Can anyone make sense of these symptoms?

[MissSky]

I have a connective tissue disorder that is mainly managed. The last 10 days or so I’ve found my feet and legs to be hurting after standing for not even 5 minutes and the last 3 days pain has been constant, difficult and hurts to walk, it’s like deep muscle pain seems like the muscles get tired super easily I don’t know I’ve been elevating, resting but also stretching gently to try and ease it but nothings helping, legs are same size, soft, probably paler than normal definitely not red or hot. Also been struggling with holding my head up, it’s again like the muscles get tired after only a few moments. This afternoon my lips turned blue and I’ve started with a tight heavy feeling in my chest like I can breathe but it feels like I’m trying to raise a heavy weight on my chest and still have that pain but checked oxygen and it was fine, pulse high but oxygen was fine. I’ve spoken to drs and they are going to get back to me but struggling to put symptoms together.

It's a loose fit, but myasthenia gravis

Tight feeling on chest, episode blue lips, high pulse - direct to A+E

Yes it might be nothing but it clearly isn't and you have concrete signs that something is wrong with the high pulse.

A&E. You don’t mess around with chest pain high pulse and blue lips.

Get straight to an emergency department, the chances are the muscle aches aren’t linked to the weight on your chest feeling combined with blue lips, a patient presenting with them symptoms on my emergency department would be treated as an emergency straight away

I have MG. Like you say, loose fit but worth considering @MissSky

If it is, breathing difficulties wouldn't show with a normal oximeter test, and they need to do an arterial blood gas test

Irrespective of what it might be, with those symptoms it's worth a trip to a&e

Thank you, I’ll head up to a&e, I just always worry of wasting peoples time and I’ll look into myasthenia gravis to mention to the drs.

Never wasting anyone’s time if you need the help, hope everything goes okay, keep us updated

Is your disorder something like Ehler's danlos?

If so, this does have cardiac related conditions and this should be monitored.

Hi OP how are you?

Thinking of you @MissSky I hope you get some answers

Been in hospital quite a few days now, had so many blood tests to check for autoimmune conditions they are looking at MG, muscular dystrophies and also looking at toxin levels just in case. They are monitoring respiratory strength with peak flow and nurse has asked drs to come back and review as I’m only reaching 70 which is incredibly low but I don’t know what they will do. To answer the question I got yes it is Ehlers danlos and I had an echo when diagnosed and nothing since despite advice that we should be monitored. I’ve got no idea but feel it’s going to be a long process and will update when I know anything.

Oh how rotten, I am so sorry, but glad you are in hospital at least. Hopefully they can get to the bottom of it soon and get you a plan to get better

How are you doing @MissSky ?

Not feeling great today. Neurologist came by but didn’t seem interested in listening at all and said oh it can be done outpatient and will see you in clinic and doesn’t think it’s sinister he thinks it’s functional and I told him there is not a chance in hell I’m being diagnosed with a functional disorder I was misdiagnosed with one before and when I ended up in hospital with severe heart issues the dr said behind the curtain to the other staff not to treat me because I was faking it - turned out to be completely wrong I actually had hemiplegic migraines and they’d missed it so I’m now terrified as having Ehlers danlos which most drs think is just being flexible and not getting fair treatment is hard enough I’m not going through that level of discrimination again. He’s not even done tests except blood so he’s just assuming. Medical dr had to come in to calm me down as I was really upset so now I’m doing my own research to figure out what’s going on as it could well be the Ehlers danlos but I know it’s definitely not a functional issue.

Oh I am so sorry. It's such a horrible lonely place to be.

I've experienced that twice too. Once when I kept being admitted to hospital with severe stomach pains, put on nil by mouth and then doctors would discharge me and say I was fine. They didn't listen when I said the pain was brought on by eating. Eventually my mum bullied them into doing an endoscopy at which point they apologised profusely.

And then again with my Myasthenia diagnosis, I was made to feel for years that it was all in my head. It was only after I went for an eye test during a bit of a flare that the optician joined the dots for me and told the GP to refer me to neurology

Has anyone mentioned Guillain-Barré Syndrome (GBS)? I hope they get to the bottom of this and you get answers x

It's really lazy medicine when they just leap to functional because they haven't found an answer immediately

Just a heads up, if they are doing bloods for MG then they will probably go to Oxford labs and they have about a 10 week wait for results at the moment. It's ages.

i also have EDS and it sounds like one of my flare ups. I have a selection of neck coats I have to wear when things are bad. Also go blue frequently (when I’m not half a hot flush).

As you’ll know being in a flare is painful and stressful, which raises pain and inflammation, which exacerbates things and you get stuck in a loop.

Hope you get answers soon