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Primary /Secondary Progressive MS For those living with Progressive MS to discuss treatment options and lifestyle issues.

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  #1  
Old 03-18-2011, 05:21 AM
foggyrose foggyrose is offline
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Question Swollen feet/legs anyone?

My neuro said it's lymph edema from immobility....Ouch! I use a powerchair all the time and can still stand for a couple minutes hanging on for dear life, but am unable to take a step.

My feet, ankles and lower legs swell horribly. They are painful, very heavy and usually either hot or cold to the touch. Between the swelling and neuropathy, I can only stand to wear slippers or some clogs. Does anyone else have this problem and if so, do you have any solution? My doctor said he'd have to "hang me upside down" to get the lymph to circulate back up my legs. I didn't take him up on that idea! lol!

Thanks for any suggestions you may have.......
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  #2  
Old 03-18-2011, 07:45 AM
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hi foggyrose, my lower legs and feet swell too. my dr rxed compression socks to help with the swelling. lack of weight bearing is the culprit. i haven`t found anything yet to decrease the swelling. i`m in a powerchair too. for the cold (which is 365 days a year) i wear extra heavy socks or slippers. i`ve tried many thing that claim to reduce the swelling, but nothing has worked yet. anyone have suggestions? good luck.

dave
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  #3  
Old 03-18-2011, 03:25 PM
EdinAZ EdinAZ is offline
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Hi, my ankles and feet swell as well. i do get some relief by elevating them. I'm in a w/c full time.
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  #4  
Old 03-19-2011, 09:19 AM
britnet britnet is offline
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YOU ARE NOT ALONE LOL

At the mo im laid up in bed with my feet higher than my hips and here i will stay for three days, after that my feet/ankles and legs will hopfully be ok again.

Sometimes this problem can be water but this can be checked through your GP.

It's a bummer and they get to a point that i cannot walk at all for the fear of bursing them, so my releif point in a few days in bed to get my feets back.

It is as hunterd said
Quote:
lack of weight bearing is the culprit.
If you do happen to find another rescue remedy id love to hear about it.
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  #5  
Old 03-19-2011, 11:04 AM
bluegiraffe bluegiraffe is offline
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Am also experiencing the swelling in my feet/ankles and just ordered some compression socks online that are on their way 15-20 mmHG - have been told they should help some.

Hunterd and others; have you found them to help ?

thanks - looking forward to responses on other ideas.
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  #6  
Old 03-19-2011, 11:56 PM
foggyrose foggyrose is offline
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I'm so sorry to hear that all of you experience this miserable result of "sitting" too. It's not enough that this disease took away our ability to walk, but it has to be painful to sit!

No, it isn't regular fluid buildup. Have tried "water pills" but they didn't help. They don't work on lymph edema. The compression socks may help, but I can't get them on by myself. My arms seem to be getting weaker, less coordination and definitely less patience! This whole "MS thing" is sure getting old -- I don't want to do it anymore.

Thanks for replying......hopefully someone out there has found the perfect remedy.
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  #7  
Old 03-20-2011, 01:13 PM
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stumblebum stumblebum is offline
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Me Too!

I too have this problem, water pills help very little and I didn't buy the compression socks 'cause I knew I wouldn't be able to get them on. I have enough problems with regular socks.

I try to walk more but we all know how that goes. I elevate my feet as much as I can. No easy answers to any of this ! Stumblebum
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  #8  
Old 03-20-2011, 11:57 PM
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MSGina MSGina is offline
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I'd like to say I found the cure but that would be a lie.

My GP does have me on a very strong diuretic much stronger than lasix and I lost 11 pounds in a week!!
However, my left leg (lower) continues to be much (visibly) larger than the right.

So, I'm supposed to go for a vascular ultrasound this month to make sure it's not a circulation problem.

I think it's important to rule out everything.

My new w/c has electric leg lifts and tilts as well as reclines so I can lay way back and elevate my lower legs.

When I'm sleeping I have an air mattress on my hospital bed and I raise the legs to help.

Compression stockings worked like sausage casing for me.
The part of my feet not covered just swelled horrendously and I too couldn't put them on or remove them alone.

Best of luck to all of you,
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Old 03-21-2011, 08:04 AM
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Quote:
Originally Posted by bluegiraffe View Post
Am also experiencing the swelling in my feet/ankles and just ordered some compression socks online that are on their way 15-20 mmHG - have been told they should help some.

