This patient illustrates a problem that people with multiple sclerosis (pwMS) who have reduced mobility commonly experience. It is called dependency oedema and it can be self-managed...
My MS mainly affects my right side . I am mobile but still notice some foot swelling on that side if I stand for too long.
Definitely an issue if I sit for too long. And I even get some blue discoloration. I’ve incorporated calf raises into my routine, but the right raises are not as strong due to Ms weaknesses.
I have swollen feet, ankles & calves and it has been described as lymphoedema. Try to keep legs elevated and do wear compression stockings periodically although they over-dry my skin. I'm prescribed furosemide as a diuretic to reduce leg swelling and also to lower BP (I have losartan and nifedipine also). I don't like taking the furosemide because my wee urgency is bad enough already but taking the tablet makes it awful for about 3 hours after taking. From your article, the furosemide could be having the opposite effect... Need another BP med to replace the furosemide then.
Thank you Gavin. I'll take this to my urologist as I was previously on indapamide which is a loop diuretic, though the switch to furosemide (a thiazide) also preceded my MS diagnosis in '21.
Furosemide is a loop diuretics, that acts by inhibiting the luminal Na-K-Cl cotransporter in the thick ascending limb of the loop of Henley It binds to the Na-K-2Cl transporter, thus causing more sodium, chloride, and potassium to be excreted in the urine. It is not a thiazide diuretic. In comparison thiazide diuretics act on the sodium/chloride cotransporter located in the distal convoluted tubule of a nephron.
A similar thing can happen at the other end of the activity scale. I'm currently running 60km a week as I train for London Marathon, and all of my shoes are feeling tighter than they did.
I have had this for at least 5 years. I haven't done much about it because apart from not looking nice it doesn't affect me. I did order compression socks but even though I'm only size 6 they were too tight to get on. I will now make a GP appointment to see if they can help me get the right size. I really appreciate your newsletter because if I hadn't heard what you said about the risks associated with this swelling I would have carried on ignoring it. So thank you.
I’m fortunate I haven’t developed this, but I try to stay on my feet as much as possible and elevate my legs when I’m done in. I’ve considered one of those calf compression devices if I have had to stay days off my feet. I had enormous edema in pregnancy and it was terribly painful. I am sorry that the lymphedema therapy is no longer effective for this patient. I experienced lymphedema once, and that was a year post mastectomy (which is unusual) and the belief in those days was that it was irreversible. Not so. The experienced lymphedema physiotherapist was worth her weight in gold. All edema is terribly painful. (In that particular case I joked to my youngest child that I had “Pillsbury Doughboy Syndrome” because it looked so frightening!) Does Desmopressin necessarily cause edema? I am considering it my last hope medication for my unruly bladder, and edema - so far so good. Thanks for this, Prof G. Another wealth of info.
~30% pwMS who start DDAVP get mild foot swelling. It works by reducing fluid output and reverses rapidly. In my experience it is not a problem provided you stick to the rule of using it only once per day.
Hi Bluebird, thanks for the tip! Kegels are a necessity. I was doing so well with estrogen/bitter cranberry and kegeling away during the day! I went back to archives, and I noted Prof G warned that Botox would necessarily require cathing. Because I have hesitation and retention, Botox was definitely not the treatment for me. That I was doing well with the above plan other than fractured sleeping was actually in the urologist’s notes! Grr!
I have dependency empodema per your lastest mailing. I wear compression stockings issued by the lymphoedema clinic -NHS. I try to manage symptoms by raising my legs when possible but with no real effect. What electrical stimulation device are appropriate for me to try?
I can walk 10 metres on a good day with a frame by my MS is on my left side so my left leg drags and I can’t lift it. I would welcome your thoughts. Michael
I've surprised myself by becoming a bit of a fan of compression stockings - well one anyway - which helped heal a wound on an ankle bone. Non invasive and effective. Helped by nurse demonstrating how to put it on most effectively.
By measuring per instructions on the hosiery - length of lower leg and foot, and circumference of calf. first used Class 1 then Class 2 compression. Ask more if needed :-)
I use my TENS unit on specific pressure points to help with all types of edema. I also have high blood pressure and mild congestive heart failure and this method helps a lot. It stimulates the pressure points you would use to relive edema and is non invasive and works well and quickly.
One of my elderly neighbours has this problem. A health visitor delivered some long compression socks for her. But she can't put them on. Her wrist is injured and she has been on an NHS waiting list for over 4 years for an operation, so hand function limited. She is in her eighties and lives alone. The NHS employee went off again, case closed. Complete waste of time.
Thank you Dr G. Really appreciate understanding better why MS has delivered these excruciating chronic purple pains. Like so many, I dream of the exercise I was able to do until late stage EDSS 6.5... Greater insight is a comfort. THX.
My MS mainly affects my right side . I am mobile but still notice some foot swelling on that side if I stand for too long.
Definitely an issue if I sit for too long. And I even get some blue discoloration. I’ve incorporated calf raises into my routine, but the right raises are not as strong due to Ms weaknesses.
Thanks for another informative MS selfie!
