August 8th, 2016: Understanding and Remembrance Day for Severe Myalgic Encephalomyelitis
Jody Smith joins with other ME voices in honor of Understanding and Remembrance Day for Severe Myalgic Encephalomyelitis.
Discuss the article on the Forums.

Please tell me about the day you got CFS

Discussion in 'General ME/CFS Discussion' started by douglasmich, Jan 23, 2016.

  1. douglasmich



    i am interested in hearing members personal stories about their CFS/ME journey. For example how it all started, what happened and how you are now many years on.

    For example were u fine one day then next day had CFS

    rosie26 likes this.
  2. JAH

    JAH Senior Member

    San Jose
    It was the third Tuesday in April 1987. I had to go to work around 10-10:30, so not early. I overslept, because I was feeling sick - sore throat, headache, tired. I thought I was coming down with the flu. My roommate had been sick.

    I've never been the same since. I was fine on Monday.
  3. Firefly_

    Firefly_ Senior Member

    Oklahoma, USA
    Mine wasn't a particular day per se. Middle of December 2014 busy busy and just got this rundown feeling that got worse and worse then brain started collapsing, light sensitivity, balance issues, other small weird symptoms. Dx with Cfs by end of February and by end of March was completely bedridden. No apparent viral onset or any lightning strike with mine.
  4. RUkiddingME

    RUkiddingME Senior Member

    Mine started in September of 2009. The best year of my life until the Fall. I caught a nasty sore throat in August. Worst I ever had. I had been going to boot camp exercises classes and could no longer run a flight of stairs. in September I had severe insomnia for three weeks straight. Afterwards I had trouble lifting my feet off the ground when I walked. I continued to work part time and sleep the entire weekends. Ten months later I needed a wheelchair.... I have not been able to work since June, 2010. Diagnosed with reactivated EBV and HHV6
  5. Daffodil

    Daffodil Senior Member

    kissed an ex who was sick. got mono. never got well. fall 1993
  6. Kati

    Kati Patient in training

    Contracted mono age 39. Exposure is pinpointed to saliva from a cancer patient that landed in my mouth as I started an IV on him. Previously healthy and very physically active. On a Monday I went to work as usual but
    I was exhausted. i had trouble concentrating and felt like a horrible flu was coming. I told my manager I had to go home and she was so pissed off, but nothing I could do.

    I spent the full week in bed, and the respiratory signs of a flu like illness never came despite having a horrible sore throat and swollen and sore lymph nodes. i went to my dr and tested IgM positive for EBV, IgG negative. A few weeks later I developped sludge in the gallbladder, but no stones, with elevation of liver enzymes. I required pain meds for that for 2 days.

    i never recovered, and 2 attempts of return to work failed.
    3 months after infection, I had another gallbladder attack and ultrasound still showed sludge, but They also found a large ovarian cyst, 8.5 cm diameter which I never had before.
    4.5 months after infection I had the mother of all gallbladder attack, with pain and fever, which sent me to the hospital for 2 weeks. The GB had necrosis focci but still no stones were found. It was removed via 'the zipper'.

    3 weeks after surgery, I started having neurological signs, namely orthostatic intolerance, major depth perceptions issues (which made driving dangerous) (this lasted for 2 weeks and got better), post exertional malaise,and light and sound sensitivity. It was terribly confusing because my dr thought I was depressed and she could not make sense of my symptoms.

    About 10 months into my illness, I developped chest pain and shortness of breath on minimal exhaustion.

    It's been 7.5 years now, I have been diagnosed with POTs and ME and hypothyroid. NK cell function as low as 4.9.

    The ME experts I have seen say I have a classical presentation.
  7. ahmo

    ahmo Senior Member

    Northcoast NSW, Australia
    I had a severe flu-like illness following 50th birthday celebrations. At the time, it seemed like my liver had been overwhelmed by the rich food, alcohol... But I never fully recovered. This is when I started researching CFS. I eventually labelled myself chronically fatigued. 3.5 years later, still not really recovered. I travelled to Europe during what came to be the 2003 heat wave. Heat + emotional/physical stress -> collapse. ME had arrived. It wasn't until at least 2 years later that I understood that pushing myself to exercise was not going to help.
  8. hellytheelephant

