• This topic has 22 replies, 15 voices, and was last updated 3 years ago by scud.
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  • Chronic Fatigue / M. E. / related conditions recovery
  • BARDSTER
    Free Member

    Over the past 30 years I have been mountainbike racing, fell funning and adventure racing at a decent level and my recovery has always been good. I am a Vet, so have reasonable understanding of various facets of biology, disease, living organisms etc…

    I recently skiied the length of Norway. It took me 107 days from 24 December 2019 – 8th April 2020. It’s a bit over 2600 km end to end.
    I found this trip really tough mentally and physically. The weather was often very poor and my days ended up being long – often 12 hours non-stop, with not many rest days.
    I did end up either exahausted or possibly with a virus on 3 occasions and had to rest for 1, 2 and 5 days. I was worried at the time about continuing not 100% and what effect it might have on my body.
    When I finished I felt very tired, but ‘okish’.
    On April 14th after a lot of driving and ferries, I arrived home. The first week I slept 16 – 18 hours a day and felt utterly dreadful when I stood up. Since then I have improved moderately.

    Now, 1 month after finishing, I still awake in the morning feeling unrested, although I sleep well during the night. By lunch time I feel so tired it is hard for me to stay awake. I am unable to think clearly and sometimes have a mild headache. I find concentrating and chatting to people very tiring. Often by 8.30 pm I am extremely tired and really need to sleep.
    Music is generally not enjoyable and background noise I find very tiring.
    On my better days I have tried to do a little exercise. I generally don’t feel too bad at the time (adrenaline ?), but feel incredibly tired the next day. I have on 2 occasions tried to do a ‘longer’ bit of exercise on the bike – over an hour with a couple of hundred metres height gain. Both times it felt hard work and I was utterly wiped out for the next 2 days.

    I have spoken to my GP and am not currently working.
    I have not as yet had any blood tests, although hopefully I can get some done soon. (My GP would have done this by now, but with the Covid-19 situation has decided to wait a little longer).

    I am taking multivitamins and Vit D. My diet was poor during my trip and I didn’t get much sunshine! I did take multi-vits during the bulk of my trip, but my diet was not great – Porage / Bars/ Dehydrated food.

    There are clearly a lot of things that I could be suffering from. My personal thoughts are I have stressed my body more than I should have and am suffering some form of fatigue.

    Is there anyone out there who has suffered similar fatigue and can offer some advice on how to get back to normal?
    I understand to qualify as having ‘chronic fatigue’ you need to feel like this for 6 months. I have no intention of heading down that road, if I can avoid it!
    I have started to keep a diary of how I feel and what I did each day. I am hoping this way I can identify what I can do activity wise each day and still feel ok the next day. Hopefully over the months I can build back up to a decent level.

    Any help / advice / comment welcome…

    Thanks

    footflaps
    Full Member

    I don’t think there is any one path for CF as it’s basically a diagnosis of elimination ie covering a multitude of things yet to br understood / detectable. The best advice is figure out how best to manage your particular situation / condition. And don’t rush anything, that seems to just set people back more.

    BARDSTER
    Free Member

    Thanks, Footflaps… useful advice. Your comments are soundly backed up by the lack of much clear detail online! Hopefully my realisation it could be CFS and keeping a diary will prevent me jumping the gun.

    cinnamon_girl
    Full Member

    I think as a starting point you need to know your vitamin and mineral status, private tests are available and some merely involve a pinprick. Others will need a phlebotomist, some tests will include having this done at a local private hospital. Companies to look at include Medichecks, Blue Horizon, Genova Diagnostics. You need to stop multivitamins and vid D well before testing. Have you ruled out being bitten by a tick?

