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 🙂

Both myself and daughter have quite a few of those symptoms (she has more symptoms than me and only a few we share). We both have PoTS.

And with POTS and OH and ME/CFS/Long Covid and pretty much identical symptoms - GP not really interested in diagnosing but majorly slumped after ‘flu or covid last April

I was going to say ME with POTS and EDS. But with the joint pain, chronic Lyme is worth considering. (I see it's already been ruled out). The neurological symptoms sound like par for the course for ME.

Some of the symptoms remind me of overactive thyroid - tremors, nausea, fatigue, aches & pains….. I had POTS like symptoms when my thyroid was overactive - high heart onnstanding, feeling faint

My son had a few of your symptoms. Neurologist said after two appointments and tests that the causes were through benign tremors bought on by severe anxiety. I woukd ask to see a Neurologist get a referral.

How do you know you're not perimenopausal?

Mast cell activation?

Haven’t read the thread - vitamin B12 deficiency

Mmm I was wondering about MCAS and dysautonomia.

Hypermobile EDS

Have you had your bloods checked for vitamin/mineral deficiencies? They can worsen symptoms of other diseases or create symptoms that layer. Looking at your list possibilities: iron, magnesium, B12, vitamin D should all be checked. As well as thyroid function.

I'd guess FND (tremors, fatigue etc) bladder issues. Very very common to have dysautonomia and EDS/POTS with this as well as Reynauds, Migraine and being ND. People with FND have on average six co morbidities.

How are you feeling today @BravebutBroken ? Are you in bed most days?

Thanks everyone for your thoughts 🙂 it's helped. I tend to often ignore new symptoms and don't like going to GP unless there is genuinely something I can expect from them. I thought it'd be useful just to hear if people experienced similar and perhaps had different diagnoses so I wasn't missing something. I think it's definitely worth me having some up to date blood tests and I'll ask whether a referral to neurology may be useful to rule out anything there.

Diet varies depending on how my symptoms are. With some of the digestive symptoms I don't always have a great appetite but my BMI is in normal range.

Trying to remember all the other things to answer 😂 had an examination to check for signs of atrophy and GP says appears "normal" also have a very normal menstrual cycle. Not noticed any changes there.

I've not been diagnosed with mast cells activation but I do take daily antihistamines because my allergic response seems to flare with the other symptoms.

Small fibre neuropathy and Raynaud's have both been mentioned before although not sure I've had that diagnosed. FND is an interesting thought, may account for some of it and link it all together.

I'm not in bed every day at all. Tend to live some kind of scaled back version of normal so can do most things just not very often, need to use aids and have to take everything very slow to manage symptoms. A bit of fine balance work 😂 and then every couple of months I have a complete flare up that floors me again. Usually after pushing too far. For example my son was poorly about a week ago, so I was worried about him and probably needed to be more active, check on him through the night etc. A flare seems to last a couple of weeks and there might be 3-5 very severe days amongst that when I'm totally stuck in bed. I try to be as active as I can when I can.

I was diagnosed Ehlers Danlos syndrome in 2020 and since have been diagnosed with POTs, ME and Long COVID. Raynaud's and Small Fibre Neuropathy have been mentioned but not sure I've got a diagnosis. I've seen Rheumatology, Pain Clinics, Orthopaedics and Cardiology. Just wondered if there may be something that linked it all together but I guess that's the EDS bit. Will definitely ask for vitamins & mineral levels to be rechecked though as my iron definitely runs on the lower side quite often.

Fibromyalgia? I have quite a lot of those symptoms and thats what I have...im now the proud owner of neuralgia and tinnitus due to it. Almost positive i have reynaulds too as my hands and feel are always so cold they burn.

I have hEDS and that along with my comorbidities covers many of your symptoms in your list. It's such a fun illness. Were there some symptoms on your list in particular that are bothering you/not sure what's causing them?

My mate had a lot of these symptoms before she was diagnosed with coeliac disease.

I was also going to say MCAS. I had a lot of these symptoms before my diagnosis

Yes, my family member had too. Very difficult to get diagnosed, and so many women in particular get fobbed off with 'FND'.

I would say MS combined with Peri. What does chat gpt say?

How long ago were your pregnancies?

When you have the flare ups…. does your husband have to take time off if you’re incapacitated?