ME / CFS - My experience [rant]

condra

Hi.

Rather than rant in the introduction section, I thought it better that I rant in a new thread.

Im a 27 year old man and have had M.E. for 5 years.

Im not gonna beat around the bush, it has devestated my life in many ways.
I have not been able to work full time since becomming ill.
Extended periods of stress or exertion have proven time and time again to worsen my condition and bring on "crashes", or relapse of the worse set of symptoms.

It started in December 2001 with a very sudden attack of feeling as if I had been poisoned, and was about to die, aswell as severe diarrhoea.
My body basically went into shock, completely spontaniously.
The first couple of weeks were like this, constantly. The doctor [my x GP] said I had the flu.
I had been working hard but there were no significant emotional problems in my life during that period.

It was 9 months before I had the energy to leave the house, and by that stage my diarrhoea had gone from about 10 movements a day to about 4 or 5.
I had lost about 2 stone.

I was diagnosed as having IBS, but of course IBS is very often a symptom of M.E.

Ive had many tests done in various hospitals and clinics.

An MRI scan about 2 years ago didnt show anything up.
According to some reports Ive read, many M.E. patients show white specs in the frontal lobe, perhaps similar to those found in M.S.
Blood tests always seem to show liver irregularities.
I was called back for a second Lyme disease test after it was "indicated", but the second test was neg. I still find this curious.
I tested negetive for EBV, hepetitis, and Im sure many other diseases.

The closest Ive gotten to diagnosis of M.E. is "Post Viral Fatigue" from James hosp.

2 years ago, I had a severe acute attack, which often happens at the beginning of a relapse/bad patch.
I was so ill I went to The Mater in an ambulance at 4am. This is something I would not do unless I was extremely ill.
I knew it was the M.E symptoms flaring up but was worried that I might have something like liver failure, Cardiac failure or a stroke.
My heart was pounding, even though I was calm. I felt like I was running a marathon, just sitting still.
My right side was extremely uncomfortable. Many M.E patients have problems with their liver, some with the gaulbladder.
I was freezing cold but sweating. Hot milk offered a little relief.
Also, and uniquely to this one time, I had a pain in the area of my rectum/intestine.
Ill never forget one doctor describing me to another doctor in the lobby, "Thats Declan Murphy, hes feeling cold and anxious". What an insult.

When the blood tests appearantly didnt show anything irregular, I was seen by the psychiatrist, who concluded that I was having a panic attack, and he prescribed antidepressants. This was very disappointing. I ended up home again, drinking hot milk until I fell asleep. I was very ill for a couple of weeks that time.
The anti-depressants prescription, I threw in the bin.
I do hope that the psychiatrist in The Mater reads up on recent research into M.E before writing prescriptions for anti-depressants on such a whim, after a 5 minute chat.

You might wonder why I refer to my condition as M.E despite not getting an "official" diagnosis.
Firstly, I have been given several explanations for my illness from different medical "experts", namely:
Flu, or some virus.
Post Viral Fatigue
Irritable Bowel Syndrome
Depression [based on a 5 minute chat in a cubicle in casualty]
and of course the quack who said "youre lucky you didnt get menengitas"

Medical science has different camps, with different opinions on what defines Chronic Fatigue Syndrome, M.E. and Post Viral Fatigue.
As I write this, there are a few more names being made for the condition.
Most doctors in Ireland are unlikely to diagnose M.E., one reason being the controversy surrounding the illness in the medical world.
What is generally agreed is that Chronic Fatigue Syndrome is an umbrella illness which can include many completely different conditions, from fibromyalgia to M.E to depression.
more info here:
http://www.ahummingbirdsguide.com/whatisme.htm
I have most if not all of the classic M.E symptoms as described here:
http://www.ahummingbirdsguide.com/mesymptomsummary.htm

The world health organisation classifies M.E as a disease of the nervous system, yet still there are people [INCLUDING CHILDREN!] who are showing classic M.E symptoms being sent to psychiatrists, most of whom prescribe anti-depressants and cognative behavioral therapy.
This is very dangerous and worrying, considering increased exertion has shown to worsen symptoms in M.E patients, some studys suggesting it may even prolong the duration of illness.
There has been recorded cases of sudden death in M.E. patients over exerting themselves, usually resulting from heart attack of organ failure.

In 5 years it has been up and down, Ive had good and bad patches.

These are my symptoms:
ongoing:
Lack of energy and stamina.
Neuro/cognative probs like very poor short term memory, poor spacial awareness, occassional speech problems both in forming sentences and processing things I read or hear.
Inability to multitask.
Extreme fatigue after exertion [including long periods of concentration], usually the next day.
A surreal feeling that nothing is real, poor sence of time.
Sleep disturbance.

during bad patches/flare ups:
All above magnified, aswell as:
Extreme nausea and vertigo.
Diarrhoea
Shakes, sweating, inability to keep warm.
Pins and Needles in my tongue, on one side. Pins and needles in hands and feet, poor circulation.
Occassionally, throbbing pain in my 2 outside fingers.