    In the meantime take a look here:

    https://www.drmyhill.co.uk/wiki/Main_Page

    jimw
    Free Member

    I was diagnosed with CF in December 2019, as suggested by foot flaps this was essentially a diagnosis of elimination as all tests appear normal. I have been exhibiting the symptoms since February 2019, and I am now to the point where the better days outnumber the bad days by a large proportion.
    There is quite a lot of literature that can give guidance but the main thing That has helped me is, again as stated above, not to push too hard when things are good and accept that you may need to have rest at times you haven’t needed to since you were a toddler (afternoon naps work well for me) and not get too frustrated when you can’t do what you used to do straight away. Diet is also important as you have mentioned, I have been eating more fruit and this seems to have helped with energy levels.
    Edit. One of the tests I had was for Lyme disease as the symptoms may be similar. Mine was negative, as were those for Glandular Fever.
    This is a leaflet produced in Worcestershire that might be of some interest
    https://www.hacw.nhs.uk/download.cfm?doc=docm93jijm4n993.pdf&ver=1721

    poolman
    Free Member

    A full suite of blood tests would eliminate alot of suspects. A friend has been exhausted for 30 years and the doctors still cannot decide what is wrong so she just manages it.

    The tiredness could be a low b12, once the level drops really low it cannot get back up naturally. I get it, have to have b12 shots straight in the blood stream. The low concentration, apathy, tiredness is a symptom.

    Yak
    Full Member

    I had similar and was exhausted for an extended period after something viral and too much exertion.
    Anyway my GP at time went with CFS as a viable conclusion and got me to undertake graded exercise. So start with a gentle walk (at the time a 200m walk was tiring), and back off when symptoms appear. Slowly increase each day. Some days were a set back and I be back some days. Then onto my bike and a mile on the flat…etc. Anyway 18months of this and I was good for decent rides again. A bit longer and I could race again. But I get occasional relapses even now, ten years on, so you can’t ignore symptoms and rest when needed.
    Good luck OP. It is likely to be different per person, so what I have said above might not fit you. Keep at it with your GP and if it’s something simple missing from bloods, then sorted. If not then push for other routes to getting back to a likely ‘managed’ fitness.

    gowerboy
    Full Member

    I am no expert on such things – but I have had bouts of feeling like you describe – they have passed though after some rest and patience.

    That is one hell of a trip though – and leads me to think it that you are experiencing something more like Chronic Over Training Syndrome?

    I remember watching Aaron Rice’s film on skiing 2.5 million feet in a year and he ended up unwell – and commented something like he didn’t know that ‘over training’ is a thing. Especially as he was doing and not training. I also understand that some Tour Divide (or similar) racers take ages to recover after the race.

    You probably know all this anyway – but I was thinking you be fair to yourself after what sounds like an extraordinary feat?

    paton
    Free Member

    ” I did take multi-vits during the bulk of my trip, but my diet was not great – Porage / Bars/ Dehydrated food.”

    Lectin intolerance?
    Oxalate intolerance?
    Synthetic vitamins instead of food?

    tjagain
    Full Member

    Vit d made a huge difference to me. . I was tested and had very low levels

    I took 800 units daily for a month before I felt better

    cookci
    Free Member

    It took me years of some pretty horrible – life stopping fatigue to get to where I am now.

    I rarely feel brilliant still but my body can cope with pretty reasonable exercise levels without leaving me crippled the next day

    Diet is key however everybody is different it takes a little trial and error to find what works to make you feel the best

    For me i need high protein, very low sugar and fat. Also i cannot tolerate caffeine but alcohol is ok in reasonable quantities

    CFS is heavily linked to anxiety though, people tend to end up in a vicious circle of worrying about their symptoms (which makes them worse).

    Do you “scan” your body for symptoms?

    Bushwacked
    Free Member

    I had CFS/ME for 4 years. 11 years since diagnosis I’m pleased to say I’m fully recovered. It was a tough journey and the experience has changed my life in more positive ways than I expected. It feels so good to know it’s behind me. The recurring nightmare at the time of being stuck in a dark maze not being able to get out still freaks me out.

    The way I like to think of it is CFS occurs when you push too hard and a fuse blows, a bit like a ship loaded with cargo, you overload it and it just sinks but you can’t easily refloat it – the cargo being life’s stresses both positive and negative. Not being able to easily reset that fuse is the chronic aspect that causes the continuation of symptoms.

