Any Chronic Fatigue Syndrome/M.E suffers

Emerald Lass

hi there,
I have CFS (sometimes called M.E or 'yuppie flu'!). I have had it as the result of a severe viral infection a few years ago.

I was wondering if anyone else out there has this complaint?

I'm heading back to F/T work soon, and I am hoping I will be able for it. I have not had a serious episode in about 5 mths, but I have changed my lifestyle dramatically, so that is probably why. I am worried that once I go back working F/T and battling traffic etc that it will flare up again.

any one have any advice or tips?

Sikamick

I have it for thirteen years and it just getting worse. I have seen all the specialist and I am still attending about four of them.

I tried all the medicines, alternative medicines and have never got any long term relief with any of them.

I have been told there is a training Hospital in London that is doing research, has anyone heard about this.

Any help would be gratefully received.

Emerald Lass if you would like to PM me I would like to talk to you about it.

Sikamick

kangaroo

There's a thread:
ME / CFS - My experience [rant]
http://www.boards.ie/vbulletin/showthread.php?t=2055032260
If you post to that, other people who might not see the current thread might get an E-mail notification and pop in.

Regarding research in teaching hospitals in London, I know of some research in London but don't know which exactly are teaching hospitals.
Dr Jonathan Kerr is based in St George's, London and he is doing a large study involving gene expression, SNPs, proteomics, viral expression, etc. The Irish ME/CFS Association had him to speak in Dublin and Waterford in 2006 - a free DVD of this talk (and a talk by Prof. Malcolm Hooper) is sent to all new members while stocks last.

Prof. Basant Puri is doing research in Hammersmith Hospital. The Irish ME/CFS Association had him to speak in Galway, Athlone, Dublin and Waterford in 2005. There's no recording of the talk available but there are articles on his research findings, summary of another talk he gave, etc available on request.

There is some research also being done by some psychiatrists and psychologists who think all patients need to do is gradually do more using either Graded Exercise Therapy (GET) or CBT based on GET. I'm not at all excited by this research.

P.S. The Irish ME/CFS Association used to be known as the Irish ME/CFS Support Group

Emerald Lass

thank you both for the replies.

kangaroo wrote:

who think all patients need to do is gradually do more

sadly I think this is the view held by most doctors too - whilst there is an element of truth to it, - sometimes I just must MAKE myself do more, otherwise the depression and feeling useless gets too much. However it does also smack of the continuing belief that it is 'yuppy flu' and you just need to stop being lazy! when I get a bad episode there is no hope of me shaking it off - I can sleep for 24 hrs and still wake up tired with every bone and muscle aching, wishing someone got the number of the bus that ran me over! cos thats how it feels - like I've been hit by a bus!

thank you for the link - I couldn't find another thread when I used the search facility.

To date I have been told that I have CFS - and that was only after visiting several doctors for several months. 27 years old and unable to stand to cook beans on toast without feeling like your legs are going to collapse is not normal, but many doctors said I was just 'run down' 'doing too much' or 'dpressed' (well I was depressed but only because I felt like a lazy old biddy - the depression came after the CFS). Treatment has been non-existent to be honest - the only thing that has worked is a complete change of lifestyle, which I was lucky to be able to do, but now that has changed andI have to go back to the rat race.

I have not been given any hint of fibromyalgia - I wasn't even aware that the two are linked. Most information Iet comes from websites in the US - very little elsewhere.

Sikamick - have PM'd you!

kangaroo

Forgot to say the contact details are:

Irish ME/CFS Association
PO Box 3075, Dubllin 2
Tel: 01-2350965
Email: info@irishmecfs.org
http://www.dublin.ie/websites/irishmecfsassociation/

Anyone who contacts get a free (22-page) information pack which includes, amongst other things, the first names and numbers of over 100 people with ME around the country who are willing to talk to others.

Unfortunately the website is very very basic but does link to some good sites. A lot of the information on the internet is just re-hashes of general overviews - I think it's best to get information from patient groups who aren't generally taken in by, for example, the hype over exercise as a treatment. A lot of people as they improve can do more but that's not the same as by doing more one can improve.

