Swollen legs???
 

Hello, I'm new here. I've has RSD for 3 years and 9 months. It started in my hand and has spread to my legs. I can walk short distances but usually my knees start hurting so much I have to sit down. I have gotten used to this and know how much I can handle. What is confusing to me is that occasionally,my legs swell from the knee down. It feels like I have on tight knee socks. I don’t know what causes this. I will get a flare-up and it usually calms down in a day or so. This one has lasted four days so far. Yesterday I was sure my legs seemed bigger so I measured them, then measured again this morning. They were ½ inch smaller this morning (I am small so this is significant for me). I have had nerve tests done on them and the results were normal. My skin coloring and mottling is typical of my RSD and looks the same during these episodes. I don’t know if it’s inflammation or fluid retention or? Does anyone else have this happen to them?
Linmarie

Hi Lin, Welcome. I have rsd in my leg as well. Swelling is part of the rsd package. My left leg from my thigh down is a half inch larger than my right. It has been that way since the beginning. It is part of the rsd package for me. Like you I am very tiny so it is easily noticed. But, compared to the pain and the disability that rsd causes I don't pay much attention to the swelling. It's just a way of life now. Hope you enjoy being on board. Best wishes to you. Jeannie

I never really had a problem with swelling the last 7 years, but all of a sudden in the last month or so both legs are blimps from the kness down. My poor toes are stuck straight out, and I can barely wiggle the ones on the foot that works.


I wonder if that isnt helping my blood pressure?

Swelling appears to be part of RSD and it is one of the symptoms. More RSD academic people can probaly explain why - all I know is it can be very annoying! pitting oedema is not a good look! (I'm 21). Welcome!! I guess the basic way to get swelling down is exercise as the muscles pump the fluid back up the lymph system. Also, when you lie down have your leg elevated and ensure that you don't sit with your leg down for a long time. I think that it's tightening and loosening the calf which is good for reducing swelling as it pushes the oedema back up the veins or something. Another member here, In His Hands (IHH) wears oedema stockings.

Hope you get the help you are looking for!

Love

Frogga xxxxxxxx

Allen- I thought I was the only one that had this problem!! My toes stick straight out so badly and they don't want to move! I kept telling people that my toes felt strangely, but they look normal to everyone else! :confused:

As Frogga said, I wear compression stockings that really do help with the swelling. I have had a lot of problems with swelling, and this is the only thing that has *really* helped me. The compression is a bit tough to handle (especially if you have allodynia), but I know you can get different compressions. They also come in a few colors -so they can match your outfit :p- ... you might want to look into them. You can even buy compression stockings for your arms!

Here is a site:
http://www.jobst-usa.com/products.html

And another:
http://www.supporthosestore.com/index.html

I have Jobst stockings.

Elevation helps a little as do lukewarm epsom salts. Hope I helped in some way!! :hug:

swelling
 

My daughter gets a lot of swelling with her foot and ankle from the RSD. Her pain dr has recommended wrapping it in an ace bandage type of wrap to help get the swelling down. It is important to wrap above and below the swelling points for her. She also wears diabetic socks that help. She does have to keep trying to move her foot so we have had to take off the wrap and make her move it and then put it on. The drs have also said the swelling occurs from not enough weight bearing activities by my daughter so pool therapy and me making her stand has helped. Using a comfrey leaf wrap also helps reduce the swelling.

Hey RSDmum

What is a leaf wrap?

Thanks

Frogga xxxxxxxxxxxxxx

PS - I know about the feeling about toes..!!!

I'm just going to add a quiet little recommendation for giving herbal remedies a try. My friend with RSD who I care for has tried at least 60 drugs and remedies (and is scathingly skeptical now), did try some arnica gel I recommended on a horrendous bruise recently. Her bruise cleared very rapidly, to her amazement. I think herbs, because they are gentle and work differently than western medication, might be more effective for some people with RSD.
DISCLAIMER This is my own completely non-scientific opinion based only on the study of herbs and herbal medicine. But at least it is offered respectfully and humbly...

comfrey leaf
 

Frogga= Becca's alternative med dr recommended getting comfrey leaf. It smells like a tea and looks like loose tea. We found it in bulk at our local food co-op in the spice section. We fill a cloth full of the leaf, steep it in very hot water for 20 minutes, squeeze it out and put it on her foot. I saran wrap it to keep it from staining and dripping and then put a towel around it as she really likes the warmth. She leaves it on for as long as she wants (average 30 min). You can do it several times a day. Her pain dr and pediatrician also endorse it.

Mollymcn- I agree (with my own disclaimer) that alternative meds can be helpful. Becca also takes Boswellia and Turmeric twice a day with her arnica tablets. She feels out of anything, these have helped her.

