I feel like giving up

[PeachyBlossom]

Hi all I haven’t posted in here for a while but I just wanted to check in with a update. I honestly just feel like giving up.

The only good thing that’s happened since my last post is that period finally came back after being off birth control for 8 months although it’s been about a month since I last had it and it hasn’t come back so idk if it’s regular or not .

But anyways I can’t remember if I mentioned it in here but my mum and I moved in July to a different part of Sydney Australia (actually back to my childhood suburb) which means I had to find a new GP to help me with my throat, face and neck problems.

Because of this I feel like I’m back to square one. All my results should be on the computer from previous doctors since they usually are when you see a new doctor. But instead of looking at what I’ve had done already she just ordered me a bunch of tests which I’ve already had like the basic blood test which checks for a lot of different things and also a thyroid ultrasound which I’ve already had done. I tried to tell her I’ve already had that done about 5-6 months ago but she still filled out the medical forms anyways. The only different thing she signed for me to get done was a referral to a gastroenterologist to get an endoscopy of my esophagus to check for damage from indigestion since I told her I get it really bad. I’m just praying they find something there and that it can be fixed. But I know that the ultrasound and the blood test won’t have any new results since nothing would have changed in that time. I feel like she just wanted to rush me out of there because as soon as I mentioned my throat she thought I had COVID and I could tell she was scared of me and didn’t want me in there with her.

Plus my mum doesn’t want to deal with me anymore she’s been arguing with me so much lately and now she’s sending me off to live with my grandparents (who live 7 hours away from here so I have no idea how I’m going to survive that long trip when I can barely handle resting at home.) so now again I’m back to square one because I have to go to doctors there for a few months until I come back home to Sydney in November. I’m worried the doctors aren’t even that good up there since there is only one specialist to choose from and only one hospital and like 2 GPs. Why would she send me away when she knows I’m this ill? I’m worried I’ll barely be able to survive. Especially since this stupid infection happened when visiting my grandparents in the first place (I’m pretty sure I picked up something on the way there) and while I was there my grandparents didn’t hardly do anything about it. (They aren’t very sympathetic people)

But I feel so depressed. This has completely taken over my life. I’m 17 I should be out living and enjoying life (not that I can during the pandemic but still I wish I could enjoy life at home without feeling sick all day long) it’s completely changed the way my face looks my face is so fat and ugly now. I’ve got so much swelling under my Chin which makes it look like I’ve got a double chin and my jawline has completely vanished from there being that much swelling around my jaw. Plus inside of my mouth is a big swollen mess. Under my tongue has 2 big lumps on either side of it, the insides of my cheeks are swollen (one even has a black mark on it which I’m too scared to even ask what it is) the back of my throat is all red and inflamed and my tonsils have either pus or stones in them (which the doctors can’t even seem to see it but I can see it each time I look in a mirror) and I’ve put on so much weight around my stomach.

I just don’t feel happy anymore all I feel is sadness all day everyday. Somedays I just wish I wasn’t here anymore. And I feel like it’s getting to a point where doctors don’t believe me anymore. I’ve seen posts in this group where people have gone through illnesses for years before the doctors finally start finding some answers but I don’t want to go that long feeling like this I feel like I can barely survive another few months with this (mentally speaking) and I can’t even see a counsellor cause I feel too sick to go most days

I think what’s causing all this is either: damage from indigestion, salivary glands, Cushing’s syndrome, thyroid or tonsils (lingual and palatine tonsils)

This is why I reckon it could be these things:

I feel like it could be indigestion because like I said I get bad indigestion (like bad pain in my chest back and jaw, bad burning in the chest, air coming up the throat etc etc) and I’ve gotten it since I was about 10 so it could’ve done some esophageal damage. But I don’t know if that would cause facial swelling or not

And I reckon it could be salivary gland issues since the swelling is in my cheeks jaw and tongue which is where the glands are and plus my mouth is very dry sometimes.

And I reckon it could be Cushing disease because of the moon face symptom and also extreme fatigue to the point of not being able to wake up at all the morning to feeling tired during the day and wanting to go back to bed all day. Plus I have dark purple stretch marks and I’ve put on a lot of weight in the stomach, hips and thighs.

I reckon it could be a thyroid problem because there’s a big lump at the base of my neck around where the thyroid is and plus I get a lot of thyroid symptoms like fatigue, weak muscles, irregular heartbeat, depression getting worse, sleeping troubles, irregular periods. (I’ve gotten an ultrasound in the past which said my thyroid looked fine but I got a blood test which checked my TSH levels and my doctor said it was within range but people in this group said it’s kinda high. I want to get a private thyroid test but my mum refuses to pay for it.)

