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Undiagnosed circle of hell.

dlofnep

Alright,

I've been ill on and off for the past 4 years. Up until now, I tolerated it. Symptoms are flu-like, for months on end. I've been burning up with a fever, sneezing, feeling generally achy and painy. This latest patch has been terrible. I've missed 2 or 3 weeks of work, and I'm after being warned for being out ill twice at this point.

I've tried everything in terms of my diet, just to weed out any allergies - by going on a fruit, veg & water detox for 2 weeks - but I still came down with the same symptoms.

I've had every kind of blood test taken, all came back positive. I'm currently waiting on the results of a Lyme Disease blood test, but beyond that - my GP has absolutely no idea what to do with me.

He referred me to a local gastrologist, who sent him a letter back stating that he can't treat me as it doesn't sound like something gastrology related?

I had re-occuring pains in my kidney areas, but I had a scan on them which came back fine. The kidney pain isn't so bad right now - but about 3 months ago it was really sore.

I've been pretty much trying to tough it out, but it's gone too far now and has kicked the crap out of me. I'm suppose to start a masters in a few weeks, and I'm seriously considering putting it off.

I just don't know what to do - I don't know who to go to. I've taken 30 odd blood tests over the past 40 years, had x-rays and ultrasounds. I generally feel like crap for months on end, with periods of no longer than 1 or 2 days in between where I feel semi-normal. I put on a happy face - but inside, I feel like breaking everything in sight, because I'm 27 and this isn't how life should be.

I've no idea what to do - No idea who to see? I don't have much money, but I need to see someone who'll test me for everything possible, and see it through. Someone who actually cares about their patient. When my doctor is lost for ideas, you know I'm really screwed!

I feel it is something viral, but what the hell do I know? Could somebody point me in the right direction - as if this last test comes back ok - I have nowhere else to go.

Sorry if this all sounds like a whine, but meh.

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TrollHammaren

dlofnep wrote: »

Got my disability allowance form filled out by my GP today Handing in my notice to work. The time for recovery starts now. Alot of stress off my shoulders. Does anyone know how long it will be before I receive payments?

Delighted for you, man! Did you follow my advice?

dlofnep

Can I submit it, with my employment listed?

opinion guy

dlofnep wrote: »

The form asks if I'm employed or not - Surely if I'm employed I won't qualify, so I have to hand in my notice?

OH right sorry I don't know about this

cltt97

maybe you could askt the social welfare officer in your area? You could also consider only working part time or only a couple of days a week or so as an alternative to completely quit your job? Maybe you could discuss this with HR and see what they think, if relations haven't deteriorated too much with them?
Or maybe have a roam on the social welfare website or similar to see if you can find information on the normal rates etc?

dlofnep

I am working part-time as it stands, and it's too much. I'm not not well enough to work at all.

cltt97

well, in that case I would ring the social welfare office and explain the situation and enquire how long the application will take etc and say that you're planning to resign as soon as the application comes through as you can't live on thin air in the meantime? Or there might even be an alternative to all this, I think it's best to ring them directly and ask.

dlofnep

I'll pop into them tomorrow and find out.

cltt97

Lots of useful information here http://www.citizensinformation.ie/en/social_welfare/social_welfare_payments/disability_and_illness/disability_allowance.html

ally23

It took about 10 days until I received my first payment, You don't get paid for the first three days so your first payment is slightly lower, it then increases thereafter.

Not sure about the situation with work, think you should be okay if you have handed in your notice and therefore won't be eligible for sick pay. But you would need to check this.
Glad for you that you made the decision and hope it all comes good or you.

condra

Just read the whole thread. I was going to say that I reckon the stress and responsibility of the job couldn't be good for your health. Hard to recover from anything when you're running around like a headless chicken.

I'm out of work 10 years with Chronic fatigue/allergies/viral symptoms. I'll follow your progress on this thread, and I wish you the best of luck.

dlofnep

Thanks

Quick update.

I've sorted out illness benefit until I sort out a permanent disability benefit option. I can get it for up to 2 years, so I'm ok for the timebeing.

I've been to the dentist on 3 visits and have the majority of fillings removed, only one more to go and then I'm done. I've also booked an appointment through my doctor to get my stomach and bowel checked out with a camera, as I often feel nauseous and get pains in my stomach. That will be about 4-6 weeks before I get called.