I have always asked about drug interactions and so far so good.

sounds great RSDmom. Thanks!!

now for the dim bit - how does one saran wrap? LOL! sorry, I know I'm abit thick... :o ...

Thanks so much! I'm going to give it a try after the disasterous wheat bag episode ending in me getting burnt and nearlly burning down the kitchen in the flat in halls!! (luckily not my kitchen!) and stinking the entire flat out with burnt lavender. This will definetly be left in the competent hands of Leah (my carer)

I'm glad it's helped Becca - how is she doing?

Thanks so much again!!

Froggsy xxxxxxxxxx

Was listed in wrong place.

I actually thought about whether or not 'saran wrap' was universal--it is plastic wrap that you can use to cover/store food. You can use any wrap you want as long as you don't mind the fact that it will stain.

I was going to tell you that if you like the warmth, cover the water while it steeps in the wrap to keep it warmer.

Hope it helps.....
By the way--Becca is having-dare I say- a great week. She is starting to walk without her crutches and is taking a couple classes at school. She has been out since Christmas so this is pretty cool. Only about 18 days left of school, but who is counting--(Can you tell I am a teacher!)

Hey RSD mom

Thanks!! Ah, it's called clingfilm over here... I will definetly try it - and with a covered pot lid! awesome, thankyou! LOL! did guess you were a teacher by that bit!! hey, it's just as bad for the students - I am on count down to end of term and attempting to get my liver in shape for end of fresher year at uni (when all my mates move out of halls)... Really glad Becca has gone in though! and managing without crutches that is so awesome :D YaY!

Love

Froggsy xxxxxxxxxxx

PS - What do you teach?

Thanks for the suggestions. I did try the epsom salts today & it did help. My swelling gets worse when I am on my legs for longer than normal periods of time. I did pool therapy the other day & they seemed to be worse afterwards. I wasn't measuring my legs then so I don't know if they were more swollen or just felt like they were. I layed around all day yesterday and my legs were 3/4 inch smaller than the day before and feel better today - I've been able to walk around the house a little today. It's really painful for me to walk when they get really swollen. I'm going to see if I can find some arnica gel & comfrey leaf. Do those compression socks hurt? I already feel like I have tight socks on.
Thanks again,
Linmarie

My daughter prefers the diabetic socks sometimes when her pain is bad, sometimes she hates the feel. Depends on the day/time/anything. When it feels good, it is worth it!

She has had good relief with the comfrey leaf, and the arnica gel is pretty new. I definitely recommend trying the gel, like and new thing, in a test patch.

Frogga-- I teach elementary (age 5-12) kids with special needs...several children with autism, downs syndrome, genetic disabilities and other kids who for a variety of reasons need help. I do think there was a reason I learned all about sensory issues in my job--sure has paid off in helping my daughter with her RSD as it is so sensory based at times.

To answer you honestly, yes! They do hurt, but they also work to keep the swelling down, so it's something you've got to do. I have signifigant allodynia -so anything touching me hurts, so you can imagine having your legs squeezed. :eek: IT HURTS! But they work, so... :eek:

You can get different compressions (I have "firm" 20-30 compression stockings, but could've went up the next size because my swelling does get severe).

If you click here: http://www.jobst-usa.com/opaque.html
and then under "compressions" there are the following numbers:
15-20
20-30
30-40

If you click on each one there are descriptions so you can read, based on how severe your swelling is, what compression size you need.

You also need your measurements so that you can get the size AND compression you need. I'd suggest going to a medical supply store, let them measure you and help you get the correct size. Or, if you can get them online cheaper sometimes you can get a person at the medical supply store to get your measurements for you. Either way, if you mail order, buy online, or at a medical supply store; see if you can get your doctor to write you a prescription for them, so that the insurance can pay for them (or at least some of them).

Hope I helped! :hug:

Here is some helpful info:

Are the diabetic socks going to have a tight enough compression? I think it all depends on how much your feet swell, to decide whether or not diabetic socks will work instead of compression stockings. For signifigant swelling, I personally would recommend you wear compression stockings- one of the few things that has helped with swelling.

Compression socks should be gradient
 

Swelling of the legs and feet can be caused by many things. If you want to try support socks, make sure they are gradient compression, providing more pressure at the bottom and less at the top to move excess fluids back to the heart.

Good Luck

Yes, it can be caused by many things, but in this case we are all talking about swelling from reflex sympathetic dystrophy...

Are you trying to sell the socks??

Do you happen to know anything about RSD?

DocDogg
Thanks for the advice. What are some of the other things that cause swelling of the legs and feet?
Linmarie

Hi Linmarie,
 

heart problems can cause swollen legs or feet and also high blood pressure. Retaining water from kidney and heart problems can.

