Plz tell me I’m not imagining it!

[PeachyBlossom]

My mum keeps telling me that I’m imagining this and that it’s probably normal but I know it’s not bc I knew what my neck was like before and it did not look like this. You can see it in the picture and I can feel it when I press on that area. The areas of my neck that I’ve circled in the picture feels rlly swollen and it feels so uncomfortable!!! I’ve been going through this since the end of February and I’ve gone for many tests but the doctors still don’t know what it is. I’ve been tested for mono and it’s not that and there was no strep bacteria when I had a mouth swab done so that means it can’t be tonsillitis or strep throat right? I went for a ultrasound to check my thyroid last week and that was all Normal so it’s not that either.

But plz tell me that I’m not imagining the swelling in my neck it feels like a hard swollen line down the middle of the front of my neck and 2 swollen balls on either side of my neck. I feel like my mum telling me that it’s all in my head is driving me crazy. Cause it’s not all in my head it showed up in my blood test that I have an infection in my body they just don’t know what it is!

It’s so frustrating. It’s made me so depressed having to live with this for so long I feel like it’s never going to get better. And my mum not believing me when Telling her about my symptoms is not helping.

[PeachyBlossom]

Thank you for replying! It’s so stressful going through this for so long and not knowing what it is. I’ve already taken 3 courses my antibiotics for it and it helps when I’m still taking it but each time I stop taking them after they’re all gone all the symptoms just come back again like a week or so later it’s really frustrating. I feel like whatever this is has taken my life away I feel like I can’t do anything that I love anymore because of all the discomfort I can’t even do something as simple as playing a video game anymore. I miss the way I used to be when I was healthy so much. I feel so depressed now. Waiting for everything is the worst as well like I have to wait ages for appointments then when I have tests done waiting for the results stresses me out. I just wish after all this time that I had some answers. 😢

[Laurennnnnnn]

I’m not a doctor but I had that same problem for around three years (along with some other symptoms). After a buuuuunch of testing, it turns out I have a Dysregulated Immune System and Systemic Inflammation. The combo of those two were causing the weird lymph nodes. Of course I’m not saying you for sure have either of those, but those are things you can bring up to your doctor (they don’t always test for them because they’re still kind of mysteries in the medical field).

Also, I’m so sorry you aren’t always believed!! That was worse for me than the feeling of my neck tbh

[PeachyBlossom in reply to Laurennnnnnn]

Thank you for your reply! I’ll definitely mention that to my GP next time I see them. Another person also mentioned lingual tonsils to me (which are the ones on the back of the tongue I think?) which is also hard to diagnose unfortunately cause most doctors don’t know what they are. So looks like it’s going to be a long time before I get diagnosed which is annoying. Was there any cure or anything that relieved your symptoms (especially the swelling lymph nodes that’s the worst symptom). People not believing me is really hard. Cause I know my own body and I know when somethings not right but everyone just tells me it’s all in my head. (Even someone in another group replied to this post saying that it’s all in my head and that my anxiety is just making me imagine it all either that or it’s happening because I’ve put on weight. Which I thought was a really nasty comment to make.)

Hopefully your starting to feel better now! 3 years is a long time I hope I don’t have this for that long.

[Laurennnnnnn in reply to PeachyBlossom]

I’ve heard about lingual tonsils giving people problems too! There are a surprising amount of things in the throat that cause issues and aren’t easily seen.

Unfortunately, right now I’m still in the phase of finding relief. Steroid shots and steroid pills help a lot but it’s not healthy to do that as often as I need. Resting when I need to has been HUGE. I’ve always been a walk it off person, plus with work I can’t take a lot of days off. Once covid hit and I’ve been able to sleep extra and avoid activity when I feel bad, I recover in days or a week instead of two months. Taking an allergy pill daily helps a lot (I don’t have allergies but it helps my throat/neck stay less swollen. I take xyzal because it’s the only one that doesn’t make me shaky). But overall, both of the diagnoses I have have no set cure- just guesses. Another thing is doing an anti-inflammatory diet (I uhhh can’t vouch for that one because I have not had the self control to do it 😂).

And I know it’s hard but try to listen to your body and not the people who think they know what’s wrong. And that includes doctors lol they can be great and helpful but you know how you feel and they don’t. Don’t feel bad about disagreeing with them and telling them you think they’re wrong. If they get pissy, find a new one. Finding an oncologist was life changing for me because he was willing to test my blood for everything under the sun with an open mind