    hellytheelephant Senior Member

    S W England
    1993:Had flu and chest infection, was given antibiotics, then more antibiotics, then had a tetanus jab. Had ME moderate to severe for 8 years, mild for a few years, then moderate to severe for last few years.
  9. daisybell

    daisybell Senior Member

    New Zealand
    Caught parvovirus, and had lots of joint pain initially from that. Fatigue gradually crept up on me, and the other symptoms have followed over the years... Plus two other diagnosed autoimmune conditions! Also had exposure to the waste chemicals of meth manufacturing thanks to a neighbour, which definitely accelerated the decline and gave me dreadful brain fog. Now in my ninth year of symptoms.
  10. erin

    erin Senior Member

    Hi everyone, my first message here. I am not a native English speaker, apologies in advance for the mistakes.
    I had chicken pox 2004 age 34. My life has not been the same after that day.
    I had several flu like attacks shortly after a very heavy and long chicken pox episode. Within a year I could not function the way I could and I had to go part time at work. My GP had lots of tests, she told me all the results were normal, but she added that I looked so sick and she could clearly see that something was not right. She did mention m. e., she also said there was no cure and diagnosis was very difficult. She asked if I wanted to be referred to any alternative route. I had homeopathic treatment in the past and I asked to be referred to the Homeopathic Hospital.
    Homeopathic treatment was useful to manage my condition at first. But I begin to have severe lapses and homeopathic medicine was not somehow enough to give any relief. My initial symptoms were mostly frequent infections, vertigo, numbness of the limbs and unusual fatigue now begin to shift to a heart condition type of symptoms. Homeopathic specialist also sent me for brain mri and a leg emg, ms was ruled out.
    Eventually, I developed severe tachycardia, ibs symptoms, B12 deficiency, Hashimoto's thyroiditis and recently herniated discs on my neck.
    I am finding very difficult to cope and I don't know what to do with myself. On top of all, I feel very upset people's comments about my condition. Or actually their inability to see and understand that there is a condition making me ill. I have trained my self so hard not to affected by them but still, I'm not completely immune to these kind of comments. I feel that I'm run out of patience.
    I believe I am a classic m. e. case. Concluding my story, I have been on beta blockers for the last 3 years and B12 injections every 3 months since a year and a half. I try not to take any other medication. Though recent herniated disc episode I had to take loads of anti-inflammatory injections and pills, muscle relaxant pills and a cortisone injection. I must admit, to my surprise I have benefited from these medications. I don't know how long will this last. I feel the effect is slowly wearing down.
    Last edited: Jan 24, 2016
    Battery Muncher and roller like this.
  11. Kati

    Kati Patient in training

    Hi @erin , welcome to the forums. i understand about other people not understanding. Many if not most of us here have had this happening. Do you figure that you never had chicken pox in your life?

    Your english is great! Best wishes!
    erin likes this.
  12. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

    Toronto, Canada
    August 9, 2012 woke up with deep fatigue and what I now recognize as post-exertional malaise.

    Started to recover after 4 months, another 4 months for symptoms to completely disappear. Relapse Dec 2013 for 2 months, another relapse Dec 2014 - housebound for a month spring 2015, now back to 'moderate'.
  13. Old Bones

    Old Bones Senior Member

    Background: August 1988 - backpacking in Canadian Rockies; September 1988 - cycling through Gulf Islands off Canadian west coast; early-October 1988 - full-time employment, enrolled in university upgrading courses, volunteering -- abundant energy and endurance.
    Sudden Onset: Weekend of October 8-9, 1988 - babysat two sick nephews as a treat for sister and brother-in-law;
    October 10, 1988 - became ill with same upper-respiratory infection. Did not rest due to work commitments. Respiratory symptoms gradually improved, but left with extreme fatigue, low-grade fever, and increased white blood cell count which persisted for at least one year. Neurological symptoms started appearing in late-November 1988.
    Gradual Worsening: January - September 1989 - number and severity of symptoms continued to increase. October 1989 - returned from three-week European vacation during which I "never recovered from the jet-lag" and almost completely collapsed. Still working full-time, but cognitive problems made this an extreme challenge. Life became working, sleeping and crying. November 1989 to May 1990 - exposed to toxic chemicals during a prolonged office renovation. During this period, deterioration accelerated.
    Diagnosis: Chronic Fatigue Syndrome - January 1990 by family physician; severe ME - December 1990 by ME/FM expert. Stopped working June 1990, and have not been able to return.
    Currently: Still functionally "severe", although over time symptoms have become more bearable if I "pace" appropriately.
    BurnA likes this.
  14. erin

