A week after the flu.... :(

[MiamiMatt]

Hi Everyone this is my first post, I have mostly been just a reader on this site but my symptoms have got so bad lately I had to post a question.
I got diagnosed with CFS 6 months ago and for the most part just had not so severe fatigue and cognitive issues, I was able to get through my day with a nap in the evening.
Last week I had the flu, influenza a (confirmed by a swab in my nostril test), ever since I stopped having fever I have been 10x more fatigued and basically bedridden. I also cannot get rid of the cough and infected phlegm. I hate to say I was OK before the flu but at least it was manageable. Can anyone with experience of getting the flu and having cfs let me know if this will be the new norm or does it take some time?

Please help!

 

[SOC]

Yup. H1N1 made me much worse. I suspect that you will feel better, but it will take longer than you expect it to.

You might want to go to your GP to be checked for bacterial pneumonia. It can happen after flu especially when you have an impaired immune system. Antibiotics can be a big help there.

 

[MiamiMatt]

Thanks for the reply SOC!

Anyone else?

 

[Undisclosed]

We have a really vicious flu here in Ontario. I got it back in December about a week before Christmas. I really regressed symptom wise. I am still weak now and keep getting fevers and sore throats. I did see my Doctor last week and he said that most people are not recovering fast from this strain and to just give it time. I developed tonsillitis after the flu and was given antibiotics which helped. Though my recovery has been very slow, I do believe I am slowly feeling a bit better then I have been over the last month. I am hopeful.

 

[MiamiMatt]

I hope you feel better Kina and thanks for the reply. I don't get sore throats, post exercise malaise , fevers, or have pain, just bad fatigue (extreme exhaustion) and cognitive issues. My cfs doctor in nyc (susan levine) said my presentation of cfs was atypical, because I don't fit the standard definition of CFS. Still ruined my life

Anyone else have CFS like me?

 

[Valentijn]

I think fevers aren't typically part of ME/CFS anyhow. But with post-exertional malaise missing, you might want to be more aggressive in looking for an alternative diagnosis.

Also, once we have ME/CFS, I think there's a general lack of getting the flu, etc ... though PEM itself can look quite a bit like the flu, minus the fever.

 

[justy]

Hi, i have had the flu recently and it ook me a bit longer to recover than someone without M.E/CFS - i fit all the criteria for M.E (ICC, CCC) and still get rpeated colds, flus and infections. I think it is very very important that you rest totally until you feel well enough to slowly be back on your feet. Sounds like you might also need some medical help for the infected phlegm (have you had antibiotics yet?)

As SOC said, our immune sysetems can be impaired and might take longer to fight infections etc.

I had a bout of measles followed by pneumonia which has very seriously set me back for the past 4 years. It is imperative you dont push through and end up worse off than you were before.

Lots and lots of bedrest - i also suggest high doses of vit c, magnesium and antioxidants to help you along (b12 injections helped me enormously)

If the couch/infection hasnt cleared up after trying two courses of antibiotics than i would suggest asking your doc for a short sharp course of steroids - there is nothing worse for PWME than infections and the like dragging on. My pneumonia 4 years ago took 12 months, 14 courses of antibiotics and three courses of oral steroids to clear up - not scaring you, just a warning to be on to it. But it sounds like you have a good M.E/CFS doc in Susan Levine, whereas i was being treated by ignorant GP's

Good luck with getting better - do keep posting and letting us know how you are.
Justy.

 

[Jemal]

I have had ME/CFS for a few years now. I have a mild form and was able to work. Lots of fatigue, pain, etc, but most days it was bearable.

Last Christmas I got the flu and it wiped me out. I have been very sick for 3 weeks now, extreme fatigue, headaches, muscle aches, etc. It was like my symptoms just got 20 times worse. Still very sick and I am starting to get very worried. I can't work in my current condition. I got some pretty heavy antibiotics from my doctor and I am hoping they will make a dent in my symptoms. I think I was developing pneumonia.

What is weird is that I am getting fevers now and I haven't had those in about 12 years.

My doctor thinks I have the influenza B variant by the way, not that it matters much. He also said he got many patients that didn't recover quickly from it.

Like you I am wondering if these symptoms are now my new norm... I hope not as it would leave practically bedbound. I was always afraid this day might come, considering many patients were doing much worse than me. The worst part is I got brainfog again, which I got rid off a few years earlier somehow. It's the worst symptom for me.

Taking lots of supplements now, including large doses of B12. Trying to carpet bomb whatever pathogen that is bothering me...

 

[ibenagnes]

As others said, you should be checked for pneumonia or bronchitis.

I often get that from having the flu.

 

[MiamiMatt]

Thanks for all your responses. Jemal I hope you feel better, please keep me updated. I am in the same exact boat as you. I had influenza A.

Had my lungs checked by a friend doctor and they are clear, the phlegm is getting lighter and lighter. I keep bringing it up and expelling it.

You know what sucks the most, is that even in bed its awful, my limbs feel like they weigh 500lbs. I almost prefer to be upright and tired. And its weird but when I force myself out at night as tired as I may be after a while the tiredness goes away and I energize.

Can anyone tell me what vitamins they are on generally and for the flu days? Including doses?

 

[SOC]

I have had ME/CFS for a few years now. I have a mild form and was able to work. Lots of fatigue, pain, etc, but most days it was bearable.

