Edema Legs : Hello, I have PA and I... - Pernicious Anaemi...

Pernicious Anaemia Society

31,973 members23,121 posts

Edema Legs

Dottyspotspot profile image
19 Replies

Hello,

I have PA and I get edema in my legs from time to time. Always thought it was stress related but it’s been happening a lot lately, 3-4 times a week and I have a torn ligament in my knee so it’s playing havoc with my recovery, putting extra stress on the joint etc. Does anyone know if it’s related to PA? And if so whether I can stop it in some way? It’s really grinding me down.

Written by
Dottyspotspot profile image
Dottyspotspot
To view profiles and participate in discussions please or .
19 Replies
Nackapan profile image
Nackapan

I've not heard of a connection? If you are able get it checked out with your Gp. A good idea

Meanwhile elevate your legs as much as you can moving your feet and legs for circulation.

Diesnt help the sudden raises in temperature

Dottyspotspot profile image
Dottyspotspot in reply to Nackapan

Hello, thanks for your reply. This has been happening for about 5 years and my GP doesn’t know why but recently it became almost every day.

Since I posted I found a couple of medical journal articles on it. Apparently it is a symptom. Going to up my b12 frequency from injecting every 2 weeks to once a week and see if it helps.

1st page of one report below in case it helps someone else

Médical report
Nackapan profile image
Nackapan in reply to Dottyspotspot

Thats interesting Hope upping your b12 frequency helps.

helvella profile image
helvella

Is it pitting or non-pitting edema?

That is, if you press a finger in, does it form an impression that slowly returns, or does it resist the impression and not form a pit at all?

Non-pitting edema is very often a symptom of hypothyroidism.

Dottyspotspot profile image
Dottyspotspot in reply to helvella

Hello, it’s non pitting but I’ve had my thyroid tested and I’m unweight so I don’t think it’s hypothyroidism. I do have lupus though so could be a complication of that but the GP just doesn’t know. They’re not very sympathetic.

helvella profile image
helvella in reply to Dottyspotspot

Over the years I have seen people with significant hypothyroidism dismissed because they perhaps only tested TSH, or Free T4 was in range, or whatever. Weight is absolutely no guide to hypothyroidism - some lose weight, some gain weight, some have little change.

I suggest posting your thyroid test results over on the Thyroid UK forum here on HealthUnlocked.

There are only a few things which cause non-pitting edema.

JGBH profile image
JGBH in reply to helvella

Could pitting oedema be a sign of heart problems? Especially if one has autoimmune problems...

Dottyspotspot profile image
Dottyspotspot

Thanks Helvella and JGBH

My dad is on thyroid medication so worth pursuing.

I had thought heart troubles as it runs in the family and went to the GP when the blackouts started but was dismissed after a quick check of my blood pressure and a loan rant about her holiday in Barbados being ruined because of lockdown. Ho hum.

JGBH profile image
JGBH in reply to Dottyspotspot

Well in that case it might be a good idea to request your useless GP (and there are too many of them) to refer you for a stress echocardiogram, I had one over 2 years ago and it showed my heart had reached its optimal size... GP didn’t pursue this of course although my ankles and legs are swollen.... useless! I have other symptoms so have requested another echocardiogram, will have this in 2 weeks’ time. It’s disheartening one has to do the doctor’s work... they don’t care. I am hypothyroid and have RA and other autoimmune diseases plus osteoporosis. So make sure your GP refers you soon. I told mine I didn’t want to wait until I had a stroke or heart attack! One has to state the obvious it seems!

Hope you can get help. Take care.

Dottyspotspot profile image
Dottyspotspot in reply to JGBH

Thank you, that’s really helpful I didn’t know what to ask for I just knew my heart could be the problem. My uncle died of a heart attack in his early 30s so I have been worried it might be heart issues. My GP is a bit jolly hockey sticks and always tells me to toughen up. It’s not like I go there for fun! I will try to ask directly for this scan and hope I get heard. Thank you!

