diagnosis

[Guest guest]

I was just wondering how doctors diagnose ME as opposed to CFS? I know they are

two different conditions and hate the thought that an ill informed doctor might

give me a wrong diagnosis.

Does anyone know the medical diagnostic tests that they use for these two

conditions?

I've researched my own symptoms (which i'm having a hard time convincing any

doctor of) and i believe i'm much closer to an ME diagnosis. People here might

be able to better clarify which of these they think I may have (as i believe you

all have a better understanding of it all than most doctors out there.)

Here is a quick list of how i am feeling....

*mentally very slow. I studies massage therapy only a few years ago and now i

have trouble remembering who owns which clothes when folding the washing! My

'thinking' in general seems to have slowed down if that makes any sense. I said

to my doc awhile ago that i felt like i was becomming 'more stupid' (before i

knew that me/cfs even existed.) I also foget the names for everyday things and

often can't find the right words for things.... (just some examples)

*aching muscles! I used to go to the gym and could work out for an hour quite

easily but now even after about 10 minutes of mild exertion i feel as if i've

been going for an hour. Almost a jelly like feeling in the muscles...just achy.

*Sore joints that seem to move around a bit. Like i'll have terribly painful

hands for days on end, then i'll feel as if i have a knife in my hip joint etc..

*My feet ache all the time, to the point where i'm now limping.

* I feel easily tired and can sleep a lot...sometimes up to 17 hours a day! But

then paradoxically, i also have trouble falling asleep at night. ??? (doc says

this is because i sleep in the day but i know it is not, it feels totally

different to that.) Sorry, that probably sounds silly i know. I feel most tired

when i wake up and don't 'perk up' until late in the afternoon...then i fade

earlyish but as i said find it hard to 'settle' into sleep.

*I am hypothyroid and have hashimoto's disease and also PCOS.

*I have abnormally high blood pressure (to where i need to be on meds) and also

high cholesterol and triglicerides (despite having a reasonable healthy diet.)

Doc thinks this might be genetic?

*I've started having problems with my skin...a psorisis like thing on my scalp

which seems to have moved to the backs of my ears where they split, crack and

bleed for no reason.

*Oh, and the latest is a swelling in my eyelid of all places! This also

sometimes 'splits' like a long papercut or something, and hurts like hell.

I would say they're the major things off the top of my head anyway. Does anyone

have any opinions on what this could be? Does it sound more like cfs or m.e? Or

maybe neither?

I know no one can 'diagnose' me as such, i was more interested in your thoughts

and opinions etc...

basically i feel like a different woman to the one i was a year ago

As i said, any advice would be greatly appreciated.

Dee

[Guest guest]

Hi Dee, well you opened Pandora’s box with that question! It’s not so much a

matter of getting diagnosed with one or the other…as the CFS/CFIDS/ME debate

is basically a huge difference of opinion and analysis. You would probably

not get a diagnosis of ME in the US unless you go to one of the very few

American specialists who “believes” in ME. Most these days do not <sigh>,

despite all evidence to the contrary.

If I were to take some information to a doc, it would be the Canadian

Consensus Guidelines to the diagnosis and Treatment of ME/CFS…all over the

internet and easy to download. But, if your doc feels it is a “somatisation

syndrome” (AKA psychiatric) they won’t give it a glance, but also will not

have the honesty to tell you what they really think. It’s a minefield out

there <sigh>.

One thing I can tell you is, don’t exercise! You can only make yourself

worse at this point, don’t push yourself to exhaustion and jelly legs even

if it is only 10 minutes. This is a big problem with ME, we think we are

supposed to fight one’s way out of it, but really one must rest, rest, rest

to avoid more muscle damage and getting worse.

If it turns out that you have another condition you can always start

exercising again. This has been shown again and again, even with

professional level athletes. And if you need 17 hrs/day of sleep, you need

it so take it. Your body needs this to try to recover.

In my experience, the skin crack-and-bleed thing (and rashing) could be from

some food allergies or a dietary lack of some nutrient…or, it could be

psoriasis, which can be a sign of RA. Good luck dear. Aylwin xox

[Guest guest]

Thanks everyone.

