UPDATE 2014

ME/CFS - chronic fatigue syndrome, myalgic encephalomyelitis.

After having Glandular Fever, I was constantly told that I was suffering the 'after effects of glandular fever' for two years. The symptoms I have are similar of that of Glandular Fever; achey, EXTREMELY tired, generally unwell, sore throat. Plus some new additions; shakey hands, feeling sick after eating etc.

Finally in March 2014, I couldn't stand it any longer, I had gone completely downhill - feeling as bad as I had done while having the Glandular Fever just minus the sore throat/swollen glands. 

I knew it wasn't the after effects of glandular fever anymore... it couldn't be.

I would strongly urge anyone after Glandular Fever who is feeling this way to seek help. My GP didn't really understand - the 'after effects of Glandular Fever' do not last for 2 years plus and your not going insane/imagining them. Its all well and good, people telling you to do exercise, stop sleeping, stop moaning etc - but it seems physically impossible. 

That's because it is!

In March 2014, I paid to go private and saw a specialist in Endocrinology; Dr Annice Mukherjee. 

Who diagnosed me with M.E/CFS.

Although to most people this would be bad news; to me this seemed like a light at the end of a very long and very very dark tunnel - someone understood and didn't think I was making it up/going insane etc.

She put me on vitamins as my body was completely depleted in all vital vitamins and minerals - a normal symptom of M.E, I had incredibly low blood pressure and all the sleep and lack of movement was putting a strain on my organs.

This was three weeks ago and after strictly taking my vitamins, cutting out Coca Cola completely, eating healthy - no processed foods - I feel healthier - not BETTER, healthier.

Vitamins; 

Spatone Water, A to Zinc Centrum Tablets, DLux Vitamin D Spray.

Yesterday I went back for my second consultation and was told I was doing really well; she told me to continue doing what I am doing. 

ME/CFS is a disability. 

It is a debilitating, life effecting illness - I'm never going to get better but I can learn manage it. To most something like this would be life changing, but after having Glandular Fever for 2 years, I don't feel much different. And if I can make myself feel the slightest bit better by taking vitamins and not napping then that's what I will do! 

Along with not drinking alcohol (or not having a lot), not exerting myself to the point where I am bed bound for a week and not overdoing it. All these things seem simple and easy in comparison to being so tired you cant even wash your hair.

Just because I have ME/CFS after Glandular Fever doesn't mean that everyone will, but it may be possible and its best to know when to know your GP may not be helping. I keep thinking I could have been feeling this much better a year ago, but we'll never know!

There is a lot of help out there and now, after many phone calls to my chosen university, I can start university in September knowing that I will have help at the ready if I need it.

Although I will never be rid of ME/CFS, I will be able to manage it, the bad bouts will become less and less frequent and not last as long, and the good bouts may last longer! It's going to take a while, but I feel like a weight has been lifted now I have been diagnosed! I feel so much better now I know why I feel like this. 

Helpful Links

www.fatiguewise.co.uk  < Dr Mukherjee's webiste, very helpful!

www.meassociation.org.uk < The ME association

www.actionforme.org.uk < Action for ME

Again, I urge you to see the doctor if any of this sounds like you.

Thank you for reading and I hope this helps someone out there!

Any questions, more info email me: 

livyx@live.co.uk 

Olivia xxx

The Story | so far

My Story (so far)...

I'm a 17 year old girl, I hope my story can help someone.

-

I was first diagnosed with Glandular Fever (infectious mononucleosis) on 21st February 2012. 

Although this wasn't just out of the blue. I had been struggling for about 8 months previous, from about June 2011. I really started to notice something wrong with myself around December 2011; before that I just thought I was being a moody teenager - being tired all the time, moaning, feeling generally unwell etc. In the December time I was literally just dragging myself through college on a daily basis feeling sorry for myself. I knew something needed to be done, when I got my exam results back and got a U. I had never had a U before and that sent me on a downward spiral to start with, I didn't want to go in college, was thinking of quitting, couldn't be bothered with anything - again everyone just thought I was moody.

