Re: Mystery finally solved - for once!

[Guest guest]

Great that you have a diagnosis - even if there is no immediate " cure " a

diagnosis aids understanding and often helps up to cope rather better with

symptoms.

Not sure if this would help or not,but how about looking into some of the fir

infra red sauna systems - seem to be good detox mechanisms, esp, for those of us

who cannot easily maintain good exercise habits -have seen references to them on

other sites with regard to easing fybromyalgia and chronic fatigue and claims

also to help with cellulite - look at any health contraindications of course,

but it could be worth a try. ([Not cheap, but vary in price from I think around

£169 upwards, depending on personal choices - also vary from blanket style wrap

around to chairs to dome style etc....!)

Vicky

>

> Hello,

>

> Exciting news.

>

> For those of you who know me on here, you will probably know that I have many

odd health related things happen to me, however the docs usually don't know why!

>

> Today I had a breakthrough. I am very excited to say that a world renowned

specialist has.....drum roll please.....DIAGNOSED ME WITH SOMETHING!!!!!!!

>

> Some time ago I posted some photos of my 'funny looking arms' and asked other

forum members what they thought could be the problem.

>

> Well, today I found out.

>

> I have lipoedema (or lipedema, depending on how you want to spell it).

>

> The specialist checked to see if it was myxoedema because of my thyroid stuff,

but he is absolutely certain that it is lipoedema which is a chronic disorder

(some call it a disease) of fat metabolism and distribution.

>

> He stated that myxoedema (due to thyroid related stuff) is the accumulation of

fluids in the tissues because of large protein molecules that accumulate. But I

don't have myxoedema.

>

> I had to break the news to my female relatives that they are good candidates

for lipoedema because it is hereditary.

>

> So, if any of you out there have lots of stuff that looks like cellulite and

can't quite work out why it is there, it might be worthwhile getting it checked

out. Trouble is, apparently there aren't too many docs in the world who

specialise in lipoedema. My specialist is a lymphoedema specialist (who

diagnoses lipoedema and various oedemas) and even though I had to travel to see

him, I didn't have to go TOO far. Apparently he has people come over from the

UK just so he can assess them. He doesn't treat. He assesses and yet people

travel the globe to see him.

>

> Anyhow, I just thought I'd mention it because if you have tried to diet and

your fat doesn't budge and you have what you THINK is cellulite, it may actually

be something else.

>

> Interesting, huh?

>

> P

>

[Guest guest]

From: thyroid treatment

[mailto:thyroid treatment ] On Behalf Of hobbsvic

Sent: 07 May 2010 22:31

thyroid treatment

Subject: Re: Mystery finally solved - for once!

Great that you have a diagnosis - even if there

is no immediate " cure " a diagnosis aids understanding and often helps

up to cope rather better with symptoms.

Not sure if this would help or not,but how about looking into some of the fir

infra red sauna systems - seem to be good detox mechanisms, esp, for those of

us who cannot easily maintain good exercise habits -have seen references to

them on other sites with regard to easing fybromyalgia and chronic fatigue and

claims also to help with cellulite - look at any health contraindications of

course, but it could be worth a try. ([Not cheap, but vary in price from I

think around £169 upwards, depending on personal choices - also vary from

blanket style wrap around to chairs to dome style etc....!)

Vicky

>

> Hello,

>

> Exciting news.

>

> For those of you who know me on here, you will probably know that I have

many odd health related things happen to me, however the docs usually don't

know why!

>

> Today I had a breakthrough. I am very excited to say that a world renowned

specialist has.....drum roll please.....DIAGNOSED ME WITH SOMETHING!!!!!!!

>

> Some time ago I posted some photos of my 'funny looking arms' and asked

other forum members what they thought could be the problem.

>

> Well, today I found out.

>

> I have lipoedema (or lipedema, depending on how you want to spell it).

>

> The specialist checked to see if it was myxoedema because of my thyroid

stuff, but he is absolutely certain that it is lipoedema which is a chronic

disorder (some call it a disease) of fat metabolism and distribution.

>

> He stated that myxoedema (due to thyroid related stuff) is the

accumulation of fluids in the tissues because of large protein molecules that

accumulate. But I don't have myxoedema.

>

> I had to break the news to my female relatives that they are good

candidates for lipoedema because it is hereditary.

>

> So, if any of you out there have lots of stuff that looks like cellulite

and can't quite work out why it is there, it might be worthwhile getting it

checked out. Trouble is, apparently there aren't too many docs in the world who

specialise in lipoedema. My specialist is a lymphoedema specialist (who

diagnoses lipoedema and various oedemas) and even though I had to travel to see

him, I didn't have to go TOO far. Apparently he has people come over from the

UK just so he can assess them. He doesn't treat. He assesses and yet people

travel the globe to see him.

>

> Anyhow, I just thought I'd mention it because if you have tried to diet

and your fat doesn't budge and you have what you THINK is cellulite, it may

actually be something else.

>

> Interesting, huh?

>

> P

>

No virus

found in this incoming message.

