Post viral symptoms / syndrome

I had all your symptoms you describe. Firstly stop execsising vigorously, this does not mean laying in bed everyday. Just do gentle walks instead. The reason for your breakdown and all of our breakdowns is like someone on this thread said before about an overdrive of emotional and  physical stressors. 

By worrying and I know this from experience, your symptoms will increase. It just happens so calm down (I know it can be impossible).

I had a terrible time coming to terms with things for a few months and it stunted my recovery greatly. Relax and only do gentle exercise.

Best,

Ed x 

Just out of curiosity but did you or anyone that reads this notice these type of symptoms while being on or after a course of antibiotics?

Hi Kenny,

Yes, for me they started after a bad chest infection for which I was given 2 courses of antibiotics. That was also 6 weeks after the birth of my daughter, so I don’t know whether it was the virus (most likely), the hormonal change, if the antibiotics played a part as well as the emotional and physical exhaustion of having a new baby. I ll never know! Have a good day. X

Yes, a month after taking one course after 10 years being without antibiotic.

Yes, macrobid, and then made worse by flagyl. 

Yes, macrobid, and then made worse by flagyl. 

I first had symptoms just after I was on a big course of anti-biotics and I certainly think it’s related but then I made a small recovery. Only after did I have loads of physical and emotional stressors on my body did I then crash terribly 

I don’t think I can share website articles on here. But if you look up antibiotic side effects: horrific side effects of these common drugs. Honey colony there is an interesting article about antibiotics. I’m in the US So I’m assuming the names of these meds are different in other parts of the world. 

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You are most likely right but I’m just focusing on getting better right now. I have made a lot of progress and everyone on this forum can get better. 

I’ve managed to avoid antibiotics throughout it all.  My colleague and I at work got ill at exactly the same time. Started as a gastro/digestive thing then headaches, fatigue, ears, throat, aches etc you know the score! I guess in a way having someone else to go through it with helped. I’ve always been convinced it’s been some kind of virus seeing as we both have had it. Each week we seem to have something or other to deal with, some weeks better than others. At least we are back at work. I’m taking keffir, magnesium, vit c, zinc, vit d. Suffering with this awful sore throat and ears at present. I know it will pass as all the other things have but it so grinds you down feeling crappy every day. It’s been 9 months for us now and slow progress but I realise we’re lucky to be at the stage that we’re at and not worse. Keeping positive! X

Hi,

I’m taking the same supplements as you! I’ve been unwell for 12 months and looking to go back to work part time soon. I’m having a difficult time avoiding anti biotics as I keep seeming to get prostatitus. I’m a 24 year old male and have had no problems regarding my sexual organs before but this has been persistent (6 months on and off now). Any thoughts? (The anti biotics don’t help the M.E and I feel that without them my progress would be even better!) 

Keep going everyone x 

I’ve had to look that up. So basically it’s like a male uti/infection? Hmmm, difficult one. How soon after getting it do you get the antibiotics? Have you ever tried to see if it clears up by itself or tried alternative treatments? Could you be referred to urology to see if there’s an underlying problem? Could be separate from the ME? What does your doctor say? 

Have just read that chronic prostatitus can be different from bacterial. Can be linked to nearby nerve damage or immune disorders or chronic fatigue syndrome. Does your doctor test each time to see if it’s bacterial? If it’s not then antibiotics won’t be helping it anyhow. Sounds really uncomfortable. Sorry that you’ve got to put up with that too!

Hi again,

If it is recurrent uti issues, as Ruth says, potassium citrate helps. I couldn't seem to shake it a couple of years ago and it was very painful too! The potassium citrate cleared it up. Hope that helps. Also, drink plenty of liquids and if you can, cranberry juice. Hope that helps

Beverley

Hi, thanks for replying! 

I’ve been seeing a urologist for the last few months and there has been a bacterial infection to treat but the antibiotics are not helping or when they do clear it up it just comes back. It’s quite frustrating as I’m doing very well considering where I was but this little thing is causing me problems! 

It’s linked to CFS so that could be it and I may have to wait until I recover from that to see improvements in the prostate. 

I have spoken to a woman who had cystitis 7 times when she was in the depths of her M.E so I’m hoping that it may just clear up on it’s own! 

I’ve had it for 6 months so for half the M.E thing so it’s really just a part of it for me... 🙃

Anyway, still slowly getting better so cannot complain 

Hi! In what form can I take potassium citrate? I’m drinking plenty of liquids and will make sure to get some cranberry juice. 

Thanks for the suggestion

 

If you're in the UK, pharmacies stock it. It's in liquid form and you dilute in water in the ratio it says on the bottle. If yours doesn't stock it, a company called care+ are a distributor and pharamcies can order it in. It really worked for me and the antibiotics hadn't. Some people with ME do get recurrent uti's for some reason.

Beverley

That’s interesting as my colleague who has been ill alongside me also had a couple of months of this; recurrent uti’s. Yes Ed, I think your waterworks problem will most likely ease up as you recover but definitely sounds worth trying the potassium. I’ll let my friend know too in case hers comes back. Thanks Beverley x

Ok, I will check it out. Thank you! 

Ed x 

No worries, a friend who also had the same issue and cfs/me found it helped too.

My urologist started me on D-mannose, half a teaspoon every morning in 1/2 cup of water, and she said i should do it for the rest of my life. Also, for women, boric acid suppositories are (to me) a miracle cure. And, again, acupuncture. A Finnish study shows that women enrolled had far fewer occurences at six months, if they did some specifc acupuncture treatments. Google it. Not sure how that would work for men. Good luck. 

