New here, I have a few symptoms and questions if anyone can help?

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A few week ago i went to parents evening for my kids, i bent down to pick my three year old up and when i tried to stand i had to push with everything i had it felt like i had just run for miles to my limit then bent down and picked her up, my legs turned to jelly and i struggled to walk.

It was totally random but the jelly feeling stayed for two hours.

Then a week later the same thing but just from walking up the stairs.

And now my whole body just feels tired and i cant do much without getting that feeling.

Up until yesterday i hadnt been to the drs in 10 years i just deal with being ill ive only had 5 days off work in 5 years does this sound like cfs? The dr wants to run a few blood tests but will this diagnose what my issue is?

Im starting to get worried, i have 4 children all 10 and under they dont need a dad that cant do vwry much we love days out bike rides running around playing football or bat and ball it will be horrible for them.

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  • Posted

    Hi Patrick

    CFS/me is a diagnosis reached after many other conditions diseases have been ruled out. There is no specific test for it , but blood tests , MRI etc help determine other things that may be the problem.

    Along with ruling out other things, there is a list of symptoms associated with CFS/me , and it is much more than just feeling tired . At least six of the symptoms should have been continually present for at least six months before CFS/me is considered.

    It is good your Dr is running some blood tests. There are infections such as glandular fever that take weeks even a couple of months to completely raise their head. One of the symptoms being lasting tiredness and loss of stamina. There are other symptoms too. Your blood tests will include tests that show up if an infection is present. And there is a specific test for glandular fever. You will also be tested for anaemia which if low can make you feel really tired all the time. Blood tests can also show thyroid problems , diabetes. Do you snore at night because sleep apnoea untreated causes extreme tiredness during the day to the point of falling asleep.

    Best thing is to have your tests and see what transpires . I have now had me/CFS for 21 years . had to take ill health retirement from nursing aged 38. But I would never tell someone they have the same disease. I would say though at the moment , that you haven't had your symptoms long enough to say it is CFS. Could be anything as tiredness is a symptom of many conditions. You need to consider any other symptoms you may behaving too. Pain, weight loss,short term memory problems, swollen glands, the list goes on.

    Hopefully you will get some answers and it is sometimes acute that can be dealt with effectively and you will soon feel better. I understand your worries having young children to care for .Hope this helps a bit . let us know how things progress.

    take care .

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    • Posted

      What I was trying to say is CFS is a diagnosis of elimination . sorry brain is shot with this thing and can't always think of the right words !

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  • Posted

    Yeah i understand jumping to conclusions is a bad idea but not eing able to move as i have always done scared the crap out of me.

    If im ill i sleep and the longest im ill is 2 days, in 5 years ive only needed 5 days off work i have never had any issues other than an allergie to penicillin.

    This is the moat scared ive been and not only that im having trouble concentrating im missing things at work. My other half can be tlking to me and i just cant comprehend a word i know the words i know what shes saying but it just doesnt sink in.

    Im an active person 4 kids 10 and under we bike ride play sports walk lots so out of nowhere not having the strength in my legs to bend down and pick my 3 year old up is really worrying me. I pick her up 10 times a day with no issues until that happened.

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    • Posted

      I competely understand patrick. One of my first really marked symptoms was not taking in conversations too all. Instantly forgetting and losing track. I actually thought I had early onset dementia to be to tally honest with you. So I do know how scared years u are feeling.

      Have you been tested for Lyme's disease.? The symptoms are very similar if not identical to CFS. I don't know where you are in the world . I am in the UK. It is widely contracted n the USA but is also increasing in the UK. I know a couple of people who have it.

      As I said before , other things need to be ruled out . is very important in case you have something that needs specific attention is and treatment. My intention is not to scare you further I am concerned you get the right attention and being realistic .I was fobbed off for long enough myself. Take care and don't be afraid to push your GP for a referral .

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    • Posted

      Just read your initial post again patrick. Doesn't sound like you had any prior infections or illness when you suddenly felt wobbly etc that evening at school. I really do think you need to push this with your dr. And as soon as you can. Please do this .take care.

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  • Posted

    Patrick - I also always went to work no matter how crappy I felt. I can also really relate to your post-exertion malaise.  I am currently on my 8th week off from work and I haven't gotten any better. I don't know how I'm going to go back. The problem with doctors, at least where I live, is that they are very uninformed about CFS, so if you think that's what you might have, really advocate and push to have everything else ruled out and then find informed doctors who can help you. Every doctor in my area, including my primary care doctor, a rheumatologist, and a neurologist, tried to tell me I was depressed (I'm not at all). This went on for months and I was really losing hope of ever getting help. I really had to keep insisting I wasn't depressed and this wasn't all in my head in order to get referred to the Mayo Clinic (where no one suggested it was from depression).

    I really hope this isn't what you have, but keep us informed.