Mrspinkbunny

11 years. Actually a little better than I was the first few years but consistently sick have reduced my activity significantly and have stopped trying to "get back in shape". I think things settled when I stopped trying to fight it. I still am afraid of all the new and unual symptoms and still wake every morning with a "hangover", can`t walk up stairs and my chest bones feel like a sheet of pain and my ribs are so desperately tender its hard to sit or anything and.........I could go on. The most important thing I`ve realised lately is thaat I`m actually not crazy after years of doctors trying to convince me and me all to willing to let them was starting tyo really go round the twist. Pain is pain even if no one else can se or feel it. I am very annoyed at the doctors thou I was 16 when I got sick and so naiive was brought up to believe that doctors were gods. They gave me a pharmacy of drugs that at 16 I should not have had when I think of it I`m so angry!

_Whimsical_

Sikamick wrote: »

I have it for thirteen years and it just getting worse. I have seen all the specialist and I am still attending about four of them.

I tried all the medicines, alternative medicines and have never got any long term relief with any of them.

I have been told there is a training Hospital in London that is doing research, has anyone heard about this.

Any help would be gratefully received.

Emerald Lass if you would like to PM me I would like to talk to you about it.

Sikamick

Hi

I have CFS too so I know how you're all feeling here.

Sikamick

Are you talking about the research that is being carried out in St Georges Hospital by a team led by Jonathon Kerr? He is doing research that he is hoping will eventually lead to a test and treatment for some CFS patients.The results of his research are being replicated in studies in the US.
There is alot of research going on in various parts of the world.The best way to keep up with it is to join associations and get newsletters which often include research updates.

www.co-cure.org is a very good site for correlating research on the subject of CFS.It has message boards too which are helpful.

www.prohealth.com is also quiet good and has a newsletter you can sign up to.It occasionaly hosts web chats (like irc) with the top researchers in the field of CFS research.There was one recently with Dr Nancy Klimas who is one of those leading the field in US research into CFS.
There is an article on her here :
http://www.mecvs.net/module-ME_CVS_docs-viewpub-tid-1-pid-299.html
And there is a transcript of one of the web chat sessions she did in 2008 here :http://www.prohealth.com/library/showarticle.cfm?id=8646&t=CFIDS_FM

Reading through these gave me some hope that at last some researhers who understand the condition are looking into it.

I was just wondering have any of you been diagnosed with any form of autonomic dysfunction as part of your CFS?Does anyone have Neurocardiogenic Syncope,POTS or Neurally Mediated Hypotension?
Has anyone had a tilt table test?

Splendour

Hi guys,

I have been suffering with an illness over the past few years which I would not have put down to M.E. until I heard a few people talking about it on the Joe Duffy show on thursday.
I'm not sure if I have M.E. or not but I was almost in tears when I heard these people discuss their symptoms ie: flu like symptoms/'hungover' feeling/constant tiredness etc...

I was diagnosed a year ago with severe adrenal fatigue and through my own research, have discovered I have an underactive thyroid.I definitely think these are connected. Thyroid/adrenal problems sound familar to anyone..?

macadam

Splendour,

i was suffering from bad health for several years , Dr told me i was working too hard , went down to about 10 1/2 stone wrecked every evening had not even the energy to eat.

Changed Dr and about 5 days later was diagnosed with adrenal insufficiency(addisons disease) and haemochromatossis both of which leave you tired weak and general bad health or even death due to dehydration.

Now i am back to 14 1/2 stone and able to perform all everyday tasks and eat my way round the table.

Did any of you guys get checked out for the above Addisions is supposed to be vary rare.

Splendour

Hi macadam thank you for your response,

I had a saliva test done to check my cortisol levels and it came back 13 on a range of 20-40. This test wasn't done by my own Doc but a GP who specialises in adrenal issues. I also had an ACTH test done which shows I don't have Addisons-which is indeed very rare, but according research and the saliva test, I have secondary adrenal sufficiency. Unfortunately most GP's won't recognise this, they reckon it's either Addisons or nothing.

I've been to numerous different Docs over the years with no luck. An endrocronologist has told me my labs are fine so there's nothing wrong with me. Oh the frustration of it!!

