CFS or just tonsillitis?

Posted , 6 users are following.

Hello, I was hoping for some advice. 

A little history;

At 14 I had glandular fever which lasted about three months. During this time my father passed, I had a stomach infection and lost a lot of weight. 

Since then I have had severe joint aches and pains, extreme fatigue and have felt generally unwell. I've always been a sickly person (since the glandular fever) and get tonsillitis about four times a year. Last year I had pneumonia in the winter, and I came down again with tonsillitis in February of this year. 

Since February, I have continued to have tonsillitis. It has not gone, it fluctuates in severity but I am consistently exhausted and the glands in my neck are sore. My entire body aches and I don't feel as "switched on" as I was. The severity of this increased as I completed my University degree whilst working throughout, so I was under a lot of stress. I have since graduated and am now working full time, but the exhaustion and throat issues have led to me not being able to work. I have had fainting episodes, I tend to have dizzy spells and have to sit down before I faint. I have fainted on a few occasions. I also have several sleep disorders - sleep paralysis, restless leg, lucid dreaming and night terrors. 

The past few weeks have been hell - I have felt as if I have the flu, just without the cold symptoms. My body feels as though it is under attack, my head feels full of cotton wool, my entire body aches. I can barely lift my head. I cannot do much in the day - I have to pick my battles wisely as to what I do, otherwise I will suffer more the next day. 

I have been back and forwards to the doctors, he has referred me to the ENT about my tonsils (although I have been told I will be waiting until November at earliest). I'm not convinced it is tonsillitis, I feel as though I have had ME/CFS since glandular fever and I am having a bad relapse of it or it is becoming more severe. I have been forced to take more time off work, and will be going to the doctors tomorrow.  I just don't know what to say to them, I don't know what I can actually do to get past this and get some form of resolution. I feel as if I have little support - no one seems to "get it" when I try to explain how I'm feeling, and my employer is unsympathetic. 

Does this sound like CFS/ME? Does anyone have any similar experiences? Any advice on what to ask the doctor? Any support would be greatly appreciated!


0 likes, 9 replies

9 Replies

  • Posted

    I would request Valcyte an antiviral. Ot helped Jennifer Brea. Have you watched her movie Unrest? I always wanted to have my tonsils removed just to see if i would feel better, like i swore the Epstein Barr virus harbored there. But mine werent big enuf. Had alot of sore throats. Take lots of vitamins, vit c, magnesium, theres a list of anti ebv foods on line. Rest! Dont push yourself! A big one! You'll only get worse. Good luck!

    • Posted

      Thank you for your reply! I've been taking grapefruit seed extract as I heard it has antiviral properties, and I always take a multitude of vitamins and minerals which definitely do help smile

  • Posted

    Yes, it absolutely sounds like ME/CFS. Really, classic symptoms. One pathway into this illness seems to be glandular fever (or mono, as we call it in the U.S.). Sore throat is often a symptom with ME/CFS, but since you've also had tonsillitis, that could confuse things a bit. Are you sure it was tonsillitis? You need to get plenty of rest and pace yourself. With ME, any kind of activity or stress can make the illness worse. It's critical that you see a knowledgeable doctor. Can you see an ME specialist? Most doctors are woefully ignorant of this disease. In the meantime, Google ME/CFS symptoms and do your own research. Then bring the results to your next doctor's visit.

    • Posted

      Personally I don't think it's tonsillitis, the throat swab came back clear and I've had it since May now so it just doesn't add up. I'm pretty sure it's a symptom of CFS/ME. I did have a different doctor today, who signed me off work and said I do have CFS but she would not "officially" diagnose me yet. So I'm getting there!

    • Posted

      I disagree.

      This case sounds like a weak immune system which needs boosting back up.

      As some others have suggested foods and vitamins to help give it a boost will really help.

      When a person has had the likes of mono or glandular fever the immune system takes a massive hit and needs help to boost it if it does not get the aid you are left open which it looks like has happened here so it has then been hit again multi times.

      this is one of the big things doctors neglect if you use cancer patients as example if you see a top quality team they will go through diet/exercise/sleep all three play a big role when you go through treatment and its the same when recovering from illness.

  • Posted

    It sounds a lot like CFS, and your symptoms are very relatable for me. Some people have a constant sore throat as one of the symptoms. In my case I've had chronic tonsillitis all my life (long before I got CFS). My tonsils are always abnormally large, but don't always hurt. Stress, hayfever, cold weather and reflux make the pain flare up, and I almost always wake up with sore tonsils in the morning. I've found reflux medication before bed helps reduce the pain in my tonsils when I wake up - I wonder if this would be helpful for you? I take ranitidine, it's a fairly mild over-the-counter drug, but you can get stronger prescription drugs as well if needed.

    Maybe it would also be worth investigating whether you might have an autoimmune deficiency of some sort, if you've been getting sick so often?

    • Posted

      Oh that's exactly like mine, I wake with a painful throat every single morning. Reflux medication is interesting, I'll have a look - thanks! 

  • Posted

    hI SZAM

    ?I always thought it was the removal of tonsils, that lowered my immune system to

    ?pick up this awful illness ME,  now I think it maybe the excessive  penicillin to treat

    tonsillitis  that's brought this problem,

    ?I have almost recovered but its been a long process, changing jobs to work on computers

    ?changing family life, for quite easy holidays with kids, this present hot climate is difficult

    ?to cope with, cold winters a lot easier, keep the mental attitude you can recover slowly.

    ?I'm sure high doses of penicillin has brought on IBS in my daughter, and Eczema in my




  • Posted

    Hello szam,

    I am German and I read on a German health forum, that someone got cured from fatigue after removing the tonsils. You get holes in the tonsils after tonsilitis, in which bacteria can grow, which causes a cronic inflamation. I myself have cronic fatigue, but my tonsils are ok I think. But anyway I would have problems to let remove some of my bodyparts, so if you would rather try to get an other cure for the tonsilitis, its your choice. But as I read there is a definitiv connection between  fatigue and chronic tonsilitis.

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