January 2012 came, and I was still dragging myself along, although surprisingly feeling okay - what I didn't know was that this was the calm before the storm. Then it was February... I remember the day really clearly, I had been complaining of a sore neck and thought I was getting a cold or something. OH was I wrong. 

18th February - I was sat on my bed, and my mum walked past, I said that my neck was sore, as I touched it I felt some lumps, my mum looked and was worried. We went to the NHS walk-in centre and the doctor said it was infection due to my piercings which I didn't think was right, he gave me some Flucloxicillin (an antibiotic) and I went home, for the next few days I took them, I started to feel slightly better.

20th February - I FELT GREAT! I was whizzing around college, but also I was sweating SO MUCH, I was sooooo warm. I got home and I genuinely thought I was melting, I got a bath and got in bed at like 6 o'clock. My mum rang NHS direct and they told her to get an appointment at the doctors as soon as possible the next day as they thought it was some sort of virus. I had a rash, a temperature, my neck/head/throat/face was swollen, I couldn't swallow ETC.

21st February - My Grandma took me to the doctors and we sat in there all morning. I saw a doctor I had never seen before as it was the only appointment I could get. They did blood tests immediately but the doctor was already pretty certain it was Glandular Fever. 

I had HUGE lumps on the right side of my neck, the back of my head, I couldn't lift my arms properly or even walk properly. My tonsils were WHITE with some sort of infection or something, and my face was HUGE. My face was swollen, and to be honest I have never felt worse. She gave me some more antibiotics (I'm not sure what :\) and some ibuprofen for the swelling in my neck/tonsils and two paracetamol every 4-6 hours. I went home and the next few weeks were a blur.

Things I do remember are...

- yawning and coughing then crying because of the pain.

- sweating in my sleep to the point of my t-shirt been soaking.

- pains in my head, headaches.

- having no appetite AT ALL.

- sleeping ALL of the time.

- craving random foods.

- my abdomen swelling up and being sore, which was my spleen (which can happen).

When my abdomen swelled up, I was worried, I just thought I was bloating due to all the medication. Infact it was my spleen swelling up. My mum rang up emergency doctors and the on call doctor came out. My stomach was sore but not excruciating - but enough to worry me as I had read that your spleen can burst; although that is very rare. He said it was just my spleen swelling up, but he didn't know why. That went down within a few days though.

-

Symptoms (not exhaustive); 

- extreme tiredness/lack of energy

- swelling of the face/neck

- lumps on your glands in your neck/underarms

- white swollen tonsils and tongue

- trouble swallowing

- 'heavy' limbs; for example I couldn't wash my hair without my arms aching

- being VERY warm, sweating, then being cold

- temperature

- swollen abdomen

- swollen eyelids

- feeling sick

- weight loss/no appetite

I ended up being off college for 2 months, and only went back because I wanted to sit my exams. 

My advice to anyone who thinks they might have Glandular Fever would be to go and see your doctor and ask for a blood test. If you already have been diagnosed, I feel for you I really do.

I'm not going to lie and tell you that it will all be over soon, because a year and 4 months on (June 2013) I'm  still suffering. The symptoms will go, the tonsils, sweating, achey-ness, temperature, swelling etc, but the tiredness stays. The only thing I would say is SLEEP, listen to your body, if your tired, go to bed. 

While I was at my worst, I probably slept for about 3/4 of the day - not ideal, but it made me feel better.

-

June 2012 - I had lost about 2 stone in weight and I looked weird, I wasn't happy with how I looked or how I was feeling. I was diagnosed with depression, common after a chronic virus/illness, as, mentally, I wasn't feeling any better by this point. I still had my friends around me and my was finally with my now-boyfriend :). I was put on Fluoxetine 2 x 20mg a day, which to be honest I was upset by. I didn't want to be classed as depressed. The combined effects of the antidepressants and the glandular fever made me confused and I was struggling. I kept mixing up my words, forgetting things and just being generally confused which isn't right for a 17 year old. I went on a slight downward, spiral of depression from there on in.