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    • Posted

      I have I have replied to your other post abby. Pushing yourself is the worst thing to you can do. You need to listen to your body. Most doctors have little or no real idea about CFS.
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  • Posted

    Hi Patrick . I pretty much done same as you . Just pushed through . After 12 years of having me/cfs and fibro  . Working 2 jobs and not pacing myself . Had to give up work just over 3years ago . My whole body shakes much of the time and when I bend down find it hard to get back up . I saw  3 physiotherapist who all told me to pace myself . I didn't listen and pushed on through . I recon that's why I made myself worse . Pacing is really important I think . Just wish I had took the advise and used it  maybe same with you but I would seal to physiotherapist just to be sure . Good luck . X

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    • Posted

      I was the same Lorraine . but had to finish working much sooner than you did. It must have been so difficult for you. And yes you did yourself no favours. But you know that. I keep reading in other posts on this site people saying they are completely better . people who get better do not have chronic fatigue syndrome. There are many post viral fatigues and people do recover from them.

      Like you I also have fibro as well as the ME. Best wishes and I hope you can have some better days x

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    • Posted

      Hi Janet . It was extremely difficult for me to give up work . I was so independent and had just got married . (No longer married ) I do hear of people getting better . I've just got worse . I think it depends on what coused it at the start . For me it was glandular fever . In my late 30 's. Also took swine flu , which didn't help but recently I have just learned that the swine flu jab I had after it could have caused more harm than swine flu itself . God knows I've tried to put the pieces together for so long . No doctor wants to give me a straight answer . Best wishes to you 💜 I have seen a big change over past 3/4years with this desease . Can only hope . Xxx

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    • Posted

      My heart goes out to you Lorraine . I have winter vomiting quickly followed by four chest and throat infections . I carried on working but shouldn't especially where I worked but most of the staff had the same infections ! Paediatrics. Anyway I just felt worse and worse until I dropped. Tried three times to return to work. Impossible after a further year off sick. I had to take ill health retirement. Broke my heart and me as a person. I have got worse over the years, but managed to piece me back together! I had to come to terms with losing my nursing. Never accept it . but know I had no choice.

      Is good to chat to like minded people who are realistic. Great if people get better. But there are varying degrees even of actual CFS. Many who get better specially after a short period of time, surely to not have CFS. But a post viral fatigue. As we know CFS is not just about fatigue . take good care . x

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    • Posted

      Janet like you it is hard especially when you have worked so hard to have your chosen career . I had 2 jobs 1 was a cook the other on a market stall . But I feel for you . You worked hard to have that career . I felt stripped of my independence, my dignity and pride . I do think there's a different between pvf and cfs . Even though my kids are adult's now I still try to be a good mother through possible guilt of not been able to do much with them over past few years . Imy 50 next year and I would just want to have a wee bit of a life before I get much older . We can live and hope I suppose . There is a documentary film been made and it's been shown in different places in UK . I think it's avalable to down load this week some time . Called unrest about a woman with me/cfs . There also another doc film I watched called forgotten plague . I picked up a few things from that . Hope things improve for you . Take care 💜xx

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  • Posted

    Il post back soon as blood test results are back my dr seemed to think its a vitamin d deficiency but honestly meat is in every meal so chances are low.

    I havent been tested for lymes desiese but you never know, the only illness or injury i have had in the past year i think is when i cut my knukkle to the bone on a tin i was opening.

    I had another episode of spacing out tonight at work i called my boss at 9pm and told him someone left the wrong samples in the wrong place but 30 minutes later i realised they werent wrong it was just me and i couldnt grasp the name on the sample bag.

    Or when i went to the wrong practice and realised 50 minutes later. I never do that i seem to be not myself anyway ots late thanks for the replys il be sure to update.

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    • Posted

      Meat is not a source of vitamin d Patrick. The main dietary source is from dairy products be them cow, sheep or goat,'s milk cheese. Eggs another source. It is also added to non dairy milk like products such as rice dream, soya products etc. Also there are many deficient in vit d especially in the northern hemisphere because in general we don't get that much sunshine of the type needed. Practically all but about 10% of our vit d come from the sun. Housebound people, dark skinned people, people who have little skin exposed are more even more at risk of deficiency

      Being deficient affects the body in various ways. Indeed tiredness and pain . In severe cases can lead to soft bone or brittle bones. It can also affects concentration. I know most people who have CFS/ME tend to have a deficiency . I do myself. The main cause being housebound . I am on vit d tablets again at the moment . Some find they have more energy once level goes up. I never do. But it important to address the deficiency.

      There is often a predisposing factor with CFS. Like viral infection, illness, accident ,undue stress. Immunisations and vaccines. Some people can not put there finger on anything as to why they ended up with it. It isn't really known exactly what causes it. That is why research is so important . A lot has been done on mitochondria. The power house in each cell. Which makes logic sense. Years ago a Dr dowsett believed It to be polio without the paralysis. Being caused by the same or similar virus.

      I really do suggest at your early stage of feeling so unwell, that you push to be referred . You need a full blood work up and other tests to rule other things out. Sorry to be a broken record. Your GP should be doing as much as possible to get to the bottom of your issues. There could be anything going on . Is best to find out. It could be something needs medication. It might be a long haul if nothing immediate comes up. You just have to go with it and not be fobbed off. It is clear you are making mistakes at work now and that isn't good is it. Indeed keep us posted. Take care patrick.

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