Suspected CFS/ME due to acute Glandular Fever

sickanon

I have been ill for the last nine months with Glandular Fever. Originally, I was told I would recover within six months, and foolishly I continued working fulltime even after my diagnosis. Eventually, I lost my job, and thus my dream of being a graphic designer, due to my illness. Since my diagnosis, my health has deteriorated rather than improved. I live with chronic fatigue, chronic pain, headaches, muscular pain, swollen glands, and sore throat. I am in constant pain. In my efforts to find answers as to why I have failed to recover, I discovered in my online searching that there is a strong link between Glandular Fever and CFS/ME. I was wondering if there's a possibility the virus has led to me developing a chronic illness? And how might I go about getting diagnosised in Ireland? My GP is currently refusing to entertain a rediagnosis, and inisists that my primary diagnosis is still Glandular Fever / Post Viral Fatigue. I'm tired of not being taken seriously by medical professionals.

echo beach

You said it yourself that you continued to work full time and you haven't given your body a chance to recover from what is a very serious illness in some people. The six months recovery time was an estimate or average and assumed getting a lot of rest. It can be quicker and unfortunately it can take a lot longer.
What name is put on your symptoms doesn't really matter. You will recover but it takes time and your dreams aren't finished, just on hold for awhile until you get better.

Wesser

Just because he disagreed with what the diagnosis is, doesn't mean that he is not taking you seriously.

Most people who have chronic fatigue and pain would love to know what the root cause is. At least you know.

sickanon

Wesser wrote: »

Just because he disagreed with what the diagnosis is, doesn't mean that he is not taking you seriously.

Most people who have chronic fatigue and pain would love to know what the root cause is. At least you know.

The problem is, I am no longer able to work due to my illness. I was recently made redundant as a result of being sick for so long. I don't qualify for disability benefit with a Glandular Fever diagnosis, so I'm now facing homelessness due to his refusal to consider that my disease has developed into something more serious. Knowing that Glandular Fever has caused my chronic pain, doesn't mean I am receiving any treatment or help for managing my symptoms.

sickanon

echo beach wrote: »

You said it yourself that you continued to work full time and you haven't given your body a chance to recover from what is a very serious illness in some people. The six months recovery time was an estimate or average and assumed getting a lot of rest. It can be quicker and unfortunately it can take a lot longer.
What name is put on your symptoms doesn't really matter. You will recover but it takes time and your dreams aren't finished, just on hold for awhile until you get better.

I recognize that I have probably sabotaged my chances of making a full recovery by continuing to work throughout my illness. In my defense, I don't qualify for any form of social welfare, so I had to work to keep a roof over my head. And in the beginning, I was advised to live as normally as possible, without any warning of the serious life long consequences Glandular Fever can have for people who never recover. The name on my symptoms matter because I have been made redundant, and don't qualify for disability benefit under my current diagnosis. I am afraid I will end up homeless.

Wesser

Ok. So the problem is that the dept of social welfare AKA the government are ignorant and unhelpful, by not listing this as a qualifying illness.

This is not your GP's fault and it does not mean he is not taking you seriously. He is most likely correct in his diagnosis and he should not have to change his diagnosis nor should he have to lie, in order to fullfull some stupid government beurocratic rule, in order for you to obtain a basic life supporting payment.

CFS syndrome is not more serious than post viral fatigue. One patient can have mild CFS which they can work through and another can have dehibilitating post viral fatigue.

Sorry to hear things are rough for you at the moment. But this is not your GPs fault.

njs030

sickanon wrote: »

The problem is, I am no longer able to work due to my illness. I was recently made redundant as a result of being sick for so long. I don't qualify for disability benefit with a Glandular Fever diagnosis, so I'm now facing homelessness due to his refusal to consider that my disease has developed into something more serious. Knowing that Glandular Fever has caused my chronic pain, doesn't mean I am receiving ant treatment or help for managing my symptoms.

You're incorrect about disability allowance, it isn't paid based on diagnosis it's based on if the person -
(from citizens advice)
'Have an injury, disease or physical or mental disability that has continued or may be expected to continue for at least one year
As a result of this disability be substantially restricted in undertaking work that would otherwise be suitable for a person of your age, experience and qualifications'

So you are perfectly eligible to apply and aren't facing homeless because of your diagnosis, however if your doctor doesn't feel it'll last at least a year you aren't eligible.
Perhaps illness benefit would be something to consider.

lilblackdress

Hi OP,

I don't know about the whole social welfare issues mentioned but I did want to sympathise a little with you.