Staying positive. I've started swimming also to help me at least get my fitness levels up. It can't be good to sit at home all day and do nothing - if I am to fight this, I have to be as fit as I can. I do swim, then sauna which is useful for moving the mercury out of my system. I'm going to test my mercury levels once the last piece is replaced and then start the detox process.

Fingers crossed!

opinion guy

Do you feel any different since getting the dental work done ?

dlofnep

opinion guy wrote: »

Do you feel any different since getting the dental work done ?

No and if I did, it would only be placebo. It can take anywhere from 6 months to a year to detox the body of mercury. Removing the amalgam is only the first step - it is akin to turning off a dripping tap - but all the mercury accumulated on the body tissue and brain needs to be pushed out of the system. It's a long and tedious process, so I honestly won't really know for at least 6 months.

I watched a documentary on mercury fillings from ITV and I was shocked at the response from the top guys from the British Dental association. They were back-peddling on everything, and contradicting themselves every second sentence. One guy went as far to start making childish noises because he didn't like the questions being asked.

It showed a case of one woman who had them removed, and she said after a few months she felt very much improved.

opinion guy

dlofnep wrote: »

No and if I did, it would only be placebo. It can take anywhere from 6 months to a year to detox the body of mercury. Removing the amalgam is only the first step - it is akin to turning off a dripping tap - but all the mercury accumulated on the body tissue and brain needs to be pushed out of the system. It's a long and tedious process, so I honestly won't really know for at least 6 months.

I watched a documentary on mercury fillings from ITV and I was shocked at the response from the top guys from the British Dental association. They were back-peddling on everything, and contradicting themselves every second sentence. One guy went as far to start making childish noises because he didn't like the questions being asked.

It showed a case of one woman who had them removed, and she said after a few months she felt very much improved.

Yes I know it takes a while to get it out - I was just curious. I've heard some anti-mercury dentists claim that people feel better much quicker - I don't really believe that thou.

You should check out an organisation called Consumers for Dental Choice - fighting a battle against amalgam in the USA:
http://www.toxicteeth.org/
Interesting interviews:

https://www.youtube.com/watch?v=mW7nOzdhpZA

...thou I DON'T endorse this Dr Mercola guy who is doing the interview - runs some health website that seems like a marketing tool:mad:

dlofnep

Thanks.

The way I feel is that even if it isn't the fillings, at least I will have ruled it out and have shiney white teeth. It's a win-win situation

Although I strongly suspect it is the fillings, as my health was perfect until I got fillings.

opinion guy

dlofnep wrote: »

Thanks.

The way I feel is that even if it isn't the fillings, at least I will have ruled it out and have shiney white teeth. It's a win-win situation Although I strongly suspect it is the fillings, as my health was perfect until I got fillings.

Out of curiosity if you don't mind to share - when did you get the fillings and how long did it take before you started getting symptoms ?

dlofnep

opinion guy wrote: »

Out of curiosity if you don't mind to share - when did you get the fillings and how long did it take before you started getting symptoms ?

About 5 years ago. I started getting ill about 3 weeks afterwards, although it was a gradual onset. At the beginning, my symptoms weren't too bad. Just tired alot, felt my immune system was weak. Lots of colds. But eventually it has got to the point where I'm ill, 7 days a week, 52 weeks a year. I have my good days and bad days, but I haven't felt like a normal person in 5 years.

kangaroo

dlofnep wrote: »

Staying positive. I've started swimming also to help me at least get my fitness levels up. It can't be good to sit at home all day and do nothing - if I am to fight this, I have to be as fit as I can. I do swim, then sauna which is useful for moving the mercury out of my system. I'm going to test my mercury levels once the last piece is replaced and then start the detox process.

Fingers crossed!

Unfortunately, exercise in the period I was undiagnosed I believe led to a deterioration in my health although, of course, at the time I thought I was helping myself and was proud of my self-discipline in prioritising exercise. As I said earlier in the thread, I went on to be diagnosed with ME/Chronic Fatigue Syndrome/Post-Viral Syndrome.

dlofnep

kangaroo wrote: »

Unfortunately, exercise in the period I was undiagnosed I believe led to a deterioration in my health although, of course, at the time I thought I was helping myself and was proud of my self-discipline in prioritising exercise. As I said earlier in the thread, I went on to be diagnosed with ME/Chronic Fatigue Syndrome/Post-Viral Syndrome.