I pressume you are on hydrocortisone for the Addisons? And can I ask you if the word 'brain fogged' means anything to you. Did you suffer from brain fog?

macadam

Never heard of brain fog , but would like to know the symtoms.

Splendour

macadam wrote: »

Never heard of brain fog , but would like to know the symtoms.

Brain fog is a feeling of detatchment from what's going on around you. It's like being in a dream whilst being awake. It's a constant 'hungover' feeling-a truely horrible state. The mind also gets very forgetful and confused, and comprehension of the simplest of things is very difficult.

kangaroo

Splendour wrote: »

Hi guys,

I have been suffering with an illness over the past few years which I would not have put down to M.E. until I heard a few people talking about it on the Joe Duffy show on thursday.
I'm not sure if I have M.E. or not but I was almost in tears when I heard these people discuss their symptoms ie: flu like symptoms/'hungover' feeling/constant tiredness etc...

I was diagnosed a year ago with severe adrenal fatigue and through my own research, have discovered I have an underactive thyroid.I definitely think these are connected. Thyroid/adrenal problems sound familar to anyone..?

I read a figure that 40% of people with ME have thyroid problems. Although my impression would be that not nearly as many as 40% of people with ME have been diagnosed with thyroid problems.

Thyroid problems and adrenal problems often go together, for people with or without ME.

There was research done around a decade ago on some people with ME (well CFS) involving some researchers in the UK (including some Irish researchers) which found adrenal glands half the size of normal (depressed people tend to have adrenal glands that are larger than normal). It's not clear why this might be e.g. have the adrenals "worn out" from too much stimulation/strain or not enough stimulation.

I have a book on "adrenal fatigue" and a lot of the tips from it would help people with ME.

Emerald Lass

I have had blood tests for thyroid function but they have come back ok - is this enough to conclude that my thyroid is ok, or should i ask the doc to do further tests?

the thing is, my mum had rheumatoid arthritis, which is an autoimmune disease, which many researchers think ME/CFS also is. In addition my mum had serious thyroid problems, and now my dad has also been told he has mild thyroid problems.

should I push for more tests, or is a blood test fairly comprehensive to diagnose thyroid probs?

Splendour

Emerald Lass wrote: »

I have had blood tests for thyroid function but they have come back ok - is this enough to conclude that my thyroid is ok, or should i ask the doc to do further tests?

the thing is, my mum had rheumatoid arthritis, which is an autoimmune disease, which many researchers think ME/CFS also is. In addition my mum had serious thyroid problems, and now my dad has also been told he has mild thyroid problems.

should I push for more tests, or is a blood test fairly comprehensive to diagnose thyroid probs?

Was it your TSH that was checked Emerald? This in itself means absolutely nothing with regards to the thyroid itself. Your TSH could be fine and yet your Free T3 and T4 could be shot. TBH, even if you've had your Frees tested and they come back ok it doesn't necessarily mean you don't have a thyroid problem.
Docs nowadays are totally hung up on labs-if they can't see it then it doesn't exist. I could barely walk at one stage and was told by an Endo 'your labs are fine so there's nothing wrong with you...'

Years ago before labs Docs had to go by symptoms and what the patient was telling them. Now all they do (in my experience), is send a patient off for bloods, offer antibiotics or offer anti depressants. How many of us get a really good checking over at a Doctor's appointment. They don't even check temperature anymore!

One easy way to check if your thyroid is working is to take your temperature before you get out of bed (basal temp). If your temp is steady but low then you're possibly hypothyroid. If you're temp is erratic then your adrenals are struggling.

Chances are if your Mum had rheumatoid arthritis and a thyroid problem then you too are susceptible to auto immune dieseases.

Splendour

kangaroo wrote: »

I read a figure that 40% of people with ME have thyroid problems. Although my impression would be that not nearly as many as 40% of people with ME have been diagnosed with thyroid problems.

Thyroid problems and adrenal problems often go together, for people with or without ME.

There was research done around a decade ago on some people with ME (well CFS) involving some researchers in the UK (including some Irish researchers) which found adrenal glands half the size of normal (depressed people tend to have adrenal glands that are larger than normal). It's not clear why this might be e.g. have the adrenals "worn out" from too much stimulation/strain or not enough stimulation.

