Re: New here...

[Guest guest]

>

> Hello everyone,

>

> I'm new here and i thought i'd join up hoping to find some answers

about some physical health problems i've been having.

Hi Dee:

A great book to read is From Fatigue to fantastic by

Teitelbaum 2007. I was lucky my library has

a copy!!!

> I had a very hard time getting doctors to take me seriously and

have been told on more than one occasion that 'blood tests are within

acceptable ranges. Come back in three months and we'll check them

again.' And my personal favourite. 'Oh, i see you're on

antidepressants.' As soon as they know that its like everything else

i say is unimportant 'because depression can casue these symptoms.'

> I'm just so frustrated. I thought i'd do some research of my own

and it lead me in this direction.

> I'm really confused though, as half the things i read (and docs i

speak to) say that cfs/me/fibro etc... are 'syndomes' and don't

really exist as stand alone illnesses. Then i see other info that

says that they are genuine illnesses and have research to back it up.

> As i said, i'm just really confused.

> I have a list of symptoms i'm happy to share if anyone thinks they

might be able to shed some light on whats going on with me?

> I know i'm not crazy or a hypochrondriac so there must be more to

it than 'you're just depressed' etc....

> Can anyone help?

> Thanks so much and thanks for allowing me to join the group.

> Dee.

>

>

[Guest guest]

Dee,

I am sorry you have been getting conflicting information about your

health. The thing that comes to my mind, reading your email, is --

you don't have to justify how you feel. How you feel is how you feel.

You can choose to treat your symptoms individually or you can choose

to try to find the root cause of your symptoms -- both are valid

choices. But the main thing is, you deserve answers and help. I hope

you can find a medical-type person who takes you seriously and wants

to help you.

T

>

>

> Hello everyone,

>

> I'm new here and i thought i'd join up hoping to find some answers about

> some physical health problems i've been having.

> I had a very hard time getting doctors to take me seriously and have been

> told on more than one occasion that 'blood tests are within acceptable

> ranges. Come back in three months and we'll check them again.' And my

> personal favourite. '

[Guest guest]

Hi Dee

I'm sorry to hear you have been having such a difficult time. The

response you have had from Doctors sounds just like the response I

have had from mine incuding the " all your tests are fine " and then an

empty silence as if that resolves the issue.

My GP justs shrugs his shoulders and tells me to exercise.

I find CFS, while sometimes coinciding with depression, feels quite

different from depression but I have had the same reaction from

medical people when they see I had a period of depression last year.

Several have just stopped listening and assigned my symptoms to

depression.

I have had CFS/ME for about a year.

I have found my greatest source of help with my CFS has been the self

help course run by www.cfidsselfhelp.org and the resources and case

studies on their website.

The course has helped me stabilise my health and learn to manage it

better. One of the things I found especially helpful was that the

case studies provided on the website and the interaction with the

other course participants provided the acknowledgement of the reality

of living CFS which I couldn't find elsewhere. I finally didn't feel

so alone.

I have also found the book Living with ME by Dr Shepherd

helpful in understanding CFS. I have found it a great resource because

it gives information on the multitude of symptoms which can be

experienced with CFS.

You are right you are not crazy or a hypochrondriac. CFS is real.

All the best Dee

Regards

[Guest guest]

Hi Dee

I'm sorry to hear you have been having such a difficult time. The

response you have had from Doctors sounds just like the response I

have had from mine incuding the " all your tests are fine " and then an

empty silence as if that resolves the issue.

My GP justs shrugs his shoulders and tells me to exercise.

I find CFS, while sometimes coinciding with depression, feels quite

different from depression but I have had the same reaction from

medical people when they see I had a period of depression last year.

Several have just stopped listening and assigned my symptoms to

depression.

I have had CFS/ME for about a year.

I have found my greatest source of help with my CFS has been the self

help course run by www.cfidsselfhelp.org and the resources and case

studies on their website.

The course has helped me stabilise my health and learn to manage it

better. One of the things I found especially helpful was that the

case studies provided on the website and the interaction with the

other course participants provided the acknowledgement of the reality

of living CFS which I couldn't find elsewhere. I finally didn't feel

so alone.

I have also found the book Living with ME by Dr Shepherd

helpful in understanding CFS. I have found it a great resource because

it gives information on the multitude of symptoms which can be

experienced with CFS.