And I reckon it could be lingual or palatine tonsil problems cause even though my doctor said my tonsils look fine and that they aren’t big enough to be removed they obviously have pus or something on them (I see little white dots on them) but the doctor can’t seem to see anything on them. And I’m getting a lot of swelling around the spot of where the lingual tonsils are located but unfortunately none of the doctors I’ve been too seem to know what lingual tonsils are.

I’m just so terrified that I’ll never find out what this is and I’ll never be able to start my future of being an artist 😭

[Hidden]

Wow. It seems like you are dealing with a lot of symptoms and you've just had enough!

I'm afraid I don't know much about your symptoms, except for fatigue. It is so frustrating to have fatigue, and I think it can easily make you feel down.

The best advice I've been given is the same for fatigue and depression. Set yourself little micro-goals (like getting dressed). And go with your daily rhythms - I'm very slow to get started in the mornings.

But don't worry about what a 17 year old 'should' be doing. For me, the best years of my life started as an adult. Better times will come. Be kind to yourself, you're doing the best you can. Take care xxx

[PeachyBlossom in reply to Hidden]

Thank you so much for your kind reply! ❤️ I’ve been trying my best to get out of bed each day and sometimes I can do it and some days I just don’t have enough energy and it’s so frustrating even simple easy things I do at home like watching tv or playing video games is so difficult to do because I’m always so weak and tired and my neck and throat swelling always feels so uncomfortable and I constantly have this tight feeling in my throat like the feeling you get when I pill gets stuck on the way down. It’s so horrible 😢

[Hidden in reply to PeachyBlossom]

You’re doing the right thing in reaching out. It seems like those Facebook groups another person posted are a good start. And the art work - is that something you can do in bed? Maybe you could post some art work online, give yourself a boost, perhaps join an art group? Take care.

[FoggyMoggy]

So sorry to hear, PeachyBlossom. It sounds very tough especially when you're so young. Yes it can take ages to get other conditions diagnosed but this is because there are so many overlaps. I have Fibro and ME/CFS but did wonder if I had Cushings or a hypothyroidism. But it's best to try and eliminate these systematically. A lot of your symptoms do sound consistent with Cushings but you really do need a professional to diagnose you. My GP told me Cushings was rare. But the purple marks and moon face sound consistent and some people have a hump in their back. I would also suggest you get support from a Facebook group as I did. There are several Cushings Groups on Facebook and lots of support. People can advise and share pictures too! You can also try one of the many thyroid and hashimotos groups on FB too. I have learned that you really need to get other thyroids tested as well as TSH which isn't much use on its own, especially T3 and T4. I pestered my GP although they still came back 'within range'. Don't give up though, there's a lot of support out there. I'm a writer myself and so I work within my energy levels. You can can do your art work at home while connecting with people online. Because of Covid there are many people too in the same boat and though it's not the same you can have virtual meets and sessions. x

[PeachyBlossom in reply to FoggyMoggy]

Thanks so much for your advice! I didn’t actually think of Facebook groups I might look a couple of those up later! 😊But yeah cushings disease does look the most likely because of the symptoms I’m just worried about asking to be tested cause they probably think I’m “too young” to get it. Unfortunately every doctor I’ve been to doesn’t seem too concerned about anything cause I’m still young and they reckon all young people are always healthy 😣

[FoggyMoggy in reply to PeachyBlossom]

You're welcome, PeachyBlossom. Yes, I've found Facebook groups very helpful and I'm sure you'll find other young people too or someone who will know a younger person. Yes some doctors aren't at all helpful, it's the same when you're older - they just put it down to - well getting older! Sometimes you need to keep pestering them or find one that is more sympathetic of you can. X

[PeachyBlossom in reply to FoggyMoggy]

I’m going to try and keep pestering my mum about the private thyroid test though since my gp doesn’t test those ones but my mum doesn’t want to spend that much money just to get me tested

[FoggyMoggy in reply to PeachyBlossom]

GPs don't routinely test for the other thyroid tests unless your TSH is indicating that there may be a problem but they should really get a full picture. They are pretty hopeless with thyroids and especially if they're within range, but don't give up! You can ask them to say you just want to rule it out. I always find it helps to email them in advance. You can always say that Thyroid UK suggested it if you want to get a bit of backing behind what you said (although some GPs don't like to be told!) Bets of luck x