September 2012 - By this point I had kind of given up hope that I would ever be better - the problem was I hadn't come to terms with it. I had lost friends, wasn't particularly interested in doing anything, had VERY bad anxiety, and my depression was still the same.

My advice if you do find yourself feeling like this after Glandular Fever is accept it; I know it's hard to read but you have to just let it run it's course. The worse thing you can do is try to fight it. I do know how hard it is and I understand, it isn't by any means a quick process, it gets boring and tiring and you want to give up, but don't!

-

January 2013 - I was feeling better, I had been to a New Years Eve party, stayed up until 3 o'clock (BIG achievement for me, as I was in bed by 10 most nights) and I actually had a good time. I had a alcoholic drink which I wasn't particularly supposed to do on my tablets. I was so proud of myself! Thing seemed to be finally looking up. The next couple of months I felt fine, I was still tired all the time - exhausted after doing anything but I actually felt marginally better. My dose of antidepressants had been lowered to 20mg a day and I wasn't as down. I was so happy, I was planning things again, going out with my boyfriend and friends actually being able to feel awake in college and do my work. 

April 2013 - Towards the end of April the novelty of feeling slightly better wore off. I realised that I was only not as tired, and became more depressed again. Basically I was just giving up, I didn't want to be ill anymore I wanted to be a normal 17 year old; going out, applying for uni - not staying in and going to bed at 11 o'clock on a Friday and Saturday. It wasn't just affecting me anymore it was affecting my relationships; my boyfriend, my friends, my family. I felt like no one understood anymore and everyone was getting sick of me feeling sorry for myself and being unwell.

May 2013 - I decided enough was enough, I hadn't really stopped crying/feeling sorry for myself for about 6 weeks now. I had a day off college and rang the doctors. I wanted to see someone and I wanted something done. I couldn't do it anymore I wanted to be normal!

I went to the doctors and saw a completely different doctor to who I had been seeing previously, I burst into tears in the room and begged him to sort me out! (awkward :\!) He upped my dose of antidepressants to 2 then 1 on alternate days to see how I felt. Also he arranged for blood tests to be taken in the middle of June checking for diabetes, vasculitus, anemia and anything else they find. 

June 2013 - Its now the 1st of June and I'm still not feeling 100%, it has by far been the worst year+ of my life but also one of the best as if this hadn't of happened maybe I wouldn't have ended up with my boyfriend :). I'm worried about my blood tests but also just want the results and to know what is wrong with me, because anything they tell me now will be better than nothing. I'm still not feeling great, I feel generally unwell, I can't sleep properly - SWEATING SO MUCH :(, I'm still quite down and sometimes confused; but now I am just waiting for results and something to be found or anything!

-

My advice now;

- Don't bother with alcohol, it makes you feel 10x worse.

- Listen to your body, sleep when you need to etc.

- Remember that it will be over, and my case of Glandular Fever has lasted for longer than some that I have read, so this might not happen to you.

- You will get through it, it just takes a long time.

- Don't give up, I did and it made it worse.

- Get a blood test, if you think you might have it, it could be something else - it won't hurt to check.

- Glandular Fever can take a very long time, it can just be a tonsillitis-y thing, but can also last for years, sometimes never leave (worst case scenario).

- Vitamin B foods, foods high in iron and healthy eating does help - being healthy is the best thing you can do.

- It can lie dormant in your body for months before it comes out so if you are feeling extremely tired, achey and generally unwell go and see your doctor.

- Don't be embarassed if you think you have depression afterwards, it's very common after chronic illness, and happens to lots of people with Glandular Fever.

- Glandular Fever is common in teenagers, so if your missing out on something try and think that one day it will be all over and you will be able to do those things, there is a reason why you can't at the moment and that is the Glandular Fever!

- Google-ing Glandular Fever will help you find out more and also find forums of people in similar situations - this made me feel better, that people were going through similar things.

- Accept help! Don't try and go through this alone.

Contact: livyx@live.co.uk if you want to talk, I know what you are going through and I know how hard it is, even though I am still not better I will be one day, and so will you.

Hope this helped anyone going through the same thing as me

Liv xxxx