A short sad history of ME/CFS

ash4becks

Mojisola wrote: »

It is bizarre. Did he give any explanation for his decision? What is his speciality?

This kind of odd belief is common among doctors. We've been told by different doctors - "only people who get really ill within a couple of days have real ME, everyone with a slow-onset illness has something else" and "everyone with ME has severe depression - if they don't have the depression, they don't have ME".

I went from doing a very physical job to being housebound in the space of a week. I put on a lot of weight.

I have never had any of the digestive problems that many people with ME have. That often causes weight loss. Perhaps the consultant has only seen people with those problems?

overweight was his explination :mad:

iam 24 , when i asked him about how long flare ups last he said HE DIDNT NO WHY they lasted that long !!! sorry iam just so annoyed, mam come with me he did take blood tests but have family history on dads side which i have only just found out about dads mam died before i was born had rhemy arthris from 30, he also asked about soriasis sorry spelling in family to

Mojisola

Is this the same Prof Rodney Grahame - https://www.marfan-friends-world.org.uk/phpBB3/viewtopic.php?f=20&t=1671

Is he the one who made these comments or the one you're planning to see?

ash4becks

Mojisola wrote: »

Is this the same Prof Rodney Grahame - www.marfan-friends-world.org.uk/phpBB3/viewtopic.php?f=20&t=1671

Is he the one who made these comments or the one you're planning to see?

thats who i want to see, he is the leading expert in his field and hms is spot on what he deals with, the guy i sore was dr salivarrn i think speeling as ever

Trialia

prettypeach wrote: »

Actually I have fibromyalgia and M.E. myself thanks.

Yes, I know the cog stuff is bad, fuzziness, shutdown etc. etc. I don't know what's coming from where any more!

My point is, you were oversimplifying.

sunnyone

prettypeach wrote: »

I take it from the smilie that you are joking?

Fibromyalgia is a triad of symptoms - sleep problems, joint/muscle problems and IBS - which are given the label 'fibromyalgia'.

I'm not going to even get into the whole M.E./CFS thing.

No Im not joking, if you are tested for anything and everything and no other illness can be discovered you get the fibro/ME dignosis, that dosnt mean that the symptoms dont exist just that there is no umberela term for them in the form that you are suffering so these two conditions are dignosed by elimination because they cant be diffinitivly diagnosed by blood tests (for example).

bigjl

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.

prettypeach_2

Trialia wrote: »

My point is, you were oversimplifying.

Oh whatever, I'm not going to get into an argument with you over it.
I can't be bothered with sufferers of these conditions who are unnecessarily spikey with other sufferers!
I was using an explanation, for those who don't have it, that is commonly used if you look on the internet.
Yes, it is more complex than those three components - all of which I have often in severe form, if you have it - which I do.
I also found your use of the term 'FYI' quite annoying seeing as I have the condition. When I said I have it you never bothered to apologise for your mistake, preferring to come back with another unnecessary comment.
Just don't need it!
Whatever, goodbye!

prettypeach_2

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.

Very true. I think a lot of people say they have M.E. because they are chronically tired rather than having the myriad of symptoms that M.E. produces.

Trialia

prettypeach wrote: »

I also found your use of the term 'FYI' quite annoying seeing as I have the condition. When I said I have it you never bothered to apologise for your mistake, preferring to come back with another unnecessary comment.

And your point is? I didn't make a mistake. You were oversimplifying, so my comment was entirely justified.

I'm putting you on ignore from this point onward, as I do find you irredeemably self-righteous and irritating.

prettypeach_2

Trialia wrote: »

And your point is? I didn't make a mistake. You were oversimplifying, so my comment was entirely justified.

I'm putting you on ignore from this point onward, as I do find you irredeemably self-righteous and irritating.

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