Really struggling with post viral fatigue, will be grateful for any replies/suggestions

Brain and nerves
1

Hi everyone,

I am new to posting on here, a friend suggested that I should try and find a forum to speak to people going through a similar thing to hopefully find some comfort. Really hope that this will ease the mysery I am currently experiencing.

Over the past 12 months I have had glandular fever, recurrent tonsilitis, B12 and folate anaemia and have undergone a tonsillectomy. I had hoped that the tonsillectomy, B12 injections and folate tablets along with the various other vitamins and supplements I have tried would mean i'd be feeling normal again by now. I have been diagnosed with post viral fatigue syndrome and I am currently signed off work again. I am finding it incredibly diffuclt to deal with, I'm constantly frustrated that I cannot do the things I want to be doing and I am feeling increasingly lonely and isolated the longer I'm off work attempting to rest. I'm suffering with this horrible horrible fatigue unlike anything I have ever experienced before- my eyes never feel fully awake, my brain feels clouded like I have so much going on in it but I can't make sense of any of it because I don't have the energy to attempt to think straight, I feel like i'm constantly shuffling around unaware of what is going on around me because i'm just too tired to take notice and concentrate on anything. Being in work has been especially difficult, there have been times were the fatigue has made me feel so dizzy that I felt like I was going to faint and have had to sit in the toilets with my eyes closed and head in my hands. It's this indescribable feeling of not being able to function but also not being able to sleep, just sitting here in limbo wondering what the point is. My arms and legs feel so heavy as though weights are tied to them and whenever I feel this fatigue they ache as though i've ran a marathon carrying weights. I think the stress of having to be off work and feeling like I'm letting people down combined with the fear that I'll never be able to function properly again is probably making my symptoms worse, any suggestions on how to deal with the feeling of frustration/fear would be really appreciated. I'm starting to feel a bit resentful or envious of others who can go about their daily tasks, however mundane or menial they may seem to them, without this constant fatigue and brain fog. I feel like I really took for granted all of the time I spent doing things and being fully there, alert and awake. Now everything I do is a constant blur, unable to even hold conversation fully because I'm just too drained. After a day at work walking to the bus stop five minutes down the road feels literally impossible, like I'm trudging through mud up to my neck, every part of me aches, my whole body feels completely depleted of any energy and I also look very pale and rundown. I constantly have ulcers in my mouth, swollen glands and a sore throat despite having a tonsillectomy in July.

I'm 23 and I am trying everything I can possibly imagine/have read about to try and get better. Every day I'm taking a multi vitamin with iron, cod liver oil, Co enzyme Q10, L Carnitine, D Ribose, Magnesium, Vitamin C, Vitamin B Complex, Manuka Honey, Organic apple cider vinegar, a probiotic and my diet is the best it has ever been - lots of lean meats, fruit and vegetables and a measured amount of dairy and wholemeal produce. I no longer drink alcohol as I end up really run down and ill after a night out and I don't smoke. I don't drink fizzy drinks so my drinks throughout the day consist of water and herbal teas. I have tried having more sleep at night, less sleep at night, sleeping in the day, not sleeping in the day, resting when I need to, pushing myself and resting only at the end of the day. I have tried all of these in measured periods of time to see if any of it makes a difference. I have tried a sort of graded exerice were I walk for ten minutes one day and increase to maybe 15 the next day. I have tried mindfulness meditation and various relaxation techniques which I find help at the time but can't see much lasting impact. I have tried various bath soaks etc to try and help the aching none of which seem to help. I have tried pacing in the sense that I'll get a shower and then rest and then do something else little and then rest, and this doesn't seem to have helped but I'm unsure if i'm doing this right.

I would be really really grateful if anyone could get back to me and share how they feel day to day and how they cope with it and the feelings of frustration. At the moment I'm also pretty sure this is going to cost me my job, how have other people managed this illness with work? It's so difficult trying to explain to people how I can get up and shower, and this will then completely wipe me out for the day. I'm so scared that people think this is laziness and I know they don't understand, especially my employer. I was never ever like this before having glandular fever, I finished University and went travelling and have always had a really normal level of energy that allowed me to do everything I wanted, but I have spent the past 12 months feeling completely usless and fearful of the future. So any advice anyone can provide would really help.