This winter Ive been pretty ill and recently developed Shingles, which Im looking after as best I can.
The shingles makes me wonder about my immune system, which seems to be completely messed up.

A majority of M.E. sufferers return to normal or near normal health after around 5 years, so Im keeping my fingers crossed.

There is no cure for M.E and opinions on what treatment works best is conflicting.

This is what works best for me:
When Im doing ok:
Pacing myself. - Resting from physical and mental exertion when Im under the weather, and not going overboard when I have close to normal periods of health [eventually I usually end up overdoing things and relapsing]

During a bad patch:
Keeping warm
drinking lots of hot milk
heating my lower back with an electric blanket. [This one is strange I know. Im wondering if it might have something to do with the kidneys. ive read about adrenaline problems with M.E patients. Ive also read about patients having smaller adrenal glands.]

Im also experimenting with increased consumption of Magnesium, vitimin C, Zinc and potasium.

If I come accross as having an issue with the medical world, Im sorry.
I dont have a chip on my shoulder, but I find it discouraging to see "experts" with so many conflicting views.
People who are depressed or fatigued for other reasons also damage the credibility of M.E. by claiming to have CFS or M.E.

If you think Im on a mission, you not far off.
M.E is still one of the most misunderstood conditions worldwide, this includes the general public aswell as medical professionals.
More and more research is showing overwhelming evidence of an organic nature to the illness.
The psychiatric theory has been convincingly falsified time and time again.

While a cure for M.E, or even satisfactory treatment, would be a dream come true for patients worldwide, at the moment we are still struggling with the stigma surrounding the illness.
What we need as soon as possible, at the very least, is a clear definition of the illness, with insights into its organic nature.
This must be recognised by GPs around the world.
It must also be completely seperated from chronic fatigue conditions of psychiatric nature, which may show some similarities of symptoms, but have very different indications for treatment.


If anyone would like to discuss M.E./CFS with me, feel free to PM me.

AnnaStezia

Don't really know that much about it. However, I am aware that it is a pretty frustrating condition and you have my sympathies.

If you are not familiar with it already you might be interested in a chat group. I think it might be associated with the irish ME/CFS Support Group. It might be a good source of support and information.

The URL is http://health.groups.yahoo.com/group/mechat-ireland/

CathyMoran

Hi,

welcome to this forum, I hope that it will be of some use to you. I had a friend who had it several years ago so I know how devastating it is.

condra

hi guys.

thanks for the reply anna. Ive been posting on that site occassionally since becomming ill. its a good site, nice crowd there. Shame yahoo group pages dont display as well as these on boards.

cathy, thanks for the reply. yeah its a pain in the ass but hopefully ill come out the other side some time!

FranknFurter

Welcome.
I knew a woman, she was an ex-teacher, who developed ME in her 40's and I must say, it was one of the worst disabilities I have ever seen.
Not so much because of the symptoms (though they aint good fun themselves) but more by the fact that not one feckin doctor in the country would recognise the condition, she ended up moving back the the UK (Where she had spent her life as a teacher before retiring to Dublin), to get proper treatment.

I do know her condition improved and improved, so there is hope.

B

tbh

hey welcome womoma, and great post. if its not too personal a question, are you working? if so, how do you find it? I'm just curious.

condra

Hi tbh and thanks for reading the post.

No Im not working. In the five years Ive been ill Ive not been able to work. I went back to work about 3 years ago and after about 2 weeks I relapsed pretty badly.
My goal has always been to recover and help myself to recover, in order to get back to work and lead as much of a normal life as possible.

Im on disability, which was quite a struggle to get granted.

When people see me when Im in really good shape, which is not too often, they wonder why I dont work. I dont feel guilty for not working as I know how important it is for people with M.E. to pace themselves until they recover fully, and quite frankly, most of the time I wouldnt have the energy to do much in the way of physical activity, or anything involving concentration.

Apart from the times when Im too ill to do anything interesting, I occupy myself learning about graphic and sound design.
I play snooker and have a couple of pints too during good patches.

wexhun

Hi womama,

Welcome, I found your post very interesting as I went through the very same process with a very close friend,to cut a long story short she had all the same symptoms as you and was given all the same diagnoses as you too. She was told she was depressed or had flu, IBS or back problems, eventually a consultant suggested that she may have ME and thats where she was left on her own to deal with it. I have to say though once she knew what she was dealing with she works with it rather than trying to fight it. She uses alot of alternative medicines and finds a product called aerobic oxygen a huge benefit. She is doing well at the moment but does have relapses where she will just wither. She had been on disability, was called for an interview and to my disgust was cut off, appealed it and was turned down again. The girl can't get out of bed on her bad days how is she supposed to hold down a full time job right now! I think they said to her so other than ME theres nothing else holding you back from working! Anyway don't get me started! Just wanted to say hello and keep up the good work.

condra

Hey wexhun.

Thanks for reading my rant!