Yes i do have psoriasis. Its on the bottom of my hairline and its

spreading up towards my ears, so i think the cracks are probably

that. I can peel skin of in largeish thick flakes (yuk i know,

sorry!) I haven't been diagnosed with inflamatory arthritis (what is

that exactly? Is it rhumatoid arthritis?) Though i have been

diagnosed with osteo arthritis. I have it in my knees and spine and

neck. I also had a bad bout of septic arthritis when i was four

years old and needed surgery in my hip. I remember telling the

doctors (my mum told them too) that i had terrible hip pains and

sometimes could barely walk, i would cry at night and just not want

to play etc... they all said i had nothing wrong, that nothing

showed up on tests etc... and that i was doing it for 'attention'.

(Isn't it funny how with even little kids, if they can't find

something right away they put it down to a psych issue. As a kid it

was 'attention seeking' as an adult its 'depression.') SHEESH!

Anyway, i remember lying in bed one night, when i was four, and i

got this most horrendous pain through my body. Mum came running in

and my body had become as rigid as a board, i couldn't move and i

couldn't speak...just this terrible pain. I then started having a

siezure and my mum and dad rushed me to the hospital. By this time i

had collapsed and don't remember anything except waking up in the

recovery ward with my legs in plasters and unable to move from the

waist down. Apparently a doctor realised i had septic arthritis and

it had been getting worse for months. They had to operate

immediately on my hip otherwise they said i would be a wheelchair by

the time i was 15. So much for 'attention seeking behaviour.!'

I don't know if this could have in anyway had something to do with

whats going on now or not though.

The doc kept my last blood results but i do know that i was negative

for ana and that my sedimentation rate was way out (like it was

really sluggish or something.) My ESR was also elevated and so was

my platelet count. He said all this means nothing, nothing to be

concerned about.

Do you have any ideas what these abnormalities could mean?

Thanks again guys for helping me out.

dee

ps sorry for opening Pandora's Box! lol

[Guest guest]

There is a type of psoriatic arthritis...which is an inflammatory

arthritis..here is a link for you for signs and symptoms, how to get diagnosed

and effective treatment with DMARDS..Hope this helps:)

http://www.psoriasis.org/about/psa/

dooben73 wrote: Thanks everyone.

Yes i do have psoriasis. Its on the bottom of my hairline and its

spreading up towards my ears, so i think the cracks are probably

that. I can peel skin of in largeish thick flakes (yuk i know,

sorry!) I haven't been diagnosed with inflamatory arthritis (what is

that exactly? Is it rhumatoid arthritis

[Guest guest]

Hi Dee, sorry about that…”inflammatory arthritis” is what my rheumy called

my arthritis…kinda like RA and kinda like Ankylosing Spondylitis, but not

exactly either. RA and AS are about the inflammation, which damages joints

over time, but Osteo is more in the bone (I’m not explaining this clearly,

I’m sure any arthritis website would do a better job). Psoriasis can be an

indicator of the tendency to develop arthritis, my daughter has it so I’m

worried about her too.

That sounds like a horrible childhood experience and I wonder if that

infection did not set you up for later miseries. Same old crap with the

psychiatric slant hey? So nasty. I’m not the expert on tests, but I think

those mean that you do have markers of inflammation & /or infection in your

blood. That’s not nothing, but a dismissal when the doc couldn’t be bothered

IMHO. Also, half of RA blood tests (the specific test) are false negative.

Same old, same-old, in other words.

No worries about Pandora’s box, we’re all rummaging through there, trying to

sort it all out! XOX Aylwin

[Guest guest]

This discussion is very timely for me.

I just realized that earlier this week, when I had the flare-up of

joint pain & fatigue that my psoriasis had just exploded. I thought it

was weird - because it was worse that I can ever remember it being -

but didn't connect the two (I have it mostly on my scalp, face, neck

area).

So, this morning I googled RA & psoriasis (to see if the latter was a

symptom of RA) and found a lot of the information you are now talking

about. Strange coincidence! The websites everyone posted have been

very helpful.

I have an appt with the rheumatologist two weeks from today.

Donna

[Guest guest]

Thanks so much everyone. And thankyou for the websites, i'm going to check them

out now and see if the psoriatic arthritis fits. I do have an appointment with a

rheumatologist in August so i'll hopefully find out some more info.

Thanks so much once again girls, i really appreciate it.

dee