You are right you are not crazy or a hypochrondriac. CFS is real.

All the best Dee

Regards

[Guest guest]

Dee

Your story is sooo familiar. Most, if not all, of us could send your letter

and just sign our own name. Traditional doctors in the US have their

procedures and tests and if nothing shows up they throw up their hands and

quit or blame it on your mental health. They have never been trained to ask

the right questions or what other tests that are available. It is

ignorance. And they don¹t have the time or curiosity to delve further.

Have you been tested for Lyme disease? The disease presents a lot of the

same symptoms. The tests aren¹t that accurate so some people have them done

many times before they get a positive....then that points them in a

treatment program.

You also need to point out that chronic fatigue, caused by stress,

underlying infection, etc., is different from Chronic Fatigue Syndrome. CFS

is a multifactorial illness that attacks the endocrine system and immune

system and has a genetic component. It is easy to confuse the 2 but when I

explain the difference they begin to listen (or at least shut up). I had a

primacy care doctor that insisted I see a stress therapist even though I

elaborated on my ³stress free life². I finally decided that she was the most

stressful relationship that I had and changed doctors. The new doctor is

marginally better

You need to see a CFIDS specialist? HA! There are only a few around. I had

good luck with the Fibro and Fatigue Center (US only)

(FFC)..not a cure but improvement. If you have a holistic physician or

complementary physician that is your next best thing. They look at the body

very differently and will do different tests than traditional medicine.

Other suggestions is read books ( Teitlebaum From Fatigue to

Fantastic.

Search the web: Co-cure and Immunesupport are very helpful. Just keep

reading and it will help you understand, to some extent, what is going on

with your body.

It is very frustrating illness. There is a cure out there...we just need to

find it.

Lois

>

>

>

> Hello everyone,

>

> I'm new here and i thought i'd join up hoping to find some answers about some

> physical health problems i've been having.

> I had a very hard time getting doctors to take me seriously and have been told

> on more than one occasion that 'blood tests are within acceptable ranges. Come

> back in three months and we'll check them again.'

[Guest guest]

Thanks so much everyone. I will continue with my research and continue with my

search for an answer...and probably continue to go through a few doctors too.

lol

If i find out anything i'll let you all know.

cheers,

dee

[Guest guest]

Lois,

That was a really nice response. Ditto. I don't have a lot to ad, but there are

a couple of things. Like you said, it is important to note that chronic fatigue

syndrome is different than just being diagnosed with chronic fatigue. This was

why I didn't get social security the first time I applied. Not all doctors are

comfortable with or qualified to diagnose someone with chronic fatigue syndrome.

My doctor forgot to mention that she only wrote chronic fatigue on my records.

Unfortunately, a lot of general practitioners are not educated themselves cfs or

fibromyalgiia. Sometimes patients end up educating doctors, which at the least

is tedious and frustrating. I also caution people against going to see a doctor

who is only specialized in  knowledgeable about fibromyalgia to receive

treatment for cfs because the recommendations for physical activity level and

such is different.

Also, for me part of my original diagnosis with cfs included going to several

psychologists and being tested for depression, which was ruled out. Of course,

they completely missed post traumatic stress symptoms from the severe

hypothermia episode I went through, so I have limited faith in that profession.

Depression can occur as a result of a prolonged illness, and for doctors to

decide that someone getting down occasionally is the root of everything is just

them not working hard enough.

There are specific criteria that defines chronic fatigue syndrome. It is

important to rule out other things that it can be confused with. But this is a

definable illness, regardless of whether the cause has been identified. There

are a lot of diseases in this world that don't have an identified cause.

Sometimes the best treatment is doing nothing. Depends on the person, which I

think is because cfs may be different diseases causing similar sets of symptoms.

By that I mean that I believe the cause of my cfs is viral because of the way

the symptoms came on, but not everyone has the same type of onset. It can be

slow or really sudden. Anyways, I mention this only as a warning of heavy

treatments. They can make you worse. I have known some people with cfs who have

gotten better by completely withdrawing from their lives for years and very 

gradually building themselves back up physically.

 

I'm sorry if I've made this more confusing instead of less. CFIDS.org is another

really good source of information that I recommend checking out.

-Alia