Constant sore throats not fixed by antibiotics, could it be CFS ?

Brain and nerves
1

My problems started 6 years ago just after my 2nd pregnancy. I started getting regular sore throats , although mild in pain in the throat, along with fatigue and headaches. I and my doctor have always assumed the problem is coming from my throat (I always have 1 tonsil slightly white but never swollen and I never get a fever). So my doctor over the following years has always prescribed antibiotics. But I always relapse. I never pass the sore throats on to my family members so it's not contagious and I never get a fever. The worse symptom is the fatigue and headaches. During a relapse I will sleep very well but wake up still feeling tired and headache. I have sometimes done exercise (mild exercise) and one time in particular I did a few squats and lunges at home and then spent 3 days feeling totally totally exhausted. The tiredness did not seem in balance with the small amount of exercise I had done. If I have a particularly busy day I sometimes feel the fatigue coming and I know that the next day I will have a mild sore throat and fatigue.

However I have had periods of time during the past 6 years where it seems to have gone away. I can do lots and not get ill. I am positive minded (therfore I'm not depressed) whenever I am feeling well I think I've beaten it and It won't come back. But when it comes back I feel so disappointed that it's back and I know it will be another cycle of a few months that I will be ill again.

It is only recently that I have considered that it might be CFS and that is causing my sore throats. Up till now I have thought that it was the sore throat causing the fatigue, but maybe it's the other way round?!

I wondered if anyone has an opinion on reading my story.... I don't think it's as severe as other cases I've read, I'm not totally bedridden, maybe it's possible to have a mild version of it?

What ever, it's really affecting my life. I hope I can figure out what to do !

Thanks

2

Hi there

Sorry to hear of your problems. I can only keep this short at the moment so please bear with me !

Antibiotics will only work if it is a bacterial infection. Apart from a few specific antibioics that do treat specific viral infections. Also an antibiotic will not work if the bacterial infection is resistant to it.

I have had continual ME for 21years now. And over the years has exacerbated. I ended up as I am following winter vomiting, quickly followed by four throat/chest infections. I was nursing on a paeds respiratory unit so plenty of infection flying round. But whatever all this was , it was amongst several of my colleagues too. No one was successfully treated with antibiotics so must have been a nasty virus. They all got better with no after effects. But my health did not improve . cognitive problems featured highly at the start and fatigue which got worse. Long story , but eventually I had to take a year off sick , no better so forced to take ill health retirement in my late 30s.

I will say that indeed frequent sore throats have persisted all through these years. Maybe just be for a few hours then goes away. Neck glands swell too. Both are common regarding CFS/ME.

There are varying degrees of CFS/ME. Ranging from very mild to very severe. I am moderately to severely affected. Not bed bound but i am housebound.

Some people who are mildly affected find they are able to work. But get fatigued if they overdo things. Some can be fine , then have a period of not feeling too great. So yes it can be possible to be OK for a bit then drop off for a bit.

I assume your Dr has done blood tests to rule out other things ? Something that is sensible when your symptoms are present. There are no specific tests yet to diagnose CFS. It s a diagnosis of elimination of other diseases and conditions.

Little is still known about CFS/ME . GPs are poorly educated about it anyway. One thing that is more dangerous than helpful is exercise. Despite being told by most GPs it is the way they o go, it actually isn't . it has done more damage than anything.

When you are feeling unwell it is best to rest. Great to reman positive but don't push yourself too much. I have no idea if you do have CFS and you are having relapses. It would not be right for me to say you have ! But do push for blood tests just to see if there is anything else. I know it is a difficult situation. Many of us have been there .

Take care

3

Thanks for your reply. Sorry to hear you too have had problems for so long.

I forgot to say in my previous post that over the years I have had lots of tests. All blood tests come back normal. No problem with my thyroid. I've had swabs of my throat which didn't show anything up. I have been on antihistamines since April (doctor suggested it might be allergies but I have never had allergies before now, I'm 40) . I was kind of hoping for the blood tests to show something like a lack of iron then I would know what it was and take iron supplements and everything would be sorted!

I've just finished another round of antibiotics and that hasn't helped so I'm done with taking those for no reason. I had a busy couple of days this week and voila, today I feel awful. Which is why I have been looking more seriously into CFS.

