Hi lovely

Oh god that sounds EXACTLY like me!!

I have had MRI, and X-ray, a camera down my throat and ive had dye oput through my siliva glands as they thought they may have been blocked. But no!!!  they cant find anything. The pain is now mainly below the ear and the last the doctor said it may be related to my lymph nodes but the doctos are loosing the will now and said there is nothing else they can do, so I have to wait until my follow up app which is in December!!!

I dont seem to have a croaky voice but I do get tired really easily. Everyone keeps telling me it may be stress related but I am not stressed! Well only be this anyway! The pain is unbearable at times and massaging doesnt help neith does painkillers. 

I have been reading about it a lot and we are not alone! I am going to try and up my iron intake and see how I go. It is definetly NOT mental health related lovely. I promise you that! Just noone seems to know what it is! 

It's so weird isn't it??? I say the only reason my mental health is bad is because I'm in constant pain. And yeah stress was somthing that they kept saying to me but like yourself I'm not stressed (well I am now because of this but definitely wasn't at the time it started) i Don't know what else I can try and do anymore. I haven't managed to talk to anyone in a similar position to me so I'm glad I've found someone who actually gets it. 

I totally get it lovely an happy to chat about it whenever you want. Did yours start during covid by any chance? Mine started March 20 and at first I thought it could be covid, but Ive had an antibody test and it says Ive never had it. Its just so frustrating that they keep pushing us from pillar to post and have not one clue!!! I also worried about sjgroens syndrome, but then I still have all my siliva etc. Have you looked into the symptoms of that? xx

I just get pushed back to ent each time and each time they tell me everything is clear. No I have none of the symptoms of that, mine is more in my throat and only the left side. When I swallow it feels like a lump is there but it's not, also excess mucus so always clearinf my throat. It's like a rough feeling like when your coming down with a cold and you get that scratchy throat. Mine started very beginning of March right after a bad chest infection it just never went away. The pain then started in my left ear and it's been the same ever since. It really does get you down doesn't it, they make you feel like your making it all up somtimes which is not helpful when you already feel emotional x

Mine is exactly the same. My left side too, and it is really annoying. Painkillers dont do anything but i tell you what helped slightl and that was hot lemon water. Try 2 cups a day of quite strong fresh lemon and see if that does anything? Mine felt better after a few days but once i stopped it came back bad!

I just wish someone could tell us what it is!!! xx

Okay yeah I'll give that a go thanks.! Mine gets 100x worse when I'm poorly like if I catch a cold or somthing. Same i spend most of my days worrying I'm that 1 in 1000000 that gets a miss diagnosis and they got it completely wrong.  I've just got to the point where all I do is survive my days. I am awaiting another follow up appointment over the phone to come through the post so I'll be back to square one again when that comes around. Xx

Just keep pushing them for everything you can. Dont give up! and let me know how the lemon water goes!!! Stay positive xx

Yeah I will thankyou. No I am not giving up till I get answers. This isn't going to ruin my life it's not fair. I've added you as a friend you can message me anytime. Xx

Thanks hun  and same to you xx