I feel for your friend. My first application for disability was rejected but I was successful with my appeal.
After some time, I was called for an interview and was lucky enough to meet quite an open minded and sympathetic doctor in there.

If someone with M.E is being forced to try to work because they are not granted disability, they risk making their symptoms worse, and possibly prolonging their illness.

I would urge anyone in your friends position to seek support from the Irish ME/CFS Support Group, and even local councellors in further appeals.

For someone with M.E or similar conditions where they might be ill for weeks at a time between periods of being in reasonable health, the disability scheme here is not very dynamic.
If for example, I was to feel up to returning to work in January, and did so, but was to fall ill again in March, I would have to go through the whole application process again.

curehead

had a lot of those symptoms myself , turned out to be CANDIDA a yeast overgrowth in the gut , it was awful and sometimes still is'it was compared to m.e in some books had to change diet drastically no yeast or sugar this makes alcohol in the gut , no processed foods , mostly organic , change deodorant to one without all the chemicals same with shower gels and washing powders soaps etc etc etc to had to take barley grass and asodofilus to get the gut back to working order some people had bad diahorria others constipation anyway i read that all these things work for me sufferers as well

condra

No offence curehead but cutting down on things like yeast, sugar, processed foods and chemicals, while eating more organic food, and taking some sort of probiotic will appearantly improve most peoples health, wether they are ill or not.

Its not that I dont agree that lifestyle considerations are important to anyone with any illness, but Im worried by the continuing trend towards blaming things like diet and lifestyle for illness such as M.E [and others] in popular media.

In the case of M.E, I feel it is particulary important that medical science continue to research it with great gusto, ultimatly with a positive outcome in the form of orthodox treatment becomming available.

Often I feel that conditions like M.E., candida, coeliac disease, IBS, psoriasis etc are targetted by the lucrative "alternative medicine" industry, perhaps to the detriment of those who suffer from these conditions.

Im not having a go at you by the way.
Its just that if I had a penny for every time someone told me I would be better if I stopped drinking milk, or cut down on wheat, or stopped using deodorant, or ate more dark chocolate, or did yoga, or ate more liquorice, I would be a millionaire.
The fact of the matter is that very little is known about how best to treat or cure M.E., and most of the reccomendations in the media are either anecdotal or completely unfounded, and expensive pseudo-scientific treatments touted by the "alternative medicine" industry.

I did try cutting out milk and wheat, I took acidophilous, and made lots of other adjustments, and it did nothing for me but earn me a second appointment with a very expensive "practitioner" in Clontarf.

curehead

well m.e seems do be a modern illness often equated to the use of mobile phones, computers ,central heating , processed foods and chemicals etc etc where was m.e before all these modern day things. i used to attend weekly meetings where candida and m.e sufferers used to get together and discuss their "illnesses" and most of the m.e sufferers found great benefits from cutting out all of those things . its your health at the end of the day and ultimately your choice

condra

where was m.e before all these modern day things

Curehead M.E has been traced back to the early 20th Century, and perhaps further back.

It is not a "modern illness".

It is NOT associated with:
mobile phones
living near power masts or telephone wires
owning a microwave
central heating
radiation
car exhaust fumes
liberals, gays, computers, the internet, aeroplances etc..

http://www.ahummingbirdsguide.com/whatisme.htm

I suggest you do your research before making sweeping generalisations because you could easily offend somebody.

It is the kind of ignorance about M.E. that you are showing, which really pisses off people like me, people who are suffering from a condition, the seriousness of which is being belittled because of misinformed people making ridiculous claims about what causes, treats or cures M.E.

M.E is a serious neurological condition with an organic nature.
There is no cure and NO treatment which has proven to work accross the board.

These "M.E sufferers" who went to your "meetings", could easily be people with other "chronic fatigue" conditions, or those who self diagnosed M.E, and like I pointed out already, eating a healthy diet etc is beneficial to most peoples health.

The_Conductor

womoma wrote:

No offence curehead but cutting down on things like yeast, sugar, processed foods and chemicals, while eating more organic food, and taking some sort of probiotic will appearantly improve most peoples health, wether they are ill or not.

Its not that I dont agree that lifestyle considerations are important to anyone with any illness, but Im worried by the continuing trend towards blaming things like diet and lifestyle for illness such as M.E [and others] in popular media.

In the case of M.E, I feel it is particulary important that medical science continue to research it with great gusto, ultimatly with a positive outcome in the form of orthodox treatment becomming available.

Often I feel that conditions like M.E., candida, coeliac disease, IBS, psoriasis etc are targetted by the lucrative "alternative medicine" industry, perhaps to the detriment of those who suffer from these conditions.

Im not having a go at you by the way.
Its just that if I had a penny for every time someone told me I would be better if I stopped drinking milk, or cut down on wheat, or stopped using deodorant, or ate more dark chocolate, or did yoga, or ate more liquorice, I would be a millionaire.
The fact of the matter is that very little is known about how best to treat or cure M.E., and most of the reccomendations in the media are either anecdotal or completely unfounded, and expensive pseudo-scientific treatments touted by the "alternative medicine" industry.

