Post viral fatigue syndrome- looking for recovery advice/story
Posted , 39 users are following.
If you've recovered from this please respond here. My son is very ill. We need recovery stories.
3 likes, 70 replies
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Notes on Post viral fatigue syndrome- looking for recovery advice/story
eleanor12697 mary96913
Posted
Hi Mary,
I was 19 when my journey with CFS/Post Viral Fatigue started after a bad spell of viruses, difficult personal situations which culmulated in a four month flu virus (thought was glandular fever but tested negative in the end) same symptoms though. 6 months after recovering from that I developed chronic fatigue. It began with a 3 month full crash where I was unable to move, eat, sleep, like i used to be able too. I was unable to exercise, and had a range of symptoms including cognitive crashes, aching arms, temperature control problems, nausea and stiff joints. It continued with on and off crashes, inability to control all of these symptoms and huge appetite problems which caused me to lose weight, and further energy.
Luckily I had a great doctor near my University who diagnosed me swiftly in October 2016 and referred me to a great fatigue clinic, the Yorkshire Fatigue Clinic. By May 2017 I was discharged and I am back to living an active and healthy life with little symptoms. I just returned from a weeks partying in Ibiza and I am able to play sport and attend the gym again.
I haven't had a crash in over 2 months and my symptoms are becoming less frequent and the amount of them are becoming less, they are also less severe. I managed to continue with my studies, although I practically remote learned the entire course and finished with a 2:1.
Recovery stories are the best and they helped me immensely in my difficult times, the most important thing for your son is that he believes that he can get better and that he gets the adequate treatment and rest he needs. I know my recovery was quicker than most and I am lucky to be young and was incredibly sporty and healthy before the illness.
'Living in my energy envelope' was a phrase I scoffed at when I first heard it but it honestly is true. Once you begin to fight and battle this debilitating condition you notice patterns, triggers and feelings in your body which should tell you your capabilities at that time. Never push through things, your body needs the rest.
Therapy was helpful for me, both mentally and occupational therapy in terms of my body and how the condition affects parts. This could be in the form of CBT or graded exercise therapy. Therapy was helpful for me in terms of my emotional background to the illness, it is vital to understand what triggered it in the first place.
It is important your son listens to his body, and if you can get a referral to a specialised clinic I would endorse this profusely. I am not cured, but I am in the latter stages of recovery and am able to do things a few months ago I would never of dreamed I could achieve so soon. Stay strong, positive and supportive, sometimes when you are not feeling well constantly it feels like the whole world is against you.
I took supplements such as B12 but I am honestly not sure if they made the difference, good to try though. Also just to double check if your son has had his full blood tests/immunologist tests as thats what I had to rule out autoimmune conditions including a rigorous hospital test on my immune system to rule out lupus etc.
Hope he feels better soon
mary96913 eleanor12697
Posted
Hi Eleanor, thank you so much for your message. I truly appreciate your telling me about your experience. It's very difficult right now but my husband and I are trying very hard to persevere. We just saw a Rheuhmatolgist today who said he does not think he has any autoimmune disease but we will take some blood tests to be sure.
kikisan eleanor12697
Posted
Eleanor,
Your story is very inspiring. I am a 48yr old woman and was very active before Jan '18. This virus has flattened me. I am finally starting to accept that it will take some time and that I have to truly rest. Although I am much older than you, I am hoping my good physical fitness level and healthy lifestyle helps me in some way to fight this beast.
I have had a load of blood tests done a couple of times. The only thing that comes up is a slightly low value for one of the white blood cells that fight viruses....I will see an immunologist to see what he thinks. I also have an appointment with a functional medical doc next week. The CBT and occupational therapy sounds like a good idea too.
Thank you for the great suggestions....How are you now?
Kiki
eleanor12697 kikisan
Posted
I’m fortunate to say I rarely check this message board anymore but I just caught eye of your message and thought I’d drop you a quick response. The only thing that was of note on my blood tests was a weak positive ANA nuclear reaction and nothing else so blood tests are a difficult indicator. They are useful however if you have an immune disease so it’s worth checking that.
Now I am pretty much functioning at full capacity, I’ve held down a job for nearly 2 months full time with no difficulty, I am able to drink alcohol, exercise etc. I have small bouts of fatigue now and again but nothing for the last 3 months.