Thanks again for your advice . It helps to hear from people in similar situations because it gets lonely being the one who is ill all the time

4

Hi again

Apart from the horrid symptoms, the hardest thing is nothing showing up in blood tests , MRI etc. At least with a diagnosis of something , you feel there is something to work with and hopefully that and move forward with. Before my diagnosis a friend/colleague of mine had breast cancer but always said she rather that than whatever was wrong with me. Said said at least she knew and had a treatment plan. I had nothing .sadly her cancer returned to various parts of her body nine years later .

If you feel you are getting nowhere with your GP, may be a good time to ask for are referral. I did and it was the best thing I did as at least I had dozens of tests eliminate other things the go hadn't covered.

Are you in the UK ? Take care x

5

Has anyone investigated acid reflux? I use to suffer really badly but didn't have classic symptoms so it was never considered. An 8wk course of a PPI resolved all symptoms, one of which was constant sore throats. I now take the PPI every day and sore throats are a thing of the past.

6

You're very smart to think of ME/CFS. This is a spectrum illness, like autism. Some people are mildly affected (lucky them!), and some, about 25%, are bedridden or housebound (like me). The red flag for this illness is post-exertional malaise (PEM), which you clearly describe. That means that you can get exhausted way beyond what is normal after doing an activity. Sore throat is definitely one symptom that some people have with this illness. 

7

Well every time I go to the doc the first thing he asks is if I have reflux. I have it very very occasionally so I say no but I know you can have silent reflux. So you know what, I did get the PPI from him once but never took them as I didn't think it was that. But I'm going to give it a go.

You never know it could help, can't harm in trying and if it works I will let you know!

Thanks for your advice

8

I take omeprazole as I have to take daily aspirin. But have awful reflux too so should help that. But it hardly does. Although struggle to take it everyday as makes me feel peculiar and more nauseous than I always do anyway. I tend to take it every other day on the whole.

Like any drug it has side effects.

Even after all these years I get sore throats not associated with the reflux. X

Hope it helps leapuy . x

9

I have CFS. I have a constant burning sore throat. All blood work is fine and endoscopies never show reflux damage but they show inflammation. Mine has now been linked to inflammatory cytokines. People with CFS have high levels of inflammatory cytokines and an elevated tumor necrosis factor. This aspect is never discussed enough or talked about much in regards to sore throats that never respond to antibiotics and have no infections. It's an overreaction by your body. Prilosec didn't work, antibiotics didn't work...I just take extra natural enzymes and watch what I eat. It helps but doesn't eliminate it. If medicine isn't helping, it's most likely and inflammatory cytokine process. It's also referred to as MCA or mast cell activation. I hope this helps.

10

I have CFS/FMS but since I’ve been sick my allergies have increased and my immune system is weaker. I had a chronic sore throat all last year until I started taking concerta and it fixed it. Chronic sore throat is probably caused from post nasal drip caused from allergies. Before you get on meds for CFS, etc check your b-12 and D-3 levels , if either are even borderline low you can have all of your symptoms. B-12 has to be taken by injection until your levels are good and your body has perfect homeostasis. You can’t absorb it orally. Vitamin D however can be taken orally. Get them tested and research the levels. The US has some of the lowest level standards of acceptable b-12 levels and 60% of population  is below even that, it’s not due to vegetarian or Veganism diets, eating meat can actually make it worse by blocking the absorption. Anyways, the idea is to raise your immune system. Research “80–10-10 by dr graham Douglas” but overall eating Whole Foods is always a minimum requirement if you want your body running properly. Staying away from all dairy (mucus forming) can help with PND/sore throat. Check off everything else before going straight to CFS / FMS since there’s no tests it’s purely on eliminating all other potential causes. 

11

Vitamin B12 can absolutely be absored orally. One of the most frequently used form of B12 supplementation is sublingual. It's just a dropper under the tongue. My level tripled in one month using sublingual and was effective in restoring my levels. B12 is absorbed in the stomach and can be injected into the blood or taken orally in liquid for rapid absorption.