I did try cutting out milk and wheat, I took acidophilous, and made lots of other adjustments, and it did nothing for me but earn me a second appointment with a very expensive "practitioner" in Clontarf.

I was very similar to Curehead- having all of your sympthoms, along with quite a few others. It took 10 years before I was eventually diagnosed with Crohn's Disease- at that stage I was 6 stone in weight and on a drip in A&E. The most demeaning thing of all was being told it was all psychosomathic. Surgery did eventually alleviate the sympthoms, but as it recurs, I've had surgery 4 times so far (and counting).

I do agree with what you say about the alternative health industry having a field day with a lot of illnesses, particularly those that are not properly understood by conventional medical practicioners. I also agree with what you say about a reasonable diet and a careful lifestyle benefitting everyone, not necessarily just those who are ill.

ME is not a new illness, it did however shoot to prominence particularly in the 1980's/1990's when it was branded "Yuppie Flu" in the media- and featured on the Late Show and a number of other programmes as such. All that appears to be obvious from research is that it appears to viral in nature (possibly HHV-6) and that some people appear to be susceptible to it- while it can lie latent in others (Crohn's Disease is similar in this regard- where the TB bacterium is the current flavour of the month- its not unusual for it to be present in most people- but some people appear to take massive immuno-responses against it, while others take none).

ME is similar to a lot of chronic conditions- in that they have suddenly become available to the public via an often hysterical media- where people often suffered from their various maladies in silence previously. Looking back in history Florence Nightingale is considered to have had chronic malaria, complicated with bi-polar disorder, which made her into a virtual recluse in her latter days (she also suffered terribly as she was prescribed abnormally large amounts of quinine by a quack, which is thought to have eventually killed her- as quinine can cause massive pancreatic insulin release and should be used
cautiously in hypoglycaemic persons......- a classic case of one malady being mistreated and causing an entirely different one........)

While I can empathise with the difficulties you have encountered- I think the most productive approach is to try to educate, both ourselves and the medical profession, by whatever manner or means we possibly can- rather than taking the back seat. If this means volunteering for medical examinations while in hospital, or visiting newly diagnosed people in hospital and answering any questions they may have- so be it.

One final point- one of the rules in this forum, as elsewhere, is that it is fine to rebute or attack someone's post- but not the person who made the post.
Please keep this in mind in future posts.....

tallaght01

"myalgic encephalomyelitis" refers to a very specific pathology. To my mind, the name suggests that there is inflammation of the brain and myelin nerve sheaths. I'm not aware that there is hard evidence to support this.

Anyway, I only posted on here so as to direct you guys to a website I really like. I don't read any blogs except this one. It's a medical blog written by a fantastic GP in the UK called Dr. John Crippen. He's intelligent, caring, open minded and witty. Even being a doc myself, I never get bored of his tales from the consulting room.

He has written an entry in his blog about ME/CFS. I personally agree with most of what he says. Thta is beside the point, I suppose. However, it has inspired a rageing debate that I thought some of you may be interested in reading. It's an old blog entry, so it's probably not very active at the minute, but it's certainly worth a read, as is his daily blog (although it's very much based around the UK health service, where he works).

The link is

http://nhsblogdoc.blogspot.com/2006/02/le-malade-imaginaire-and-invalidity.html


Kind regards

condra

Tallaght01 thanks for posting.

Personally, I think its a good thing that there are "experts" who say they dont believe in M.E.
It perhaps pushes M.E researchers to try harder to find a definitive diagnostic test.
Of course there are also "experts" who do believe in M.E.

I worry that people like things black or white, and dont have room for grey areas. I hope that nobody would form a belief, based on the word of any one medical expert.

I dont believe everyone who claims to have M.E. has the same condition as myself.
There are most certainly people claiming to have M.E. who are depressed, or perhaps have more serious conditions such as M.S, which have yet to be diagnosed.
But that doesnt take away from the fact that I, along with many other people, suffer from a very distinctive set of dibilitating physical symptoms.

While I agree that the term "myalgic encephalomyelitis" is not suitable, I think people like Simon Wessley are irresponsible for tarring so many people with the same brush.
The reason people still call it M.E. is simply to identify the condition. Attempts to change the name of the condition have usually failed.

It is only right that a G.P. would look on any person complaining of chronic fatigue with a degree of skepticism, but to put it down to a psychiatric condition immediatly would be very irresponsible.
I also think that prescribing anti-depressants to anyone with a chronic fatigue condition could be dangerous.

The M.E. debate reminds me of the religion debate.
People state their opinions as fact, when really not much has ever been proved, or disproved, for example..

I signed Joan off work for three months with a bogus diagnosis of an imaginary condition.