Thanks! (Sorry for such a long post, felt like it helped a little typing it all out)

2

Hi Amber.  just read your post.  what can i say? i understand and have experienced all the symptoms you mention @ some point or other with this illness. you have my sympathies as most of us with this condition will have been where u are now.

a few key points/suggestions:

1)PACING yourself is SOOOOOOOOOOO  important & particularly so in the early stages.

2)sleep is also SOOOOOOOOOOOOOO  important - a least 9 hrs & as much as possible before midnight.

3)the food you seem to have sorted

4)the specific  vitamin routine you're on helped me. however, when i added b12 sub. cut.  my symptoms improved measurably. unfortunately, i developed an auto immune response to the b12, so had to stop.  auto -immune conditions are common with ppl with ME/CFS.  however, v. few develope  an auto-immune response to b12. i would strongly suggest that you have your b12 & Folate levels checked by your GP. i'm convinced that my ME/CFS occured coz of low levels of 12 which leaves one succeptible to immune compromise, infections etc. etc. do read up on b12.  the Pernicous Anaemia Society website is excellent. the 'healthunlocked' website in the PAS section offers indepth, reliable information and they RE SOOOOOOOOOO  knowledgeable and supportive.

5)Do look up support groups in your area. Action for ME give a list.

6)find the nearest ME/CFS  mangement course in your area.  it helps & you'll meet other ppl like u. 

7)have a look on the work of the ''ME RESEARCH  UK'' - they have an excelent magazine called 'Breakthrough' - they collate ME/CFS research from around the world.  there's also the ME Association. 

8)i'm much better than i was in the begining and i'm better at managing it now too.  so hopefully things will get better for yiou in time.

meantime, look after yourself.

C

3

oh Amber, you poor poor thing, my heart really goes out to you. I think one of the things that helps me get through it is being older and wiser - i used to have those feelings when i first got really bad like people didnt believe me and was it all in my head, was i bringing it on myself and just not realising it, but I've learned to accept it's everyone else who is wrong and sc**w them if they don't believe me!  so please take some advice from someone who has been there employer-wise - DO NOT let them make you feel guilty, this is not your fault, if you had any other diagnosable disease you would be getting help and support, not hinderance.  

and besides some people do take a very long time to recover from glandular fever, I would hope your work would know better than that.

The good news for you (not that any of this is good) is that whilst a year sounds and must feel like an extremely long time to be ill, you are in the early stages, so there is still every chance of a full recovery for you, please don't give up hope.  Cry when you need to cry, rest when you need to rest (easier said than done sometimes I know) and rant at a friend when they let you. 

I used to get the feeling of being exhausted after just getting up and having a shower to the point where I couldn't even dry my hair (if i'd had the energy to wash it in the first place of course!), just had to go straight back to bed (well at the weekends when I could - I used to go into work looking and feeling like a zombie), so I'm living proof that things can change for the better, although I am not fixed. Whilst I still feel tired a lot of the time, I have stints where I can do more with less payback. 

One of my biggest problems is feeling so "wired tired" that I can't sleep, I don't suffer with anxiety and i'm not worried about anything in particular but my mind just races at night when I'm trying to sleep about the most random and irrelevant stuff, which just coumpounds things. 

Have you discussed with your doctor the possbility of mediciation to help you sleep?  I was trialled on citalopram previously and didn't get on with it, it put me off for a while, but I am now trying Amitriptyline and just yesterday and today I've started to feel a bit better, I seem to be doing a few more chores with a bit less resting and some of the joint pains I was getting have gone (probably just because I am actually sleeping now) I still get the random shooting and weird pains but even they don't appear as bad as before.  It's still early days though so I can't rave about the medication just yet, i've been taking them for just over a week, its taken me that long to get used to them, they made be feel worse at first and didnt think I could bear them for much longer but am feeling more positively towards them now, but have to cut them in half as the lowest dose of 10mg is way too much for me.  

If you feel like this is a shorter term problem perhaps sleeping tablets may help, i've found Zimovane useful in the past, it might be worth asking your doctor about them.  I know it may not sound ideal relying on medication, but your body won't be able to heal itself properly if you are not sleeping well.

It seems like you are doing everything else you possibly can to help yourself and it does sound like you have been through a lot this year, having glandular fever and an operation, you may well find that your poor body just needs a bit more time to recover from it all, I know it must seem like its never going to happen, but its still early days and its still extremely hopeful for you, so while you are off work take the time to rest as much as you can, don't try and do things just because you think you should, there is plenty of time for that when you get back to work.