When I was in the middle of my college degree I developed CFS. I also managed to keep up work and studied from home although when I look back I really don't know how. I use to have to sit down every third or fourth step walking up the stairs. Too exhausted to even shower most of the time.

I went through all the tests and then received a diagnosis of CSF but the harsh truth is that the only way to really come to that diagnosis is to outrule everything else.

I refused to take medications as they would have zonked me out and I had to complete placement for college and continue to work in order to pay my rent and fees. The medications I was prescribed were massively high dosages of 3 types of meds used for depression. The neurologist I attended was very unhappy with my refusal to take these meds, would not discuss any alternative options with me and discharged me from his service.

The thing is though, I did get over it after about a year. It was probably also post viral. I had shingles also around the time.

I still have bouts of debiliting fatigue which causes me to have a really low mood and did have shingles again last year during one of these episodes however I do continue to work although my personal life suffers massively.

There is a complete lack of understanding from people who just assume laziness a lot of the time.

Some things I did try and believe me apart from medications which would have left me in a zombie state I tried everything I could... was dark chocolate, many studies have shown 35g of 85% works well for fatigue. I also started to take vit b supplements to try and get energy. Not saying these things will work for you but when I have episodes now they are the first 2 things I turn to. Even a berocca every morning. It may not work for you but no harm in trying.

Keep your head up. Go to a citizens advice centre and talk to someone who can help. Also, don't bog yourself down in getting tests. First of try to concentrate on getting some energy back. The last thing you need is more stressful situations.

Best of luck with the recovery. You will get there.

sickanon

lilblackdress wrote: »

Hi OP,

I don't know about the whole social welfare issues mentioned but I did want to sympathise a little with you.

When I was in the middle of my college degree I developed CFS. I also managed to keep up work and studied from home although when I look back I really don't know how. I use to have to sit down every third or fourth step walking up the stairs. Too exhausted to even shower most of the time.

I went through all the tests and then received a diagnosis of CSF but the harsh truth is that the only way to really come to that diagnosis is to outrule everything else.

I refused to take medications as they would have zonked me out and I had to complete placement for college and continue to work in order to pay my rent and fees. The medications I was prescribed were massively high dosages of 3 types of meds used for depression. The neurologist I attended was very unhappy with my refusal to take these meds, would not discuss any alternative options with me and discharged me from his service.

The thing is though, I did get over it after about a year. It was probably also post viral. I had shingles also around the time.

I still have bouts of debiliting fatigue which causes me to have a really low mood and did have shingles again last year during one of these episodes however I do continue to work although my personal life suffers massively.

There is a complete lack of understanding from people who just assume laziness a lot of the time.

Some things I did try and believe me apart from medications which would have left me in a zombie state I tried everything I could... was dark chocolate, many studies have shown 35g of 85% works well for fatigue. I also started to take vit b supplements to try and get energy. Not saying these things will work for you but when I have episodes now they are the first 2 things I turn to. Even a berocca every morning. It may not work for you but no harm in trying.

Keep your head up. Go to a citizens advice centre and talk to someone who can help. Also, don't bog yourself down in getting tests. First of try to concentrate on getting some energy back. The last thing you need is more stressful situations.

Best of luck with the recovery. You will get there.

Thank you for sharing your story. I was diagnosed with Chronic Fatigue Syndrome by my doctor this morning, although I now have to go to a specialist in Galway to make the diagnosis official. My doctor told me that there is no cure and that I will be ill for the rest of my life. She said she didn't know if I will qualify for illness or disability benefit, so I will have to apply and see what happens. I don't want to comment about your case, but it appears that I have a disability now...my hopes of having a career and living a normal life are over.

nikkibikki

Those hopes are not gone. You just need to give yourself a chance to find a way.

I assume you haven't the required PRSI contributions and that's why you say you don't qualify for the SW illness payment, Illness Benefit. You can apply for Disability Allowance now. It can take up to 9 months to come through. In the meantime, you may get a payment called Supplementary Welfare Allowance. You will need to visit your local Community Welfare Officer for this and if you have all documents with you, they'll give you a decision immediately or at least pretty quickly. Look it up on the DSP website welfare . ie you might be able to download the form and fill it in and you'll know what to bring with you.