Any other doctor could have quite a different opinion/delusion.
I desperatly hope that some day, research comes up with a diagnostic test aswell as more insights which prove Simon Wessley etc wrong.
In the meantime, I hope that you keep an open mind as much as possible, for the sake of your patients.

xyzjmt

Hi Womoma,

I just wondered if you had seen the recent discussion on the Yahoo group mechat-ireland about the link between Lyme disease and M.E. I thought you might be interested as you mention Lyme tests in your original post. There is also a lot of information on the topic available on the Yahoo group EuroLyme. ( e.g message 43197 I think) I have long term severe M.E, and I can identify with a lot of the things in your posts. I had some tests last year with one of the English doctors who specialises in treating people with M.E./chronic Lyme, and he found an infection similar to Lyme and also mitochondrial dysfunction causing extreme debility. He has similar findings with most of his M.E. patients. I have started some treatments but it is too soon to say what the effect will be. A lot of people seem to have positive experiences with the treatments, but I have heard of a few people having big setbacks too so it is important to be careful. Like M.E. it is a controversial topic in medicine and not familiar to or accepted by most doctors. Just thought I would post in case you hadn't come across this theory, but probably you have as you seem to know a lot about M.E. from your posts. I have had various levels of illness and an M.E. diagnosis for over 10 years ( but with a partial remission for 3 years, then a severe deterioration whihc could have been avoided with proper support) and it was only last year I heard of this theory, so it doesn't seem that well-known.

Best wishes for your future,
Josephine

condra

Hi Josephine.

Thanks for reading the post and replying.

I havent been on the me-chat ireland forum in quiet some time, mainly because at one stage it seemed there was "a new hope" every month or two.
I am aware that people are really starting to look carefully into the Lyme/"Lyme related" thing and many are seeking Lyme Literate Medical Doctors. ["LLMD"s]

I would be very interested to know more about the doctor you saw. Perhaps you could reply here or send me a PM.

I know very little about test procedures, but presume nothing is "black and white" and that there may be various methods to test and diagnose something like Lyme.
I always found it curious that I was called back for a second Lyme test. The person who rang me regarding it said that Lyme had been "indicated" in my initial blood test.
I was somewhat disappointed when the second test was negative.
At the time I thought Lyme disease was only common in USA, but only recently learned that it is not particulary uncommon to be picked up in some of the countries I traveled to in Eastern Europe, particulary Czech Rep.

I would be interested in getting more tests done with this in mind.

The other reason I am interested in this, is because on some occassions when I have had to take antibiotics over the last 5 years [like when I took meds for a bacterial skin rash], I noticed a slight improvement in my health whilst taking the meds and for a small while after.
As far as I am aware, antibiotics are still the main treatment for Lyme sufferers.

It would be fantastic if some ground was made on these lines of research. Even that NHS blogging doctor, who Tallaght01 pointed out, admits somewhere in his blog, that he was ahshamedly unaware of the recently suggested links between M.E. and Lyme.

Thanks again for posting and I hope things go well for you.

Dec

xyzjmt

Hi Womoma,

I have sent you a pm.

Best wishes,

Josephine

greendragon

Hi there........ Doctors in ireland have only become really aware of Lyme here in ireland in the past year i would say..... I went to my gp nearly 2 and a half years ago with many strange symptoms, including depression, exhaustion and odd pins and needles in my hands and feet. I was referred to the consultant GP at the hospital. He took lots of blood and referred me on to the neurologist for nerve conduction test... they discovered through the blood test that I was suffering from underactive thyroid and put on medication for that, but they decided that the neurological symptoms were a mystery.....

In fact, pins annd needles in hands and feet are classic symptoms of 2nd stage of Lyme disease.

Unfortunately the Doctors headed off seeking a red herring, because they found nodules on my lungs and though it was cancer....
And throughout next nearly 18 months of tests and awfulness of thinking I might have terminal cancer all my neurological symptoms got worse....

Finally I went back to doctors 2 years after my initial visit..saying I definately needed more thyroid medication cos the exhaustion and depression and muddy thinking back badly and getting worse... plus all these other pains everywhere. Blood test showed thyroid fine! So I was sent back to a different consultant... who listened to symptoms, said "Oh if that is not Chronic Lyme disease then I don't know what it is..." Then he said.... "So we will send off blood for tests, but if it comes back negative it does not mean you don't have the disease! There are so many different variations that don't show up plus if you have had it a long time it might not show!"

So the tests still aren't back...
Meanwhile I do not feel fit for work but doubt, in this country, that if i apply for diability with something obscure like Lyme they'll just laugh at me... especially if the blood tests are negative...

So just cos the blood tests negative does not mean you don't have it!
Also i have a friend in Dublin who was sick for years with me and she saw an immunologist lady who was brilliant, but did include lots dietary changes! Can pm her no if you like?