Last Christmas I got the flu and it wiped me out. I have been very sick for 3 weeks now, extreme fatigue, headaches, muscle aches, etc. It was like my symptoms just got 20 times worse. Still very sick and I am starting to get very worried. I can't work in my current condition. I got some pretty heavy antibiotics from my doctor and I am hoping they will make a dent in my symptoms. I think I was developing pneumonia.

What is weird is that I am getting fevers now and I haven't had those in about 12 years.

My doctor thinks I have the influenza B variant by the way, not that it matters much. He also said he got many patients that didn't recover quickly from it.

Like you I am wondering if these symptoms are now my new norm... I hope not as it would leave practically bedbound. I was always afraid this day might come, considering many patients were doing much worse than me. The worst part is I got brainfog again, which I got rid off a few years earlier somehow. It's the worst symptom for me.

Taking lots of supplements now, including large doses of B12. Trying to carpet bomb whatever pathogen that is bothering me...

I was moderately affected with ME/CFS until I got H1N1 influenza and pneumonia. After that I was bedbound until I got antivirals. It's likely that my immune system couldn't handle it all and multiple herpesviruses reactivated.

If you have the option, this would be a good time to see a good ME/CFS specialist and get tested for infections because your herpesviral titres will probably be high. That's a good reason for antivirals -- especially if you are hoping insurance will pay.

 

[MiamiMatt]

which antivirals did you get? I got tested and only came back positive for HHV6

 

[Jemal]

MiamiMatt, at the moment I am taking:

- ibuprofen 200 (twice a day)
- paracetamol 500 (twice a day)

These are mainly for the pain and fever. Normally I took only 1 Ibuprofen 200 each day.
I also take Omeprazole to protect my stomach, as Ibuprofen wrecks it and my stomach is very vulnerable like that of most ME/CFS patients.

Supplements I am taking daily:

- Q10 100mg
- B12 10mg (400.000% of the recommended daily dose for my country). I have smelt pills, that I put under my tongue. Even if my stomach wouldn't be able to absorb the B12 I would still get some through my tongue.
- Also some extra vitamin D, a B complex and some calcium and magnesium. These are low amounts, just the recommended daily doses for my country. I found out that taking too much vitamin D makes my symptoms worse. You need to be careful with vitamin D anyway, as too large doses can be lethal.

The Q10 and B12 have helped a lot with my disease, I think. The B12 mostly eliminated my brain fog. The Q10 gives me some extra energy.
I tried a lot of supplements and eliminated the ones that I didn't think were useful.

Oh, and I am taking Klacid 500mg at the moment, the antibiotics I got prescribed. It's called Clarithromycin internationally.

I ordered some extra Monolaurin as well. It might help with some viruses. It's one of the supplements I dropped.

I live in the Netherlands and I don't think we got any good ME/CFS specialists. Also I don't think GP's over here are enthusiastic about antivirals. They want you to ride out viruses, unless you are really having bad problems. I never heard of anyone getting antivirals. I can get loads of antibiotics, no problem. At one time I got a month of Doxycycline from my GP after just asking him, to try and see if they would help my symptoms.

Got a fever again tonight, 4th week now. Chest is starting to hurt and I am starting to cough. The weird part was that I didn't have any lung problems the last couple of weeks, while Influenza mostly targets that area at first I think.

Probably will go back to GP this week and I am guessing he will be ordering blood tests...

 

[SOC]

Got a fever again tonight, 4th week now. Chest is starting to hurt and I am starting to cough. The weird part was that I didn't have any lung problems the last couple of weeks, while Influenza mostly targets that area at first I think.

Probably will go back to GP this week and I am guessing he will be ordering blood tests...

That sounds like you might be developing post-flu pneumonia. You might want to ask your doctor to check for that, it could get serious

I live in the Netherlands and I don't think we got any good ME/CFS specialists.

Have you thought about KDM in Brussels?

 

[Jemal]

That sounds like you might be developing post-flu pneumonia. You might want to ask your doctor to check for that, it could get serious

Yeah, I think my doctor gave me antibiotics to try and prevent this. Still have some left, so I am waiting to see what happens now.

Have you thought about KDM in Brussels?

Yes, too expensive and I have read mixed stories about him on the Dutch forums. If my ME/CFS stays at this level however, I might reconsider. He's one of the few serious specialists in my vicinity. I do believe he has a rather large waiting list as well.

 

[SOC]

Jemal Sounds like you're having a really rough time. Hang in there. With luck, once you're past the flu and possible pneumonia you'll be back to your old self.

 

[Xandoff]

Bless you all who have the flu. I haven't had a cold in eight years. As a child I had severe allergies and asthma. When I came down with ME CFS I came off a couple of stressful years of business traveling when I would get at least 4-5 colds a year. People with asthma and allergies (my childhood) have a Th-2 weighted immune system like those of ME CFS folks. I don't take the flu shot as my TH-1 immune system is dormant and it makes me sick in years past. Many of us have faulty immune systems. Who here doesn't get flu shots like me?

 

[Clodomir]

:


I live in the Netherlands and I don't think we got any good ME/CFS specialists..

Hi jemal,

You can find some dutch specialist here: http://www.me-gids.net/module-Info-view-pid-15.html

Have a good day


Clodomir

 

[Jemal]

Thanks all. I am starting to improve somewhat, but fatigue and brainfog are pretty crippling. Most of the other symptoms are manageable.

 

[Jemal]

So how are you now MiamiMatt?

I think I mostly got rid of the flu, but the fatigue and brainfog are still very crippling. So at the moment I am definitely still a lot worse. Most of my other symptoms are back to normal.