First time poster, hope I’m using the platform as intended. TLDR at the end.
I was hoping to post this to see if anybody can give me any advice or point me in the right direction for a diagnosis. I am a 24 year old female suffering from a variety of differing symptoms and I have been off work sick since May. From January to March I was also off sick starting with a large 2nd degree burn that I sustained at work, a few days after this I developed glandular fever which developed into quincy and it took me a long time to recover. I have had glandular fever 4 times before this (once a year) so although it was rough I knew what I was going through. I also have previously been diagnosed with IBS, Depression and Anxiety (although before the illness I could confidently say the latter 2 were not at all an issue).
At the end of May I had been back at work for 2 months. I worked as a Barista and had done with the same company for 5 years so was very comfortable in the role. I was serving on the coffee machine and suddenly went really dizzy and disoriented, I left my shift early and had a bad panic attack because the whole episode came on in an instant and lasted for a few hours. I thought this was a one off until it started to happen all the time. At first it was once a week, then suddenly a few times a week until it was most days. I had originally just stopped going to work but was managing to do most things I would usually do like go for day trips with my boyfriend or go out and drink.
My symptoms are random and always come up in random patterns but include:
- brain fog
- confusion
- dizziness
- impending doom
- panic
- heart palipations
- headache that wraps round the forehead
- jaw clenching
- crushing sensation in chest
- cold sweats
- sensitive teeth
- overactive bladder
- stiffness
- disorientation
Another important symptom that I have been having is that since January my bladder has been so bad in the sense that I will wake up about 8 times in the night to go to the toilet and my bladder never ever feels empty. I don’t have a UTI but some urine work has shown high white blood cell counts so I have been prescribed antibiotics which have not helped. I have had a camera in my bladder that showed it looking completely healthy so no diagnosis there. It is an exhausting element of my illness but arguably the least scary as it’s inconvenient and uncomfortable more than anything else.
I used to smoke weed semi regularly and had a few episodes that seemed to correlate with that so I immediately stopped and no difference seemed to happen. Some of the episodes seemed to trigger intense panic and disorientation as well as what I can only describe as losing my grip on reality. I would be confused to the point of not knowing who my friends and boyfriend were and I would feel like I was in a bad trip. Luckily I haven’t had many of these specific episodes but I think it’s important to note that I stopped smoking weed completely at the start of May and even in December I have had an episode pretty similar to this. Even the smell of it near me makes me panic at the moment.
I was prescribed medication for balance that is also used as antipsychotic. I have a feeling this may have triggered some of the more sinister impending doom symptoms and panic as they were more frequent around the time of taking these but I am not sure. I was also prescribed Amitriptyline for my mood and incase it was anxiety. I took this for 5 days but on the 5th day I woke up distressed and completely hopeless but I knew this was down to the tablets so stopped them immediately and improved straight away mood-wise.
I also was comfortable drinking from May till about August because it seemed to be the only time my symptoms didn’t spike. I already suffer from asian flush so I never drank lots anyway but I have had to stop drinking now because my daily symptoms are just too unmanageable to go out.
At one point we considered that it May have been my contraceptive injection. I have been on the depo for about 7 years on and off and my boyfriend noticed that the pamphlet said it’s only recommended to use for 2 years as it starts to use up your calcium supply. I came off the injection and had a really good 4 weeks in october where I had no symptoms whatsoever and no anxiety about my health until one day they all came back at once. I tried taking calcium supplements which caused me headaches and had my bloods done which also came back normal so that was another dead end. I am debating going back on the injection as I find periods a bit too unmanageable with my IBS.
I have been tested for Addisons disease recently which came back negative. I have had all sorts of blood works done which I’m pretty sure only suggested I was vitamin D deficient. I have had a CT scan of my lungs, X-ray of my chest, countless ECGs that show my heart is fine, plenty of blood tests and about 70+ doctors appointments and A&E trips.
I have been told nearly everytime at A&E that it is anxiety which I do appreciate there is a massive element to it but the physical pain is too intense to just discount it as anxiety. I had a really good few weeks in October where I didn’t pay the doctors or emergency room so much as a phone call so I am confident that it isn’t just a mental thing.
At this point in December I have spent the past 2 months in and out of A&E with intense and painful symptoms. I am pretty much bedbound the rest of the time and I am housebound too.
I was coping really well in the beginning and extremely optimistic but since my health has deteriorated so rapidly and my symptoms are nearly every hour of the day now I am completely desperate. My quality of life is really awful at the minute and my support system is also suffering. I went from being very outgoing and independent to not even being able to walk to the corner shop out of fear of ‘going pale’. I have tried to push myself but between my bladder and my more sinister symptoms it’s just not possible to complete daily tasks anymore.
I used to be so comfortable and enthusiastic about socialising but now because of my brain fog and occasional stiffness as well as the risk of having an ‘episode’ I just avoid it completely. The only people I manage to see are my family, boyfriend and flatmate. I expect sometime soon I will have to move back in with my parents as my boyfriend and flatmate have lives of their own and cannot care for me as much as I need.
I hope I’m not painting too much of a sob story, I am just trying to give you the bigger picture of how the illness affects me and see if there is anything that might point towards an answer. Seeing as my health has deteriorated so rapidly my family have kindly paid for a full body MRI which I am having this week and I have asked the NHS to do any bloods tests that they haven’t don’t already. I am also on the waiting lists for Neurology, Cardiology and ENT but I know I’m about 6 months off (already 6 months in). I have also had to start therapy because of how much I am struggling with the pain and fear of dying that is coming with my symptoms.
If anyone has any suggestions at all that would be incredible and I’d be so grateful. Also any suggestions for coping mentally with the uncertainty of an undiagnosed condition would be amazing. I am going to get my boyfriend to monitor the comments so to not give myself any unnecessary health anxiety but if this sounds like something you or a relative has maybe gone through do let us know. Thanks for your time!
TLDR
24F: housebound with worsening undiagnosed symptoms since May, including brain fog, dizziness, chest pain, heart palpitations, overactive bladder, and panic. Symptoms started suddenly while working and have progressively worsened, despite stopping weed, alcohol, and the contraceptive injection.
Numerous tests (bloods, ECG, chest X-ray, bladder camera) have shown little except vitamin D deficiency. Currently waiting for neurology, cardiology, and ENT referrals but desperate for answers as quality of life has deteriorated. Full body MRI scheduled this week. Seeking advice on possible diagnoses or coping strategies.