Ireland's medical profession are really not a very enlightened bunch I must say!
Wishing you luck.......

greendragon

2.05 Can I have Lyme disease if my blood tests are negative?

As explained in Forschner-Vanderhoof, K., Everything You Need to Know About
Lyme Disease, p.67: It is possible to have Lyme disease even if your
laboratory tests are negative. This is because a negative test can simply
mean that the laboratory did not find any measurable Lyme disease
antibodies in your sample(s). Other reasons include:

1) Your blood sample was taken too soon after infection for your
immune system to have mounted a detectable response. An antibody
response is rarely measurable when the EM rash first appears.
2) You are producing detectable levels of antibody, but the laboratory
made a mistake.
3) You are producing antibodies to a strain of Borrelia burgdorferi
(Bb) that the laboratory cannot detect.
4) You are producing antibodies, but they are bound to the Lyme
disease bacterium (creating what is called a complexed antibody)
without enough that are free-floating and readily detectable.
5) Your immune system may be compromised and is not responding
properly to the bacterial invasion.
6) By taking antibiotics early in the disease (or for another recent
or concurrent illness), you have aborted your immune system response.
(This is not necessarily bad because the immune response does not
always eradicate Bb anyway.)
7) The bacterium has changed its make-up, and your immune system has
not noticed it.
8) The bacterium is cloaking itself within an immune system cell,
limiting your body's capacity to identify and combat it.

dlofnep

I've spent the last 2 months in constant agony. A little bit of background.

For the past 9 months, I've been getting recovering flu symptoms. It only happened for a few days, once a month and would go away. I figured my immune system was poor, so I upped my vitimin C and zinc intake.

About a week or two before christmas, I came down with flu-like symptoms again - I didn't have a cold, or a sore throat or a cough.. Just aches and pains, mostly in my legs and consistently being tired.

I went to my doctor 3 times and he had no idea what was wrong. All the blood tests he took came back as normal. I went out to hospital the other day and spent 5 hours there, mostly just waiting on a multitude of blood tests - all of which he said were normal. He tested for glandular fever but said it was not present from what he could see.

He suggested that I give it another 2 weeks to see if it subsides and if not, to go back to my doctor. He's sending one more blood test result back to him, but didn't have much faith in it showing anything.

He suggested it could very well could be Chronic Fatigue Syndrome. After already previously investigating it, by googling my symptoms it wasn't reassuring. I'd much rather it have been gladular fever.

I'm praying it's not CFS as the pain I go through every day for the last 2 months is absolutely terrible. The random fevers that come and go every few days is making it impossible for me to live. I have to swing a job and college, I've no time to rest and can't afford to take time off of work due to bills.

I can't train my beloved judo anymore, which is the only hobby I had to keep me going through the week. I can't maintain a social life because I'm just not fit enough to go out with my friends. I can't barely cope with laying in bed, let alone anything else.

I can only imagine your frusteration. 2 months of this is already sending me into mood swings. I never minded having the flu for a week, but after that it becomes tedious.

Another option is a mitocondrial disorder to which I've lost two of my cousins too in the past 2 years. If this is the case, it's even worse.

dlofnep

3 and a half months on, still in pain

No diagnosis yet, have an ultra sound in may. That will be 5 months without diagnosis. It bites.

condra

Dlofnep stick with it my friend.
I hope things work out for you. I know it sounds cliche, but dont loose hope, there are so many many reasons why people can become ill, and very often there is treatment or a cure.

The only other advice I can give you is to not allow yourself be pigeon-holed by anyone, medical "experts" or otherwise, without allowing yourself full and thorough investigation.

kangaroo

dlofnep wrote:

I've spent the last 2 months in constant agony. A little bit of background.

For the past 9 months, I've been getting recovering flu symptoms. It only happened for a few days, once a month and would go away. I figured my immune system was poor, so I upped my vitimin C and zinc intake.

About a week or two before christmas, I came down with flu-like symptoms again - I didn't have a cold, or a sore throat or a cough.. Just aches and pains, mostly in my legs and consistently being tired.

I went to my doctor 3 times and he had no idea what was wrong. All the blood tests he took came back as normal. I went out to hospital the other day and spent 5 hours there, mostly just waiting on a multitude of blood tests - all of which he said were normal. He tested for glandular fever but said it was not present from what he could see.

He suggested that I give it another 2 weeks to see if it subsides and if not, to go back to my doctor. He's sending one more blood test result back to him, but didn't have much faith in it showing anything.

He suggested it could very well could be Chronic Fatigue Syndrome. After already previously investigating it, by googling my symptoms it wasn't reassuring. I'd much rather it have been gladular fever.

I'm praying it's not CFS as the pain I go through every day for the last 2 months is absolutely terrible. The random fevers that come and go every few days is making it impossible for me to live. I have to swing a job and college, I've no time to rest and can't afford to take time off of work due to bills.

I can't train my beloved judo anymore, which is the only hobby I had to keep me going through the week. I can't maintain a social life because I'm just not fit enough to go out with my friends. I can't barely cope with laying in bed, let alone anything else.

I can only imagine your frusteration. 2 months of this is already sending me into mood swings. I never minded having the flu for a week, but after that it becomes tedious.

Another option is a mitocondrial disorder to which I've lost two of my cousins too in the past 2 years. If this is the case, it's even worse.

