block on the use of diuretics for CRPS induced swelling was over a significant point, wherein the concurrent use of diuretics and narcotics tends to produce something called orthostatic hyotension "(also known as postural hypotension, orthostatic intolerance and, colloquially, as head rush or a dizzy spell) is a sudden fall in blood pressure, typically greater than 20/10 mm Hg, that occurs when a person assumes a standing position, usually after a prolonged period of rest." http://en.wikipedia.org/wiki/Orthostatic_hypotension

After waiting for a call this evening from my internist/cadiologist, he faxed me a letter instead, suggesting that my best options were continuing my restriction of salt, which is already very low, wearing support stockings (a non-starter where I can't tollerate any compresssion around my ankles) and keeping my legs" elevated [above my heart] as much as possible." A certainly well meaning suggestion . . . .

So it goes and now we know.

Mike

Mike,

What wonderful helpful advice
I am sure that soon your oedema will be just a distant memory
To be honest, all my doctor says "Neurogenic Oedema is the most difficult to treat." This of course is no help when you feel as though you limbs are going to split like over cooked hot dogs!

Sorry I can't be any help
Tayla

I showed my right foot to my Dr. a couple of weeks ago. It is doing the same thing as yours and I can't wear certain shoes. I wear sandels in the summertime but in the winter it's going to be a harder problem. My RSD is worse in my right foot up to my knee, second to my right arm and hand and my pelvic/hip area.

I did buy Morton's light salt to see if that might help but so far it hasn't. It's got half the sodium in it. You might want to try it and see if it will help some. So far it hasn't for me but I like popcorn at night for a snack and I have been pouring it on so I might be using to much of it.

Who knows, nothing might do it. Like you, I have had the RSD since 98 and this is the first time I have delt with the swelling in the foot and leg.

Sorry to hear you are having this and I do hope it starts calming down for you.

Ada

My leg is like yours. It is really swollen from the knee downwards. I cannot wear any shoes, I used to be able to get sandals on but now I cant because of the swelling and hypersenstivity.
Before I developed RSD I was a size 4 in shoes (I am only 12) and after I developed RSD it went to a size 6 on my bad leg and a 4 on my good leg!
I have asked my physiotherapist if she's got any shoes that I can wear, but they will not supply me any!
Thanks for the advice Mike
Alison

Mike,
I have had troubles with my BP dropping like a rock when I stand up, or stand up too quickly, for my whole life. I have had these “spells” hit so hard, that I have fallen and injured myself. Almost broke my forearm once, before RSD came along, when I got up and went over to turn off the TV too quickly. I made it all the way across the room, reached out towards the TV, everything started to “go grey around the edges” (which is what it looks like, from my side of things anyway, when this thing happens), and WHAM! Next think I knew, I was on my butt, with my arm lying in the remains of a decorative crock that had been sitting on the floor near by (this was at my Mom’s house....and she had put some kind of long fluffy plant matter in the crock for decoration. It was a big crock. LOL).

I didn’t break my arm, but I bruised the crap out of the bone (and the rest of it, for that matter). That is the worst episode that I have had with this thing. Usually, when it happens, I just get up...and then have to grab a wall or something, and ride it out. They only last a few seconds.

I am glad that you put this post up, as I don’t need to try to do anything that would make these “spells” worse. I don’t use diuretics to try to help with swelling (they can cause other troubles too, like helping dehydration along, especially in Summer, and messing up electrolytes and such), but I have thought about it, when the swelling gets pretty bad.

The new doctor that I have told me to try forcing liquids...well..he said water, not just liquids, to try to help with the swelling. I thought that it sounded strange...I mean...ADDING more water? But, I have been trying that and drinking LOTS of water every day....and I do have to say that my swelling has gotten a bit better. It isn’t gone by any means....but I can fit into my shoes....and have been able to ALL Summer long. Even when I went on my big cross country trek, when I was SURE that I would wind up with elephant legs. I didn’t.

I don’t know why this seems to be helping me. Like I said, it doesn’t really seem logical that ADDING more liquid would help to keep down the worse of the swelling problems that I have. I see him again next week. I am going to ask him why this has been working...and if it is something that might work for you and others.

I know that since I have been making a conscious effort to drink LOTS of water (in addition to the other liquids that I drink too....so I am Pretty Well Hydrated. LOL), I have noticed that some other troubles that I have been dealing with for a long time, have gotten at least a little bit better. I still have constipation problems....but not as bad as before. I have also noticed that my skin seems to be healthier looking. Also my hair....but I am not at all sure that has anything to do with drinking so much water! LOL. I guess I need to ask Meghan about that one, since Hair & Nails and stuff are her “thing”.

I thought that I had always been keeping myself pretty well hydrated. I drink A LOT. Partly because I have dry mouth (from my meds, I have always thought...and..no.....that is one thing that still seems the same. Drinking all of this water hasn’t gotten rid of or helped with that), and I hate it. But, I guess not? I could more easily figure this out, if I had been a person that didn’t drink water before this....but I DID! So, it is a mystery to me. LOL

Anyway....I just wanted to thank you for putting up this post. If diuretics can cause this problem, then they are something that both Meghan (as she also has these spells sometimes) and I should probably stay away from.