The episode seems to have passed, i am almost back to normal again.  Some minor twitching. The only thing that i did different, aside from my acupuncturist returning from vacation, was to go back to low histamine foods. Maybe it is some virus mediated histamine intolerance... or not. Out of curiosity, how many people on this board have had their tonsills taken out? I am trying to figure what do we all have in common, if anything. Maybe we have just similar symptoms, but different triggers...

Hi lilum,

Still have my tonsils!

My trigger wasn't viral, it was a car crash. Same symptoms-different path.

Beverley

I think that we became more sensitive to everything with this virus: that's why we developed allergies, food, noise and light sensitivity, etc. I'm trying hard to understand my triggers but it's not possible. One day I feel better dealing with stressful situations at work than drinking coffee with my friends. I have symptoms each day but I really can't figure out what triggers the worst ones. I thought it is something with food so I avoided carbs and sugar - that didn't end well and I was even more exhausted. I turned to normal food with a little bit of junk food too and eventually feel better. I even studied allergy forecasts to see if they trigger my sinusitis but nothing...it just happens. The more you worry, you feel the symptoms more intensive. Good thing is that there is same therapy for more illnesses so you can't go wrong. If someone finds out the cause, please keep us posted

I have not had my tonsils removed but I have thought about it. Feel like that could help a lot. It’s funny because I was gonna ask the same question. 

Hi Lilum,

I don't have my tonsils either. Thought about that as well but it seems inconsistent.

I would also like to know if we have something in common or whether it is completely random!

How are you dealing with fatigue? I can barely wake up in the morning, I feel I am very unbalanced and sleepy, would return to bed immediately. So more or less, I am half awake til afternoon and feel almost fine in the evening. Anyone with same issue, how do you solve it, what helps?

Alas, I go to work daily, although I did have to take sick leave more than usual. Try a glass of freshly squeezed orange juice, sounds trivial but it helped me a lot.  Somehow wakes you up. I get bouts of exhaustion in late afternoon, I had to pull off the highway a few times and take a 15 minutes nap, then continue home. So weird. Also I found that if I go for a long walk as soon as I wake up, I have more energy through the day. Try... and good luck!

Thank you Lilum, I will try it, although there are days when nothing can wake me up. I usually drink lemonade and carbonated mineral water, I guess it works similar to orange juice. However, I am not ready for long walks yet, I can walk for 10 minutes and I get dizzy after that it feels like I've climbed the mountain! However, I am trying to increase it minute by minute...I am taking it slowly and it works

I wanted to ask if any of you have sensitivity to smells? Sometimes I get headache and my sinuses clog just from strong perfume or food I don't like. So weird again - this virus or whatever.

Hi Zlatka,

Like Lilum, my fatigue tends to be more in the afternoon, I have moments when I just have to lie down. I am lucky that I can still do my job fine, and fatigue is not my dominant symptom even though there is always an underlying tiredness.

And yes, regarding the sensitivity to smells, I have had that too, but it seems to have improved. Take care of yourself, and one step at a time, you ll feel better I m sure.

Funny you should mention that. I can tell from across the room if my husband is having a glass of wine, or if the salad has vinegar.... I’m like a hound. So weird. 

I just talked to a friend, quite successful historian and writer... what i am trying to say is, not anxious, not perimenopausal (a guy in his 60s...).  Somehow we got to my symptoms (terrible, i know, i feel like it always comes up and i am one of those old ladies at a party, talking about her urine tests and gout..). He had something very similar. Had a bad cold or flu, and then, when he got to the airport in chicago (knows exactly the moment it started) he was extremely exhausted, neurological symptoms, etc, what we all seem to be complaining of. Four years later, he says for the first time this spring he wrote on his primary care questionnaire “no neurological symptoms for three months.”  Now that is encouraging and depressing all at once.  I am one year in, three more years? But he says he is now finally perfectly normal.  He did not do anything, continued with his one glass of wine at dinner, no treatments or supplements.  Had MRIs and CT scans and all that and no diagnosis. Ok, so maybe, if i am disciplined, i can shorten those additonal three years to two? Or maybe not. But there is hope.  Hang in there everybody. 

Always good to hear these stories of recovery, keep positive people! X

Hello everyone. Tricky week ref work and bad sleeping. Anyway i too am on brink of trying low histamine diet... would rule out orange juice though.. and tomatoes and tea😠 histamine intolerance not a thing my GP neighbour is aware of

I knew someone who had it for just 2 years, post viral. Everyone is different and there are 3 degrees of it once it's cfs/me: mild, moderate and severe. Some seem to get better spontaneously, like the man you know.

More research would be great : )

I also know 1 year experiences unfortunately not me I am on 14th month now...my biggest mistake is that when I feel better for a couple of days, I immediately return to normal daily activities, sleep less, which brings me back to worst symptoms and extreme tiredness. But I'm thankful because 6 months ago I couldn't do almost nothing.

Yeah, I know. But orange juice works for me. I have an app which shows me histamine content. Also works for me. I get worse when I pig out on croissants or food that was in the fridge too long and built histamine. 

Does anyone here get any recurrent stomach/digestive issues? I can be fine for a while and then again I get gurgling, wind, indigestion etc Doesn’t really seem to matter what/when I eat, it just pops up again randomly. Also the aches in lower back, neck, groin and tiredness. But now admittedly the tiredness is manageable and I can still do things, whereas once it was ‘must be in bed or i’ll pass out’ tiredness. And then some days I’m absolutely fine and feel back to normal! 

And I am on month 10 right now

Try a low histamine diet...

Aand my eyeball is bothering me. Never a dull moment. It is not an infection, it is not pink eye, you cannot even tell if you look at it.  But it’s itchy and kind of... numb, together with part of my forehead and the left side of my head. I hope i don’t get Bell’s palsy. Maybe it will be better by the morning.