My advice is assume it's ME or CFS and treat it like that e.g. work out a level of activity that you can sustain reasonably regularly without provoking symptoms (little bit of tiredness is ok of course). You may be best to decide at this stage just to do half this year's exams and do the other half at the repeats or next year and/or give up the job.

With this illness people can always get worse.
Which could mean for example if you don't look after yourself you might never be able to finish college at all. Or become too ill for work (lots of people with this illness can't work).
So some tough decisions needed I think.
Doctors may not tell you this but somebody needs to.

kangaroo

dlofnep wrote:

I'm praying it's not CFS as the pain I go through every day for the last 2 months is absolutely terrible. The random fevers that come and go every few days is making it impossible for me to live. I have to swing a job and college, I've no time to rest and can't afford to take time off of work due to bills.

If you have CFS or ME, if you take care of yourself, living with lots of rest periods at a level of activity that you can maintain, the pain levels and random fevers may reduce.

If you don't, the level of activity required to cause such symptoms can lower.
And that's why people with CFS or ME end up more disabled.

No harm looking for other diagnoses of course.
However you need to take it seriously. Doctors tend not to and then wonder how people with the illness end up disabled.

okami

Hi

I'm new to this forum and desperately need help. I have been suffering from chronic fatigue for a couple of years now (coupled with a lot more symptoms but fatigue is the worst). I had to give up my job over a year ago as I was both mentally and physically unable to do it anymore. I've been to several doctors and had tonnes of blood tests done but I have been informed they are all normal and that in fact there is nothing wrong with me. Doctors have consistently dismissed me, I keep going back only to be told it is all in my head. I have been given prescriptions for drugs for depression but I absolutely know I do not have depression!! There is nothing more I would like to do than be able to get back to work and become active again. I am unable to do anything!! I cannot go out, work, shower regularly and my house is a mess as I do not have the energy to clean it up. My big problem is that I do not have any more money- I only have one month's rent left and then I don't know what will happen to me. I do not have enough for food for another month. Is there anything I can do? I cannot seem to get a diagnosis from a doctor to get me on disability and I don't have the money to go to any more doctors. Does anyone know of any way I can overturn this? Is there any type of job that would allow someone like me to work a few hours a week so as to stop myself from starving? Any help or advice would be gratefully received. Thanks

condra

Okami, your situation is an absolute disgrace, but all too familiar and typical of this messed up country.

I had to fight for my disablement allowance and I suggest you do too. I would even go as far as saying trying to get some sort of back payment for the time you have not been earning already.

I'm sorry that I forget the exact process, but as far as I remember, the initial application was a letter sent into the guys who look after that.

They have doctors in the place in pearce street where they conduct a medical examination and assesment.

Before I was granted automatic "Disability Allowance" I had to go to my GP every week to get a little yellow card signed, for "illness benefit" which is a more temporary solution.
You must fill in a form called MC1 (available from any GP)

I urge you to find a more sympathetic GP. I dumped my first GP and now see a young modern understanding lady doctor.

I suggest you apply for a medical card too.

You might hopefully get more help here:

Disablement Section,
Social Welfare Services, Government Offices,
Ballinalee Road,
Longford
PH - 01- 704 3948
or (043) 45211
"LoCall Leaflet Request Line" 1890 20 33 25

The Disablement Section helpdesk is 01-6732078. You might be able to get more information on how best to apply for disablement benefit from them.

More hopefully usefull contacts:
Tom Kindlon
Irish ME/CFS Support Group
PO Box 3075 Dubllin 2
Tel: 01-2350965
Email: info@irishmecfs.org

Dept of Social and Family Affairs...
More info on illness benefit: 01 679 7777

You might also find some info here:
http://www.welfare.ie/

Hopefully someone else can give you some pointers ASAP.

Make sure to have a written list of your symptoms.
During examinations, its easy to get flustered and find it difficult to articulate everything clearly.
Tell them how much energy you have, even as a percentage, and how you are affected by exertion or stress if applicable.

When putting forward points about your condition, make sure to stress that your mood doesnt affect your PHYSICAL condition, or perhaps that if you are feeling down it is as a RESULT of the CAUSE, which is physical.

If you have no doubt that you are not depressed, make sure to get this point accross. Make sure to let them know that you are informed about some possible reasons for your illness. There are so many, M.E, MS, Lyme disease, amongst many many others.

DONT LET ANYONE TELL YOU YOURE DEPRESSED IF YOU KNOW YOURE NOT.

DONT GIVE UP WITHOUT A FIGHT

One more thing, finance aside, I think you should keep a list of what tests you have had, and also try to get more tests done. The more you can rule things out, the more sure you can be of your own diagnosis.
M.E is usually diagnosed where no bioligical condition can be detected, but as you might be aware, the existance of M.E is a contentious issue amongst the medical world.

You must be tired after reading all this, Im exhausted after writing it!