Very informative! Thank you
I have swollen feet, ankles & calves and it has been described as lymphoedema. Try to keep legs elevated and do wear compression stockings periodically although they over-dry my skin. I'm prescribed furosemide as a diuretic to reduce leg swelling and also to lower BP (I have losartan and nifedipine also). I don't like taking the furosemide because my wee urgency is bad enough already but taking the tablet makes it awful for about 3 hours after taking. From your article, the furosemide could be having the opposite effect... Need another BP med to replace the furosemide then.
Re: "Need another BP med to replace the furosemide then."
It depends on what furosemide is prescribed for. It is not commonly used as an anti-hypertensive. Thiazide diuretics or more commonly prescribed.
Thank you Gavin. I'll take this to my urologist as I was previously on indapamide which is a loop diuretic, though the switch to furosemide (a thiazide) also preceded my MS diagnosis in '21.
Furosemide is a loop diuretics, that acts by inhibiting the luminal Na-K-Cl cotransporter in the thick ascending limb of the loop of Henley It binds to the Na-K-2Cl transporter, thus causing more sodium, chloride, and potassium to be excreted in the urine. It is not a thiazide diuretic. In comparison thiazide diuretics act on the sodium/chloride cotransporter located in the distal convoluted tubule of a nephron.
A similar thing can happen at the other end of the activity scale. I'm currently running 60km a week as I train for London Marathon, and all of my shoes are feeling tighter than they did.
You go!!!! Yippee! I shall live vicariously! ;)
That's the best way, then you don't have to deal with the blisters...
I have had this for at least 5 years. I haven't done much about it because apart from not looking nice it doesn't affect me. I did order compression socks but even though I'm only size 6 they were too tight to get on. I will now make a GP appointment to see if they can help me get the right size. I really appreciate your newsletter because if I hadn't heard what you said about the risks associated with this swelling I would have carried on ignoring it. So thank you.
post hip dislocation - reduced mobility meant i had foot ankle swelling on both sides - acupuncture helped
I’m fortunate I haven’t developed this, but I try to stay on my feet as much as possible and elevate my legs when I’m done in. I’ve considered one of those calf compression devices if I have had to stay days off my feet. I had enormous edema in pregnancy and it was terribly painful. I am sorry that the lymphedema therapy is no longer effective for this patient. I experienced lymphedema once, and that was a year post mastectomy (which is unusual) and the belief in those days was that it was irreversible. Not so. The experienced lymphedema physiotherapist was worth her weight in gold. All edema is terribly painful. (In that particular case I joked to my youngest child that I had “Pillsbury Doughboy Syndrome” because it looked so frightening!) Does Desmopressin necessarily cause edema? I am considering it my last hope medication for my unruly bladder, and edema - so far so good. Thanks for this, Prof G. Another wealth of info.
~30% pwMS who start DDAVP get mild foot swelling. It works by reducing fluid output and reverses rapidly. In my experience it is not a problem provided you stick to the rule of using it only once per day.
That would be wonderful. :)
Might be worth trying Squeezy app for unruly bladder? https://squeezyapp.com/
Hi Bluebird, thanks for the tip! Kegels are a necessity. I was doing so well with estrogen/bitter cranberry and kegeling away during the day! I went back to archives, and I noted Prof G warned that Botox would necessarily require cathing. Because I have hesitation and retention, Botox was definitely not the treatment for me. That I was doing well with the above plan other than fractured sleeping was actually in the urologist’s notes! Grr!
I have dependency empodema per your lastest mailing. I wear compression stockings issued by the lymphoedema clinic -NHS. I try to manage symptoms by raising my legs when possible but with no real effect. What electrical stimulation device are appropriate for me to try?
I can walk 10 metres on a good day with a frame by my MS is on my left side so my left leg drags and I can’t lift it. I would welcome your thoughts. Michael
https://reviewmobility.co.uk/best-blood-circulation-machine/
I have dependency empodema per your latest email
I've surprised myself by becoming a bit of a fan of compression stockings - well one anyway - which helped heal a wound on an ankle bone. Non invasive and effective. Helped by nurse demonstrating how to put it on most effectively.
How did she size it, i.e. the stocking?
By measuring per instructions on the hosiery - length of lower leg and foot, and circumference of calf. first used Class 1 then Class 2 compression. Ask more if needed :-)
Thanks. The reason I asked is sometimes they measure the pressure once the stocking is fitted to make sure it is not too tight.
I use my TENS unit on specific pressure points to help with all types of edema. I also have high blood pressure and mild congestive heart failure and this method helps a lot. It stimulates the pressure points you would use to relive edema and is non invasive and works well and quickly.
One of my elderly neighbours has this problem. A health visitor delivered some long compression socks for her. But she can't put them on. Her wrist is injured and she has been on an NHS waiting list for over 4 years for an operation, so hand function limited. She is in her eighties and lives alone. The NHS employee went off again, case closed. Complete waste of time.
Thank you Dr G. Really appreciate understanding better why MS has delivered these excruciating chronic purple pains. Like so many, I dream of the exercise I was able to do until late stage EDSS 6.5... Greater insight is a comfort. THX.