Trying to have positive emotions towards the illness and truly believing you can beat it was hugely important in my opinion.
Was yours triggered by a virus? Hydration is absolutely crucial as I felt constantly dehydrated and like my muscles were never lubricated. CBT and therapy also helped me a huge amount.
kikisan eleanor12697
Posted
Hi Eleanor,
That's great that you don't check this board anymore - that means you are living your beautiful life!
I tested positive for EBV in early March. I am sure I contracted it while working in West Africa in January. From what I understand most people's stealth immune system is able to deal with this virus, but for some reason I am having a more difficult time. It is unclear to me whether the virus is still active or if this has triggered something else. My ANA test was a definitive negative, which is encouraging, and I insisted on an MRI to rule out MS which 2 doctors said I show no signs of...but agreed to give me a requisite for.
Yes, I am drinking a lot of plain water and herbal tea to stay hydrated! Thank you again for your tips.
Stay well!
Kiki
charlotte81811 mary96913
Posted
Mary, it does get better, slowly. Surges of energy, then need to sleep. Mono was bad enough, then just when you think you're back to normal, things are just not quite right and stay that way for months. Gradually it builds back up, energy, mood, fevers, etc.
jason74042 mary96913
Posted
Just found this thread, great to hear stories of recovery. I’m 30 years old and after 7 years of symptoms/tests have just been diagnosed with CFS after a massive crash about a month ago.
I’m one of the lucky ones and can function/hold down a job. The most debilitating symptom is the brain fog which is terrible at the moment. Now that I know what is going on I am actively working to leading a healthier life and working on pacing myself.
I am resigned to the fact this isn’t going to be a quick fix but with knowledge, inspiration from people like you all and motivation i can get better
I will try and update my journey a bit here as I know how important inspiration is during these incredibly tough times.
Kia kaha (That’s Kiwi for be strong and keep going)
After my initial crash a month ago I am slightly better
emmathehat mary96913
Posted
8 months after your original post I hope your son is recovering. My son had glandular fever over a year ago and is still ill with CFS/ME symptoms - today we've been told it's post viral fatigue. He finds it really hard not to over exert himself - but now I realise that he's got to cut his activity right back in order to recover, and that he needs to rest whenever he starts to get symptoms. My plan is to find out more about pacing, which seems to be the current approach advised for managing the condition.
heather00435 mary96913
Posted
Anyway, I remember wanting to take naps often in the afternoon which was unusual, but I continued with life. I have four young children who keep me busy, and I was taking exercise classes (barre)three to four days a week. In October/November, my legs started tingling, and I noticed my heart racing at odd times. Didn’t think much of it until the tingling started happening all of the time. Thought it might be iron or B12 deficiciency as I wasn’t eating much meat at the time. Started supplements and felt better.
By January, I was having shooting pains in fingers and toes and the pain is getting more and more uncomfortable. It’s moved up to my knees and elbows. My forearms feel weak, and I have little mucsle twitches under my skin in my hands and legs. I stopped exercising in January and now just occasionally walk. I have fatigue some days but other days, feel fine. It’s the pain that’s scaring me. If I knew what was happening exactly, I’d feel better (I think?).
I’ve seen two GP’s and two neurologists. All of my bloodwork looks normal. CT scan normal. MRI showed a few lesions on my brain but not in the typical pattern of MS, that was ruled out. Spine looked normal.
Does this sound like post-viral syndrome? I’m trying to take it easy and not stress, but it’s hard when this pain is waking me up in the middle of the night. I also get headaches and my vision seems wonky at times, but neuro said eyes look normal. No dizziness or loss of balance. Also, EMG was normal.
Thanks so much for any advice/thoughts. Neuro referred me to a rheumatologist for further testing, but my appointment isn’t until next month.
Mary, I hope your son is feeling better!! I know the body is capable of miraculous things, and I’m sending healing thoughts to your family.
john_50554 mary96913
Posted
Hi there,
hopefully your son has recovered by now but I thought I'd add my story for others who are looking for information.
I've had post viral (dengue fever) fatigue for 3 months and up until this last week it has been totally debilitating with any small exertion (sometimes just having a shower) sending me into a crash where I could barely stand or keep my eyes open. Around 70% of each day was spent in this condition, with theother 30% spent somewhere between not quite normal and really tired.