There is some great support and lovely people on this forum, so well done to your friend for recommending you come on here

 

4

Hi Caitlin

Thank you so much for replying. I'm looking into everything you've mentioned now. Can I ask, when you say pacing is it just a case of doing something small and resting for half an hour and so on? Also, how do you tend to rest? I know this may seem silly but as I'm not feeling the benefit of any rest periods I don't know whether I should be trying to sleep or lying down in silence or sitting watching something etc?

Thanks again!

5

Hi Kirsty,

Thank you for your advice. It really is helpful to hear from people who completely understand what I'm saying. A lot of my friends and family have told me not to worry what my employers think and not to be made to feel guilty, but I feel like they don't truly understand what's going on in my head because of all this and it sounds like you really get it. Did you continue to work whilst you felt like this? I'm so conscious of the time I'm having off work but fearful that working too much when I feel like this will only prolong things.

I am back at the doctors on Monday so will speak to her about sleeping tablets etc as you mentioned.

Thanks again! X

6

Hi Amber.

it's difficult to explain ''Pacing'' in a nutshell. however, this is a bit  from the Action For Me website that  makes it understandable:

''Think of your available energy as being like a mobile phone battery.

If you completely drain the battery you have to wait for it to recharge before you can use the phone again.

If you use some of the battery and make regular top ups, then your phone will always be ready for use.

Managing your energy through planned periods of activity and rest will mean you are more likely to be able to do the activities you want to do''

however, it's not ALL that simple.  you'll need to get a ''baseline'' of the energy available to you on both ''good'' & ''bad'' days. then you'll have to work out how much there is available for use on each day/s. for me that helped the ''boom'' n ''bust'' pattern that had me over spending on ''good'' days &  having to spend weeks in bed as payback. 

Amber, do have a look @ the  ''Pacing'' section in the  ''Action For ME'' website.  it explains it in 'bite size' portions that are manageable.

also, as a veteran (that can't bear being grounded) i feel it's IMPERATIVE that you find a way of ''accepting'', that right now, you're body has problems and you need to give it time to recover. this is illness IS NOT in your head. as soon as you accept that, others will too. pls don't allow guilt/shame or any of those emotions get a hold of you coz they can destroy u.  try to remain positive as possible when u can. and know that coz your young, you have a v. good chance of recovery, but you'll have to work with the illness & not against it by over taxing your body/mind.

pls be kind to yourself.

C

7

Hi Amber.  I so do get what you're talking about here and have those same feelings of guilt, shame, being un-believed & unable to explain, being totally mis-understood even by kind people who are really trying to help but don't get it.  The symptoms you experience are so, so familiar ....

It is horrible trying to struggle on when you really feel that you can't and know that you shouldn't but what else can you do but keep trying? Well, I pushed myself on and on until like you i ended up keep going sick from work and unable to do anything else much either. As Caitlin mentioned in her reply, just getting showered exhausts me too and I have to rest, wet, in my towel before I can cope with getting dressed and then have to lay on the sofa to recover from that.  I have returned to work, doing just 7 hours over 2 (non consecutive) days but am pushing myself even now and resting as much as I can in between. I am far from better but probably better-er than I was when trying to work longer hours. I suppose what I mean is; is there any chance that you could try and reduce your hours? My Dr is supporting me with a 'fit note' that says I may be fit for work on reduced hours. Perhaps your's could do the same for you.

Hope you start feeling better soon.

8

Im 39 now and worked full-time as a PA from when I left school, I started having constant fatigue when I was about 27 and only stopped working about 2 years ago (although currently still trying to re-train ) looking back I have no idea how I did it, when I think of some of the states I went to work in, and I made the mistake of not taking sick time off, if only other people could feel what we do for even 5 minutes they'd be begging us to take it back and understand just how much they are asking of us, but when you feel you have to somehow you keep going, as olivetree says shame and guilt, those feelings along with the usual sense of responsibility push you a long way, if I could do it all again and have a conversation with my younger self I would take all the sick time I could get! I'm lucky that right now that I don't have to work (although I seriously miss the self reliance and spending my money as I want, I was always fiercly independent before) but now I would always recommend taking time off, if it's at all a possibility, I know it's not an option for most, but if you can even just get more sick time I would take it, especially with you being in such early stages of post viral and having every chance of recovery. being loyal to an employer is one thing but you don't owe anyone everything, and that loyalty has to go both ways when it's needed, a good employer will want healthy employees, it works out better for them too in the end. forcing people back to work too soon is a false economy, so start working on telling yourself not to feel guilty, you didn't ask to feel this way and trust me if anyone could choose to take your place they wouldn't, if only I had a pound for every healthy person that told me I was lucky to not have to work, it doesn't feel lucky, I'd much rather have my life back thanks. please don't feel disheartened by how long I have been bad, mine was a gradual progression, I didn't start out with the same illness as you and good luck, I hope it goes well with your doc

