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HOSPICE, genetics clinic, leaking legs, EMG, nerve conductions, phantom liquid feeling, chronic fatigue, chills, malaise, ankle pain, swollen feet, transient lymphedema, full body lymphedema, tissue hardness, dystonia, painful boil

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NEW MEMBER

Postby dids » Mon Jul 03, 2006 6:15 pm

:oops: hello everyone...............only found this site today when i was at a low ebb because i have had cellulits in my lymphodema legs for nearly 4 weeks now.and it aint shifting.............i got lymphodema 2 years ago following major surgery ..........i am only little 5 foot nothing and everyone stares and whisphers .....................i am on a fourth lot of antibiotics and if it doesnt shift the cellulitis this time i dont know whats in store..............i got it last year but it cleared up in 2 weeks....well there i feel better for what winge and moan...............i am a married lady aged 55 a diabetic as well which doesnt help the healing process....................loverly to have found you all....................take car god bless[/b]
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New Member

Postby patoco » Mon Jul 03, 2006 9:05 pm

Hi dids

Just wanted to give ya a warm welcome to our family. :D Very much look forward to getting to know you. Please don't hesitate to ask any question, post concerns...or even just vent. We are family and we are all here for each other.

I have had a terrible time with cellulitis and have been on IV antibiotics more times then I can count. Sometimes, it just is the only antibiotic therapy that seems to knock the celulitis back down.

OK now...gotta say this too :D ......one of my sisters is 5 foot even....we tease her telling her she is actually just 4 foot 12 inches.....LOL....you should have seen her carrying triplets :P :!: :!:

Pat
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Postby silkie » Tue Jul 04, 2006 3:21 am

Hiya Dids

Big welcome. so glad you found us
So sorry you having a tough time cellulitis is a pain in the ----

im 55 little taller than you not much tho
and when everyone states and whispers at me well why not im

worth staring at give them a cheeky smile and wink
and if you have a long skirt on lift the hem and flash those legs

the go so red and usually turn away

Welcome to the family hun

hugggggggggggg

Silks xxxxxxxxxx
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Postby dids » Tue Jul 04, 2006 7:29 am

oh I feel better knowing there are people who feel like I do............thanks for your nice response.............by the way i am in Yorkshire England I only live in a small town so I think I am a bit of a novelty?(Freak to some)...............does anyone find that if they go out in the sun their legs become itchy and lumpy as if allergic to the sun. I may become a pain because I have so many questions that doctors dont seem to have the answers to sowwy :cry:
Dale x
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Postby patoco » Tue Jul 04, 2006 8:28 am

Hi ya Dale :D

Not a pain....please ask all the questions you want to - we are all only to heppy to jump in and help in any way we can :!: :wink:

What happens when you leg is exposed to direct sunlight, is that the lymph system struggle desperately to cope with the heat and to try and function.

The heat simply overhwelms it. On those rare days when I have been to the beach, I always make sure that while I am sitting, I don't have them exposed ( and I am one of those sun-lovers too).

Pat 8)
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Postby silkie » Tue Jul 04, 2006 9:10 am

Hiya Dale

Lancashire lass here just the other side of our beautiful hills

our town is small. and yes they do look but as everyone seems to know

what time you cleen your teeth every day (in the friendliest way)

then they dpn't bother anymore .

The nearest town to us ppl look but as i said the wink soon stops that

As Pat says keep posting your questions such great help and support here

and great friends


hugggggggggggggggg
Silks xxxxxxxxxxxxxxxx
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Postby dids » Tue Jul 04, 2006 3:32 pm

hi silkie..although living in yorkshire I originate from Lancashire Fleetwood....so loverly to meet you.............it is wonderful to meet such loverly people as i said to my hubby its nice to have people i can talk to, as most people think" I just retain a bit of water" !!!!! IF ONLY
thanks for your kind message
Dale xxx
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Postby silkie » Tue Jul 04, 2006 7:02 pm

Ah Fleetwood
lovely memories :D

I' am not far from holmfirth, near greenfield


It is wonderful to talk to people that know what you are on about

tell your hubby Hi from Lancashire


Leeds has lymph clinic i have been told i will check it out for you


huggggggggggggggg

Silks xxxxxxxx
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Re: NEW MEMBER

Postby NetterBug » Wed Jul 12, 2006 12:33 pm

Hi,

I'm late, and new but wanted to welcome you. Welcome to the family!

Netter Bug

dids wrote::oops: hello everyone...............only found this site today when i was at a low ebb because i have had cellulits in my lymphodema legs for nearly 4 weeks now.and it aint shifting.............i got lymphodema 2 years ago following major surgery ..........i am only little 5 foot nothing and everyone stares and whisphers .....................i am on a fourth lot of antibiotics and if it doesnt shift the cellulitis this time i dont know whats in store..............i got it last year but it cleared up in 2 weeks....well there i feel better for what winge and moan...............i am a married lady aged 55 a diabetic as well which doesnt help the healing process....................loverly to have found you all....................take car god bless[/b]
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Postby NetterBug » Wed Jul 12, 2006 12:37 pm

Ha ha ha!!!
That's a good one, I think I'll use it from now on.