If I must be honest - I think all those names are a cop out from lazy doctors who don't want to pursue the root cause of these illnesses with the rigor that it deserves.

I was told that I "might have ME" about 5 years ago just because I told a doctor that I was tired and ill alot. He didn't even entertain looking into it. Did nothing beyond a basic blood test and certainly wasn't in a position to diagnose me with anything.

I'd be weary about listening to any doctor that throws up a diagnosis without knowing what's causing it. The body doesn't just break down one day and tell your immune system to stop working, and your body to become lethargic. There's always a cause. And that's what my mission is - to find out the cause, and not to get some GP who's trying to rush people in and out as fast as possible to get a quick buck to give me a catchy phrase.

A diagnosis is irrelevant unless there is a cause that's found. At least, that's my feelings on the topic.

sam34

truthaboutme, don't post in this thread again unless you have something to say which is helpful to the op or contributes to the discussion at hand. any posts nit following these guidelines will be deleted.

dlofnep

Thanks Sam

kangaroo

dlofnep wrote: »

If I must be honest - I think all those names are a cop out from lazy doctors who don't want to pursue the root cause of these illnesses with the rigor that it deserves.

I was told that I "might have ME" about 5 years ago just because I told a doctor that I was tired and ill alot. He didn't even entertain looking into it. Did nothing beyond a basic blood test and certainly wasn't in a position to diagnose me with anything.

I'd be weary about listening to any doctor that throws up a diagnosis without knowing what's causing it. The body doesn't just break down one day and tell your immune system to stop working, and your body to become lethargic. There's always a cause. And that's what my mission is - to find out the cause, and not to get some GP who's trying to rush people in and out as fast as possible to get a quick buck to give me a catchy phrase.

A diagnosis is irrelevant unless there is a cause that's found. At least, that's my feelings on the topic.

Well I can't really comment on your medical history but can comment on myself, some others I've come across and the field in general. Apologies if any of this is a repeat of something I've said before - it's a long thread.

There is some research funded by the CDC and others that followed people who got some infections and a percentage have a similar symptom profile 6 and 12 months later e.g.

http://www.cdc.gov/cfs/general/causes/index.html

Recently published research suggests that infection with Epstein-Barr virus, Ross River virus and Coxiella burnetti will lead to a post-infective condition that meets the criteria for CFS in approximately 12% of cases. The severity of the acute illness was the only factor found to predict which individuals would have persistent symptoms characteristic of CFS at the six-month and one-year period following infection.

ME or CFS or PVFS provides a useful working model for the symptoms I have. I became ill when I was 16 after not resting when I had an infection. I had been sporty up to that but any time I tried to exercise I would get muscle pains. I wanted to get back to my sports and was fed up being tired mentally and physically etc so went to different practitioners e.g. orthopaedic surgeons, physios, doctors, etc. In total, I had over 100 physio appointments. They all basically encouraged me to exercise - that exercise would help me and my symptoms based on how the body reacts in healthy people. However, I kept getting abnormal muscle pains and the like - usually based on the different muscle groups I'd tried to exercise. My health eventually deteriorated, I took a year out of college, tried to exercise, but my health gradually got worse. I have now been stuck at a low level (housebound) for 16 years; if I try to push the bounds, I get symptoms like sore throats, swollen and/or tender glands, and a variety of other symptoms.

Since reading up about ME/CFS, I have read lots of studies that show that people with the condition have an abnormal response to exercise - it doesn't have the same effect on people with the condition as it does on healthy people. If I had had that label, I feel I would have been much more careful with exercise and never gotten to the low level of functioning I am now.

I'm not happy that my life is passing me by; I, like many people with ME, have tried a myriad of treatments - having one's mercury fillings out is something I've heard lots of people talk about (I am so ill I don't feel up for it). I would certainly like to get to the root of the problem. But both the patient literature e.g. on how to manage the illness and the research literature e.g. exercise abnormalities, seems to provide a useful model for what I have. I have also met and sometimes become friendly with some people who have similar symptoms - we have a lot in common. Most people aren't as ill as me - there is a huge range of functioning just as in the initial years, I myself was fairly mildly affected (in full-time education).