    erin Senior Member

    Thank you for the welcoming.
    I only had chicken pox once in my life; I was 34. I guess as an adult this was a huge struggle to my immune system. I was never the same person after this.
  15. ukxmrv

    ukxmrv Senior Member

    Completely well and then wham - woke up one day with a terrible flu. Woke up isn't quite right though - my throat was raw, glands were swollen and I was unconscious /delirious for most of the time with a high fever and terrible sweating.
  16. wastwater

    wastwater Senior Member

    Acute onset 1994 EBV for me,day and night difference,hypothyroidism devoloped about 12 years later.
  17. Sea

    Sea Senior Member

    NSW Australia
    Acute onset EBV for me too. I couldn't make myself get out of bed to go to uni. Went to the doctor several hours later. Came home and slept for 24 hours straight. Never the same since.
  18. Aerose91

    Aerose91 Senior Member

    Went to bed one night in March, 2013 and woke up about 2 hours later with what i thought was a panic attack. However, i was violently shaking and it felt way more physical and i was completely seperated from my body.
    Over the next few days i started sliding into a coma but never fully went there. No one could find anything wrong with me on blood work so i was called depressed. Took 2 years to find out it was encephalitis and now encephalopathy. Feels like the encephalitis never left and gets worse with exertion
  19. Amaya2014

    Amaya2014 Senior Member

    Columbus, GA
    I had a live influenza quadrivalent vaccine and same day surgery for lipoma removal end of 2013. January 2014 I had a cold, followed by a slight flu. Started experiencing breathing problems while running and had a cold sore outbreak accompanied by a swelling in my throat sort of like a bullfrog and some mild fatigue. February I could barely run and had to stop altogether by March. Tests showed anemia, low WBC, elevated Lymphs and IGG. Then it was light sensitivity, dizziness/lightheadedness, joint and muscle pain, extreme fatigue, some weird electrical zapping sensation in my face and limbs, vertigo and tinnitus, headaches, heavy sweating, fingers and toes easily went numb from cold, cognitive issues, and vision trouble. By this time I was struggling to walk and I had to transfer all my patients to other providers. Right side weakness and numbness was significant early on.

    Now I mainly deal with fatigue and weakness when I over exert, joint and muscle pain, menstrual problems, difficulty sleeping, IBS, headaches, heat and cold intolerance, cognitive impairment, and occasional bouts of vertigo and tinnitus.
    Last edited: Apr 2, 2016
  20. BurnA

    BurnA Senior Member

    Background : 39 yo very active, cycling long distances and gym.
    Onset April 2015 : I have a tickle in my throat. Next day slightly worse and i feel a bit tired. Nothing to be worried about so I go cycling after work. Next morning feel awful. Over the next two weeks the sore throat is the worst i have ever had but no fever and no chest infection. Some nasal congestion. Then about 3 weeks after initial throat tickle i feel fine and go on a big cycle to celebrate that my infection is gone. A few days later i feel a bit off, but go to the gym. (I remember this clearly because it was strange to me that i would feel off so soon after my 'viral' infection had gone) Next morning I can't get out of bed. I struggle through the next few weeks just thinking i overdid it. I suspect a sinus infection as headaches are now a daily occurrence. 4 weeks of antibiotics doesn't do anything.
    MRI, CT scans and bloodwork don't reveal anything.
    Diagnosis : I diagnose myself before visiting an immunologist who tells me to try GET/CBT. Cardiologist subsequently confirmed POTS but no other heart/ blood pressure abnormalities.
    Currently : One year on I am still working full time but everyday is a struggle. No activity outside of work. Lie down most of the weekend. Current symptoms are PEM, POTS, Fatigue, Unrefreshed sleep, light and noise sensitivity.

    ( FWIW I got a flu vaccine Nov'14, first one ever so i remember it )
    Rvanson likes this.

See more popular forum discussions.

Share This Page