JGBH profile image
JGBH in reply to Dottyspotspot

You’re most welcome. Don’t worry but it’s important that you get respect and support from a too well paid GP.... who isn’t great at his job. If he tells you to toughen up (that’s really shocking... he should be reported for such a flippant behaviour) tell him he should be in your shoes before making such a flippant remark. Don’t be intimidated by such a useless doctor and politely but firmly put him back in his place. Prepare in advance, Write down the problems you experience, your genuine concerns, and remind him of your family’s heart problems. Don’t let him fob you off anymore. Take control back. You deserve to be treated with respect and care from a so-called doctor. Too many of them are useless.

Good luck and let us know how you got on, make sure you obtain the help you need.

Jaiday profile image
Jaiday

Leg Odema was one of the first things that I noticed. It then started in my hands, to the point that I could physically feel them swelling when I was in meetings! I contacted the GP March 2020 about it and was told to wear flights socks! My health has just declined from there. It’s a relief to know that others experience similar symptoms. I was told my thyroid test was ok, but interestingly, now I have access to my records I can see that my red blood cells have been abnormal every single time I’ve had bloods done in the last 5-6 years. The test I had last week is the first normal one, yet the GP has been telling me they were normal all along

mickeymouse42 profile image
mickeymouse42

Where is the swelling - in the feet and ankles as per the article you posted? How large is the swelling? Is it painful?

Dottyspotspot profile image
Dottyspotspot

Jaiday - did b12 injections stop your swelling ?

Jmc42 - it’s my feet and all the way up my legs. It’s ok in the morning and gets gradually worse during the day until I can’t see my ankle bones anymore and they’re usually prominent both sides. It’s not painful - only on my dodgy knee ligament at the moment because it’s strapped up but don’t feel it otherwise. Oh and I get shiney skin which is what made me think it might be heart trouble.

in reply to Dottyspotspot

Mum had oedema, I swear it was caused by b12. As for shiney skin, its wise to keep moisturising the skin and keep them supple as if they get dry they may crack.Try elevating the legs. I had to put blow up compression socks on her legs twice a day

I'm not sure what you call them, they were inflatable leggings plugged into the electric, they would expand squeezing the legs then deflate, then expand and deflate.

When touching the swollen part of your legs are they firm to touch? Mums was firm and swollen. If they are quite squishy then it might be water retention.

Dottyspotspot profile image
Dottyspotspot in reply to

Oh that’s something I hadn’t thought of! Thank you, I tend to have dry skin anyway (eczema) so that’s really helpful !! They’re really firm. Like they’re stretching to burst rather than just filling with liquid. It’s pretty horrible. I injected first thing so hopefully it’s b12 and will stop shortly if I make my injections more regular. I have been stressed (house move/divorce) so could be using up my b12 more quickly than usual. x

in reply to Dottyspotspot

As they are firm (like my mums were) it sounds as though it is oedema. These leggings massage your legs.

B12life profile image
B12life

Yes anemia can cause edema. pubmed.ncbi.nlm.nih.gov/821...

Dottyspotspot profile image
Dottyspotspot in reply to B12life

Thank you ! I also have low iron so maybe that makes me more prone to it. Really helpful article. Thank you.

You may also like...

leg pains and weird body thermostat

and inner thighs? I have burning sensations in my legs worse after exercise but persist at rest. My...

Lower leg burning sensation

tired when jab is due. Lately I get a burning sensation in my left lower leg .. it’s not painful...

B12 helping Restless Legs

and It has been fantastic in masking my restless legs (and arms) since I developed Augmentation. I...

b12 is low and leg pain

hello I was diagnosed with low b12 about 3 weeks ago. I was asymptomatic for a long time and on...

Leg Cramping, Ankle Neuropathy...Help!

Hello all! When I last posted 2 months ago, I had questions regarding the possibility that my daily...