There is a lot of talk that CFS (the term generally used in the medical literature) is heterogeneous. There are lots of theories around about what could be causing it and how it should be treated. Lots of people say that there could be different subgroups included in the diagnosis. I hope research will come up with the answers. In the meantime, the diagnosis as I say provides a useful model for what I have. It is frustrating to have a condition where a lot is not known - but when one digs deeper, a lot is not known about a lot of conditions e.g. one may have read about the theory that MS should be treated by increasing the size of arteries/veins - who knows whether it is true or not, but the thing is that people don't know what causes MS.

eilo1

kangaroo wrote: »

Well I can't really comment on your medical history but can comment on myself, some others I've come across and the field in general. Apologies if any of this is a repeat of something I've said before - it's a long thread.

There is some research funded by the CDC and others that followed people who got some infections and a percentage have a similar symptom profile 6 and 12 months later e.g.

ME or CFS or PVFS provides a useful working model for the symptoms I have. I became ill when I was 16 after not resting when I had an infection. I had been sporty up to that but any time I tried to exercise I would get muscle pains. I wanted to get back to my sports and was fed up being tired mentally and physically etc so went to different practitioners e.g. orthopaedic surgeons, physios, doctors, etc. In total, I had over 100 physio appointments. They all basically encouraged me to exercise - that exercise would help me and my symptoms based on how the body reacts in healthy people. However, I kept getting abnormal muscle pains and the like - usually based on the different muscle groups I'd tried to exercise. My health eventually deteriorated, I took a year out of college, tried to exercise, but my health gradually got worse. I have now been stuck at a low level (housebound) for 16 years; if I try to push the bounds, I get symptoms like sore throats, swollen and/or tender glands, and a variety of other symptoms.

Since reading up about ME/CFS, I have read lots of studies that show that people with the condition have an abnormal response to exercise - it doesn't have the same effect on people with the condition as it does on healthy people. If I had had that label, I feel I would have been much more careful with exercise and never gotten to the low level of functioning I am now.

I'm not happy that my life is passing me by; I, like many people with ME, have tried a myriad of treatments - having one's mercury fillings out is something I've heard lots of people talk about (I am so ill I don't feel up for it). I would certainly like to get to the root of the problem. But both the patient literature e.g. on how to manage the illness and the research literature e.g. exercise abnormalities, seems to provide a useful model for what I have. I have also met and sometimes become friendly with some people who have similar symptoms - we have a lot in common. Most people aren't as ill as me - there is a huge range of functioning just as in the initial years, I myself was fairly mildly affected (in full-time education).

There is a lot of talk that CFS (the term generally used in the medical literature) is heterogeneous. There are lots of theories around about what could be causing it and how it should be treated. Lots of people say that there could be different subgroups included in the diagnosis. I hope research will come up with the answers. In the meantime, the diagnosis as I say provides a useful model for what I have. It is frustrating to have a condition where a lot is not known - but when one digs deeper, a lot is not known about a lot of conditions e.g. one may have read about the theory that MS should be treated by increasing the size of arteries/veins - who knows whether it is true or not, but the thing is that people don't know what causes MS.

Hi Kangaroo, Im sorry to hear about our problems. I just wanted to comment on CFS and exercise. Iv read a few papers on the benefits of graded exercise programs for individuals with CFS and thought you may be interested. I realise that it didnt work for you in the past while you where recovering but now that things have stabilised it may be beneficial to readdress. Perhaps your doctors could advise.

