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.
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.
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.
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.
Yes, leg and ankle swelling! I was going to mention lymphoedema, too, because my mom, at age 84, has this so bad her calves are swollen to the point of no definition. Compression socks, elevation, nothing works, and because mine now are swelling for no reason, I began a search for more information.
There's hereditary lymphedema type I, which is caused from mutations in specific genes and clustered in families, but also, filarial lymphoedema, which is a parasite infection common to several popular tropical vacation spots and transmitted by mosquitoes. And of course, it's been linked to MS. The parasites trigger a response from the immune system that produces acute episodes of local inflammation similar to MS. One study showed that filarial was found in the cerebrospinal fluid of 10 out of 10 patients with multiple sclerosis at autopsy.
Any thoughts on this? If we are genetically susceptible to one opportunistic virus, it stands to reason there could be other co-infections. Dependency oedema and lymphedema (genetically caused or by infection) have the same symptoms, but like many who mentioned leg swelling in the comments, it often is happening in MS despite being active.
I found a lab that will send out a Filaria BLOOD TEST kit since the blood draw needs to be in the evening, so I ordered one just to systematically rule things out. Can’t hurt, and if positive? There are readily available meds to treat it.
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.
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.
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.
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 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.
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.
Yes, leg and ankle swelling! I was going to mention lymphoedema, too, because my mom, at age 84, has this so bad her calves are swollen to the point of no definition. Compression socks, elevation, nothing works, and because mine now are swelling for no reason, I began a search for more information.
There's hereditary lymphedema type I, which is caused from mutations in specific genes and clustered in families, but also, filarial lymphoedema, which is a parasite infection common to several popular tropical vacation spots and transmitted by mosquitoes. And of course, it's been linked to MS. The parasites trigger a response from the immune system that produces acute episodes of local inflammation similar to MS. One study showed that filarial was found in the cerebrospinal fluid of 10 out of 10 patients with multiple sclerosis at autopsy.
Any thoughts on this? If we are genetically susceptible to one opportunistic virus, it stands to reason there could be other co-infections. Dependency oedema and lymphedema (genetically caused or by infection) have the same symptoms, but like many who mentioned leg swelling in the comments, it often is happening in MS despite being active.
I found a lab that will send out a Filaria BLOOD TEST kit since the blood draw needs to be in the evening, so I ordered one just to systematically rule things out. Can’t hurt, and if positive? There are readily available meds to treat it.