Join Date: Apr 2007
Constantly sick for a decade, new diagnosis of CFS. Looking for support I guess?
I was diagnosed with CFS on Wednesday, and I wanted to share my story and see if my symptoms are like anyone elses on this board. Sorry for how long it is but I really wanted to get all the facts down while my brain is on that current train of thought.
So I'll give you a few facts about my past health. When I was 9 I started going to the doctor about headaches, and it was also the first time I remember getting pretty sick with a lung infection. The headaches and chest infections have been constant since then, I'm 18 years old now. I was pretty okay from the ages of 11-13 except a visit to the E.R with unexplained stomach pains and swollen lymph nodes, but then when I was 14, was diagnosed with Panic Disorder/anxiety after I randomly started suffering panic attacks before I went to sleep. I pretty much only went to school 2 days a week, other days I was too tired, or felt too unwell. This is the first time I can recall feeling extremely fatigued. My mother was at wits end trying to get me to go to school, but I either had a headache or a sore stomach or I just couldn't get out of bed in the morning.
Then, in 2009, I started getting sick even more frequently. I had a few colds and chest infections at the start of the year, but the headaches worsened. I started getting headaches that lasted 2 whole weeks, then none at all for a while until another attack. In June, I came down with a chest infection, my whole group of friends got sick because we spent so much time in the same room together, but they all recovered. I spent the next two months coughing my lungs up and had a lot of time off school, in that time me and my mother, who had just been diagnosed with cancer stayed at home and looked after each other. I was told I had bronchial pneumonia after I went back to the doctors when I didn't get better.
2009 was also the first time I got the debilitating symptoms I experienced again this time. I'm not sure what time of the year this happened, but I think it was about September, I got a severe headache in the back of my neck/head, a sore throat, and I essentially spent two weeks in bed, and when I did go to school I would sleep, or come home and fall asleep for the night straight away. I don't remember much of that particular time or illness, except for walking up to the pharmacy with my dad to get some painkillers and laying in bed sleeping a lot, and my bloodwork came back showing high levels of infection, around 75, when normal was 2. I think.
My grades also started to drop around 2009, I'm very talented at English and spelling and previously used to be a great student, in 2009 I stopped applying myself almost completely.
2010 was similar, aches, pains, sickness after sickness, I only went to school a few days a week and hardly participated in physical activity. I got brain scans, sinus scans, chest xrays, blood tests, they went to every length and found nothing significant to explain why I was always sick. The guy I was dating at the time, who I dated from 2008 til about 6-7 months ago, became distant (he had his own issues, depression ect, we fought a lot and he contributed to a lot of the stress issues I face today) and he was frustrated with me constantly complaining, leading me to believe I was a hypochondriac. So I usually let a lot of health issues go untreated after that.
In 2011 I started my second last year of high school, and my mental health and physical energy was so bad that I could only cope with the demands of VCE for a month before I had to move into VCAL, I only went to school 3 days a week and started a part time job in a restaurant, but I struggled to excel in the workplace and constantly was put down by my boss due to my 'lack of being able to learn when he taught me things' (Even after working there for a year, I still hadn't memorized our 3 set menu options). I struggled from self confidence problems at this time due to pressure from my relationship, my job, school, and my parents who just didn't know what was going on anymore. I was just always sick, I caught everything.
In about July 2011 I came down with a flu that turned into a chest infection in August, and I didn't fully recover until about February this year. I also ended my relationship in December due to the stress it caused me mentally, and started seeing another guy and my living situation changed quickly after that. I went from being alone all the time to constantly being around people so the stress just came from a different thing now. Anyway so after I recovered from the chest infection, I started getting pains in my stomach, awful awful pains that made me have to sit down, they only lasted a week, apparently they were caused by an iron deficiency.
I got tonsilitis earlier this year too. Then I got fired. More stress, stress, stress. Then I got a new job 6 weeks later, relief. Then my boyfriend started coming down with a flu. So of course I got it. I went to see a doctor, unfortunately my regular doctor was away. But this guy was terrible, "Yeah seems that it's a flu you'll be better in four days or so."
Two weeks later renovations started on my work and I worked myself much harder than I should have while I still didn't feel well, and the 'flu' was more like the virus from hell so I went back to the doctor. He saw me for 5 minutes, gave me an antibiotic prescription and sent me back out, saying it was a virus, get some rest and I should be fine.
After 5 days of work I had a week and a half between 5 days. For that week and a half I felt much better physically, but I was still tired all the time, and my biggest problem was brain fog. At work, as soon as I started getting rushed at the registers, brain fog would hit, I would get the chills (did I mention I never got fevers from 09 til this virus and my body temperature is generally at 36 C when I wake up) and shut down. I went out the weekend after the first week off, and last Sunday came down with a sudden sore throat, and that same damn headache that I remember from 2009, in the back of my neck.
I went back to the GP once I had time off work again and he assessed the state I was in, which was swollen, pus-filled sore tonsils, headache, sweats, lack of good sleep, general unwellness, fatigue, and weight loss (I am only 153 cm and I was 45 kilos on Wednesday when I went to see him, I was 50 at the end of last year) and he concluded that I had CFS.
After looking up this disease I feel two things. The much talked about relief of FINALLY having a diagnosis, and then the concern of my seemingly deteriorating physical and mental health. Today, I woke at 7:30 after 8 1/2 hours of sleep, but then I felt tired again at 11 and slept until 4 this afternoon. I've been irritable, unsociable, sensitive to certain noises, and I've had a weight in my head I can't get rid of and dull aches all through my back.
The tiredness comes in waves that are almost nauseating, from my toes my head, and if I'm sitting on my laptop I will put it aside and curl up asleep on the bed. I also get a tingling, ticklish sensation on the top of my hands and through my arm sometimes when I use the laptop, especially on bad days like this. Also the boyfriend has come down with a bad cough which I seem to have copped as well. My main concern is the brain fog though, it makes me feel stupid and out of it and I get paranoid of what people are thinking of me and how silly I'm acting so I start to get anxious, but I've found fish oil tablets very subtly help that, as does a small amount of xanax (I've been taking xanax for anxiety for 2 years as well)
I just wanted to share my story, ask for any tips for someone newly diagnosed on how to go about seeking a treatment plan and figure out what I can do as of now? I worry that I'm going to lose my new job because I'm not performing well and was only just diagnosed on Wednesday - My workplace does not know yet. How do I go about bringing it up and getting them to understand that my strange behaviour is not my fault?
I mean, what are you supposed to do when you only just turned 18 and everyone is expecting you to be ready for life and to pay your own phone bills and financially support yourself and you can't even do simple things like calculate math quickly or remember where you left something, or get up and cook a meal or walk up to the shops to get something you need because you know you're just going to get too tired?