Swelling in legs: Hi everyone, does anyone have any... - PMRGCAuk

PMRGCAuk

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Swelling in legs

Charkha profile image
26 Replies

Hi everyone, does anyone have any advice as to how to relieve swelling in lower legs and feet. My feet, ankles and legs get very swollen during the day and diuretics do not seem to help. The worst part is that the swelling in feet and ankles does not go down at night after lying in bed all night, so I start the day with swelling that gets worse and involves whole legs during the day. My situation is complicated as I have MS and am in a wheelchair although I do transfer to recliner quite often and usually in the evening. I have also tried lying with feet above head for half an hour or so (I have a wheelchair that will do full recline) but maybe I should try that on a more frequent basis during the day. Problem is that there is not much else you can do in that position!!! I know there are probably not anyone else in my position exactly but any advice as to how to reduce swelling would be welcome. Thank you all.

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Charkha profile image
Charkha
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26 Replies
PMRpro profile image
PMRproAmbassador

The basic rule is feet up whenever you are sitting down. I can use my computer and do that - reading the paper, doing the forum, watching TV - and I am very lazy about housework!

Have you spoken to your doctors? Most doctors don't worry too much if your feet improve overnight but since you say yours don't - it needs to be checked out.

Have you tried manual lymph drainage? Often there are local practitioners who offer it for breast cancer patients post surgery, It may also help to wear special support stockings to encourage fluid return,

Bit of basic reading:

webmd.com/dvt/why-legs-puffy

Seacat30 profile image
Seacat30 in reply toPMRpro

I think the rule of thumb is to get your feet up above the level of your heart if you can manage that as often as possible?

Charkha profile image
Charkha in reply toSeacat30

Hard for me to do without help as I have to manually lift my legs. But I am going to be more regular about tipping my power wheelchair into full recline. It is a little scary but I will probably get used to it if I do it more often!

Charkha profile image
Charkha in reply toPMRpro

Thanks so much for this information. I will certainly check to see if there are any practitioners here who do manual lymph drainage. I did get a device that you slip on legs (looks like boots} that inflates and “massages” feet and up legs. Doesn’t seem to do much but it is probably good for my legs.) i am wearing support hose but will talk to the doctor about the fact that the swelling doesn’t go down at night. I am thinking of getting a floor stand for the iPad so that when I am in recline in wheelchair with head below feet, I could still read which would make me more inclined to do it!!!!

PMRpro profile image
PMRproAmbassador in reply toCharkha

Grammy80 on here has used something similar if I remember rightly.

SheffieldJane profile image
SheffieldJane in reply toCharkha

Audio books are my new friend, relaxation YouTube offerings and BBC Sounds. What about a recliner that can elevate the legs? In the good old days you could get help to purchase something that would help. I don’t like to think of you leaning so far back in the wheelchair. I wonder if Social Services could offer any advice or help. Or am I dreaming?

Charkha profile image
Charkha in reply toSheffieldJane

Yes putting the power chair into full recline is a bit scary but I am not actually tipping it back myself so it is quite safe (although I have visions of the motor quitting and getting stuck in the head down feet up position! It tips the seat all the way back and elevates the legs. I always have phone at the ready just in case!) audio books sounds like a great idea. I am actually in the US (Texas) so social services not around here although insurance did pay for the wheelchair so I am very grateful for that. I am also wondering about looking into the possibility of an electric bed which would elevate my legs at night. I can’t prop my legs up on pillows as I wouldn’t be able to turn over or get out of bed if I did that. I have to have a grab rail on the side of the bed to pull myself over to turn and get to the edge of the bed so I can then get out. I think the electric beds are very expensive but it will be worth looking. Thanks so much for your reply. It means a lot to me to get the helpful comments and advice.

tangocharlie profile image
tangocharlie

I have what sounds quite similar. I've been told elevate and moisturize. I've had doplar tests and ultrasound scans that show some valves in the lower legs are incompetent - aren't working as they should to pump blood back up the legs. There's a mix of pitting and non-pitting oedema. You need to see a vascular specialist to tell you more about what's going on in your particular case. I wear the support stockings they told me to use but they don't seem to do much good, maybe taken a bit of the redness away and the shins are a bit less 'leathery'. Might be worth a try but you need more info

Charkha profile image
Charkha in reply totangocharlie

Thanks much for the information. I see the rheumatologist next week and will ask for a vascular consult . I will try elevating the legs more. I also wear the compression stocking but it just pushes the fluid further up the legs. It is pitting edema.

PMRpro profile image
PMRproAmbassador in reply toCharkha

You say diuretics don't work - have they tried different ones? And have you cut salt in your diet?

Charkha profile image
Charkha in reply toPMRpro

At one point I had a salt deficiency and was told to put more salt in my food but have not been doing that for a while and my blood tests show no more deficiency. If I remember correctly the primary care doctor picked this particular diuretic because of the low salt problem but I plan to ask him now about maybe switching to another one. Also i will watch the salt levels in the food I buy. Thanks for reminding me about that.

PMRpro profile image
PMRproAmbassador in reply toCharkha

The diuretics are potassium sparing, not sodium. BUT not all diuretics work for everyone and the dose must also be correct for you. Also, the longer you are on a particular diuretic, the less the body may respond to its effect. I think you should ask for a review.