Hunterd and others; have you found them to help ?

thanks - looking forward to responses on other ideas.
yep, i wear them and they help out! hate the feeling of them, but they work, soooo. i have found that my feet get colder than normal (i have reynauds) and i wear wool socks or slippers year round. good luck.

dave
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Old 03-21-2011, 08:13 AM
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forgot to mention, the foot dr said he could wrap my feet and ankles/lower legs. he said some people don`t swell for 3-4 weeks. all his patients that get this are sedintary and get no weight bearing exercise at all.
if you can get a wheelchair that stands you up onto your feet, that also should help according to a pt friend of mine. good luck in getting insurance to cover a verticle lift system (mine wouldn`t).

dave
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  #11  
Old 03-21-2011, 10:33 AM
SpringOwl SpringOwl is offline
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From my forum friend Diane who is a nurse:

The Cause of the Swelling

The heart pumps blood through the arteries under high pressure. As the arteries branch out into smaller arteries and then into tiny capillaries, pressure decreases. Oxygen is removed from the blood in the capillaries and then the "used" blood flows into veins for the trip back to the lungs for another load of oxygen. Unfortunately, the pressure generated by the heartbeat has been lost by then and the blood relies on simple back pressure to move back up to the heart. This is aided by muscle activity. Ordinary muscle movement "squeezes" the veins and pushes the blood along. The veins have little one-way valves all along the way that keep blood from draining backward as it is pushed upwards.
When muscle movement is lost, it becomes much harder to get the blood back up from the legs. It pools in the veins and causes them to get distended. Water seeps from distended veins out into the surrounding tissue and your legs and feet swell (edema). With repeated episodes of swelling, the little veins become damaged and leaky so that water seeps into the tissues even more easily. At the same time, the valves are collapsing under the heavy weight of all that blood that is pooled on top of them. That damage to the valves is permanent. Without the valves, the blood pools in the feet even worse than before and remaining valves are under even more pressure and more likely to fail.

Treatments

Doctors aren't very good about helping with swelling. The first thing they will say is to put your legs up to minimize the swelling but they don't tell you how to do that effectively. They will offer prescriptions for TED hose (somewhat helpful) and "water pills" (which should be used as a last resort only).
The first thing to look at is the chairs you sit in. A recliner may seem like the ideal way to keep your feet up and swelling down but it is NOT! There are two big problems with most recliners. First, the footrest section is made in such a way that all the weight of your legs rests on the calves. That is really bad for circulation. Second, putting your feet up - even way, way up - without "unfolding" at the hips is very minimally helpful, possibly even detrimental, as that bend interferes with the already difficult job of moving blood upward to your heart. Lift chairs are wonderful and most of them are recliners, but if you spend most of your time in a recliner, I strongly recommend that you bring the footrest up only when you lower the backrest.
Whether you sit in a regular chair, recliner, or a wheel chair, it must be properly fitted to you. You need to make sure that your leg to floor/footrest distance is short enough that there is minimal pressure at the back of the lower thigh and knee. Having your feet "dangle" is a sure-fire way to cause swelling! Put a box/platform under your feet (an old hard side suitcase worked great for me - lightweight and had a handle) or raise your footrest an inch or so. The objective is to make certain there is minimal pressure on the back of your knees/thighs. If you add a ROHO or other cushion you need to adjust your platform/footrest upward to make up for the height of the cushion.
The best treatment for leg swelling that I have found is something that I discovered entirely by accident: More time in bed.When my husband was working, I spent about seven hours in bed at night and then would lie back in my recliner for another two or three hours in the afternoon. Even with that, my legs were swollen by noon, miserably uncomfortable by evening and absolutely painful by bedtime. When my husband retired, I was able to go to bed at the usual time, listen to books on tape for an hour or two, and then sleep late in the morning. Instead of spending 10 hours lying with my feet up in two separate sessions, I began spending 10 hours or more in bed all at one stretch. Within a matter of days after starting this routine, I noticed that the swelling was minimal. Now I don't even have to lie down in the afternoon in order to be comfortable in the evening! I don't know if this is due to spending more time lying down at one stretch, spending all my lying down time in a bed rather than a recliner, getting more sleep, or some combination of the three. All I know is that in this has made an incredible difference for me. Not only has it made my problems with swelling minimal, I feel better in general.
Another thing that helps is muscle activity. Granny's old rocking chair served a real purpose beside putting babies to sleep! I find that the swelling is minimized on days when I am most active. (Interpret that as days when I am frequently hauled in and out of my chair and forced to stagger a few steps, whining all the way!) I guess I have some muscles left in my legs, even though I sure can't feel 'em! Even passive range of motion exercises help.
Keep cool. A few minutes of being too warm, toasting my feet by the fire,or just sitting in the summer sun is all it takes to turn my feet into balloons. (Blood vessels dilate when we are warm.) Simply keeping my legs in the shade makes a difference, but I have also been known to pour cold water over my feet on hot days when I need to be outside. Wet socks and tennis shoes are still more comfortable than that miserable burning sensation of swollen feet!
Sometimes I also have problems with a burning sensation in my feet in bed at night. It doesn't start until my feet began to warm up. It can get really bad in the middle of the night if I have the electric blanket on and my feet get really warm. That is a real nuisance because the rest of my body gets really chilled and I can't move at all if I pile on extra blankets. So, in cold weather I end up sleeping with the electric blanket on, but my feet sticking out!
For some people, this burning pain becomes severe and doesn't seem to be relieved by getting the swelling down. This might be the end result of long term or severe swelling. Some people find that aspirin (not tylenol) helps. Do not take aspirin if you are on anticoagulants (medications to thin the blood). If burning pain is felt when swelling has not been a problem, discuss it with your neurologist.
Limiting salt intake used to be high on the list of things to do to minimize swelling, and your doctor may suggest it, but the need for that is questioned these days. I guess it is enough to say don't over-indulge with salty foods.
Hospitals often use devices to improve blood flowto the feet of patients who are going to be stuck in bed for a while in order to reduce the risk of blood clots. TED (elastic or compression) stockings are by far the most common. By simply squeezing the legs and feet a little, they help keep the veins from getting distended. You can ask your doctor for a prescription for these stockings, but unless you have strong hands and arms, you will need help getting them on.

