Hi all, I should say I haven’t been given a diagnosis however my GP has suggested that this may be the cause. I had a viral infection two months ago which completely knocked me out. I had severe flu and slept around 18 hours a day for a few days— this was two months ago, my symptoms haven’t improved.
I have had my blood done and I had low B12. I have had the loading doses but they have made absolute no difference to my condition this whole time. I have been extremely fatigued- on a good day I can wash my face, brush my teeth have a bath and maybe put a few plates away but on a bad day I can’t do anything. Luckily my partner has been making me meals and doing housework.
I have severe muscle pain. I walk with a limp as my legs are very weak and I constantly feel like I have the flu. I haven’t had a good day yet and obviously haven’t been able to work , I haven’t left listed all my symptoms but that is the general ones.
Obviously I am ‘only’ two months in but I am getting increasingly worried that I’m not getting better. I feel very alone so any thoughts are welcome. Is there anything I should or shouldn’t be doing at this stage? thank you so much.
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if it is ME I would advise listen to your body and pace yourself. Don’t force yourself to do things otherwise you go backwards. It’s very hard to do when the you work needs doing and very frustrating too. It’s early days and you might just have post viral fatigue so try to stay positive
Couldn't agree with this more. Don't push through the fatigue. That will make it worse, potentially permanently.
Unfortunately there is no cure yet as ME is very under-researched, and used to often be written off as a psychological condition (and a lot of doctors still believe this). For me this is the one silver lining of covid, long covid means more doctors and scientists take this illness more seriously and are actually researching it now.
I'm not sure if your GP is referring you anywhere but I would recommend caution with existing fatigue services. Until recently the official NHS treatment for ME was Graduated Exercise Therapy (or GET) along with CBT. GET forces you to push through fatigue and has made many of us worse. CBT was given because the illness was thought to be down to 'unhelpful thoughts'. The ME community fought long and hard against these guidelines and they were finally replaced in 2021. The new guidelines are actually half decent but unfortunately not really implemented consistently, and some of the old services that were offering GET and CBT still do this just under a new label. If you have the brain power I would recommend reading through them, or if not, ask your husband to. nice.org.uk/guidance/ng206
If you can afford it, I would recommend you get a private consultation with a doctor specialising in M.E. I can personally recommend Dr Claire Taylor (drclairetaylor.com/) and have also heard good things about the medical services offered by action for me: actionforme.org.uk/ (and they also offer up to 50% discounts on their medical services depending on your financial circumstances). They also offer the listen to ME phone line which is useful to vent and talk to someone who gets your situation - and is free (but not for medical advice)
The ME association has lots of useful guidance and advice on how to manage your symptoms and deal with the various aspects of ME: meassociation.org.uk/free-m...
Lastly I would recommend you look into nattokinase. I've seen some improvement in my condition since I've started taking that. The thought it is breaks down microclots in our blood that prevent oxygen from reaching the places it needs to be thus leading to brain fog & fatigue. As it is a blood thinner, you should discuss with a medical professional before taking it though. based on twitter.com/organichemusic/.... Be aware most doctors have probably never heard about this stuff unless they have a special interest in ME/Long Covid.
But let me stress again, the most important thing to do right now is rest, and listen to your body, and to not push through your fatigue. Any exertion can make your condition worse, whether that is physical exertion, mental, or emotional. So go slow and be kind to yourself.
I am really sorry you have found yourself in this situation. It is a shitty place to be - but there is definitely hope for new and better treatments!
Feel free to reach out via DM if you have more questions or just want to talk.
Thank you. I haven’t been referred yet but my GP said she will after 3 months so I will keep what you said in mind. I can’t imagine any form of exertion right now so will steer clear.
Is “excessive” sleeping considered a good thing? I have been trying to avoid napping as it makes no difference to my energy levels but most days I am so tired I can’t help it. Unfortunately, the day after napping I usually feel even more exhausted. I don’t think I have found a balance yet.
Sleep is neither bad nor good I would say, and if your body needs a nap I would listen. Unfortunately unrefreshing sleep is a hallmark of ME. I find for me it is best to have a pretty set routine for sleep so I go to bed same time every day etc. Maybe have a scheduled nap? And are you sure you're feeling worse from the sleep, and not from what you did the day before that? Post Exertional Malaise can often take 24-48hrs to hit.
