Can Lymphoedem travel to the trunk of your Body, if so how does it present itself.

[ninewells]

If so the reason i am asking is, i have L/d in both arms and both legs, now i have a thickening under my skin from my Sternum bone to the top of my belly button, i was wondering if this was the start of whats maybe to come? Any answers would be helpful.

[Chetanna00]

Hi there, my therapist told me about a lady that this happened to but the lymph fluid travelled FROM her legs to her torso and stayed there due to her using the compression pump and nothing else.

Are you getting MLD ? if so how often ?

You don't mention if you wear compression garments - perhaps these are not the right fit for you and are giving you too much compression

Do you wear loose fitting outfits or tight belts ? - all these things can contribute to it.

[ninewells in reply to Chetanna00]

Hi Chetanna,

No i have never had MLD, I am currently having all my thickened tissue removed and Liposuction on my lower limbs to give them a chance of reducing. Over the last 2 years it has been very successful for me.

I do get measured regular for mystockings, I now have to wear my Compression garments at all times since having my surgery.

My limbs are keeping low in fluid now since the Lipo.

I don't wear tight belts but i do have a small waist, but the bottom area has definately increased in size over the last few years so my next Lipo op will be to remove as much fat from the bottom and more on the thighs again as some of my skin is refusing to shrink back, but with me also having Lipodystrophie, we think this may be a factor in why its not returning, its been proven that this may happen as we lose elasticity in the skin.

I have now spoken with a Trained MLD consultant, when i next see my Lymph team i will get them to check my tummy area, if they feel its fluid i will pop along and have some drainage done with her, she has said she will teach me how to do this for myself.

thanks for the feedback.

Ninewells.x

[Chetanna00 in reply to ninewells]

You're welcome. Wow, it sounds like your body has been through a lot in the past few years. I really hope everything works out well for you and they can help you manage the fluid buildup.

Take care x

[ninewells in reply to Chetanna00]

Thanks,

i can honestly say it's been battered and bruised in many different ways, both inside and out.

I have taken the decision to withdrawl from the Amitriptoline, I have been cutting its grams down daily for the last week, I have an appointment for Thursday with the GP, if he ups the Morphine i am on, i think that will be just as good, the only problem is it doesn't stop the body spasms that i get from the Fibro, that the amitriptoline does stop. But the last thing i need is unwanted fluid through no fault of my own, so the quicker i can stop this the faster i will get ity down again.

I know he will go mad at me for droipping it down before i go see him, but when you can't get an appointment for 2 weeks at our clinic, what does he think i will do. Not wait thats for sure.

That gives me 2 weeks clear before i see my team and hopefully i may have shifted the unwanted fluid in the legs and arms by then id not hopefully most of it.

The Consultant knows i am on this and he did see a slight increase in my tummy but i had just had surgery on that on my last visit so he accepted this as i contributor.

But hey i will keep you posted.

Thanks for the kind words.

Ninewells x

[norberte]

hiya ninewells

as i was saying on the moisturiser thread (thanks for your help on that) if you press down on the skin for a few seconds & it only comes back up very slowly that's a possible clue it's lymphoedema

what happens when you wear waistbands? do you get a red line that sticks around for ages & ages? that'd be another clue

but the best thing'd be to get back to your lymphoedema team & ask them to prod it around & see what they think

my breast surgeon originally tried to tell me my full 'dog tags' were fat - i wish the fat i've got everywhere else responded so well to mld! i didn't see him again - if i want idiots in my life, i'm perfectly capable of finding them myself

& corsetland's not that bad, honest! i'm only wearing mine non-stop at the moment cos i've just had surgery, but usually it's from getting up to going to bed, same as sleeves & stockings

see what the lymphoedema team say, hope all goes well

[ninewells in reply to norberte]

Hi Norberte,

nice to hear from you again, Anytime on the thread.

I did the fluid test and my skin just springs back but i feel it very thick under the skin so wondering if its Lipoedema/Lipodystrophie now building in my rib to belly area. Feels a bit like the tops of my thighs did before surgery. Lumpy and thick.

i have the smallest of waists so never wear tight belts, but have a bowel problem and having treatment for this, so lots of blaoting happening so i have started to wear tighter undies to hold my tummy in, wondering if this may have been a RED flag to a bull situation.