I hope that your swelling issues ease up soon. I know how bad it sucks when such a thing is going on. LOL, I always HATE to have to go and buy something bigger to fit my elephant feet when dealing with swelling like you are now. But, then...maybe that is because I ALWAYS Hate to have to go and buy thing sto go on my feet, because they are pretty dang huge to begin with, even when NOT horribly swollen! LOL

I will be sure to let you know what I find out from my doc about this water thing...if you are interested.

Love and
Jose

PS...has ANYONE heard of drinking LOTS of water actually helping with swelling problems a little? Like I said...I still have swelling. I just haven't had the HUGE kind that I usually get....this all really has be baffled.

Jose

My doctor gives me the diuretics for when the swelling gets to be full body. He told me just take for a couple days to help relieve the discomfort of all the swelling. It works usually in one dose, and I feel much better by the next day.

He did warn me to stand up slow, and if I have to, hang on to something. Really, I havent had much trouble with dizzyness though. I am totally salt free, except for what is already in the food, and it was a chore to get the salt intake down because of the flavor factor. It does help alot to get the salt intake down to as low as possible.

I am just now getting over the flu, and my wife bought some chicken soup mix to give us something for nourishment. Oh man each sip of the broth was like eating a teaspoon of salt! I never remembered the flavor of this kind of soup being that salty lol.

Back in my healthy days, I worked out with heavy weights 4 days a week. I learned early on that drinking alot of water was a good habit. If you didnt drink enough water the body would retain water, because it knew it wasnt getting enough compared to what was going out. But if you drank lots of water, the brain would tell the body to stop retaining water, and it would start releasing water. This would help flush out toxins and such in the system.

Now if I could just find a doctor to prescribe some pain relief, life would be much more enjoyable

I have heard of drinking water to help with swelling. I do drink a lot of water everyday but it hasn't helped with the swelling.

I forgot to say also all of my fingers are swollen. I have had to take all of my rings off. The only one I still have on is my wedding ring and I am hesitant about taking it off yet but I have to use butter to get it off. This just started awhile back.

My right hand is the worst but I am having surgery on it next Thursday. I think some of the swelling on my right hand is from my injured finger but I do know it's not all that due to my left hand being the same.

It would be interesting to find out what your Dr. says Jose. Any input would be good.

Ali, could you buy 2 pair of shoes to get two different sizes. I know it could get expensive if you buy very many pair but maybe one good expensive set would help for when you have to go places.

Thanks for this thread Mike, maybe we can learn from others how to deal with some of the swelling.

Ada

Thank you all for your input on this one.

For the record, the particular diuretic we were looking at is called Aldactone, and I have the following from its U.S. (FDA approved) prescribing information sheet:

Drug interactions:
* * *
Alcohol, barbiturates, or narcotics: Potentiation of orthostatic hypotension may occur.

http://www.pfizer.com/pfizer/downloa..._aldactone.pdf

And Jose, to the extent that you could get more information of any kind from your doctor - including citations in the literature - to "fighting water with water," it would be greatly appreciated.

Thanks again.

Mike

hi mike

thanks for that - i have had orthostatic hypotension for a year or more (not sure of dates!) and I have been on diuretics to try and reduce the full body swelling I was getting (and it was agony to pee because of the retention etc). Anyway I did realise that the hypotension got worse with the diuretic but just blamed it on...RSD (most things are attributable to it).

Ali - go to somewhere like foot locker as they are pretty cheap and get the backless trainers, on in a small size and one in the larger size. Alternatively buy one large pair and then wear that with your bad leg and wear another one you already own on your good leg. I have had HORRENDOUS swelling in the past (3 times the size of a normal limb to the point where my skin has cracked/ split which thankfully lowered after a year or so) and because the physios wanted to desense me they just took a pair of scissors to a pair of backless shoes I owned and split them down the middle until I could get my feet inside. It actually worked really well even though the shoes were ruined but it meant I could go a size up and have something on my feet. Weird - when I was walking/ crutching I could wear shoes not socks. Since I've been in a wheelchair I can wear socks (mostly) not shoes. Just an odd thought.

Love ya

Frogga xxxx

Dear Frogga -

I have requested this article from my friend who has access to such things:

"Neurokinin mediation of edema and inflammation," Campos MM, Calixto JB, Neuropeptides 2000 Oct; 34(5):314-22.

The aim of this article is to furnish a brief review of the role played by neurokinins in the inflammatory process. Further attention is given to the mechanisms, as well as to the receptor subtypes involved in neurokinin-mediated inflammation, in an attempt to clarify the participation of neurokinins in different models of acute and chronic inflammation. The involvement of SP, NKA and NKB is also examined in relation to the major signs of inflammation, including edema formation, protein plasma extravasation and vasodilatation. Finally, we provide a general overview on the potential clinical applications of neurokinin antagonists, along with the involvement of neurokinins in human diseases.

It sounds interesting. Edema - or oedema for our friends in the Commonweath - obviously ties into an inflammatory process, it would just be nice to understand the mechanism in a little more detail. I'll make the article available, when and as it falls into my hands.

Mike