9

Hi Amber,

I know how hard It must feel right now to be signed off sick but, this seems the best course of action as you're describing just how exhausted you are on here. don't rush to get back to work, you are recovering right now and need that time to heal. when you have a little energy, get In touch with the CAB and explain your situation, your diagnosis and ask about what concerns you regarding work and/or benefits. Take someone with you, it helps me as my memory is often shot with this condition.

I'll also add that as well as the physical rest, mental rest is also important. play gentle music and try not to focus too much on the future right now. Focus on being good to yourself. I spend time resting prior to doing things now as well as having to because I have done too much, like you, and most on here, I was pretty active prior to this so, find it hard sometimes.

Remember, your body is trying to recover, it just takes time.

Hope this helps

B

10

Hi Amber; I cannot add much more as you and others have covered everything so well......you have researched and found answers earlier than most of us have done over much longer periods.......the only new supplement that I am trialing is Melatonin......I have found that some researchers have found that we don't go through the "Cicadian Rhythm" part of a Normal sleep pattern.   To achieve this level of sleep, we need Melatonin (which is normally produced in our brain stem/sections)...but we are Not producing this Hormone naturally, so I am trialling this to see if I can achieve some of our normal sleep pattern..................the other issue that I feel is very relevant, is "are our Thyroids working"???? Even with our bloods telling us that our Thyroid Levels are within Normal Range, it is being found that we are Not able to convert our Thyroxin into the necessary T3 levels for our cells to get the necessary energy........If you have a GP who is willing to test your Thyroid Stimulating Hormone levels, this is a start; and also commence you on some Thyroxin (start with 50mcgs and after a couple of months increase to 100mcgs per day)......I am trialling same, and although not "jumping fences", do feel that I have increased my "staying" ability a little......nothing will change overnight, but I do believe that there is a connection between all of this

​I, too, really got worse after catching "what the drs/specialists thought was akin to Glandular Fever 10 years ago", and since then it has been a  "trial and see"  situation (also probably because it is only over the last few years that Doctors etc are starting to recognize CFS, and not just "a yuppy flu"....)..............if you feel that you need validation for yourself, which is a lot of us have needed to do, is to talk to a Psychologist/counsellor who understands CFS, and they will help you to "learn ways of staying positive"....................take care and keep in contact...........Bron

11

Hi Bron.  good to hear that you're having positve results with the Thyroxine.  i'd be really interested to know how the Melatonin goes for u.  btw, did u have your levels checked prior to commencing on it?

C

12

Thank you!

My employers really aren't keen to understand or make adjustments, when I last spoke to them they told me I would feel better if I just 'got up and got out' and told me that I'm unreliable and that my colleagues are frustrated with me whilst I was in tears in the phone My HR manager is actually keen to increase my hours despite me explaining my current situation. At the moment I'm relying on the understanding of my doctors to keep me signed off, but will speak to them about making a recommendation that I reduce my hours and see how that goes.

Thanks again! X

13

Thank you Beverley. I really appreciate everyone taking the time to reply, the comments have managed to ease the anxiety I was feeling x

14

Hi Bronwyn,

Thank you for your reply!

I have actually read about melatonin and was looking into buying it. I was unsure where to buy it from as the more well known places like Holland and Barrett didn't seem to stock it. Could you please give me any advice on where I can buy it from a reputable source?

Thank you xx

15

Hi Amber.  i'm soooooooooooo  sorry to hear how your work place is behaving.  in fact they are contavening the law/regulations of the disability act. and ME/CFS is now considered a disability. 