Hospitals also use types of "boots" that inflate and deflate to help pump the blood along. One study showed that simple alternating pressure on the soles of the feet greatly improves flow, so some brands of boots simply apply waves of pressure to the bottom of the foot. With help from your doctor you may be able to get your insurance to cover the cost of this equipment. It is not complicated to use, but you must be very careful to make sure that it is not rubbing anywhere and causing breakdown of the skin.
If you complain about swollen ankles and feet to your doctor, odds are he will whip out the old prescription pad and put you on diuretics. I have real reservations about this because many of us are borderline dehydrated half the time anyway. (Another contributing factor for the development of blood clots.) It gets hard to reach a drink, or hard to swallow, or it is simply too hard to get to the bathroom so we don't drink as much as we should. Diuretics cause your kidneys to remove more water from your blood stream. The "thicker" blood is then able to "sponge up" more water on its travels through the body so it does reduce the edema. It does nothing about the cause of the edema -- poor blood flow however. Using diuretics for swollen legs is kind of like taking a diuretic to lose weight - sure it "works", but it doesn't really solve the problem.

I certainly won't say diuretics should never be used -- if nothing else works well enough to keep the swelling under control, they need to be used because the swelling further damages the veins and valves and the situation just gets worse. But all the things described above should be implemented first before diuretics are even considered.
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  #12  
Old 03-22-2011, 03:35 AM
foggyrose foggyrose is offline
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Well, I certainly have discovered I'm not alone with this problem and that it's definitely a tough one to correct. Thanks so much SOwl for that description. My eyes had a little difficulty reading it all, but I'm glad I did!

It was surprising learning a recliner was actually worse than a bed for swelling legs. I've been sleeping in my lift recliner for over a year mainly because it's sooooo hard getting in and out of bed -- no help. It took forever getting my legs up onto the bed, then so much body pain from not being able to change position much, and then, of course, getting out was a nightmare.

I do use the "lifting" function of the recliner several times while sleeping for a change of position. The pressure of my feet on the material, hurts my heels. When I sit up, my feet do reach the floor. Guess it's all these side effects that are so frustrating, like the horrible spasms that straighten out my painful, swollen legs. I HATE THIS DISEASE!!!

Thanks again for all the replies and here's to less pain with "skinny legs" for us all!
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Old 03-22-2011, 02:21 PM
nabean nabean is offline
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Hi folks,

Both my father and I have MS. He has been in a wheelchair for almost 10 years. His feet were really swollen for the last several years, but he is also diabetic. Just before christmas he changed doctors for his diab. and got a new medicne protocol and his swelling has gone down considerably. According to mom, it is the first time in years she has seen his ankles.

But my father also visits a personal trainer three times a week and mom my mother hooks him to this motorised bike things for an hour everyday. She puts his feet on the peddles and straps them in and then the motor moves his legs like he is on a bike. It is kind of funny to watch because he usually takes a nap while the machine is moving his legs!

It is probably the combination of the new med regime and the exercise, but he is doing better lately then he has in years.
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Old 03-22-2011, 11:24 PM
Zencali
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Originally Posted by hunterd View Post
hi foggyrose, my lower legs and feet swell too. my dr rxed compression socks to help with the swelling. lack of weight bearing is the culprit. i haven`t found anything yet to decrease the swelling. i`m in a powerchair too. for the cold (which is 365 days a year) i wear extra heavy socks or slippers. i`ve tried many thing that claim to reduce the swelling, but nothing has worked yet. anyone have suggestions? good luck.

dave
Once I watched a show about this woman who lived to be over 100 and they asked her what exercises she did even though she was bedridden. She said she wiggled her toes so many minutes every hour. I tried it and found it is quite a good exercise. Self massage is another thing that helps at least for pain and you might want to use some type of nice ointment/salve type thing to massage in. Try things also like pointing the tose and moving ankles in a circle while laying down. HOpe this helps a little. Oddly I have had all kinds of pain but only swelling recently. I'm going over to Limboland to tell my big surprise about a recent diagnosis I got. Read if you like.
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Old 03-23-2011, 04:04 AM
foggyrose foggyrose is offline
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Hey there nabean -- I'm really sorry to learn that both you and your father have MS. Are you still able to walk and get around? God Bless your Mom as she has her hands full! I'm glad your father found something that has helped with the swelling! All the best to both of you.

Zencali -- Thank you for sharing the experience of the elderly lady doing exercises in bed. Only problem is personally, I'm unable to move my toes/feet/ankles and it's extremely difficult reaching my feet with the rest of me being so stiff. Sometimes I sit here looking at my feet and tell them what to do.......they aren't listening! Good luck to you.
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