Checked by AVG - www.avg.com

Version: 8.5.437 / Virus Database: 271.1.1/2849 - Release Date: 05/06/10

18:26:00

[Guest guest]

Hi P - you must be

absolutely delighted that at last, you have been given a diagnosis for

SOMETHING. Slowly, slowly catchee monkee! However, what has he recommended as

treatment for lipoedema? I see it has an association with lymphoedema - and

that was what we wondered whether it might be or not. Check out this http://journals.lww.com/aswcjournal/Abstract/2010/02000/Lipedema__A_Frequently_Misdiagnosed_and.11.aspx

- but you have to first sign up to get to the information, but it looks

interesting.

Otherwise, how are

you feeling these days. I worry when you disappear =- but then I hope you have

disappeared because things have started to slot into place and you are getting

back your normal health once more.

Luv - Sheila

>

> Hello,

>

> Exciting news.

>

> For those of you who know me on here, you will probably know that I have

many odd health related things happen to me, however the docs usually don't

know why!

>

> Today I had a breakthrough. I am very excited to say that a world renowned

specialist has.....drum roll please.....DIAGNOSED ME WITH SOMETHING!!!!!!!

>

> Some time ago I posted some photos of my 'funny looking arms' and asked

other forum members what they thought could be the problem.

>

> Well, today I found out.

>

> I have lipoedema (or lipedema, depending on how you want to spell it).

>

> The specialist checked to see if it was myxoedema because of my thyroid

stuff, but he is absolutely certain that it is lipoedema which is a chronic

disorder (some call it a disease) of fat metabolism and distribution.

>

> He stated that myxoedema (due to thyroid related stuff) is the

accumulation of fluids in the tissues because of large protein molecules that

accumulate. But I don't have myxoedema.

>

> I had to break the news to my female relatives that they are good

candidates for lipoedema because it is hereditary.

>

> So, if any of you out there have lots of stuff that looks like cellulite

and can't quite work out why it is there, it might be worthwhile getting it

checked out. Trouble is, apparently there aren't too many docs in the world who

specialise in lipoedema. My specialist is a lymphoedema specialist (who

diagnoses lipoedema and various oedemas) and even though I had to travel to see

him, I didn't have to go TOO far. Apparently he has people come over from the

UK just so he can assess them. He doesn't treat. He assesses and yet people

travel the globe to see him.

>

> Anyhow, I just thought I'd mention it because if you have tried to diet

and your fat doesn't budge and you have what you THINK is cellulite, it may

actually be something else.

>

> Interesting, huh?

>

> P

>

No virus

found in this incoming message.

Checked by AVG - www.avg.com

Version: 8.5.437 / Virus Database: 271.1.1/2849 - Release Date: 05/06/10

18:26:00

[Guest guest]

Hi P.

Many months ago I happened to meet a nurse who specialised in treating

lymphodema and in conversation she explained how she gently - very gently -

makes strokes along the arms/legs in a particular direction. There is no

presssure placed on the body and she said that the lymphodema reduces. Almost

like a feather touch.

She said that many people who had had a cancer treatment get lymphodema, and it

was mainly these that she treated. (think it was lymph cancer removal)

I am sorry that she was in Australia, but it may be worth trying to find someone

in UK who provides the same service. I got the impression that the treatment

she provided removed the lymphodema.

jennyF

>

> Great that you have a diagnosis - even if there is no immediate " cure " a

diagnosis aids understanding and often helps up to cope rather better with

symptoms.

>

> Not sure if this would help or not,but how about looking into some of the fir

infra red sauna systems - seem to be good detox mechanisms, esp, for those of us

who cannot easily maintain good exercise habits -have seen references to them on

other sites with regard to easing fybromyalgia and chronic fatigue and claims

also to help with cellulite - look at any health contraindications of course,

but it could be worth a try. ([Not cheap, but vary in price from I think around

£169 upwards, depending on personal choices - also vary from blanket style wrap

around to chairs to dome style etc....!)

>

> > P

> >

>

[Guest guest]

Hi Sheila,

Yes, you understand me completely! The diagnosis of SOMETHING almost made me

sing. Ha ha. The specialist allowed me to record the session (because of my

bad memory) and it is so funny to listen back and hear the absolute joy in my

voice when he diagnosed me - with SOMETHING. Anyone else would think we were

crazy to be happy about a diagnosis, but after having so many things

undiagnosed, having a name for something I have feels really good. Even the

specialist said 'at least you know what you have got now'. (badly written, but

I hope you know what I mean).

Thanks for asking how I am these days. Sometimes I disappear because I find all

of this health stuff can be a bit consuming, so I try and do other things + I

have been dealing with my neurological stuff since January so it doesn't always

'fit' on this forum and I don't want to put stuff on here that is 'off topic'.