Some guy called me fat ass while waiting in line at the movie theater ... I don't like to stand right on someone, nor do I like people to stand right on me in line. There was room for one person in front of me, and my friend was standing behind me with a space between her and I. This guy says "hey fat ass you already take up enough room why don't you move closer to the guy in front of you' ... I turned, looked at him and simply said "you are pathetic" - that guy came at me like lightening to an electric pole. Thankfully there were people who stopped him.

I like the winking idea ...

Netter Bug

silkie wrote:Hiya Dids

and when everyone states and whispers at me well why not im

worth staring at give them a cheeky smile and wink
and if you have a long skirt on lift the hem and flash those legs

the go so red and usually turn away

Welcome to the family hun

hugggggggggggg

Silks xxxxxxxxxx
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Joined: Sun Jul 09, 2006 5:44 pm
Location: Earth

Postby dids » Thu Jul 13, 2006 1:49 pm

well loverly to receive such a welcome.......................however you lot all seem to be receiving treatment for your LE...........I do attend the LE clinic in Scarborough but all they give me is massage to do.........wonder if its because I am in United Kingdom...............you will be pleased to hear my cellulitis has cleared up (till next time).....................I wanted to tell you that my doctor has put me on some great tablets Orlistat.........and along with my healthy diet I am osing a lot of weight and my legs are looking somewhat better..do you have these tablets over there?
Dale x
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Postby silkie » Thu Jul 13, 2006 4:49 pm

Hi Dale

The best treatment at this present time and it does work

is MLD Manual lymph drainage.


i do skin care moisturise, nails short and straight across on toes
use clippers remember any cust or perferation of the skin risks infection

i manually massage my lymph in neck shoulder and underarm then each leg

then wrap with bandages. During the day i wear those nora battys lol


and that is basically the daily treatment for lymph for all of us

and there is nothing that works better

Hopefully the research being done now will lead to something in the future

Hugggggggggg

Silks xxxx
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Postby marigold » Fri Jul 14, 2006 3:26 am

Dale--
How cute that you and Silkie are practially neighbors! :D She is usually our only representative from the UK, I think, so you can add your two cents now, or rather, tuppence!

A therapist at a clinic in the U.S. will usually do MLD massage and teach you to do it yourself; then decide what you need on your limbs. In my case, I had to do wrapping (with the annoying long bandages) for a few months (doing it myself except when I went for treatment and he did it), until he ordered some thigh-high stockings for me. Later he ordered compression tights for me, thick itchy ones. I hates 'em, but I wears 'em.

I did not have a weight problem, but I have put on weight aside from the edema in the past several years, so I would like to get rid of the excess fat...then I'd know that whatever was left that shouldn't be there was lymph!!
:wink:
I don't know what that medication is that you are taking. What exactly is it for?

I started getting the bacterial infections a few years ago,and they got worse and worse, though I would always recover in about 24 hours. In the fall of '04, each attack would make my leg larger! Fortunately, I soon was able to obtain treatment...just in the nick of time! I still come down with attacks,but honestly, sometimes it could just as well be food poisoning, as the symptoms are similar: aches, chills, slight nausea.

Cheerio !
:lol:

Marigold
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Postby silkie » Fri Jul 14, 2006 5:52 am

hI Marigold

From reading these last few years there seems a few differences

NHS (national health service) therapist have to train for 2years on top of

the physio training to become a lymph therapist.

My experience is for lower limb that the full body is massaged so you give
the fluid all the assistance up to the neck

massage and wrapping are every day wrapping in the evening and supports in the day

Wrapping is the reducer of fluid stockings the supporter of legs

we do get all our supplies on script our treatment is not free as everyone imagines when working everyone pays a percentage of their salary (before they get it in tax and national insurance but it all goes into one huge pot and when you retire after all those years of paying in the fund you get free health care.

Where we differ is primary lymph it is not recognised like secondary
and it is so difficult to find clinics that will take us for treatment

there are a third of the clinics for primary as for secondary and twice as many patients (the last figures i had)with primary and Goodness knows how many that are going undiagnosed because of lack of doctors recognising lymph
I have never seen a specialist no tests i live within the third biggest city
bounderies in the uk and there is no specialist that sees primary lymph

we with lymph all have difficulities we should not have to deal with
all different but all to us hard to cope with

I have lipedema to and that is even harder to get any help for at all

funding for research is not forth coming and doctors even less informed for lip as for lymph

But I am still smiling and flashing me ankles at the uneducated

I have my therapist and My friends on here most i can do for myself
thanks to Denise and Pat who has taught me so much

I think i am blessed

no i know i am


Hugs keep smiling and flashing those ankles

Silks xxxx
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