• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To register, simply click the Register button at the top right.

Anyone get swollen legs?

maryb

iherb code TAK122
Messages
3,602
Location
UK
I've been ill for a number of years but never had this symptom before. Retaining a lot of fluid in my lower legs and knees, its actually making them look distorted. I tried reducing my salt intake and fluids which worked quite successfully, but I was permanently thirsty. Have seen the doc and she is doing full blood tests including liver/kidney function, thyroid, diabetes, cholesterol etc. next week.
Just hoping its nothing wrong with my heart as I've had a lot of missed beat type symptoms recently too.
Without pre-emting the results, just wondering if anyone had treated this with herbs etc. Or any other useful info.
 

Sushi

Moderation Resource Albuquerque
Messages
19,934
Location
Albuquerque
I've been ill for a number of years but never had this symptom before. Retaining a lot of fluid in my lower legs and knees, its actually making them look distorted. I tried reducing my salt intake and fluids which worked quite successfully, but I was permanently thirsty. Have seen the doc and she is doing full blood tests including liver/kidney function, thyroid, diabetes, cholesterol etc. next week.
Just hoping its nothing wrong with my heart as I've had a lot of missed beat type symptoms recently too. Any thoughts?

I can't remember, do you have OI? If so, compression stockings or knee socks might help.

Best wishes,
Sushi
 

maryb

iherb code TAK122
Messages
3,602
Location
UK
No I don't Sushi, and can't bear anything restricting my circulation, maybe thats a clue?
 

Sushi

Moderation Resource Albuquerque
Messages
19,934
Location
Albuquerque
No I don't Sushi, and can't bear anything restricting my circulation, maybe thats a clue?

Hmmm,

If you do have fluid or blood pooling in the lower leg, they might feel sensitive.

I find that using just the graded compression knee socks helps fluid/blood return to the upper body. The "graded" compression is supposed to do this and they help a lot with aching legs. You didn't mention whether they ache or are just swollen? Hope you find some good answers.

Sushi
 

maryb

iherb code TAK122
Messages
3,602
Location
UK
Thanks Sushi - yes they are very sensitive, to any touch - my shins are really sore, I actually thought it was the bone but I think its is just down either side, I suppose like shin splints (but without the athlete!) also any bruises don't heal for weeks.
 

ukxmrv

Senior Member
Messages
4,413
Location
London
Mary, I'm not sure if this is useful but I find keeping my legs up as much as possible helps with the swollen, fluid filled look.

Also maybe something to consider is trying to fnd a beauty salon or treatment centre that has "space boots" to see if this helps. I was lucky enough to find one a long time ago. This go on the legs up to the hip and inflate from the bottom to the top. I ended up buying a pair.
 

maryb

iherb code TAK122
Messages
3,602
Location
UK
Thanks ukxmrv - I'll have a look at those. I presume you suffer from this too? Did you find the cause?
 

maryb

iherb code TAK122
Messages
3,602
Location
UK
Thanks Lala I've just had a blood test for Bartonella, so it'll be interesting to see the result. Are you haing treatment, has it improved?

ukxrmv - I've searched for these boots but getting nothing, only thing I can find is Vacuflex which is only a boot for the foot followed by acupuncture, is there a name on them or can you remember what the therapy was called?
 

Lala

Senior Member
Messages
331
Location
EU
Thanks Lala I've just had a blood test for Bartonella, so it'll be interesting to see the result. Are you haing treatment, has it improved?

ukxrmv - I've searched for these boots but getting nothing, only thing I can find is Vacuflex which is only a boot for the foot followed by acupuncture, is there a name on them or can you remember what the therapy was called?

Yes I am having treatment but this symptom has not improved. I have swolen legs above my ankles, but no pain or tenderness.
Btw: Tests for bartonella are mostly useless, what kind of test do you have?
 

maryb

iherb code TAK122
Messages
3,602
Location
UK
PCR just recently should get my results soon. I will post them.
 

Sherlock

Boswellia for lungs and MC stabllizing
Messages
1,287
Location
k8518704 USA
Mary, I knew somebody with foot and ankle edema. They tried raising the foot of the bed just 4". I never thought that would work, but surprisingly it did work very well.
 

Lala

Senior Member
Messages
331
Location
EU
Mary, I knew somebody with foot and ankle edema. They tried raising the foot of the bed just 4". I never thought that would work, but surprisingly it did work very well.

What does raising of the bed just 4 means?
 

Tito

Senior Member
Messages
300
4’’ means 4 inches or 10 centimeters
So you just raise the part of the bed where you lay your feet by 10 centimeters
 

maryb

iherb code TAK122
Messages
3,602
Location
UK
Thanks Sherlock, it doesn't seem to be my foot and ankle seems more the lower leg up to above my knee, I have just got a new mattress so I'll see if we can raise it up just at the end, but it would be nice to know what's causing it, you being a detective and all that :)
 

Sherlock

Boswellia for lungs and MC stabllizing
Messages
1,287
Location
k8518704 USA
Thanks Sherlock, it doesn't seem to be my foot and ankle seems more the lower leg up to above my knee, I have just got a new mattress so I'll see if we can raise it up just at the end, but it would be nice to know what's causing it, you being a detective and all that :)

made me laugh, Mary :) I'd try putting something under the bedposts, not under the mattress itself. Short pieces of 4x4 lumber work fine, maybe even magazines old phone books would work if they don't slide around.

I would guess that if it works for feet/ankle swelling, it might very well work for calf swelling.

As far as the cause, increased permeability of the veins seems the most likely - they just leak fluid. But as Tito mentioned, heart failure can also be a cause - that's related to why it used to be called congestive heart failure - but that's probably/hopefully less likely.

Have you tried magnesium for your skipped beats? Low magnesium is a well known cause of arrhythmias, and people with CFS are known to often have low magnesium.
 

Sushi

Moderation Resource Albuquerque
Messages
19,934
Location
Albuquerque
Vein valves can also be floppy in the same way as heart valves i.e. mitral valve prolapse.

Collagen disorders like Ehlers-Danlos type 3 can be involved. I think that is part of my story.

Sushi
 

maryb

iherb code TAK122
Messages
3,602
Location
UK
Sherlock re the bed, could be a problem as we have two mattresses on the one bed, don't know whether the OH will want his legs up:) Now that you mention it I have stopped taking the magnesium recently just got fed up with it - nothing seemed to be working but maybe a mistake as I've taken it religiously since first being ill.
Sushi - so it could be the vein valves, don't know whether my GP is up to diagnosing anything like that, who would?
 

Sushi

Moderation Resource Albuquerque
Messages
19,934
Location
Albuquerque
...
Sushi - so it could be the vein valves, don't know whether my GP is up to diagnosing anything like that, who would?

I'm not sure there would be a way to diagnose it easily. They use echos on the heart--I suppose they could on the legs too. But even if it were confirmed, I don't know what the treatment would be. Just like with mitral valve prolapse--not too much to do about it (unless it is really severe) but make sure you are hydrated. Some try to take supplements to improve collagen but I haven't tried this.

I mentioned it more as a less frightening possibility than some of the others. Do you know if you have any prolapsed heart valves?

Best,
Sushi