I was getting increasingly frustrated with the lack of answers I was getting from doctors who basically said, 'nothing we can do, it will pass eventually', until I found a fatigue clinic who put me onto pacing and also pointed out that lying on the lounge watching tv and feeling terrible is not really resting. As soon as I started going to lie down when I felt a crash coming on, the severity of my crashes lessened. It didn't really improve my lifestyle much (I still couldn't do hardly anything) but it did help me to feel better and avoid some of the major crashes.
Then about two weeks ago I took things into my own hands and decided to try anything. Firstly I thought, if this is my brain telling my body it needs to rest then lets work on the brain. I started meditating while telling myself I was healthy and that being active didn't have to make me weak. And when I lay down on my bed when a crash was coming on, I started concentrating on my breathing and visualising the fatigue floating out of my body and being swept away on the breeze. These two things definitely helped me shorten the length of each crash.
But my major breakthrough was last week when a doctor I was recommended who combines eastern and western medicine, suggested I try acupuncture and also a Chinese herbalist he knew. My only other experience with this kind of thing was about five years ago when I fractured my shoulder in five places and after eight months could still not raise my arm above horizontal – a friend recommended an acupuncturist who I tried, and he also gave me chinese herbs. As soon as I took the herbs I could feel my shoulder loosening up and within three weeks my arm was back to 100% movement, it was miraculous. So, back to my fatigue, I went to the acupuncturist, had a couple of sessions and didn't really feel it was doing anything. The herbalist though was a 70 year old Chinese woman who has been doing it for 50 years. She spoke to me at length and then mixed bags of herbs that I had to boil up and drink twice a day. I started last Wednesday, Thursday I was the same as usual, but on Friday I was pretty good most of the day, I was aware the fatigue was hovering nearby but I felt I could breath deeply and not let it take over. Saturday was the same except with one crash around 6pm, this was the first time I had ever had two good days in a row, up to this point it had been one okay day for nine bad ones. Sunday, tired but no crashes, Monday morning I honestly felt 100% normal but unfortunately that day I had an appointment with a hypnotherapist (I'm giving it all a go!) and then had to organise tutoring for my son... I knew it was probably too much but I didn't really have a choice. Monday night the fatigue came on fairly strong but it wasn't a major crash and with some visualising, it only lasted about an hour and a half. Today I feel pretty good but am absolutely aware that I can't push myself. The hypnotherapist also gave me a meditation podcast that I will listen to everyday.
This change after starting the Chinese herbs has been incredible. In a week I've gone from being totally incapacitated 70% of almost every day, to feeling weak but pretty good for most of every day. If I tried to go back to work I'm sure I'd crash back to square one and I think even when I do get to the stage of feeling 100% for all of each day, I'm going to give myself at least another month before I try leading a normal life with normal excercise and activity.
Although both times I've used Chinese herbs they've worked, I also know there's a bit of luck here:
1) finding the right herbalist, I'm told there's more than a few charlatans out there, and
2) everyone's body reacts differently so what worked for me might not work for someone else.
I also know most doctors will discount my recovery as luck, because they don't regard fatigue as something that can be treated with medicine. And even I admit that when my herbalist tells me what she's doing it sounds kooky and like a lot of mumbo-jumbo... but all I can say is, it's working for me.
If you are suffering fatigue I don't see what you have to lose by giving alternative treatments a go, western medicine offers up very little apart from pacing and CBT, both of which are helpful but are not really treating the cause.
I definitely feel like I'm on the road to full recovery now, whereas just a week ago my fatigue had been unchanged for 11 weeks. I can still feel in my body that I have to go very slowly but the light is most definitely at the end of the tunnel.
tammy975 john_50554
Posted
I have been sick 8.5 weeks now. Seeing internalist next wed. I feel like some improvements but am in bed alot during the day. I only do short few minute walks few times per day but its better than it was when i couldnt do anything
I see a naturopath in a month. Its hard for me to get out of house and go to an appointment.
sylvia13942 john_50554
Posted
Thank you John. My "go-to" for anything that is ever wrong with me is herbal medicine. So I was encouraged to hear your story with the Chinese herbalist.
I don't know a Chinese herbalist but do know a good Western one in my town (5 miles away) And have been to him before 10-15 years ago and at other times before that. He is a properly qualified medical herbalist. Now I think I wil book an appointment with him, when I heard your story.
