A short sad history of ME/CFS

ash4becks

bigjl wrote: »

Fibromyalgia is considered a syndrome rather than a condition.

I am being treated for Sero Negative Inflammatory Arthritis, this is a medical condition, my Rheumy hasn't been more specific, might be RA, but as I am Seronegative he is going to wait before being more definative.

At my last appt he reported that my inflammatory markers where coming down with my current med, when questioned on my back pain, knee pain, wrist pain, fatigue etc, he said that is my Fibromyalgia, I had suspected this for a while but this consultation confirmed this.

A lot of people confuse conditions with syndrome, though syndrome also tend to be a specific grouping of problems and symptoms, normally with very difficult diagnostics problems such as very little in the way of blood tests or Xrays to prove or disprove a diagnosis.

Yes, some Dr's don't believe such things exist, some are very open to new ideas and theories.

I have lost count of the number of healthy patients I have gone out to see as emergency calls that had indigestion or pulled a muslce doing bench presses and then googled chest pain and thought they where dying.

If you are worried, see your GP, if you aren't satisfied, change GP's.

@ ash4becks, a lot of Dr's have forgotten their people skills after years of working in their field at higher levels, he or she might have meant to say that losing weight would be a good idea, as being overweight does make people tired, as does not eating correctly.

It is a good idea to advise getting fitter and improving your cardio vascular fitness. But until the Dr is put in your position then he will never be able to understand how you may be feeling.

My own GP was going down the avenue of finding out the cause of my back and neck pain, probably because I work in a physically demanding job, though probably not for much longer.

When seen at the Musculo-Skeletal Assesment Clinic the physio did some blood tests and then referred me to the the Rheumy.

Now some may say that my GP should have done those blood tests or suspected Inflammatory Arthritis, but my feeling is he made an educated decision to refer me to an appropriate HCP.

That to me is the essence of General Practice, when something may be outside the field of normal run of the mill things, then refer to the more qualified professional in that field, wether that be another Dr or a clinic run by Senior Nurses or Senior Physiotherapists.

I think the biggest problem with the NHS is GPs that make diagnosis on the basis of their own opinion without involving the more specialised parts of the NHS.

Rheumatology is not within the remit of my professional practice, I work for the Ambulance service, but I refer to the appropriate department most of the time, foe example if a 12 lead ecg indicates a ST elevation MI then off to the cathlab with you, if it is a minor ailment, then off to the WIC, if one of our ECPs can deal with the problem then I will get them called. Major trauma then we will take you to one of many levels of Trauma centre, depending on the severity of the Trauma suffered.

the ironic thing is the doctor himslef has hms though, and when asked how long do flare ups last 24-48 hours, were i have been really bad and in bed for 3 weeks iam still recoving now and still in pain , i no i need to lose weight i want me back in my sexy jeans

iam a busy bee normally i have a young dog that i adore being out with love shopping used to go out 9 till 9 just wandering around the shops , my life now is upside down a year ago i would have did that no problem the same shopping center my mam had to push my in a wheelchair around thought exustion and breathless heart racing i did try we went to pub for some food i was out of breath walking to toliet and back

6 months ago is when i have really went downhill, i had a really bad ear infection blance was off, ear very painfull and i have never been the same since, not i have been geting cold sores alot that a reaccuring, theres something just not right and my G.P agreed with me, the consultant was young aswell same condtion you would think he would have been more sympathtic

Lemony

It's time our illnesses got more respect/recognition (not sure if respect is the word but I hope you know what I mean). It is totally debilitating and it's insulting for us not to be taken seriously.

Mojisola

Lemony wrote: »

It's time our illnesses got more respect/recognition (not sure if respect is the word but I hope you know what I mean). It is totally debilitating and it's insulting for us not to be taken seriously.

I do know what you mean. When my son was first ill, I was explaining to the father of a school friend of his why he wasn't in school only to have him reply - "Oh, that's that thing where you think you're ill but you're not really".

It's still an idea that too prevalent among the general public as well as a lot of medical staff.

KxMx

And what about when ME happens in addition to another illness? I was managing my fatigue really well, and I think even recovering, until tummy problems started which i've just been told after 3 years is not IBS but IBD, likely Crohn's!

Mojisola

KxMx wrote: »

And what about when ME happens in addition to another illness? I was managing my fatigue really well, and I think even recovering, until tummy problems started which i've just been told after 3 years is not IBS but IBD, likely Crohn's!

This is very important. The range of ME symptoms is very wide and it's easy to put down every other health problem to ME.

anna_p86

Hi from a fellow sufferer. I've had M.E since I was 13. Went through the usual 'you aren't ill' from school, doctors, friends. Guess I'm one of the lucky ones in that although I still suffer I've got to a level where I have some semblance of a 'normal' life. I'm able to study, and hope to go to university next year :j

Always makes me incredibly angry the ignorance and lack of research into these conditions. Like KxMx a friend of mine was diaognosed with M.E only to find out she had crohns :eek:

KxMx

Well since there was a 4, 5 year gap between the ME starting and the tummy problems I am quite satisfied in my mind that I have two seperate illnesses, one which makes the other worse etc!

NEH

wssla00 wrote: »

NEH What is their name? I am struggling at the moment with an awful neurologist who doesn't listen to anything I say.....

Sorry for the late reply, I will try pm'ing you, been away for a while to get some rest...

prettypeach wrote: »

OBNOXIOUS (I've now read more of this thread and she seems to make a habit of this)! And very clearly pretentious. Good riddance.

She took offence to everything I said as well don't take it personally...

I had some blood tests taken by my now specialist and one was an immune system blood test, not available on the NHS and it confirms and backs up all my previous history with both ME and Fibromyalgia. It came back as abnormal, double what it should be.

The sense of relief that i have now got proof there is something wrong with me is so great I can't explain it... After 17 odd years of various battles the proof is most definately in the pudding as it were...:D

ash4becks

NEH wrote: »

Sorry for the late reply, I will try pm'ing you, been away for a while to get some rest...




She took offence to everything I said as well don't take it personally...

I had some blood tests taken by my now specialist and one was an immune system blood test, not available on the NHS and it confirms and backs up all my previous history with both ME and Fibromyalgia. It came back as abnormal, double what it should be.

The sense of relief that i have now got proof there is something wrong with me is so great I can't explain it... After 17 odd years of various battles the proof is most definately in the pudding as it were...:D

could you give me the info about this blood test please x

prettypeach_2

Yes, more info on blood test would be great.