Welcome, Jane!

[Guest guest]

A warm welcome to our little group, Jane!

Whew...that one line already made me breathless! LOL!

I suffer from breathlessness, too, and so far none of

the doctors have been able to give me an adequate

explanation. I don't blame them - I've had

cardiomyopathy followed by a stroke so we all thought

it was my heart. However, my last check with my

cardiologists in Australia and Singapore confirmed

that my heart function is normal; my lung function is

normal and the usual symptoms associated with Conn's -

the uncontrollable hypertension - is stable. No one

could tell me why I was still so fatigued and dizzy.

Even my potassium and iron levels are fine.

I was finally sent to a very good primary care

physician here in Singapore where I live and he turned

out to be a good friend and associate of my primary

care doctor in Australia where I spend half my time.

This is great coz finally I will get some synergy in

my health care! Anyway, my doc here has made an urgent

appointment with one of our top endocrinologists to

get a second opinion on my Conn's. Jane, if you've

read our earlier posts, you'd know about my recent

adrenalectomy. What we hope to uncover now, is the

reason for my chronic fatigue and the dizzy spells

which are more a sensation of heavy-headedness - and

imbalance when I stand. I'm not sure if you could

compare your situation to mine because I do have other

major illnesses which has made diagnosing me very

difficult. My symptoms could also be due to the other

illnesses and not my Conn's. Still, as my doc pointed

out, once your endocrine system is malfunctioning, it

affects a lot of other things. My breathlessness,

dizziness and fatigue were, and still is, affecting my

daily living and I'm so frustrated that no direct

cause has been found. My endo in Australia doesn't

seem to take these symptoms that seriously and I'm

feeling as miffed about it all as Grandma K (one of

our group members) is feeling!

One very interesting (?) possibility is being

considered - that I have Chronic Fatigue & Immune

Dysfunction Syndrome (CFIDS) or, I think in the UK

it's called Myalgic Encephalomyelopathy (ME). I am

likely to be tested for Mycosplasma, a bacteria which

the molecular biologists believe has been altered for

the purpose of germ warfare. Great.

My symptoms - the breathlessness, fatigue, muscle

aches etc, are the same as Gulf War Syndrome sufferers

and apparently the bacteria attacks our central nerous

system - brain, heart, adrenals. I hope in your case,

Jane, that it is confined to Conn's which is easily

treatable and not to some germ that's been genetically

altered! Are you on medication now? Will you need

surgery? Is your Conn's due to a tumour or

hyperplasia?

I'll let you all know what the endo says tomorrow.

Elaine

--- janegoddardcrawley

<janegoddardcrawley@...> wrote:

> Hello everyone!

>

> My name is Jane, i've been looking on the internet

> for information on

> Conns Syndrome and have finally found a support

> group, a very

> exclusive one considering there's only a few

> members!

>

> I had Conns Syndrome confirmed about a month ago,

> after blood tests

> etc.

>

> Im 22 and in the RAF at RAF Marham, Norfolk, in the

> UK. The only

> reason i found out ive got this problem is because i

> wanted to go on

> a parachute course and when i went for the medical i

> set the alarm

> off on the blood pressure monitor! I subsequently

> have not been

> allowed to jump out of an aeroplane........ probably

> for the best!!

>

> Due to being in the RAF things are moving along

> reasonably fast

> (fingers crossed!), its only been about 4 months

> since i went for my

> medical, im seeing my consultant on wednesday so

> hopefully i'll find

> out more then. I want this sorted as soon as

> possible as i have been

> medically downgraded and in the RAF that means no

> detachments to

> sunny desert climates and not much chance of

> promotion, and im pretty

> eager to do both!

>

> Last week i had to wear a 24 tape heart monitor that

> was a right pain

> in the arse! made sleeping uncomfortable, should get

> the results from

> that and an ultrasound and xray on wednesday.

>

> I read in one of the emails that someone has

> suffered from

> breathlessness. I had to have time off of work a

> fortnight ago

> because i was feeling out of breath without doing

> anything and also

> felt dizzy. The doctor had no idea why i felt

> breathless, i was

> wondering if any of you knew why i have felt like

> this?

>

> I am very lucky at the moment to have other things

> to think about,

> ive got a wonderful boyfriend, Doug, who is really

> understanding when

> i feel down and get upset, and were moving out of

> the barrack block

> on friday to rent a house together. So interior

> decorating and

> buying furniture is occupying me for the moment!

>

> I would really like to hear from anyone about how

> they are coping and

> how their treatment is going, so please email me.

>

> Jane

> : )

>

>

__________________________________________________

[Guest guest]

Welcome, Jane! Sorry that you haven't been feeling very well.

Fatigue is very common in RA, but there are several strategies to help

manage it. Here is a very good article:

" Mastering the Impact of Fatigue in Rheumatoid Arthritis " :

http://www.rheumatology.hss.edu/pat/eduPrograms/livingRA/fatigue_n_RA.asp

If I were you, I would go back to your rheumatologist and tell him what

you've been telling us and ask him for help.

Don't worry about venting - that's what we're here for.

[ ] new member

>

> Hello,

>

> My name is Jane, I have Ra,Iam 42 yrs old.I have no one to

talk to about this diaese.I try to talk to my family and my husband and

close friends about it.I think they are tired of listening to me.My

husband doesn't really know how I feel,he seems to think it is something

minor,he is tring to understand.

>

> I was diagnose with RA a year ago,I guess I've had it for 2yrs

now,I'm still in the early stage of it.I hurt every where.Iam taking mtx

right now.I get really tired from it,I have no energy right now,is it

sopose to feel this way?I do not have any lumps right now but my whole

body hurts and my hands swell and ake all over.Has anyone been through

this at a early stage,I'm so new with this,I know I've had it for a

while,but this is the first time I got to really ask anything.

>

> I'm sorry I dumped every on my first time on

>

> thanks for listening

>

> Jane

>