I don't have the swollen legs but like Jeannie said, my right leg from my knee down is bigger then my left. I noticed it quite awhile back when I turned around to look at my back in the mirror.

As far as socks. I wear them in the winter months and no matter what size I get by the time I take them off at night they have sunk into my legs and left their marks.

Docdogg, welcome to the forum and thanks for that info on the socks.

Ada

Swelling never seems to go away!
 

I have RSD in my legs and the swelling is just amazing, actually that is what led me to this site yesterday! I have had swelling so bad that it looks like I have small patches of little blood spots under my skin. I hurt terribly and the saga continues. I get tired of complaining as I am sure so do others get tired of hearing me. To make matters worse I had my left knee replaced at a very young age (34) because of severe damage to the knee itself and I cannot bend the knee hardly at all because of the swelling, so the knee joint never gained the mobitlity it could of had after the new one was placed because of the RSD. SOOOOO I have a Fat Swelled leg that is almost non-functional and seems to keep getting worse. I believe my skin could and surely will split soon at the rate it is going. I am at a loss for what to do next? I have tried just about everything everyone has ever suggested but I am willing to keep trying if anyone else can help .:Sigh:
rcboobear:o

Continued Swelling
 

My Doc is somewhat puzzled, because I have elevated my legs for days and that doesn't seem to change things and I have a spinal stimulator implanted in my spine and it is working but this seems kinda like a bit of a different pain.
Same yet different in some ways and we are just puzzled? I am awaiting an appointment with my orthopedic Dr. to see if he has any ideas and go from there I guess. Until then I will just hang in there and I am glad to have stumbbled onto this site to be able to chat with others who care and experience some of same things I face from day to day! God Bless each of you and Thanks for being there and for reaching out and caring! :grouphug:
Cindy (rcboobear)

Hi Rcboobear,
Welcome,
Sorry to hear that your knee is so dysfunctional. You did have a knee replacement at a very young age.
My pain doc sent me to a rheumy to see if there is anything else going on with my legs but the rheumy just went out on medical leave to have a baby so I'm no further ahead as to what my problem is (if something other than RSD). She took blood tests & wants me to have an ultrasound (which I haven't done yet because of fear). My legs get more swollen as the day goes on. Some days the elevations helps, some days not. I do know that being vertical makes it worse for me. I do some exercises every other day.
Some days they are just worst than others & I can't figure out why. I've been doing a detailed journal & can't figure it out.
Ada,
I, too, noticed in a mirror. I had been complaining to doctors for about a year and a half about the pain but none suggested that it might be swelling.
Come spring, I have on shorts, am standing in front of a mirror and wonder why my calves look bigger than my thighs. The sock marks used to happen to me but now I only wear loose, soft socks. They feel so much better.
Linmarie
:grouphug:

leg swelling with RSD
 

I have been told by my doctor that is the nerve cell that is holding fluid not tissue like normal edema- that is why diuretics are not perscribed for RSD- how weird is that- just goes along with everything else dreadful about this disease- also that the bloodcell actually leaks fluid into the tissue resulting in edema- I cant say I understand all of this just repeating it. I could not stand to have my legs wrapped with Ace bandages and am surprised that helps as RSD swelling is so different from normal swellilng- Id be careful with any restriction. Good luck, CZ

Compression stockings
 

This post caught my eye as I contacted RSD back in 1995 but not diagnosed until 1998.

DocDogg is correct when saying edema can be caused by many things. Best to get any swelling checked out.

Compressions socks are very good unless one is in heart failure. I wear them most of the time but you must put them on first thing in the morning. The higher the compression the more difficult it is to put these stockings on and to take off in the evenings. Get spouse or someone to help if this is difficult.
There are many places on line one can research for compression socks. These are also sold in medical supply stores and some upscale drug stores.

The lightest compression is 8-15.....These are for light swelling and fatigue.
15-20 is probably the compression that is sold the most (per the pharmacy where I buy mine) As the compression goes higher so does the price. )-:

There are many brands. I can tell the difference between brands even with the same compression. Jobst has been around forever and what my doctor recommended. But, it is up to the individual taste. Higher compression can be had with an RX. Discuss all this with your doctor if you feel they may help. Compression stockings have really helped me.
Lisa

HI CZ,
Your response is interesting, particularly since I just got results from blood tests and my aldolase plasma is very high. The research I did said that the cells leaked the fluid like you said. I haven't been able to reach the doc as she is out having a baby, so I don't know if this is the cause of the swelling but that is what she was trying to figure out.

Lisa,
Thanks for the info on the compression stockings. I'm going to wait to see what the doc says. I'm glad to here that they helped you.

Linmarie

:grouphug: