Re: Topper is back, info on Lymphedema, would like everyone to read (long)

[Guest guest]

I have been having problems with some swelling since I got so sick

from blood pressure meds, where did you learn the manual massage

tecniques, this I am very interested in...

thanks

Tazzie

> Hi gang,

>

> I apologize for not being around much lately... I've had a lot of

> problems with my computer, I still haven't found a replacement

> motherboard and I'm not handling my new health issue very well. I'll

> start catching up with emails today...

>

> I've found out that the issue with my legs is lymphedema, that this

is an

> issue that I'll be dealing with for life and that it's a result of

the

> RAI treatment that I got to kill my thyroid gland when I was in

thyroid

> storm. A procedure that may not have had to be had it not been for

the

> jack)*(* & * & ^% & ^% doc that ignored all my symptoms of thyroid storm,

said

> that there was nothing wrong with me (even though he noted my

symptoms in

> my chart) and told me to go home.

>

> I tried to sue his butt once before for this.. I may just be

checking

> into what I can do about him or the HMO that is responsible for

what was

> done to me due to his negligence and personal issues.

>

> Anyway... I've been doing a lot of research on lymphedema. Those of

us

> that have had RAI or surgery (of any kind) are at risk of damage to

the

> lymph nodes in our bodies. This is a BIG deal.

>

> From what I've learned it is VERY likely that those of us that have

had

> MASSIVE swings of weight gain loss in the tens and twenty pound

range

> over a week or two.... are quite likely not dealing with fat gain..

but

> more likely lymphatic system malfunction.. the inches and pounds

gained

> and loss are really lymph fluid that builds up in tissues.

>

> I'd mentioned that I'd had a lot of loose and hanging skin when I

started

> to lose weight... it turns out that that if very likely lymph fluid

that

> is still in those areas. The face rash that I'd mentioned that

someone

> though sounded much like a lupus symptom is actually a lymph

symptom. The

> pitting on my scalp is lymph fluid. The big bump on the top of my

head

> was lymph fluid.. the big roll of flesh at the back of my neck was

lymph

> fluid. Much of the looseness on my stomach is lymph fluid. The

pouchy

> bags of mushy flesh on the insides of my thighs is lymph fluid. The

bulge

> in my wrists is lymph fluid.

>

> .... I could go on and on and on.... including the 'fat' under my

chin...

> much of that was lymph fluid.

>

> How do I know all of this? I learned and studying and found out

where the

> lymph glands are, not just the ones along our jaws and under our

armpits,

> the ones that the docs check to see if we're sick.. but the dozens

of

> others that are involved with drainage of the lymphatic system.

>

> I learned how to do manual drainage massage. And by doing this

massage in

> just about a week I've managed to drain so much fluid out of my

body that

> I was starting to think I was going to pee myself away.

>

> Yep.. sounds funny... but it's nuts.... for the first several days

I was

> running to the bathroom in less than an hour after every massage

session,

> with a full bladder.

>

> I've lost the pitting edema on my scalp, I can slide my reading

glasses

> up on top of my head and not leave dents where they were resting.

> I've lost the lump on top of my head, the one that was bigger when

I had

> a headache and just felt odd the rest of the time.

> I've lost the mass of stuff on the back of my neck. I can tilt my

head

> back without the 'roll' limiting how far I can tilt.

> I've lost so much mass off of my stomach, hips and butt that the

waist of

> my pants is loose and about 3 inches higher up on my midsection.

> My feet are skinny and my ankle bones show, on both sides and I can

see

> the little veins on the top of my foot again.

> My wrists are lean enough to be able to wear a watch again... I

stopped

> wearing a watch in '94 because my wrist was so puffy that it hurt

to bend

> my hand back, my 'fat' wrist would mass up against the side of the

watch

> and start messing with the setting buttons and mess up the watch

> programming.

> The area from my jaw bone to my neck.. is still big, I still don't

have a

> slender neck, but it's smaller and now solid, with no wattle.