Charkha profile image
Charkha in reply toPMRpro

Thanks for this information. I will definitely ask for review. By the way I have been sorry to read of your recent problems. Hope you are doing better.

tangocharlie profile image
tangocharlie in reply toCharkha

I also have that problem of the swelling being pushed up and I also get bruising around the knees - you might need over the knee stockings or ones made to measure for you, but I'm told to persevere as it's not an instant solution, more a long-term thing to stop things getting worse. There is something called RS3PE syndrome which is associated with autoimmune conditions and affects hands and legs, it might possibly be partly that, but when I've mentioned it to different doctors apart from the rheumatolgist they've never heard of it. The only treatment for that is steroids. Strangely enough, on higher steroids the swelling goes down a bit in my case so I think there is at least an element connected with PMR, and you also have MS, another AI condition. Or it may be totally unconnected and just one of those age things. Tests are the first step.

Thelmarina profile image
Thelmarina

Sooo uncomfortable! With my DVT, very swollen leg and ankle, I was told to elevate above the hip rather than the heart so you could check that out as much more doable. Just putting your feet up doesn’t help as you say. Also gentle circulation of the ankles to the left and right as you sit/lie. I was told to move around every hour to help pump through the fluid a bit - also to drink one and a half litres of water (nothing more interesting alas) a day. This may seem counter intuitive but if you don’t hydrate enough the body holds onto the fluid it does have which contributes to the swelling. I know your situation is different and more restricted but it might be worth asking your Consultant/Medic whether any of these tactics could apply in your case. The swelling not going down overnight is significant and should definitely be checked out. I do so hope you get support - very best of luck ❤️

Charkha profile image
Charkha in reply toThelmarina

Thanks so much. I do think that I need to drink more and will make sure I do that. Also helpful to know above the hips is good and certainly more easily doable for me. And I can move my ankles more regularly too. I am fortunate in having doctors who are supportive so will check all this out with them.

Marguerite2013 profile image
Marguerite2013 in reply toCharkha

Hi Charkha, I would get what is known as a "pillow lifter" which works electrically, like a hospital bed. The OT who came and saw me suggested this and I tried it with success! In my case, I think it is probably lack of circulation due to lack of exercise which is because of severe arthritis in feet, ankles and knees mainly. However the pillow lifter has been very successful, but if I don't exercise or lift my leg the ankles do swell late afternoon. The only thing my GP did was do blood tests to check I have not got heart failure, which I did not have thankfully.. I am the same age as you - so this is a vulnerable time of life, esp if one has other problems. I think as one of the respondents here mentioned that you either listen to records or talking tapes - and perhaps use a tablet or mobile phone rather than the laptop. An elderly friend of mine, aged 92, also has this problem and her doc suggested she get up and MOVE every 15min... I cant do this when concentrating on stuff I write on my laptop, but as my pillow-lifter does help with reducing the swelling at night, and one can adjust the height electrically, I have not been too worried.Best of luck and hope you get relief soon!

Charkha profile image
Charkha in reply toMarguerite2013

I had never heard of a pillow lifter so was very glad for the information. I was telling a friend that I was thinking of looking into the possibility of an electric adjustable bed with the footrest that elevated and she said she had one that she didn’t use and I could have it if it worked for me!!! So that is wonderful. If, for some reason, it does not work out, I will definitely look at a pillow lifter. Thanks for the good wishes and the same to you.

Sirtomas profile image
Sirtomas

I also have MS and swollen legs, PMR and GCA. Due to adverse blood tests my GP took me off diuretics and advised i rest with my legs higher. It seemed no make any difference. Then I started oxybutynin as I was developing bladder problems. This has made a difference to my legs cos the swelling has almost gone. Coincidence or does this drug work in a way that the doctors are aware of? Whichever I will continue until it causes a problem then I'll speak to the GP again.

PMRpro profile image
PMRproAmbassador in reply toSirtomas

Is it maybe a bladder problem? Not able to store enough volume and everything just backs up and urine isn't being formed?

Charkha profile image
Charkha in reply toSirtomas

Another companion with MS as well as GCA and PMR! I hope the MS is not causing you too many problems. I have lived with MS for over half my life now. I was diagnosed well before the disease modifying drugs became available but, with the support of a wonderful husband who I lost 14 years ago, I have to say that the MS never stopped me from doing those things that were important to me ... so I am very thankful. This latest excursion into more auto immune disease is a challenge, as we all know too well, but we will keep going!!! I am so appreciative of all of you who help us along the way.

Whippetygirl profile image
Whippetygirl

I have a Revitive Medic that I use every evening for an hour, it takes away the swelling and the heaviness and also when sat down use the recliner for my legs. I also walk my dog twice a day which keeps things moving. I realise this may not be suitable for you but could you be able to use the Revitive Medic it really is a god send.

Charkha profile image
Charkha in reply toWhippetygirl

I will definitely check this out. Thank you!

JanetGarrettN profile image
JanetGarrettN

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MaritimeMags profile image
MaritimeMags

I get swollen ankles a lot, especially in the heat of the Summer. You have already received many responses to your post giving a lot of information about causes. Certainly putting your feet up helps.Just wanted to say that Boots Chemist in the U.K. sell very good support socks - they are like short elasticated stockings (knee length). They certainly help prevent swelling in my ankles. Washed out every night by hand, one pair lasts weeks and costs about £6. 🙂

Charkha profile image
Charkha in reply toMaritimeMags

Thanks for this suggestion. I just saw it. Actually I am in the US but the suggestion about the support stockings sold by the chemists is a good suggestion. A wonderful thing has happened. A friend is giving me an adjustable bed which will mean I can elevate my legs at night and I am sure that will also help. Also I am trying going up on the diuretics so we will see what happens!!

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