How did your ME start?: It would be interesting to... - EDMESH

EDMESH

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How did your ME start?

edmeshscot profile image
edmeshscotEDMESH

It would be interesting to know how many devleoped ME following a virus as opposed to a gradual onset. Mine started after contracting chickenpox, and failing to fully recover.

How about everyone else?

23 Replies

My first episode of what was called Post Viral Fatigue Syndrome ( PVFS) was after a bout of gastroenteritis. I improved enough to go back to work but was never fully fit. A number of years later I had flu but never got over it and had a major relapse. Was told that I had been in remission

My first episode was also PVFS following a simple flu type virus. I was at Uni at the time and rested as much as I could, my health picked up and eventually seemed a lot better. Then about 2 years later I had to have surgery and it triggered a massive relapse that was about 3 years ago now and I have ups and downs but I have never recovered.

Mine started with a flu virus, that was over 2 years ago and still not recovered from it. I have my good days and bad days but i any determined that it will not beat me.

I had just returned from a holiday and felt unwell. My GP said I had flu. Four months later I was still feeling bad and this time saw a locum who suspected I had M.E. However my GP thought it was "all in my mind". In the end I paid for a private consultation with a Virologist who started a series of tests. A year later I was finally diagnosed with CFS/M.E. I was unable to work for 16 months but then managed to return to my job on 2 days per week. All of that was about 10 years ago now. Still working 2 days a week but need the others to recuprate.

Just after getting home from hospital having given birth for the third time through caesarean section I came down with a sever flu like illness, so bad the Dr. even made some unheard of home visits and considered putting me in hospital. I got better without going to hospital, but it took a while and I immediately noticed that I was left with arms which were constantly sore and got more painful when I walked. It was strange that my arms got sore while using my legs! I wasn't able to lift or carry my baby like I had with the other two, even though he was the lightest of them! I tired easily and started to have stomach problems. In other words, I never recovered from that initial illness.The Dr. kept telling me that it was just because I had three young children, but I knew it wasn't the same kind of tiredness and didn't explain the arm pain, but he said that was because I had put on a little extra weight even though I wasn't very heavy then! It took 5 years before a Dr. eventually told me that it was probably M.E. but in that time I was given so much bad advise by the medical profession the condition had become chronic, through trying to follow it :-( It has continued to gradually get worse with sporadic crisis episodes for the past 24 years. I have tried to go back to work several times and later tried volunteering to see if I could manage, but each time was short lived and disastrous to my health.

19cookie74 profile image
19cookie74 in reply to Enquiring

same here mine started after the birth of my first child by emergency c-section. took years to diagnose tho

I had a sickness bug 2007. I returned to work but never felt right. My manager was concerned so i returned to gp. Diagnosed with depression, started on citalopram and signed off work. I continued to feel terrible, poor balance, pins and needles, problem with my eye, other symptoms but worst of all a tiredness i had never experianced before. I went back to my gp and told her i felt no better and was sure i was not depressed. She took blood. It came back that i hadCoxsackie b virus. Since then i have good days and bad days, more good at the moment. I tried to return to work after a year but i was exhausted. The same manager said to me if i didnt slow down id be on long term sick again, how right she would have been.. So i reduced my hours to 30 per week. It is managable as i work 8 to 2.30 mon to fri so can sleep after work if need be. I had also had meikle therapy which was my saviour. I dont think i will ever be 100% again but im ok considering.

One of my daughters brought a sickness bug home from school which we all got, it was a particularly nasty violent bug, but because the children were also all ill I had to keep looking after them even when I was sick. I noticed after the children were better I still felt very drained and weak. Then a week later we had visitors who brought a sickness bug with them; again, we all caught it but I think because I was still run down from the last one I just felt as though every part of my ached and it didn't stop when I was resting.

Then the week after that my daughter came home from school with a cold which she passed to the rest of us. Mine turned to a chest infection and I felt so ill I went to the GP and collapsed. And it's just been downhill since then really. I'm so sorry anyone else is going through this but it is reassuring to read about other people' experiences and know I'm not alone!

Hi

My ME began with a flu type bug that I had and tried to work through, in the end it got so bad that I just couldn't get too work and after a week or so I had my first visit from my doctor who prescribed some antibiotics. They finished and I was still bad and after a month of being mostly in bed my wife managed to get me to see the doctor. That cost me dearly I was sweating and exhausted totally by the time I got there and that was only getting dressed and getting in and out of the car and walking from the car park to the surgery. again I got some antibiotics and was sent home.

