Do people with primary usually have a low immune system??

[Mitzie]

My immune system was quite low before chemotherapy for follicular lymphoma but has not recovered and is now almost non existant 5months after treatments finished

[AnneBury]

I have primary lymphoedema (since childhood - as have one of my brothers and my sister but hers didn't show until her 20s). We are susceptible to cellulitus but that seems to be about it.

[Fatfeet]

I've too have had it since early childhood, apart from one attack of cellulitis so far (12 years ago) I haven't had any problems. I don't think that my immune sysem is any different from those without Lymphoedema. Anne - I was beginning to think I was the only one that didn't have any other problems with it. My only problem is difficulty finding nice shoes, and other people.

[AnneBury in reply to Fatfeet]

Hi Fatfeet - I hate buying shoes and also unhappy when my fat feet (&swollen legs from calves down) affect the clothes I want to wear. Tomorrow I am off to a wedding. My dress looks silly with knee length compression stockings and opaque tights will look too heavy - so I am going compression stocking free for the day! It won't be ideal by the end of the evening but what the hell. I used to be much more lax about wearing my stockings when I was younger but am much more disciplined as I have got older.

[Fatfeet in reply to AnneBury]

Hi Anne, you sound exactly the same as me. The last wedding I went to was a couple of years ago, (the anniversary was a couple of days ago). It was the first one I recall actually wearing my stockings at. I chose to wear trousers with a pretty top. My legs are not particularly bad compared to others, mainly in the ankle and slightly in the lower leg. Over the years I have hid my legs more and more, just to feel normal. I think as I have become older (46 now) I notice the stares more from strangers. Family and close friends don't seem to notice it. Its just me part of me. I mentioned it in passing with my godmother recently, she said - I'd forgotten you had that :-). I'm normally in jeans when she sees me. When I was younger I was more lax - recently been trying to remember when I did wear my stockings. I think I wore them most of the time, but if I went anywhere nice I didn't bother. Being the only one with it, it wasn't something I particularly focused on. That was pre-internet days Sorry for the long tale, your comment just got me thinking

[Andy13 in reply to Fatfeet]

Anne's brother here. Cellulitis and man-flu, not expecting sympathy from women for that, that's one of the symptoms of man-flu.

[jinger]

I have primary lymphoedema and I've been told that lymphoedema sufferers have compromised immune systems so are more susceptible to infections and not just cellulitis. I've had the condition for over 8 years now and touch wood, I've not had a bout of cellulitis (yet!). But I do seem to catch just about everything that does the rounds, coughs, colds, sore throats, bad stomachs etc. I was told last year that I qualify for a free flu jab at the doctors due to having lymphoedema (a week after I'd paid for one to be done at Asda!) so I'm booked in for one at the doctors next week. Apart from a few sniffles, I haven't been struck down with endless colds this past year which is a first for me as they have usually knocked me for six every time since my lymphoedema reared its ugly head.

[Zoe2481 in reply to jinger]

I was born with Lymphoedema and am now 26.

I am lucky enough that my parents stayed on top of it as a child and I have continued doing so as I got older and am so lucky that I haven’t had a bout of cellulitis.

Though like you, I catch everything that goes around. I’ve been sick twice this year and it’s only March! Was sick with the flu in January and got sick with gastro last night/today.

I’m due to get my flu jab soon!

[suzie_danger_girl]

Yes. Your lymph system removes all the germs and crap from your system, it all goes back up to your neck through your lymph circulation and ...... ah. It doesn't does it. There's your problem

You could easily have the primary lymph gene and be peachy fine for many years.You could get a flare up thats pretty much just in your legs and feel otherwise pretty fine. But make no mistake if your lymph system is knackered on a sytemic level thats a weakness and problem.

The problem I find is all the know / care about is swolen external limbs. So I now have lovely shapely legs but they completely ignore my immune issues and complications. My lymph nodes in my tummy get blocked and I cant eat. It restricts my lungs and I can't breathe. I get a swolen neck and head and get confusion and cant concentrate. These are all much more serious then my tendency to pudgy feet frankly.

We should get extra immune monitering and care like diabetics get for example. You can indeed be merrily well for many years but your lymph system is core to your immune system so you should be aware and take care. Be well folks xx

[suzie_danger_girl]

*Said with my yearly swollen lymohy neck which makes me loose my voice for 3 months every autumn

[Lynora in reply to suzie_danger_girl]

Hi Suzie - do you ever get MLD?

[norberte]

ha ha, andy 13

as you say, no sympathy from us lot for a bit of man-flu unless you're also looking after 3 screaming kids, planning the week's menus, trying to find missing school socks & gym gear, paying some bills online, working out what's for dinner, coaxing a bit more homework out of tired young things .....

in which case - andy, you poor thing!!

(you come across as up for a laugh - if i'm wrong, massive apologies & i'll delete this post)

yup, my immune systems pretty cr*p - mainly comes out as cellulitis which i'm very good at getting despite taking big doses of penicillin every day

i managed to fit 2 bouts in during august - takes some doing! & i ask people not to come round if they're full of germs, but that's easier said than done

but then you've got examples here of people who's lymph hardly disrupts every day life - it's about getting to know what yours wants then trying to fit that in with everything else you need to do

[Hidden]

I never expected to find a community devoted to lymphoedema. I'm 63 and have worn below knee compression stockings all of my adult life - the lymphoedema first showed itself when I was 16 and I had massive and pointless surgery to 'cure it'. Has anyone heard of 'The Thompson Flap'? It put me in hospital for 6 months and proved to be a waste of time.

It's a relief to find a discussion on its possible effects on the immune system as nobody has ever mentioned it before and I do get lots of days when I am off par and catch every cold going round.

[Emma1966]

I have wondered about this as I do seem to have weaknesses in my immune system since the lymphodema kicked in. Constant sinusitis and ear infections seem the norm and although I am not on ABs constantly I have several courses over the year.

Did prove handy for once though, as I am allergic to wasps and got stung in my foot - the lousy clearing of toxins proved, literally, a lifesaver as I failed to go into shock and was able to be taken to hospital without too much urgency. It did trigger my first case of cellulitis though

[rother]

My immune system is so low I get everything going and it takes weeks to clear.

My stress point is my throat, it just closes over and very quickly.

This year has been a nightmare

Just start to get over it and bang it's back.

Might try the flu jab next year

With it being primary you don't really know all your effected areas.