What do my symptoms suggest?

[BravebutBroken]

First time posting (but long time lurker) so please excuse if I'm not doing something right 🙈 I have a diagnosis (well, several!) but am starting to question if some of the symptoms I've dismissed really add up or could I have been misdiagnosed or have something else going on. Main issue is chronic pain and fatigue. Not going to mention my actual diagnosis yet to avoid swaying thoughts. Would be grateful for any ideas of things I should consider or ask my GP about based on the symptoms I've written down on the attached image. Had joint pain for a long time, but had double pneumonia in 2019 and seemed to have gone on a downward trajectory since then. Some symptoms are there most of the time, some only when I have a significant "flare up" which seems to be around every 3 months ish I've figured. Thank you for any help/insight you can offer 🙂

Image is under review at the moment....

What tests have you had? Bloods? Thyroid, MRI, seen an optitian and a neurologist?

I have regular bloods but I'm not sure when my thyroid was last checked. Had an MRI of my pelvis but nowhere else. See an optician regularly. Haven't seen a neurologist but now thinking maybe I should ask for a referral.

There may not be one diagnosis from that list and the GP will probably want to exclude things in turn based on what is most urgent to diagnose and what is bothering you the most.

For example chest pain jumps out as needing to exclude angina before doing anything else.

Stiff painful fingers, esp if your joint stiffness is worse in the morning suggests something rheumatological.

Vaginal dryness might be an easy win if you are perimenopause age with vaginal oestrogen.

Interestingly not! You'd think that'd be the first answer right?! 🤷🏻‍♀️

I think that's kinda the problem that everything has been treated as separate problems which is why I tried to put it all on one sheet for an overview. I've been to several different specialties but nobody seems to link them together. Not perimenopausal apparently otherwise that may have helped tick something off!

If you haven't had any bloods done for ages, then you need to let your GP do their job and make a start. There are a lot of potential different referrals from your list and which is needed will come from the initial investigations your GP does.

Sorry, should have said, I've been seen by cardiologist and am on medication for my chest pain which appears to be as a consequence of Orthostatic tachycardia so any worrying cardiac issues have been ruled out 🙂

Nope perfectly healthy before hand as far as I know! 2 difficult pregnancies but recovered after. Worked full time and shift work for years until was unable to. Now just about manage in between flare ups to work a few hours. Mobility isn't always great but I manage. Then a flare up renders me pretty useless for a week or so at a time.

It looks like you've included your dx in your picture and I'm sorry you're living with an illness that's so hard to manage.
I think you should have a full bloods check, including things vit c & vit d, and electrolytes. Insist anything that the low end of normal and below is treated

Also worth a blood test to check for Lyme

I do thankfully receive some benefits and my husband is able to continue to work. It's pretty naff but I've come to terms with it now 🙂 I've had some really supportive and helpful medical professionals. A couple not so as you may expect 😂 but it's difficult when seeing lots of specialists to take a step back and see the bigger picture. I've often ignored new symptoms as I assume it can't be helped but now wonder if I should maybe share it with my GP to consider if we've missed something. But then I feel ridiculous saying that none of the symptoms are affecting me more than I'm generally affected anyway but would you like to know that x y and z happen too 😂

I'm mid 30s sorry 🙂

Some of that (but not all of it) sounds like the symptoms people get with long term undiagnosed Lyme disease. It may be more than one problem though.

https://lymediseaseuk.com/miranda-hart-lyme-disease/

https://www.bbc.co.uk/news/articles/c8705wjg2zyo

Have a look at this physiotherapist on Instagram https://www.instagram.com/dr.melissakoehl.pt?igsh=MWd3ZDN2Y2MxbnJqNQ==

She specialises in hyper mobile bodies and often talks about how she manages a host of issues that come with hyper mobility. Some of your items on your drawing make me think of symptoms she’s mentioned

Yep sometimes bed bound, like today 😩 well can just about transfer to a commode to wee thankfully! Often use a wheelchair. Husband is amazing thankfully. Mental health is not too bad. I get tearful at times, sometimes spiral and think I'll never get better, but I'm pretty good at seeing the positives and doing what I can when I can.

Apparently I have Ehlers Danlos syndrome, ME and POTs.

My balance has really deteriorated though and I have developed tremors, mainly in my legs, sometimes in my hands too. I've dismissed it accepting that there's nothing that can be done but now wondering if something neurological may be going on that has maybe been missed because the GP, and I, have just put it down to EDS. Maybe it's completely separate and coincidental but there could be lots of overlap and I've been completely misdiagnosed. Who knows. I've booked a GP appointment for a review but not sure if I'm being irrational 😂

I love Miranda Hart! Absolute inspiration! I've seen rheumatology so I assume they would have considered this. Worth bearing in mind though so thank you 🙂

Thank you. Not heard of her before, will definitely have a look. My diagnosis is Ehlers Danlos so very relevant. I'm just not sure ALL of my symptoms can be down to the EDS 🤔

Cardiologist thinks that the pneumonia in 2019 was very likely COVID and that has possibly triggered lots of issues that would have otherwise been manageable. I was (am, sort of, obviously not doing it now!! ) a nurse so could be a possibility.

I've seen rheumatology so I assume they would have considered this. Worth bearing in mind though so thank you

She had long term very serious fatigue and other problems and had seen a lot of drs and consultants but no one had thought of this -so I wouldn't be so certain about your assumption it has been considered - that's why I posted it. She has written a book I think where she discusses the issue and the problems she had - if you read those links and google, she has given lots of interviews about it when she was promoting her book.