Unfortunately the only thing you can do against PEM is rest, and pace yourself. If you get backlash from washing your hair, don't wash your hair. Yes I know that sucks but I prefer greasy hair over being so exhausted I have to stay in a darkened room all day. You have to find all the shortcuts that mean you can pace better, and spend less energy on day to day stuff - like for your hair, use dry shampoo.
It takes lots of practice to pace well, and it will take time to find a baseline of activity you can sustain, otherwise you end up in this cycle of do too much, recover for weeks, etc etc etc. For now the advice is to cut back activities as much as possible to avoid the PEM, until you are more stable. By the way I get those flulike symptoms you describe when I've overdone it, those are a symptom of PEM for me.
Oh, forgot to mention before but I get a lot of muscle pains too and find that heat helps really well. I have a heated blanket I use for this.
Oh no, I didn’t realise I was pushing myself. Is the baseline I’m trying to get to where I don’t have flu symptoms then? I know I get painful lymph nodes when I’ve really pushed it. I do so little already.
I have a hot water bottle and that helps too. Thank you for your help!
For me, yes. Flu-like symptoms are a sign i have overdone it and need to stop. That, as well as brain fog (feeling like i am trying to think my way through treacle, memory issues, word finding issues), muscle aches, IBS symptoms, and just being more exhausted than usual. You will have to get to learn your body and your symptoms, and what works for you. It will take time but it is possible.
It truly sucks - but the alternative is worse, so we stop, and rest. Very hard to do since our society is so focussed on being productive. I used to feel like resting was 'doing nothing' and thus bad. I have had to reprogram my views on that and now view resting as the only constructive action i can take for my health. And I can definitely say my condition has stabilised and even improved somewhat due to being able to rest 'aggressively' like this. I'm sorry to say that took about 3 years though - but still, it shows improvement is possible, and I know some people make a full recovery too.
I agree with everything you have suggested. Ive had ME/CFS for over 30 years. I wasnt diagnosed untll 2011 after I had a virus. Pacing is the only thing that helps me. I have tried many supplements, therapies and private doctors over the years but no improvement. I am in my 60s and am now resigned to the fact that I will always have this.
Hello, I’m sorry you find yourself in this position. ME / PVF can feel very frustrating and lonely at times. Especially as it’s hard to explain to others how it feels. Being ‘tired’ is nothing like having fatigue! And there can be a wide range of symptoms too. I would echo Murtoz’s advice, especially at this stage I would just focus on trying to get to a base level where your symptoms are the mildest you can get them. I’m a few years in now but I remember how frustrated I was at the start and was pushing back against the advice I was being given. Unfortunately this condition is one of self management and probably the first thing to do is to not be hard on yourself. Accept the limitations you have at present. After years of practice, reading, self reflection I’m managing better than I was but I still have to pick and choose on a daily basis what I can do and what will just have to wait until another day. I would recommend looking at the ME Association website as they have some free brochures. They also have a helpline, though I’m not sure if you need to be a member to access it. And there’s this forum too, I’ve found it to be helpful and supportive.
Thank you for your reply, it helps to hear other perspectives. I am struggling to minimise my symptoms at present as even after days of rest I feel exhausted and no relief from symptoms. Or maybe this is my baseline, I don’t know. I will take a look at any resources I can, thank you for the suggestion.
I suppose there are different levels of ME too? I have seen online some runners who have been diagnosed and are building up their training endurance again after a few months. Whereas I am struggling most days to sit up for long periods. It is difficult to not compare. I only mention this as I am missing exercising myself.
It sounds like it’s very early days for you so I would try not to worry too much about how you’re feeling right now. Probably better to just focus on managing your symptoms day to day. As I know it people with ME can vary from being fairly active to completely bed bound. It really can be different for everyone. So I suppose that also means that there’s no one size fits all answer to getting better. I myself have also compared my abilities to others. A person I’ve met had a spell for only a short time and is now back to cycling to work. I can rarely get round the shops without flagging so it is difficult to hear how others are managing to do anything remotely exerting. It’s only in recent months I’ve learnt to recognise when I’ve overdone it, either mentally or physically. And so I now try to alternate activities so if I’m doing something mentally challenging I’ll switch to something physical (like washing my hair, or cooking a meal). The hardest part is stopping before you’ve done too much. Even reading a forum like this for more than half an hour can tire my brain out. They’re such small things but they can have a big impact. Feel free to DM me if you want to chat or ask any questions.
Hi, great replies above. I can sincerely sympathise, commiserate and empathise .