Best of luck,

Dec

okami

Dec,

Thank you so much for your swift and detailed reply. It really is amazing at how some advice can really lift someone's mood. I will look into all avenues that you have mentioned and hopefully something will work out. You are truly very kind to offer so much of your knowledge and thanks for your support.

condra

A little update on my situation.

I've been through another very ill patch these last 3 months.
My sleeping has started to be disturbed again, and my strength and general feeling of well being has halved.

Last night I had one of my occassional acute attacks where I go stone cold and feel severe nausea, aswell as what I can only describe as "dehydration with a lack of thirst". Its a bit like spontaniously going into shock, for no reason at all, and it takes a hot blaknet and cup of hot milk to warm me enough to stop shivering.

It is a very scary experience, made worse by the fact that the last time I went into The Mater during an attack, I was treated with such casual contempt that I would be scared to go back.

For a long time I had hoped that I would fall into the category of people with M.E who recover after between 2 and 5 years. Appearantly this makes up a large amount of people with M.E.

Lately it has occurred to me that I may have a life-long illness. Regardless, I think its only right and natural that I explore different avenues to see if theres a chance I may have a condition which has not been diagnosed. Bare in mind, "post viral fatigue" is the only diagnosis I've yet had.

I keep in touch with things going on with ME/CFS patients in UK/Ire. Occassionally, people on ME/CFS forums are diagnosed with treatable conditions.
2 things which have come up more recently are Addisons disease and Lyme disease.

Ive decided to investigate both avenues soon.
A local doctor (a stand-in doctor, not my regular GP who is great) recently told me that I had "been tested for pretty much everything",
Obviously she doesn't think Addisons disease and Lyme testing are a worthwhile option for someone who has been sick and undiagnosed for 6 years, despite the fact that recently, a significant number of patients previously diagnosed with ME/CFS have tested positive for Lyme or Addisons.

An old friend of mine, Lois Davies, was recently disgnosed with Lyme disease after years of illness, having been treated like a lunatic by doctors.

The more I read about these sort of situations, the more appearant it is to me that lack of diagnosis, and complete misdiagnosis is very common in Ireland, and hundreds of people are suffering needlessly because of apathetic GPs and overstretched specialists.

It seems most people in Ireland with a less common condition than cancer or diabeties, have to fight against apathy, neglegence, ignorance and prejudice if they want to get diagnosis.
People are shunned for taking matters into their own hands, accoused of being hypercondriacs if they arm themselves with knowledge from the internet, yet so often left to suffer if they show a passive willingness to leave the "professionals" to do their jobs.

This situation angers and embitters me.

CathyMoran

womoma wrote: »

A little update on my situation.

I've been through another very ill patch these last 3 months.
My sleeping has started to be disturbed again, and my strength and general feeling of well being has halved.

Last night I had one of my occassional acute attacks where I go stone cold and feel severe nausea, aswell as what I can only describe as "dehydration with a lack of thirst". Its a bit like spontaniously going into shock, for no reason at all, and it takes a hot blaknet and cup of hot milk to warm me enough to stop shivering.

It is a very scary experience, made worse by the fact that the last time I went into The Mater during an attack, I was treated with such casual contempt that I would be scared to go back.

For a long time I had hoped that I would fall into the category of people with M.E who recover after between 2 and 5 years. Appearantly this makes up a large amount of people with M.E.

Lately it has occurred to me that I may have a life-long illness. Regardless, I think its only right and natural that I explore different avenues to see if theres a chance I may have a condition which has not been diagnosed. Bare in mind, "post viral fatigue" is the only diagnosis I've yet had.

I keep in touch with things going on with ME/CFS patients in UK/Ire. Occassionally, people on ME/CFS forums are diagnosed with treatable conditions.
2 things which have come up more recently are Addisons disease and Lyme disease.

Ive decided to investigate both avenues soon.
A local doctor (a stand-in doctor, not my regular GP who is great) recently told me that I had "been tested for pretty much everything",
Obviously she doesn't think Addisons disease and Lyme testing are a worthwhile option for someone who has been sick and undiagnosed for 6 years, despite the fact that recently, a significant number of patients previously diagnosed with ME/CFS have tested positive for Lyme or Addisons.

An old friend of mine, Lois Davies, was recently disgnosed with Lyme disease after years of illness, having been treated like a lunatic by doctors.

The more I read about these sort of situations, the more appearant it is to me that lack of diagnosis, and complete misdiagnosis is very common in Ireland, and hundreds of people are suffering needlessly because of apathetic GPs and overstretched specialists.

It seems most people in Ireland with a less common condition than cancer or diabeties, have to fight against apathy, neglegence, ignorance and prejudice if they want to get diagnosis.
People are shunned for taking matters into their own hands, accoused of being hypercondriacs if they arm themselves with knowledge from the internet, yet so often left to suffer if they show a passive willingness to leave the "professionals" to do their jobs.

This situation angers and embitters me.

I just want to wish you all the best in your quest. I nearly did not get diagnosed as I did not fit the profile for my illness so I can understand your fustration. Take care and do not give up.