I've been unsure quite what was wrong with me, and it's taken some time to realise the "virus" -whatever it was -which I came down with isn't quite leaving me after 10 weeks. CFS and PVF are new concepts for me. But I am beginning to feel that has to be what's wrong as in some ways I fit the profile for PVF.
I hope the OP and her son find a good way throgh this. My kindest thoughts for that boy. This draggy illness doesn't care how fit, strong, or what age we are. I am 64 nearly 65. But he is a young lad. I hope he will get much better soon.
The recovery stories gave me hope. I need some hope.
john_50554
Posted
UPDATE: okay, so the miraculous recovery with the herbs lasted about three weeks and then I fell back to having severe fatigue once or twice a day, some days only for about two hours in total and others for six or seven. I tried stopping the herbs to see what would happen but it got worse so I went back on them again and it evened out to the once or twice a day routine. This kept up for around another six weeks and then the week before last I had a very up and down week with some days where I was out for pretty much the entire day and then the next day I'd be almost entirely fine. On the Saturday I had a friend's 50th birthday lunch and I was determined to go to the lunch enjoy myself to the fullest and damn the consequences... so that's what I did, the lunch went all day and into the night, I felt a bit weird at the beginning but after a few glasses of wine soon forgot about it.
The upshot of this is since that day I've been 100% fine, no fatigue, no sick feeling, just... normal. It's been nine days now, I've stopped the herbs and have started doing excercise again. I used to work in construction and my job was often very physically demanding; right now I don't feel I could do that again and to be truthful I don't know if I ever will, there's something deep inside me that fears it would set off the fatigue again, but who knows, maybe in a few months I won't feel like that any more.
I'm pretty sure I'm over it, there didn't seem to be any reason why I got better and there were no signs except perhaps the wildly fluctuating fatigue in the week before. It lasted five and a half months from the time I got the dengue fever. But it really feels like it's over now so you can tell your sone it can happen at any time. I hope he recovers soon if he hasn't already.
Cheers,
John
lowri74841 john_50554
Posted
Thanks for sharing your story, my PVF is also from having dengue fever 3 1/2 months ago now. Not that you recovering means I will but it gives me some hope that feeling like I’m completely fine one day and then having a crash the next is normal and hopefully on the way to recovery.
I go to acupuncture regularly and really feels like this helps but will add meditation onto my list of things to look into - mind over matter hey!
suhas91438 lowri74841
Posted
hi lowri,
how are you now ?
have you recovered ?
I am also suffering from post viral fatigue after dengue , can you plz describe your symptoms and your way to recovery
lowri74841 suhas91438
Posted
Hey,
I am a whole new person now compared to when I wrote this! I wouldnt say i am 'back to the old me' and perhaps never will be but I'm really happy with how I am 😃
I now do a masters full time and have a part time job on the side and still have the energy to socialise - so its pretty great and i hope this gives you some confidence. I dont know how bad your post viral fatigue is but for me 10 months ago even walking up the stairs in one go would knock me out.
when I first got home I couldnt really eat as my body was so drained even digesting food was hard so I had to take naps after evey meal! I also couldnt have caffine as it gave me a huge headache. I felt really almost pained in my mind like each thing (talking, getting in a car, you name it) was such an effort and my emotions were all over the place, I would cry at anything.
for my recovery I think it was based on mental attitude, the doctors gave me no hope, they had no idea what i was going through, so i sought alternative treatment - traditional accupunture really helped me, as did really focusing on my nutrition (not eating anything which would normally make a person feel sluggish, lots of freah veg, protein). I also looked into the 'spoon theory' which i highly recommend. i also set myself weekly exercise goals - this started as just walking up the stairs in one go and progressed (VERY) slowly to now i am a runner which i never was before! I think excersise is really important for the mental aspect but do not push yourself as you will only make you worse, which is very frustrating i know. also my fatigue was worse with mental activities like socialising or reading so if yours is physical exertion then definitely take another route but i think the main point is small achieveable goals.
all in all my recovery has taken over a year, i hope yours is quicker also know that you just dont know where you'll be in a months time!
If you'd like to talk more I am happy to help in any way I can, one of the hardest things for me was that i felt so alone as no one can really understand what you're going through so just know youre not!
heather00435 suhas91438
Posted
Don't lose hope. I developed post viral fatigue after a throat infection in the fall of 2017 and have commented on this thread a few times.