Anyways here are some of the papers I have read.
http://www.bmj.com/content/322/7283/387.abstract

http://www.bmj.com/content/314/7095/1647.abstract

http://www.ncbi.nlm.nih.gov/sites/entrez/9828987?dopt=Abstract&holding=f1000,f1000m,isrctn

dlofnep

I don't have any problems exercising. It makes me feel refreshed. My problems stem more from brain-fog, and a poor immune system. My body is otherwise in good shape. Regarding CFS/ME - I'm just not comfortable placing a name on how I feel. I'm only comfortable in seeking out a solution. So I'm narrowing down the causes. I have ruled out bloods. I'm now focusing on mercury toxicity, and my stomach and bowel. So long as I'm in search of a solution, I'll be happy. If I feel that I've exhausted every possible avenue, then at least I will have tried. But I think people are too quick to give up. I haven't given up yet, and I don't plan anytime soon. I'm not on this earth to lay in bed, and I certainly didn't do a degree to not be in a position to become employable.

I'll make sure that I continue to update as to how I feel. I think it's important that we start documenting these unexplained illnesses, so other people with similar problems can relate and it might give them ideas on what areas to try or where to look.

kangaroo

eilo1 wrote: »

Hi Kangaroo, Im sorry to hear about our problems. I just wanted to comment on CFS and exercise. Iv read a few papers on the benefits of graded exercise programs for individuals with CFS and thought you may be interested. I realise that it didnt work for you in the past while you where recovering but now that things have stabilised it may be beneficial to readdress. Perhaps your doctors could advise.

Anyways here are some of the papers I have read.
http://www.bmj.com/content/322/7283/387.abstract

http://www.bmj.com/content/314/7095/1647.abstract

http://www.ncbi.nlm.nih.gov/sites/entrez/9828987?dopt=Abstract&holding=f1000,f1000m,isrctn

Those trials were not done on the severely affected.

They used the Oxford criteria - basically anyone with chronic tiredness. It's not that surprising that some might benefit. I could criticise them more but it might be considered off-topic.

My experiences of exercise are not unusual. For example, a survey by the (UK) ME Association found that of 906 who had done GET programs, 212 (23.4%) had been made "slightly worse" and 300 (33.1%) had been made "much worse" http://www.meassociation.org.uk/images/stories/2010_survey_report_lo-res.pdf . Such high rates of adverse reactions would be taken seriously if they were a drug. Many of us who have been harmed feel a duty to warn others to be careful.

These guidelines discuss the issue further: http://www.mefmaction.com/images/stories/Overviews/Canadian_ME_Overview_A4.pdf including mentioning some of the numerous abnormal responses to exercise that have been found in the condition. There is a battle in the area which outsiders may not be aware of: psychiatrists and others say that all patients have is deconditioning - that there is nothing physically wrong. However, there is plenty of evidence to suggest their model is wrong.

kangaroo

I read the following in a published article the other day. It made me think of this thread. It's about the different approaches people can take to health problems (also the paper makes clear that people can change in their viewpoint in time):

Frank (1995, p. 76) proposes that three types of
narrative exist, the restitution, chaos and quest
narratives, and that in any illness narrative all three
types will be told, with one type guiding the
narrative at any one time.

Restitution narrative

The restitution narrative is framed as the most
common narrative amongst the recently ill but least
often evidenced amongst the chronically ill (Frank,
1995, p. 77). The basic plot of the restitution story is
that yesterday I was healthy, today I am sick but tomorrow I will be better (Frank, 1995, p. 77). This
narrative type is about movement away from and
back towards health, exploring the experiences and
meaning of investigations and treatments.

The ill person’s own desire for restitution is
compounded by the expectation that other people
want to hear restitution stories. The sick role is a
master narrative in Western health care espoused in
Parson’s sick role (Parsons, 1951) with the ultimate
expectation that an individual will get well. People
learn from institutional stories the model of how
illness stories should be told. Media abounds with
stories of those who have recovered and continued
with their lives (Kroll-Smith, 2003).

The restitution narrative reflects a modernist
expectation that for every suffering there is a
remedy. The emphasis is on the sufferer to solve
the puzzle of illness (Frank, 1995, p. 80). This
narrative type is one often used in the media to
promote recovery from illness and portrays the
ability to over come anything. For people living
with a chronic illness, hearing stories of recovery
can be both inspiring, that there is hope of positive
change, and intimidating if they are unable to see
anyway of taking steps to recovery and experience
social pressures to overcome illness.

The implicit genesis of illness in the restitution
narrative is an unlucky breakdown in the body. The
causal act is not drawn upon because the individual
does not focus on illness, but rather on the recovery.