    As someone says above each journey out of CFS is individual as the key is to reduce the stress being put on your body (the cargo in your ship). It’s also worth mentioning that you may not even be consciously noticing what is triggering the body’s stress response.

    For me it was riding too hard, too much stress at work, 2 yr old kid waking me every night at 3am and generally not giving my body time to heal/recover. The result was the fuse blew and I burnt out.

    I’ve thought about this a lot and my interpretation of what was happening to me was due to how the body produces stress chemicals. If you think of this process as a tap, now if that tap is on constantly your body gets used to it, but a constant flow of these chemicals also poisons the body (Look up the symptoms of overdose of adrenaline and to me it read like a list of my symptoms). This is why rest is so important.

    Overtime, much in the same way as high blood pressure you get used to it and don’t notice the level of stress (positive or negative). However overloading the system or riding it with the tap fully open for too long leads to burn out physiologically. The transition from normal to CFS is what I like to think as where that tap gets stuck on (fuse blows) and you can’t turn it off easily and also where any stress triggers the tap to turn on fully rather than an appropriate level of flow. (Read up on the maladaptive stress response).

    For me recovery was all about relearning on an unconscious level how to manage stress to ensure the tap works correctly – not as difficult to do as it sounds but does take some dedication. I saw a specialist and without their help I wouldn’t have recovered.

    (I’m sure a medical person will come along and poo poo this but the doctors are also the people who said I’d never recover too 😉 )

    Happy if you want to PM me with any questions.

    rondii
    Free Member

    I had a similar condition due to cervical osteochondrosis. I started to sleep more, but I felt constantly tired. It was difficult for me to concentrate on something, it led to problems at work, I became irritable and it spoiled my relationship with my family. I went to the doctor, I thought that the reason was that I lacked some vitamins, but it turned out that due to the deposition of salts in my cervical spine less blood flowed into the brain and this led to this condition. I went for a massage, drank the pills that the doctor prescribed for me and put a heating pad on my neck before going to bed (by the way, this is a good way to relax and fall asleep faster). The treatment took about 6 weeks, but I began to feel better after the third massage session. Now I try to take more care of my health, I do exercises for the neck and back, I use a special pillow that keeps my head in the right position and reduces the load on the neck muscles. Here https://ortorex.com/p/latex/ there is a video where it’s described in more detail how the shape of the pillow affects sleep. I also try not to eat salty foods and drink only filtered water. I know that any health disorders strongly and sometimes unexpectedly affect our condition and this can affect our actions, so if a person suddenly changes his behavior, this is the first signal to visit a doctor.

    Bunnyhop
    Full Member

    As you can see there have been many of us on here that have suffered. There are many threads, (maybe someone can find some in the archives)?

    The good news is that most if not all recover. However be prepared to be in this for a long time.

    Don’t beat yourself up and make sure you have someone to help look after you. My hubby was absolutely amazing and kept me sane. He took over some of the chores and made sure the food in the house was healthy.

    Gradually the days of having fatigue were fewer and good days became the norm. But, on some of the good days I overdid things and paid the price. You will learn to read your body and use your ‘bank of energy’.
    My body sort of shut down after 3 things happened in my life. Maybe yours has done the same after this major feat of endurance.

    As others have said each of us is different and there is no cure. Time is the healer. You will learn to manage this and try to do something you enjoy at least once a day. Going out into some countryside or greenspace was what kept me going.

    poolman
    Free Member

    Gosh some brilliant responses on here a good mate of mine is similar I wish I had read this 20 years ago. She has learned to live with it now but I think the root cause was anxiety and not listening to her body. The common thread here seems to be the clean food and rest.

    Thanks all for posting it’s really useful, and better than 20 years of doctors who still can’t decide what is wrong with her.