After the third time the doctor started to pay attention and did various things, blood tests, urine etc. and eventually I had a spell in hospital where they were monitoring my blood, temp etc. and a doctor who was visiting another patient was watching me and had a look at my notes and told them I had ME, He new because he also had it and they gave me the diagnosis and sent me home.

This is the basics as I have been told by my wife as I was out of it most of the time, either to tired or in too much pain to pay attention.

I have mostly gotten over it through the years but as my doctor keeps telling me it will never go and after I had pneumonia everything has gotten worse through being laid up for a week or more.

Anyway that is the short version of my illnesses.

Kindest regards

Terry

I was working in a school and I got a bad throat infection on the last day of the Easter holidays six years ago. I tried going back about a month later but was too fatigued and dizzy. I never went back again.

Just over 2 years ago, I notice I was so exhausted from my work as a community carer. I would fall into a deep sleep that I found hard to awake from & never feeling refreshed no matter how many hours I slept. I contracted virus's & infections very easily & seemed to suffer worse & longer than others. I found physical activities painful & at times would cry with the pain. One day at work I knew there was something not right I hurt like something was pulling at the muscles in my neck & down my right-side of my torso . I had a numbness in my face & left thigh muscle & a headache that felt different from anything I'd had before. That morning it was dark & raining & my eyes weren't focusing causing me to be blinded by vehicles headlights.

That was 2 years ago & the start of a long investigation by medical professionals to find a diagnosis. I felt fear,doubt, frustration, & at times suicidal. I noticed people around me also doubted me & my wide spectrum of symptoms. My IBS is worse, I have ended up in Hypertensive crisis, I'm suffer both stress & depression. I don't know, what came first or how long I have had CFS all I know is looking back I may have suffered for quite some years & passing it off as age related. I'm 51 for a while excepted this as possibility the onset of menopause. I am still having regular periods which are heavy & extremely painful. I seem to get cold-sores on my mouth every month & have recurring sore scabby nostrils that bleed.

When I have been physically active & my muscle fatigue then this causes the muscles to tremor. My concentration is poor & I have gone from being good with words to almost at times dyslexic.

I have finally got a GP who seems to understand & has referred me to CFS clinic at James Cook Hospital. I now see the specialist nurse although I seem to have done all the the necessary research into learning to understanding CFS.

I still have days when I worry that it could be some other disease that has not been diagnosed yet. I still over do things & suffer the consequences. I would rather hide away than let people see me at my worst. but I'm coping with the help of a caring husband & the small network of friends & family that believe that this is a true debilitating illness, even though an ATOS review deemed me fit for work????

dmadeleine profile image
dmadeleine in reply to retsof

My muscles also tremor and it is so annoying! I also prefer not to let people see me at my worse, I find that when I do it prevents me from doing things with them as they worry I will get like that again. I don't think I would be able to cope without my family as lots of people doubted my symptoms too (which was very frustrating, also with me being a teenager doctors have a tendency to think that I will exaggerate the severity of my symptoms) I think the fact the ATOS review deemed you fit to work was appalling with the symptoms you just described. I wish you the best of health for 2013 :)

BlueEyes profile image
BlueEyes in reply to dmadeleine

Please do not hide away, you will learn of your symptoms and what is your limit. If you go out you just need to ensure you have a seat, take snacks, talk to your friends educate them of your symptoms. Even if you only go out once a month, if they are good friends they will support you. Have you been tested for benign essential tremor? From the beginning of feeling ill I felt my head wobbly, and when fatigued have a tremor in my hand, which when really bad goes into my head. A neurologist confirmed essential tremor for me. Keep a diary of when you have tremor/and your symptoms - it can help when you look back at days when you a bad or days when you are better. Take care

Flu virus, and never recovered. It's strangely reassuring to see that this has happened to other people (it's obviously not good that you have it too, but ME can seem so random at times!)

In May 2010 i suffered from a big dental abcess on the right side of my upper gum. It almost felt like it was on my cheekbone. It made me really ill. I have never fully recovered and I truly believe the abcess was the trigger for my M.E

Hi Chrissy, Dental abcesses tend to happen when we are run down. It could have been that you had a virus, but were just pushing through it (as we all tended to do pre ME days). My CFS/ME happened after a viral cold in the November, followed by full blown flu on Hogmany 2002, after nursing my 3 children with flu. Initially I went back to work and I was not right, by March 2003 I was off work for 11 weeks with post viral fatigue. On going back I stupiday went back full time without a step up, and 3-4 months after struggling at work and home ended up totally crashing and being off for 4 months. After learning to pace, I kept reasonably ok, with symptoms worsening when I overdid things. However, I also deveped a tremor in hand initially, but worse when fatigued, and felt it in my head, becomming visible when I had done too much or felt faint. By 2006 after the stress of organising my wedding (re-married) I relapsed prior to the wedding, and it was an ongoing struggle at times. By 2007 had really bad year workwise due to vertigo, but it was 2008/9 before dx with benign positional vertigo. This was the decline in my mobility and by 2010 I had pensioners overtaking me. Working p/t with a 28 mile drive there and back left me totally stiff, difficulty getting up from sitting and walking really slow and stiffly. I have a walking stick for balance, stiffness, as sometimes my legs will just buckle from under me.