''You’re disabled under the Equality Act 2010 if you have a physical or mental impairment that has a ‘substantial’ and ‘long-term’ negative effect on your ability to do normal daily activities''.

 your place of work is obliged to make adjustments to facilitate & optimise your work potential. 

i know how DIFFICULT it is to fight for one's rights with this debilitating condition, cos a lot of the time there's just enough energy available to keep one's head above water.  however, if u can get to a CAB, they'll be able to advise on your rights and may even liase with your place of work. if you're unable to make it to a CAB information point, some CAB's have a home visiting system in place. 

i'm wondering if your parents, boyfriend, colleagues etc.  would be able to help you. my heart goes out to u in this very difficult place.

try to get someone to help share this load wiht you. 

C

16

Amber, Are you living in UK?  If so; Do you have an official diagnosis of CFS/ME? If not get your Dr to make a referral to a specialist CFS clinic who should be able to confirm your illness.  CFS/ME is recognised as disability under the Equalities Act and therefore you employer has to make reasonable adjustments to accommodate this. Get help from CAB on your employment rights if they still refuse. Their bullying will only stress you out and make the condition worse. This could be construed as constructive dismissal if it comes to that.

Take care of yourself and good luck.

17

Morning to Caitlin and Amber; No I didn't have levels checked (just started this past week, after much research into how it works/helps, and the need for it).....many sites told of the research telling us that our Brain-Stems are disfunctional, and as the glands of the brain-stem, and those Just above, are paramount to our well-being/lack of, including the Cicadian Rhythm of Refreshing Sleep, felt it couldn't do any harm to trial (as I have done with other supplements   eg Magnesium)......I then viewed other on-line sites for a Good source of Supply of this, and found one here in Aussie......as to the results, I feel that I will need to give it more time.......another replacement that I feel we ?may be in need of is Oestrogen and Testosterone  (this I have replaced too with a Natural Replacement), for as many complain of the "night flashes", as did I, too.....but really feel that this is working, as I no longer have nearly as much trouble as I did 12 months ago.........please remembr this is just from what I feel and believe from researching causes and needs of our body in relation to the side-effects of CFS and Fibro.....no Documented Proof................good luck..........Bron

18

Hi Amber,

I just wanted to see how you are getting on now? Our cases sound very similar! In July 2014 I had pneumonia followed by Glandular fever. I still constantly struggle with fatigue. I also have no tonsils but have a sore throat almost every day!!

I hope you have managed to make some progress with my work? Mine referred me to Occupational Health and i was terrified i would be fired! However they have made some adjustments to my working day (I start at 8 and finish at 4:30 as I am good in the morning, this also allows me to go home and have a proper rest before the next day).

I also took Vitamin D supplements (best to get a blood test to confirm you are deficient but it is very common in CFS sufferers) which gave me a boost.

I have found accupuncutre helps hugely.

Anyway just saying hello i hope things are looking up for you. 

I  x

19

Hi Isabelle,

Thank you for your message

I have been referred to the M.E specialist in Liverpool now and have an appointment with an endocrinologist on Wednesday as my bloods came back with raised cortisol. In terms of my symptoms I'm the same, if not worse unfortunately which is massively frustrating because I have followed a firm plan of pacing, rest, supplements, meditation, diet change etc whilst I have been signed off work for the past 9 weeks.

It sounds like you have been really fortunate with your employer so that's a silver lining for you! My employer has now told me I have lost my job and they are in the process of recruiting to replace me and offered me a demotion in replace of my role. I hadn't given them a concrete answer as to whether I was accepting the role as I'm finding it really difficult to think clearly, then I received a letter from them requesting a medical report from my GP for them to decide whether I will remain employed by them at all. Really scary, surreal situation to be in at 23! I want so desperately to wake up and feel normal again and be able to continue my life but at the moment I'm just honestly terrified about how much weaker I feel each day, some days I feel like my arms are too weak to hold a knife and fork to eat.

Have you found you have stayed at a constant whilst working or have you had many bad relapses? Have you seen a specialist in your area and did you find it helped if so?

Amber X

20

Thank goodness I came across your story ! ,Iam 50 always 

 been energetic ,go to gym run 5 to 10 kms regularly ,always worked keep a house going ect ect could never sit still to even watch television.Then around June 2016 (looking back now)I would have bouts of fatigue,really thought it was to do with menapause then thought I was gluten intolerant .The fatigue still become so bad on days I can barely move only just got blood test a few weeks go