    BARDSTER
    Free Member

    Everyone, many thanks for all the replies so far. I totally agree with Poolman, some incredibly useful advice. I am really indebted. I am putting together a bit of a game plan to keep emotional and physical stress in my life to minimum, as I wait to get some bloods done by the Docs. I have knocked attempting to exercise on the head for a few days and am not sleeping so much during the day, which is one hell of a relief.

    BARDSTER
    Free Member

    Thanks, very useful indeed.

    scandywag
    Free Member

    Some really good advice on here! A first port of call has to be a full range of blood tests via your GP and then a process of elimination from there. I had a similar situation a few years ago, a sudden tiredness that I couldn’t ‘rest away’, but where my energy ran out all of a sudden. I work with patients with stress related health problems, so that was my first thought as a lot of the symptoms were similar. Luckily, I met a GP who was on the ball who saw the excess iron from the blood tests and confirmed their suspicions with a genetic test that I have Haemochromatosis. Lots of other symptoms but chronic tiredness being one of them. Good luck with the diagnosis, but insist on action now, earlier treatment will help virtually all illnesses.

    TomB
    Full Member

    I know from your user name and story that you’re local to me, so you probably know Steve Birkinshaw and the difficulties he went through after his Wainwrights record- would be worth a chat with him if you haven’t already.

    BARDSTER
    Free Member

    Thanks again… Scandywag and TomB. Hopefully I can get some bloods next, and yes I will indeed chat to SteveB …

    tjagain
    Full Member

    I suspect from my reading around CFS that actually it has not a single cause. I suspect for some its endocrine / hormonal / neurotransmitter issues, others metabolic, others infective and a psychological component is there and is the major factor for some

    Try the vit D tho – 800 units a day – maybe 1600 for the first fortnight. I was certainly low vit D and while this has not changed everything for me its made a big difference.

    scud
    Free Member

    I suffered the same, had a period where i had been made redundant 3 times in quick succession whilst also pushing myself for some daft reason to ride further and further, ending in a 310 miles in a day ride, this led me to believing i would like to ride Trans-Continental or similar, so having been made redundant and car packing up, when i started new job i rode there and back by bike,. and in next 14 months i was riding between 42 to 60 miles a day, and this is with me being a 100kg plus rugby lad for 20 years, so not really built to be a good cyclist…

    After 14 months of this, i got to a point where i could barely turn a pedal, and all interest in cycling had gone out of the window. I kept having periods of being grumpy and felt absolutely washed out, and was often curled up on sofa asleep by 9pm and would wake up after a nights sleep almost feeling hungover.

    I kept going back to GP and got nowhere, i had tests for iron, thyroid etc, but no-one really prepared to listen to me.

    Over the last two years, it has go better, but if i do too much over 2-3 weeks, for the fourth week i pay for it and it comes back.

    I did a lot of reading up on Overtraining Syndrome, there is now something they call “RED-S” where malnutrition coupled with large quantities causes body changes (periods stopping in female athletes etc). The more i rode and the tireder i became, the more i neglected eating right and ate rubbish, so maybe this was a cause.

    The other thing i have found, and this was only by paying for external testing, was that my testosterone level had gone through the floor, minimum is 7.16 nmol or thereabouts in a healthy male, mine had dropped to 5. GP still wouldn’t listen and i looked into getting the hormone privately, but thought i would tackle trying to raise it naturally first, so instead of 100 mile plus rides grinding out miles, i have gone back to the gym, lift heavy, keep most of my cardio as HIIT work, and then just ride my bike outside for fun, usually just 20-40 miles on gravel or mountain bike, and slowly hormone levels are rising and the periods of feeling washed out and less frequent.

    So whilst this might not be the case for you, it is worth considering that you have put your body through a lot, not one hard day event like a marathon, but day in day out which has a wearing down effect and ultimately can mess you up, issue is you go to most GP and mention this and they just send you for same simple tests, definitely worth getting checked, companies like Letsgetchecked.com and The Independent Pharmacy do private testing, and if you describe symptoms, they will recommend tests.

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