Red raw throat ALL the time!

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Hi everybody I’m new here and have been recently diagnosed and am waiting for my referral to the cf clinic at the mineral hospital in bath. 

I have had an incredibly sore throat and mouth basically all year, my throat is red raw to the point of being purple all of the time and I also have a painful tongue and lips with no obvious sores. Also lots of weird facial tingling too :-/

I’ve had every blood test under the sun plus I went to a private ent specialist as I felt my cfs diagnosis’s could be wrong and something far more Sinester is being over looked due to my age and the docs thinking it couldn’t be what I fear it is as I’m not in the typical bracket for those types of things! 

I had a mri which showed I’m normal...yay! But still my mouth and throat problems persist :-/ I take a heavy b12 supplement plus other multi vits everyday 

Anybody else suffer with a chronic sore throat that looks traumatised all the time ?? 

Thanks for reading smile

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8 Replies

  • Posted

    Hi Cailin I have just been diagnosed too. Mine all started with a virus in my throat that turned into quinsy which led to me having to have my tonsils out at 40 years old. I got sepsis and have had a sore throat since but blamed it on the op being an absolute disaster for me. My throat is always red and angry looking even though 3 cameras up my nose and down my throat say everything is fine. Then recently after scans, bloods etc that show I'm the healthiest person in the surgery I was diagnosed with CFS/ME and being referred to a cf specialist. The sore throat isn't my worst symptom so I hadn't given it much thought until I read your post so maybe it's yet another side effect. I do also get tongue pain but yet again I've blamed my operation for this x

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  • Posted

    Hi Cailin I have just been diagnosed too. Mine all started with a virus in my throat that turned into quinsy which led to me having to have my tonsils out at 40 years old. I got sepsis and have had a sore throat since but blamed it on the op being an absolute disaster for me. My throat is always red and angry looking even though 3 cameras up my nose and down my throat say everything is fine. Then recently after scans, bloods etc that show I'm the healthiest person in the surgery I was diagnosed with CFS/ME and being referred to a cf specialist. The sore throat isn't my worst symptom so I hadn't given it much thought until I read your post so maybe it's yet another side effect. I do also get tongue pain but yet again I've blamed my operation for this x

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  • Posted

    I just posted for the first time yesterday. My problem has always been a sore throat too the past 6 years. Although not red raw I have dryness and 1 white tonsil. After all blood tests came back fine I'm sort of self diagnosing myself as having CFS.

    The very helpful replies I got yesterday confirmed what I had thought.... that the fact I get over tired if I do too much in a day and extremely tired if I do exercise (plus the sore throat of coyrse) is a key symptom of CFS. Does this happen with you ?

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  • Posted

    Has anyone checked you for acid reflux? 

    I would ask for an 8 wk trial of a PPI. You have to take it for the full 8 weeks as it takes about 3-4 was before you start to notice the difference. 

    I use to suffer dreadfully with sore throats until I started the PPI 

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    • Posted

      My soar throat are always negative for acid reflux. I have endoscopies that show inflammation but no acid reflux.Im assuming mine is due to inflammatory cytokines which are elevated in cfs
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    • Posted

      Mine is the same, my endoscopies show inflammation and only very mild acid backwash , not enough to diagnose acid reflux at all. I've told my gastrologists that it's inflammatory cytokines and they just look at me like I'm dumb, they want to keep prescribing ppi drugs when they don't help at all.

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