However, I realise from your reply to my post that your mobility is more severe than me. I can manage about 25 metres but have to stop and start. I do not tend to go out much unless I can park beside shops. I have recently gotten a mobility scooter after being awarded high rate DLA for mobility and it has given me so much freedom on good days when I feel able to go out with my dogs/ or even just a walk with my husband. :O) Take care, and hopefully your symptoms with lessen or become more manageable.

Thank you blue eyes for your reply. I too bought a mobility scooter about 6 months ago. And yes i have gained some freedom a independence back which in turn has given me some of my confidence back as well. I couldnt rely on my husband to push me about in my wheelchair as he suffers from a back condition.

I still have times where i cannot accept i have this condition which changed/affected my life beyond recognition, as i am sure it has done for so many of us.

I was told by my O.T to close the book on my old life and re-adapt to my life as it is now, As if we have a choice.

Dont get me wrong i know there are so many people out there far worse than me and i really do try not to feel sorry for myself and get on with it, but some days are far far worse than others.

Its good to be able to talk to other sufferers, which is something i hadnt done until making myself a member on here. It helps. Thanks for sharing your story. Take care and will hopefully speak again soon xx

mine started when I was a child during sexual abuse, it has been manageable at some times in my life but now its taking over my life. Allow myself to rest when I need to but also kick myself in the ass when I have rested too much, hard life to live but we have to balance resting and living a life and thats the difficult bit. I also had fibromyalgia and find the pacing advice given for that condition helps but sometimes going to sleep for hours is the only way to cope xxx

Yep. Post-viral.

ye mine started after bad dose of tonsolitus (not sure if spelt it wright lol) had it nine years now just going through bad patch in bed sleeping most days,means no drink or food.any sugestions how to keep fluids up.

I never refer to M.E as 'mine or my' because to do this means I own it and makes it harder to get rid of. M.E. began as a result of five years of work place bullying and eight years of bitchcraft from a local woman who was jealous of my relationship. Sad but true. It began by anxiety, making mistakes, forgetting things, repetitive thoughts, waking up with repetitive thoughts, fear about making mistakes, and so on. This began about two years ago.

Hi All

Way back in 1989 I had a bad cold and had a couple of days off work, when I thought the cold had gone and I would go back to work it just did not happen, I lost nearly a year of my life with sleeping and hospitals and being so ill I thought I was going to die but did not care if I did.

It took an awful lot of help from my family and my determination to overcome and get to lead a 'normal' life.

It was on one of my stays in hospital that I was diagnosed, a visiting consultant was checking in on one of the patients on the ward I was staying in and somehow I came up in their conversation and he looked at my notes and spoke to my doctor and after a few more tests I got the diagnosis I had M.E. this was when it was not really recognised as an illness and called 'Yuppy Flu'. I have been lucky in that all the doctors I have seen over the years have known and believed in M.E.

Unfortunately it kicked off again a bit, a couple of years ago when I had pneumonia, and I am having a daily fight with the M.E. as well as Arthritis, I have had cervical spondylosis since I was 28 and I am now 64, had two operations on my neck for decompression of the spinal cord.

That is my short story, the long one is a book.

Take care and kindest regards

Terry

From digging the garden the day before I woke the next day in sheer agony (18.01.14 ) It was like the worst flu you could ever imagine. Since then my condition has plummeted . I have never had any reprise. I am now totally bed bound and on Morphine ,Codeine ,Neurophen and Paracetamol. But they don't cut the pain which is now all over. Doctors refuse to see me now , once I was diagnosed with ME. The Warwick pain clinic told me to commit suicide as they would not help, they could, but refuse as It is too much trouble. I am not making this up, I can prove every part. I cant walk now and have trouble breathing. Absolutely no help.

In fact the doctor said he would sit and watch me die rather than lift a finger to help as he insists he is overworked. I don't suspect you believe me. Every part was witnessed by my family and every word.

Anybody else been treated this way ?

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