12

then you’re one  of the few and far inbetween. sublingual assimilation of b-12 is very low, but straight oral as in where you swollow has zero absorption according to science. They sell pet rocks and stars that you can own as well as many other supplements that don’t work. I worked in the supplement industry for 9yrs during medical school. Some things should never be on the market, like potassium in a pill or b-12 in a pill but they want money. Most people with cfs/me have been linked with digestive issues as well, which is they key to keeping a proper environment for b-12 to thrive. Many could also take sublingual b-12 (even the methyl form) or b-12 patches and never have their level increase which is all too common. That’s awesome you fell into the  the low percentage of sublingual b-12 working though. I’d hate to see someone waste their time and money hoping they’re in the low percentage when the shot is cheap and works 100% of the time. 

13

I tried three different types of B-12 shots, and none of them improved my symptoms. Sometimes, these shots actually made me feel jittery. So, as with everything, trial and error is key.

14

We’re you low in B-12 on your blood results? There’s a few different types of shots that contain b-12, ideally you do the pure methyl form not the cyanide one or the one some weight loss clinics sell as fat burners but really it’s just a b-12 and amino acid blend or b complex and b-12. 

Definitely no need to take if you’re not low on your blood tests or b-12 related anemic. years Before I was sick, I wasn’t low on b-12 and got a amino blend/b complex shot because of the fastest/highest absorption and wanted extra energy for school and work.. it was the best energy without the jitters that caffeine gives, I was wired for 2 days. Since I’ve been sick with cfs & fms (4yrs) and tested low for b-12 the 3 types i’ve takes from the dr do nothing feeling wise, I even tried the same complex one to see if that would react better lol. My b levels are good now. 

Not sure how long you tried the various types vs reaction times , you could be allergic, etc.  Low B-12 and D-3 levels have the same symptoms as cfs/fms so before getting on heavy meds it’s good to have those levels checked and compared to japans min levels, ours for b—12 is still considered lower than the proper range depending on the lab and dr if they’re updated or using ranges based on outdated research. 

Interesting enough, if you’re suffering from cfs, there’s a new study with some success rates from giving cfs patient oxygen (through masks) at night while sleeping. The idea is based off a study showing many cfs patients don’t properly utilize oxygen throughout their body as much as normal people. There’s other studies on targeted muscle recovery for rehabilitation patients and a link with faster recovery with the use of oxygen enhancing products (i forgot the name). I’m not sure what exact part of the oxygen conversion cfs suffered have and if supplements like uniquinal or coQ10 would actually help vs having to use oxygen tanks. I’m just starting to look into it after the high success my partners stepdad has had. He’s had cfs for over 20yrs and vertigo after having a reaction to a vaccine session mandated while he was a fire fighter he became deathly ill immediately after and has tried various drugs, diets, supplements you name it. Anyways now he can fly planes again, surf, etc and he’s like 55yrs old ish lol. He’s not magically healed but now that i’ve seen it first hand, I’m going to try it myself. 

Having such a mysterious illness is frustrating for drs and patients , not everyone will have the same reaction to supplements, etc because everyone has different genes, chemistry, diet, etc but these forums are awesome to help spread experiences and awareness to help us deal with the “incurable” unknown. 

PS. If you have similar reactions to other supplements/teas where you get jittery, make sure you drink a lot of water throughout the day or fresh coconut water to help dilute it in your system and eat a solid meal . I don’t get jittery from oral, sublingual, shots, patches but i get extremely nauseous from b vitamin complexes in pill form. I get jittery and heart palpitations from coffee but some people it makes tired or does nothing. it’s crazy how different we all are 

15

Im not in the minority on this at all. B12 is delivered into the stomach through injections or liquid sublingual form. Keep in mind we are not talking about pill form but liquid dropper under the tongue. The delivery process of liquid into the mouth isn't much different than liquid delivered by injection. both the Mayo clinic and Cleveland clinic have tests and studies now that show sublingual application is just as effective as injections. It's given to patients with cfs, celiac and other malabsorption diseases. My doctor at Mayo was the first to recommend the sublingual form. The only way a person isn't going to absorb B12 sublingually is if they have PA antibodies . For needs that need to raise B12 to normal levels rapidly, sublingual had now become the norm.