I have a book on "adrenal fatigue" and a lot of the tips from it would help people with ME.

I would say that figure of 40% is much much higher than that.


M.E/Thyroid/Adrenals/and some depression as far as I'm concerened, all come under the same umberella. It's a bit like the chicken and the egg theory-which came first? If someone is suffering from M.E chances are it stems from a thyroid/adrenal or some other auto immune disease. If one has thyroid/adrenal problems then they no doubt will have some form of M.E; all of which can lead to depression-and is it any wonder!

Haven't heard about the adrenals shrinking in actual size but I believe they definitely shrink in their ability to do their job and indeed become worn out due to too much stimulation and stress. Stress as we all know will manifest itselt physically in the body be it in the form of ulcers, cancer, adrenal breakdown-whatever...

Is that Dr. Wilson's book you mention? 'Adrenal Fatigue the 21st Centuary Syndrome'.

kangaroo

Splendour wrote: »

I would say that figure of 40% is much much higher than that.


M.E/Thyroid/Adrenals/and some depression as far as I'm concerened, all come under the same umberella. It's a bit like the chicken and the egg theory-which came first? If someone is suffering from M.E chances are it stems from a thyroid/adrenal or some other auto immune disease. If one has thyroid/adrenal problems then they no doubt will have some form of M.E; all of which can lead to depression-and is it any wonder!

Haven't heard about the adrenals shrinking in actual size but I believe they definitely shrink in their ability to do their job and indeed become worn out due to too much stimulation and stress. Stress as we all know will manifest itselt physically in the body be it in the form of ulcers, cancer, adrenal breakdown-whatever...

Is that Dr. Wilson's book you mention? 'Adrenal Fatigue the 21st Centuary Syndrome'.

Starting at the bottom: yes, that's the book I was referring to.

I'm not convinced the percentage with thyroid problems is necessarily that much higher than 40%.
And my impression is that the ME expert or two that mentions this figure is referring to long-term cases - the thyroid problems develop in time over years with the illness.

In a high percentage of cases (maybe 80%+), ME starts suddenly after an infection. There have been quite a few documented cases of outbreaks and the like. Children and people in their 20s often get it including athletes and sportspeople who were previously performing to a high standard so I'm not convinced that most or everyone had pre-existing thyroid problems.

It may well be the case that people have been misdiagnosed as having ME when actually they "simply" have hypothyroidism and adrenal problems.

Emerald Lass

Hi all,

after a bout of interrupted sleep which I mentioned elsewhere, and due to wedding and some other minor stresses (no more than I would have taken in my stride 4 years ago, but now knocks me for 6), anyway after all that, unsurprisingly I've had a CFS crash. got a bad bout of flu, and then contracted anterior uvetitis of the eye. apparently its quite common in people suffering from auto-immune diseases. in fact the first thing the doctor asked me was if i had any auto-immune problems or if anyone in my family had - yes to both. I have had quite a severe bout of this, and am on steriods now for almost two weeks, pain has reduced but my iris is still HUGE and some minor pain - but thankfully nothing like before. the doc says that most cases are relatively easy to treat, usually treat with cortisone drops and rest and it clears up, but my case is quite severe and I needed oral steriods, and types of steroid drops, every hour on the hour! Add in no bright light (even daylight!) reading, computer, TV and I am bored silly. There seems to be an improvement now, so I have been given a repreave of 1 hour on the computer!

Has anyone else out there with CFS/ME similar had this uvetitis? was it recurring? Doc says some people get it as a once off, but if it is caused by auto-immune failure then it is highly likely to flare up again at some stage in the future, and is most often triggered by stress and/or a flare up of the CFS. Anyone have experience out there?

So after all this I have been looking up my diagnosis on the internet, and noticed some other links to (HLA)-B27 antigen process. I am intregued by this. i haven't read up enough on it (due to gammy eye) but am curious to know if anyone knows if there is a link with this and CFS/ME or similar?

Also, thanks regarding the info on adrenal/thyroid testing. Am back in Dublin in Feb and am going to push for a more thorough investigation rather than a simple blod test.

LegacyUser

My daughter has Addisson's disease also... Symptoms similar to ME ... Would be great if she could meet someone in the area who has similar as it's a very lonely road.