Recovery was challenging and a long road, but after about nine months, most of my serious symptoms were gone or going away and now, about a year and a half out, I feel like my old self.
My recovery was similarl to lowri74841's. Doctors were at a loss until a neurologist specializing in MS finally diagnosed me with post viral fatigue and told me that I would eventually get better. I needed to hear that from a medical professional, and it changed my whole mindset. So, know that you WILL get better. Make that your intention.
Rest helped me a great deal, and I still seem to require a lot of sleep. But, I'm back to exercising - any sort of workout before would leave me napping the rest of the day. I also saw an integrative medical doctor who out me on iron and thyroid supplements, which also helped tremendously. So many doctors had checked my levels, and told me I was within normal ranges. However, my ferratin levels were way too low, and my T3 and T4 levels were off. So, find a doctor that will check those for you if you can.
I experienced both mental and physical fatigue, and the memory loss was so scary. I couldn't remember friend's names sometimes, and if I was in a crowd of people or around loud noises, I would become disoriented. That all got better too, and I don't really experience the brain fog much anymore, but I do get a physical twinge every now and then. I just move on and try not to worry about it. A positive outlook helps so much!
Hang in there, and I hope you are able to get rest and help when you need it.
suhas91438 lowri74841
Posted
Thanks very much lowri
can You plz share your whatsup number or email_id with Me.
Regards
Suhas
suhas91438 heather00435
Posted
Thanks very much Heather
at start how severe was your fatigue ? ,mild , moderate , severe ?
My fatigue is severe , I am not able to work and have become house bound
I get up little fresh in morning but after doing activties of 30 to 45 mins My fatigue increases, feel fatigue after eating as if all energy is consumed for digestion especially after morning breakfast , generally feels fresh and better after 9 pm at night,
how much does your pattern match with above symptoms
how much sleep /rest and activities do You suggest ?
I am vegetarian, what is diet and supplements You suggest ?
heather00435 suhas91438
Posted
My fatigue was moderate. I was still able to get out of bed and function, but as a very active person before the fatigue hit, not being able to exercise without completely exhausting myself really threw me for a loop. I went from doing group fitness classes five days a week to not even being able to take a short bike ride without shaking and collapsing on the sofa.
That being said, I have young children, and we don't live near a lot of family that can help. So, I knew I had to get better. I took it easy and stopped trying to exercise for a few months and eventually started taking walks. I also took short afternoon naps when I could and went to bed shortly after dinner. I probably averaged 10 to 12 hours of sleep at night. We told the kids they were not allowed to wake me unless there was an emergency. I believe one of the causes of my illness was going several years without sleeping through the night - like I literally never got a full night of sleep for years prior to getting sick. I slept with noise canceling headphones and white noise playing through them for a few months, and that really helped get my body used to fully sleeping rather than always listening for a child. At that point, they were all our of cribs and able to wake up my husband if they needed something.
Eating was hard for me during that time, but more so because I had so much fear and anxiety over what was happening with my health that I completely lost my appetite. I ate what I could and focused on mainly vegetables and protein. I tried cutting out starches to help with any inflammation, but that backfired on me. My legs constantly ached, and I became so restless. After three weeks of getting intravenous vitamins and minerals, I felt much better. I did an IV once a week and leg pain went away. Now I mainly stick to a diet of vegetables, gluten free grains, and fish and some meat here and there. I feel my best eating this way and always try and avoid sugar but get in plenty of dietary fat. You have to figure out what works best for you. I know many people swear by a primal/paleo type of diet, but it did not work for me.
I tried a lot of different supplements and took fish oil, borage oil, and another essential fatty acid but I can't recall what it was. Those seemed to help a lot with my aches and pain. I also took tryptophan and magnesium at night to help me stay calm because my muscle aches and neuropathy issues always seemed worse at night. Now I just take levoxyl and nature-throid Rx's for my thyroid, Vitamin D, and iron. Again, try and find a functional medical doctor who will listen to your issues and perhaps offer some alternative forms of healing. And try mediation, acupuncture, gentle yoga - anything that will help get you relaxed and put you in a positive mindset.
You CAN get better!
Hope this helps.
suhas91438 heather00435
Posted
Thanks very much for your reply Heather