However, I was really interested to see how many other thyroid sufferers also

suffer from neurological symptoms. My neurologist appointment is on Monday, so

hopefully the new neurologist will be able to shed some light on what is going

on. I think that I have mentioned I now suffer from uncontrollable pain during

migraine episodes, so I hope he will be able to help on that front. I am still

not game to take the narcotic drug (similar analgesic effects as morphine) that

the GP's prescribed for the pain. I almost took it today as the pain was about

8/10, but just rode the pain out until the migraine subsided. My poor long

suffering partner has to constantly listen to me talk about my health issues,

however he is very patient and never tells me to stop talking about it. I think

other friends are bored to death with it, so I only mention it sometimes. That

is why it is so nice to be in contact via this forum. I have also joined a

migraine forum and found another person who has exactly the same neurological

symptoms as me, so we are both trying to nut things out together. It is helpful

and supportive having other people in similar situations to chat to. Thanks so

much for running this forum.

Now, on to the lipoedema..... Thanks for the website link. Lipoedema cannot be

'cured', however I can do things to manage it. The specialist sent me home with

a swag of information, including a booklet about the condition, as well as the

names of dieticians who are knowledgeable about the condition. The main things

he mentioned would help were 'foot paddling' to move the fluids through my body,

a particular arm and breath technique which is apparently one of the most

effective ways of shifting the stuff out of my 'fat' arms , and talking to my

doctor about using a product to strengthen my blood capillaries (because

capillaries are weakened in lipoedema). Someone just needs to poke me with a

finger and I bruise, so this product will assist with strengthening the

capillaries, so bruising is less likely to happen, plus it may slow down the

progression of the lipoedema. I also have to wear 'boy pants' instead of normal

knickers, so as to not restrict the lymph flow and fluid flow.

Lymphoedema is a different condition, HOWEVER if lipoedema progresses, it can

become lipo-lymphoedema, so it is important for me to make some changes now to

try and stabilise the lipoedema.

P xo

...................

> Hi P - you must be absolutely delighted that at last, you have been given a

diagnosis for SOMETHING. Slowly, slowly catchee monkee! However, what has he

recommended as treatment for lipoedema? I see it has an association with

lymphoedema - and that was what we wondered whether it might be or

not....Otherwise, how are you feeling these days. I worry when you disappear =-

but then I hope you have disappeared because things have started to slot into

place and you are getting back your normal health once more.

[Guest guest]

Thanks Vicky,

Thanks for the info about the sauna systems. It is interesting because some of

the symptoms of fybromyalgia seem very similar to lipoedema! I live in Oz so

I'm not sure whether we have the systems over here, but thanks for telling me

about it.

P xo

.........................

>

> Not sure if this would help or not,but how about looking into some of the fir

infra red sauna systems - seem to be good detox mechanisms, esp, for those of us

who cannot easily maintain good exercise habits -have seen references to them on

other sites with regard to easing fybromyalgia and chronic fatigue and claims

also to help with cellulite

[Guest guest]

Hi ,

I live in Oz too! Yes, there are specialist nurses and therapists who deal with

lymphoedema in this state, as well. I have lipoedema though, and it doesn't

respond to massage like lymphoedema. Lipoedema is a different thing. I have

been told the same thing as you about massage treatment for lymphoedema. Light,

gentle strokes shift the lymph fluid and reduce the lymphoedema. The nurse that

you met has probably helped the lives of many people. Good on her!

Cheers,

P xo

..............................

>

> Hi P.

>

> Many months ago I happened to meet a nurse who specialised in treating

lymphodema and in conversation she explained how she gently - very gently -

makes strokes along the arms/legs in a particular direction. There is no

presssure placed on the body and she said that the lymphodema reduces. Almost

like a feather touch. She said that many people who had had a cancer treatment

get lymphodema, and it was mainly these that she treated. (think it was lymph

cancer removal). I am sorry that she was in Australia, but it may be worth

trying to find someone in UK who provides the same service. I got the

impression that the treatment she provided removed the lymphodema.

[Guest guest]

We have a far infrared sauna blanket which my daughter (CFS) uses to detox. I

have set up in the spare bedroom on a single bed as it is quite big to keep

moving about.

http://drmyhill.co.uk/wiki/Detoxing_-_Far_Infrared_Sauna_(FIRS)

I purchased from Getfitt Ltd but didn't pay for the monthly treatment programme.

We haven't had any problems using it.

Judy

>

> Thanks Vicky,

> Thanks for the info about the sauna systems. It is interesting because some

of the symptoms of fybromyalgia seem very similar to lipoedema! I live in Oz so

I'm not sure whether we have the systems over here, but thanks for telling me

about it.

> P xo

>

> ........................

> >

> > Not sure if this would help or not,but how about looking into some of the

fir infra red sauna systems - seem to be good detox mechanisms, esp, for those

of us who cannot easily maintain good exercise habits -have seen references to

them on other sites with regard to easing fybromyalgia and chronic fatigue and

claims also to help with cellulite

>

[Guest guest]

ooophs - silly sausage - I misread it didnt I.

F

>

> Hi ,

> I live in Oz too! Yes, there are specialist nurses and therapists who deal

with lymphoedema in this state, as well. I have lipoedema though, and it

doesn't respond to massage like lymphoedema. Lipoedema is a different thing. I

have been told the same thing as you about massage treatment for lymphoedema.

Light, gentle strokes shift the lymph fluid and reduce the lymphoedema. The

nurse that you met has probably helped the lives of many people. Good on her!

> Cheers,

> P xo

> .

>