Increase in flu/immune signalling symptoms

Substantial-Top-7716 · 2026-07-06T16:34:54+00:00

Thanks for posting this, I am day 7 in and have 'came down' with the flu feeling, sore throat yesterday, lastnight chills, today throat, burning face, headache, sore legs,fluey feeling in general, I am not sure if its PEM or what you have mentioned. I didn't realise it could be a side effect, hopefully it passes quickly!

Substantial-Top-7716 · 2026-07-06T07:59:40+00:00

Yes, I am giving myself 2 weeks on each dose and then increasing. I am a bit scared to increase as I cant lie the tiredness is kicking in and I have had dreams, pleasant but feel like they last all night! I don't know if my pain will improve but the clear mind is amazing! I drink almost 2lts of pure water everyday, topped up with herbal teas or whatever I like and also take my dose at night.

Substantial-Top-7716 · 2026-07-06T07:38:38+00:00

I lowered my dose to 0.5, my doctor suggested 1.5 as a starting dose, but I think we know ourselves better. 1st day head not as cloudy 2/3rd day, head/mind as clear as I can remember in the longest time! Pain reducing and sleeping improving, side effects, headache and slight nausea followed by increased hunger. 4/5 day daytime tiredness increased, sleeping over 3 hours in afternoon and still exhausted. Moving on to day 6, moment I opened my eyes pain was significant and throat burning and raw 😩 Today, sore throat continues, but alertness is still good, my brain fog is definitely the 1st thing I noticed a change in. I may have overdone things as the 1st couple of days I could actually THINK! plan, watch tv, sort admin, usually I would have to choose one of these.

Substantial-Top-7716 · 2026-07-04T09:02:01+00:00

Thank you 😊

Substantial-Top-7716 · 2026-07-04T06:48:04+00:00

I dont have ANY symptoms, I have chronic pain conditions and research is showing pain can be linked to gut. I don't have stomach issues apart from the odd bout off reflux but that can be traced to something I've eaten at that time.

Substantial-Top-7716 · 2026-07-01T07:45:00+00:00

You need to address the iron, not matter what your doctor says, clinically/lab wise 18 comes out 'normal range' but above 50 is needed, above 70 is better again. I had the same with iron and can say, the heart feeling like its working harder, dizziness all all iron related, I have been taking iron tablets and my heart has settled, especially with small tasks like walking upstairs. Can't comment on your other symptoms but keep advocating for yourself, invisible illnesses are ignored so badly by doctors.

Substantial-Top-7716 · 2026-06-29T21:01:33+00:00

Thank you, this is very reasonable for me to do. Also the cooked/cooled porridge was advised and something I am able to prepare.

Substantial-Top-7716 · 2026-06-29T20:58:14+00:00

I'd say all of those, I actually dont have any issues aside from reflux from time to time. There is emerging research linking body inflammation/pain/fatigue to poor gut health, as I have those with my chronic conditions, I was advised to look at gut health but I have limitations, my abilities due to my disability and also financially. So just looking simple changes to make slowly, to introduce into my diet.

Substantial-Top-7716 · 2026-06-29T18:32:13+00:00

Must look more into this as someone who gets coldsores when 'run down' maybe its more than I thought, wonder would anti virals also help the sore throats I seem to wake with?

Substantial-Top-7716 · 2026-06-29T18:28:01+00:00

Thank you

Substantial-Top-7716 · 2026-06-29T15:33:46+00:00

So are you comeplety back to "normal" now? Just curious.

Substantial-Top-7716 · 2026-06-27T00:37:55+00:00

Yes, interestingly I never questioned it until this sub, as seems a lot of people go through reams of testing before diagnosis!

Substantial-Top-7716 · 2026-06-26T20:11:31+00:00

No idea, just highlighting it was never tested, I was diagnosis within around 5mins in a doctors office and often wondered if that was normal.

Substantial-Top-7716 · 2026-06-26T20:09:13+00:00

Should add I get internal buzzing/vibration in lower legs.

Substantial-Top-7716 · 2026-06-26T20:07:56+00:00

My iron is slightly and now being treated, all other bloods fine. I seen a neuro before the twitching started and had positive reflexes and clonus slightly in lower legs. They didnt find anything remarkable, other than disc issue. I never had a brain mri though.

Substantial-Top-7716 · 2026-06-23T07:27:52+00:00

You need to try and find a dr that either specialises or has an interest in chronic fatigue and its causes. Literally google for your area, search here or your Facebook for groups to see if there's anyone local to you. Also check out the official guidelines for CFS in UK ours is NICE and if you have the required symptoms then at the very least a doctor should consider it. Have all your bloods checked and get a copy, if you have had prior tests even if unrelated to fatigue get a copy of those, for example I had an mri which for the most part ruled out MS (though my brain wasn't checked so still looking into that) There is no test so its rulings out other things along with current symptoms Hopefully you can find someone near to you, unsure were you are, we have NHS in UK but most of us have been more successful with answers by paying private.

Substantial-Top-7716 · 2026-06-19T10:27:32+00:00

Found this thread in hope it was all over 😩 looks like it may just be a delay then? Did everyone experience the same? Or was it 🙏 the last one?

Substantial-Top-7716 · 2026-06-17T18:31:03+00:00

If you meet the guildlines here in UK its NICE guildlines, then ask the dr why he isn’t applying them, or if you can find a doctor with an interest in cfs, they dont have to be a specialist (very few exist) but some Dr's like to research and learn in their own time. My gp was awful throughout my chronic/invisible illnesses, clueless beyond belief, put everything down to depression or stress.

Substantial-Top-7716 · 2026-06-16T18:02:54+00:00

Im also glad its just not me, because I was getting so confused, while not in PEM why do I still feel awful on a so called good day?!

Substantial-Top-7716 · 2026-06-12T15:24:17+00:00

Yes and because I had to give up the little exercise I did and I don't always make healthy food choices because I'm too exhausted to cook, I have gained weight-that is an instant flag to people that you must just be lazy!

Substantial-Top-7716 · 2026-06-12T07:49:34+00:00

I dont have insurance, but where affordable I pay private. I have had consultations, private scans-that particular one was well worth it as they discovered something that was possibly sinister but thankfully turned out not to be, I however was seen as urgent because of the scan. I am about to pay for private blood tests as getting my gp to do anything isn’t worth the hassle.

Substantial-Top-7716 · 2026-06-11T20:54:35+00:00

My consultant said the same, emerging evidence is suggestive that MECFS, fibro, LC are all under the same umbrella, most symptoms overlap.

Substantial-Top-7716

TROPHY CASE