>

>

> Two weeks ago.. if I ate bread my ankles and feet swelled. Two

weeks ago

> when I was up and walking around for a half a day, my ankles and fee

> swelled.

> Yesterday I was on my third day of eating bread (I'd made a big

batch of

> herb and garlic bread Thursday morning, we're all pigging out on

it!!!)

> and I helped my dad and a neighbor put up a new garage door....

Three

> days of eating bread several times a day as part of my mini

meals... 6

> odd hours of being out on the concrete of the driveway and garage

holding

> lights, passing parts and balance door panels... and I didn't swell

up.

> This morning I woke up and I wasn't all swelled up.... I had bread

with

> my first mini meal of the day and I didn't swell up... and I just

had

> more bread with my second mini meal of the day and I didn't swell

up.

>

> These puffy, mushy flabby areas on my body that I assumed were hypo

> induced fat.... are going away... in about a weeks time, after

learning

> how to do massage to help stimulate and assist lymph nodes to drain

> accumulated lymphatic fluid.

>

> So? Have I gone totally insane? Am I imagining this as I did my

thyroid

> condition when I went into thyroid storm? Or have I found out

fifteen

> years after receiving RAI and being hypo since then that we are

subject

> to problems with our lymph nodes as a result of radiation and/or

surgery

> and much of the weight I'm carrying around is NOT fat.. but

accumulated

> lymphatic fluid due to a lymphatic system that is no longer working

as

> well as it should? (it can take as long as TWENTY years after

exposure to

> radiation or having had surgery for the lymph system to start

showing

> effects of damage.)

>

> I wouldn't have known about any of this had it not been for my funky

> legs, and that started up just this last spring...

>

> I'd like to discuss this a bit further with you guys... to see how

many

> others are suffering from similar problems... There are two lymph

support

> groups that I've been involved with that are available for specific

lymph

> stuff... but I do believe that many of us, not just me and ...

are

> having problems with this... and many may not realize it yet.

>

> There are tests, if you can find a doc that is knowledgeable about

lymph

> issues, they seem to be as rare as good thyroid docs. There are good

> physical therapists that can teach proper massage technique and

> compression bandage and garment application.... I've found that as a

> general rule insurance companies do not cover lymphedema treatment,

> therapies or bandage/garments... so it's an out of pocket thing for

much

> of it... Unless, of course, you get cellulitis and infections like

> did... and that required hospitalization...

>

> So.... I would strongly suggest that if you are someone at risk you

may

> want to do a bit of study/research/discussion to see if it's

something

> that you should be aware of for yourself.

>

> Not trying to be a doom sayer... not trying to be a gloomy gus...

but

> this put in the hospital.... and it had me scared that I had

blood

> clots all summer and had me holed up afraid to do anything that

might

> induce a stroke or heart attack... not to mention all the years

that I've

> had this puffiness that I thought was hypo fat.. that wasn't and is

now

> going away.

>

> I will have to do these massage techniques daily, for the rest of my

> life.. and be aware of infection dangers to prevent my getting as

sick as

> ... But the good side is that I found out what is going on

BEFORE it

> became life threatening to me, or disfiguring. You may have seen

pictures

> of the folks with the huge legs, often just one side. That is

> lymphedema... to an extreme.. but that is what it can become when it

> involves the legs.... But it can also affect the upper body, one or

both

> arms, the head, the neck, the face, the torso.... Which is more

likely

> in the case of surgeries or radiation treatments involving the upper

> body.

>

> See.... the hard rock-like tissue and the waxy skin that I have on

my

> shins is the start of the tissues becoming fibrotic. If left too

long it

> becomes permanent. Mine has softened enough to be like pitting edema

> again. And is no longer painful to the touch... but it may have

gone on

> too long to go back to normal. The skin is normal again though, no

longer

> waxy and it is able to sweat again. So that is a VERY good thing.

But

> under the skin is still hard and lumpy feeling.