I was diagnosed with CFS by GP about 2016. Dates are muddled in my mind so landmark events are useful particularly son's wedding in France June 2017.
I'd already been diagnosed CFS by then but after looking up what it meant I'd dismissed it as completely wrong. That wasn't 'me' .
In May 2017, for 2 weeks I went to France to look after baby grandson & support them organising wedding . Came home & could hardly leave sofa or bed for 2 to 3 weeks before returning to South France again to support son and daughter in law, look after baby etc for another 2 weeks before, during & after wedding.
About October 2017 I was trying to work out what was wrong with me & decided to go to GP...........that's when I twigged that I'd already been to him about the fatigue a year previously 🙄 and doc's words came back "it's CFS, there's no cure so you learn how to manage it". That was it.
I'm already on the AsthmalungUK forum (re. asthma, 5 bouts of pneumonia & continuous chest infections from 2009 to 2013) so found this ME/CFS forum. Someone mentioned Dr Sarah Myhill's research, work and book which I bought. I found it so useful in understanding the condition. I couldn't afford to see her for blood tests to followed her recommendations in her 'Fatigue Pack' towards back of book. I wrote a post about my experience a couple of years ago if youre interested. Since then I've added Astaxanthin 5mg to my daily supplements.
Sorry for waffling reply, (brain fog) I'm now shattered as at the moment in recovery since first trip to France since 2019. Only 6 days for son's special birthday 12th to 18th Dec.
It's back to bed & sofa for a while until some energy has rebuilt. Always like this if I abandon pacing & push into 'normal life. I live alone so no support or understanding. One good friend muttered hyperchondria when I explained why I couldn't be the energetic she used to count as her friend 😳. It's tough so I'm so pleased you gave a supportive partner. Peege
Hi Peege, thanks for your reply. It’s such a shame there is an energy punishment for the things we want to do in life. I am glad you got to spend time with your family though. I would ignore hurtful comments from your “friend’, it is difficult to explain the fatigue and exhaustion- even my partner who has seen me struggle has asked me if it is more a psychological or physical problem (!). Psychologically I am absolutely fine, the physicality of this is demoralising though as you know.
I will look at Dr Sarah Myhill’s work as I am struggling to pace. Leaving the house sends me into a 2-3 day crash at the moment so any advice is appreciated.
Forgot to mention, I have the paperback edition of Myhill's book (somewhere) , it's only small plus the Kindle version on my kindle app. × just take care.I think that my own initial reaction to CFS was probably to do with a higher belief of mind over matter. ......that'll teach me ! I've tried to slow down my physical movements/actions since listening to a small section of the BBC radio 4 called the Seven Deadly Psychologies , spoke by someone with CFS.
hello, sleep and rest is the best way of giving your body what it needs. I hope you are feeling a bit better now.
I have had M.E. for decades. Iam new to this particular forum. Diagnosed with P.A. about a year ago. Sounds like M.E. and PEM. However many with ME have low B12.
I also did not benefit from the loading doses, and my b12 symptoms all came back when waiting for nhs maintenance dose.
Most Gps even Consultants do not know or understand how devestating this deficiency can be. You may well need more frequent treatment than nhs allows.
I would suggest you post your blood results pertaining to B12 deficiency here, or pernicious anaemia forum for comment. Might help you to check symptoms list on PAS website.
Thanks for your reply. I am sorry to hear you have been suffering for so long.
I am still in the same position unfortunately. I haven’t got any better but luckily not any worse either. I think I am better at pacing myself but my functional abilities haven’t improved so I am still unable to do more than I mentioned in my original post.
I’ve lost my job now and am considering applying for PIP as I don’t think I could even do a remote job right now. Devastated isn’t the word.
I don’t have access to my B12 results as my practice doesn’t submit results on the app. I could request them from GP but I’d need to go.in to sign something and I’m too exhausted. Besides, at this point it clearly isn’t the B12 as my initial doses did nothing.
Hello, I know how daunting this illness can be. Bed Rest and not 'pushing' yourself, listening to your body is the way forward. It's early days yet.
The fact that your surgery says you have low B12 it must be very low indeed as nhs set ranges lower now.
Low B12 could be causing symptoms and therefore slow your recovery. Pernicious Anaemia Society has a list of symptoms .
I have looked at NHS app online. Says your results should be there. But if not a digital printout could be sent by the surgery. As its relatively recent this should be no problem for them, everything is online.
Im sorry if I am wrong but I thought you only had to sign a form and go in if you wanted your Medical Records.
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