Chaos narrative

In the chaos narrative, the plot is that life will
never get better; no one is in control. Sufferers
describe experiencing an ‘‘emotional battering’’
(Frank, 1995, p. 101) stemming from their rejection
of their suffering by clinicians and socially by
others. In the chaos narrative, the individual makes
attempts to reassert predictability but these generally
fail and efforts have a cost for the individual.
The stories reveal vulnerability, futility and impotence
(Frank, 1995, p. 97) and can be difficult to
listen to. Chaos narratives depict people ‘‘sucked
into the undertow of illness’’ whilst restitution
narratives illustrate illness as ‘‘transitory’’ (Frank,
1995, p. 115).

Quest narrative
In the quest narrative, individuals accept illness
and seek to use this, believing that something is to
be gained through the experience. Illness is seen as a
challenge and an impetus for change (Frank, 1995,
p. 166). This differs from the restitution narrative
where individuals are not solely seeking recovery
from illness.

Three subtypes of quest narratives are proposed.
The first is memoir in which events are related
simply. The second is manifesto in which illness
becomes a motivator for social action or change.
The third is automythology in which illness is
expanded to reveal fate or destiny (Frank, 1995,
pp. 119–120).

The person whilst no longer ill remains marked
by illness. A hero’s status is derived from being
initiated through agony to atonement. When this is
the only narrative put forward the reader is
encouraged to critically evaluate it where a move
straight from the onset of symptoms to a quest
narrative without apparent suffering appears ‘‘too
clean’’ cut (Frank, 1995, p. 135).

condra

Regarding CFS/ME and Graded Excercise, I'll just quote The Whittemore Peterson Institute Of Neuro Immune Disease:

Cognitive Behavioral Therapy (CBT) and Graded Exercise Therapy (GET) were developed as support therapies for those with primary depression who are otherwise in good health.

It is well known that appropriately diagnosed ME and CFS patients suffer with signs, symptoms and laboratory findings consistent with a persistent infection. Although there is a place for psychotherapy and exercise appropriate to severity in any chronic illness, the suggestion that such coping strategies are a substitute for meaningful treatment is an insult to patients.

Just as doctors would never prescribe such treatments for HIV, it is irresponsible to suggest these methods would be effective for patients with a serious infectious neuro-immune disease.

Research physiologists have clearly shown that exercise can cause an exacerbation of the disease, especially when patients are forced to exercise or when told to “push through” their illness.

Since the WPI’s discovery of a high correlation between retroviral infection and neuro-immune diseases, it is unforgivable for physicians to continue to harm their patients psychologically by suggesting they are responsible for, or can be talked out of, being ill.

DLOFNEP -
I'm sorry to see your thread go off the rails with bickering. Hopefully we can get back to the topic at hand. For anyone who wants to discuss CFS/ME and all the glorious controversy surrounding it, I've made a thread here:
http://www.boards.ie/vbulletin/showthread.php?p=71400145#post71400145

condra

By the way DLOFNEP, I took a leaf out of your book and decided to book an appointment with Drummartin Clinic. I'm going to go with a fairly open mind. I'll make a thread about my experience at some point.

Going back to your story though, and I just wanted to say something about graded excercise etc. My own experience (ME/CFS/Undiagnosed) is that I can do some moderate exercise during a "good patch" - but during a "bad patch" it is completely out of the question. When I'm sick, not only do my weak muscles tire quickly, but my coordination is bad, and movement causes nausea.

I think for many people with unexplained illness, it can be very quickly apparent whether or not exercise helps with their condition. I'm sure it can help with some conditions, but if exercise makes you worse, for goodness sakes get some rest.

sam34

truthaboutme, do not post in this thread again. at all. any more posts of yours will be deleted.

kangaroo, wildoscar, truthaboutme, if ye haveissues with each others opinions/ beliefs etc, take it to pm or use the ignore function.

everyone, back on topic please!

tbh

Please note - the mods will take all and every step possible to prevent the unregistered posting function from being abused.

I'm a pretty patient guy, but when I see someone putting the use of this function in jeopardy to score points anonymously, it pisses me off.

If it happens again, I'll be going to the admins to try and find out more info on who's doing it, and I promise you, that will not be the end of the matter.