>

> Topper ()

> www.thyrophoenix.com

[Guest guest]

This is the site that started my adventure on manual lymph drainage...

http://www.cancerbacup.org.uk/Site/Resourcessupport/Controllingsymptoms/Lymphoedema/Massage#9023

They strongly suggest being shown by a qualified therpist how to do this..... but... wow.... I'm so flabbergasted with how my body is responding.

Not all swelling is lymphedema... it can be other things as well, from fluid imbalance (sodium/potassium issues) to hormonal things (like menstrual fluid retention), to histamine reactions to allergies, to blood clots....

I went for 3 or 4 months terrifed that I had blood clots in my legs... it was only after finding pictures of a lymph patient that had legs EXACTLY like mine that I was convinced that I had some type of a lymph issue... That is why I joined the lymphedema groups.... it was those guys that read my description and symptoms and how my body was responding to the 'treatments' that I'd dreamed up (cause it made my legs not hurt so much) that were positive that I had stage 3 lymphedema.

Scary stuff, as I said.. not one doc EVER talked to me about this stuff.. even when I discussed with a couple of them how my body was changing... I'd been a body builder before my thyroid storm.... and well... it just didn't feel right... but... they said it was fat.. that I needed to learn to cut down on eating.. yada yada yada....

Topper ()

On Sun, 26 Sep 2004 16:41:43 -0000 Tazzieone@... writes:

I have been having problems with some swelling since I got so sick from blood pressure meds, where did you learn the manual massage tecniques, this I am very interested in...thanksTazzie

[Guest guest]

well I think that is the thing that is most discouraging, everyone

just assumes that the whole problem is that you/we/I are just fat,

lazy, depressed yada yada yada...when in fact I eat a much healthier

diet than all of the thin people I know, and it is appropriate to my

size and activity level...plus I have been a faithful about

exercising for the past 10 years...even when I really didn't have the

will or desire or energy I still did at least some exercise every

week, most of the average size people I know don't like to walk from

their car to the office door, let alone work out...so go figure...I

don't blame my thyroid for my problems entirely, in fact I think its

just one part of a more complex problem, my doc calls it metabolic

syndrome, I know it will take some time, but now I am confident I am

now on the right path...

Tazzie

thanks for the link :-)

> This is the site that started my adventure on manual lymph

drainage...

>

>

http://www.cancerbacup.org.uk/Site/Resourcessupport/Controllingsymptom

s/L

> ymphoedema/Massage#9023

>

> They strongly suggest being shown by a qualified therpist how to do

> this..... but... wow.... I'm so flabbergasted with how my body is

> responding.

>

> Not all swelling is lymphedema... it can be other things as well,

from

> fluid imbalance (sodium/potassium issues) to hormonal things (like

> menstrual fluid retention), to histamine reactions to allergies, to

blood

> clots....

>

> I went for 3 or 4 months terrifed that I had blood clots in my

legs... it

> was only after finding pictures of a lymph patient that had legs

EXACTLY

> like mine that I was convinced that I had some type of a lymph

issue...

> That is why I joined the lymphedema groups.... it was those guys

that

> read my description and symptoms and how my body was responding to

the

> 'treatments' that I'd dreamed up (cause it made my legs not hurt so

much)

> that were positive that I had stage 3 lymphedema.

>

> Scary stuff, as I said.. not one doc EVER talked to me about this

stuff..

> even when I discussed with a couple of them how my body was

changing...

> I'd been a body builder before my thyroid storm.... and well... it

just

> didn't feel right... but... they said it was fat.. that I needed to

learn

> to cut down on eating.. yada yada yada....

>

> Topper ()

>

> On Sun, 26 Sep 2004 16:41:43 -0000 Tazzieone@y... writes:

>

> I have been having problems with some swelling since I got so sick

> from blood pressure meds, where did you learn the manual massage

> tecniques, this I am very interested in...

> thanks

> Tazzie