Also take Amatriptoline for my Fibromyalgia, side effects are weight gain and fluid retention. Been on this since October. Had a bad hospital admission ended up on Life support due to a bad asthma attack. then been on Steroids for this.

Thinking now if i add all of this together we may have an answer to why this may be happening. But will see my team in two weeks, hopefully they will put my mind at rest, if it is then as i said to Chetanna i will get myself to a MLD session

My Compression full length stockings are on 24/7, they get remeasured at regular visits so i know they are all fitting well, not been off since las op. apart from bathing and the Intensive care unit.

Thakls again for your help.

Ninewells.

[ninewells in reply to norberte]

Hi, as promised,

Dermol 500 is what the Hospital supplies me with after each op and its fab, it does take a little longer to soak in, but i feel its worth using as it leaves me with much softer skin. If i run out i use Diprobase. I also use it on my feet and put a sock on after i apply it but a small sport one, not the ankle or leg sock as in general daily wear. it stops the hard skin building up on my heels. I accidently cut some hard skin away using a foot pearer and oh boy did i pay the price, I wont ever make that mistake again.

Hope this helps.

ninewells

[norberte in reply to ninewells]

thanks ninewells - replied on the moisturiser thread just in case anyone else is interested

[norberte in reply to norberte]

ps your poor foot!!

[lovesradio]

Ninewells good luck with getting an answer xx

[ninewells]

Thanks Lovesradio,

will keep all posted on what the findings are.

Ninewells. x

[norberte]

blimey ninewells, you've not exactly had it easy, have you?

i find one of the most annoying things about the ld is that what it wants is often the opposite of what one of my other ailments want & it's a constant juggling act

my scheuermann's (posh for knac*ered back) hates the heat of the lovely post-surgery corsets but for now keeping the lymph happy takes priority - i'm so pleased with how flat the surgeon's managed to get it all, i'm not letting the lymph stretch the skin again

& my back just has to shut up & have ice packs!

you end up having to teach all the other teams about ld, & the ld team about all the other things, & people still don't get it!

with everything you've got going on torso-wise already, i'd be even more inclined to wait for your appt before you decide anything, but ld definitely wouldn't like spanx!

good luck at your appt, let us know how you get on

[ninewells]

Hi Norbete,

Will do, you are so spot on when it comes to having to teach others how your L/D effects you and what has to take priority at the time.

When i was sedated in ICU my body decided to have a spasm attack from the fibro, the nurses thought i was fitting and wanted to give me medication to stop the fit. I was so glad my Husband came in and told them what to do. They got the physio team down who wrapped me in hot blankets and put heat pads under my body until the spasms passed. I don't blame them it does look like someone having a fit when it hits me. But just another team of people who haven't come accross one of my conditions, but they also had not handled an L/D patient and we had to warn them when i was being put under that they couldn't use blood pressure cuffs on my upper arms or legs nor put unnecessary needles into me, just trying to stop unwanted infection. I am so going to purchase the bracelet so i can wear it when in hospital.

I really do know what you mean by this, you are so on my wave length when it comes to other illnesses. speaking of back problems, thats for another day hehe will share with you another time.

Will keepo you up to date once i see the team.

Cheers

Ninewells.

[StellaM]

NInewells.. I had no idea that amitryptilene contributes to fluid retention,so thank you for that info. So much useful stuff on here to find out!

I am on 20 mcg or maybe Mg i can never remember..i have ME which is v similar to fibromyalgia... My GP prescribed Amitryptilene many years ago as i was having such horrific nightmares when I was first ill with ME. It helps tho i still have ' bad dreams' a lot,and very busy dreams ...I started on a much higher dose and have slowly come down over the years.. I think it helps a little with my aches n pains too. Had no idea tho about the fluid retention/ ami link. My ankles and knees are quite swollen,despite recently losing the six stone i put on over many years of being ill. After looking at pictures,I think i have lipoedema rather than Lymphoedema but am waiting for my first clinic visit.

Best wishes for your future treatment,hope you see lots improvements with yr health problems.