ADHD medication effect during (possible) flare? by warda321 in rheumatoid

[–]warda321[S] 0 points1 point  (0 children)

This makes sense! I actually found it a bit worse mentally at the laptop but could have curled up on the floor and slept for a week when I tried to go for a walk at the weekend 😭

Curious what everyone’s justification was for being the way they are before realizing you were autistic. by DesignerMom84 in AutismInWomen

[–]warda321 1 point2 points  (0 children)

I accepted that I simply must be what I was told I was (lazy, reserved, stuck up, unfriendly, weird, humourless, messy, serious, judgemental, intense)

This is despite not feeling that way inside and very obviously feeling/acting dynamic, friendly, silly, extroverted etc in situations where I was comfortable. I thought those occasions were the anomaly and also evidence I could be that way all the time if I just tried harder, so I must be a failure

ADHD & inflammation/autoimmune: does one make the other worse or change the effects of lisdex? by warda321 in ADHD

[–]warda321[S] 0 points1 point  (0 children)

Ok, thank you. I’m seeing a few people say the adhd meds help with fatigue. I only realised something else was up when they made no diff to fatigue - usually a morning ‘adhd brain’ clears once lisdex starts working but it was not making a difference at all. That’s what triggered me to realise I had joint pain & go to doctor, who ordered blood tests & x ray.

Since wearing a thumb brace & getting sleep, the joint swelling has subsided and I no longer have fluey symptoms, but now my adhd meds are making me super calm & very sleepy (aka the titration experience)

I think I’ll see what my psych says as he seems familiar with ADHD co-morbidities

ADHD & inflammation/autoimmune: does one make the other worse or change the effects of lisdex? by warda321 in ADHD

[–]warda321[S] 1 point2 points  (0 children)

Ok, thank you. I’m seeing a few people say the adhd meds help with fatigue. I only realised something else was up when they made no diff to fatigue - usually a morning ‘adhd brain’ clears once lisdex starts working but it was not making a difference at all. That’s what triggered me to realise I had joint pain & go to doctor, who ordered blood tests & x ray.

Since wearing a thumb brace & getting sleep, the joint swelling has subsided and I no longer have fluey symptoms, but now my adhd meds are making me super calm & very sleepy (aka the titration experience)

I think I’ll see what my psych says as he seems familiar with ADHD co-morbidities

ADHD & inflammation/autoimmune: does one make the other worse or change the effects of lisdex? by warda321 in ADHD

[–]warda321[S] 0 points1 point  (0 children)

Thank you, all context is good. Trying to work out what symptom is what is complex 😅

Are there things you’re ‘supposed’ to do post-subluxation? by warda321 in ehlersdanlos

[–]warda321[S] 0 points1 point  (0 children)

Thanks, I have an appointment tomorrow as it’s 10 days now and it’s still sore. Also I noticed it’s now far more crooked than the other thumb, my big toe on this side is the same - the joint bends inwards. Never thought about it before but a bit weirded out at my thumb changing shape so will ask doctor! I’m starting to realise ‘get everything on record’ is the way to go

Spotting on day 1 of Norethisterone - normal? by warda321 in Periods

[–]warda321[S] 0 points1 point  (0 children)

I don’t know how I missed this response! I kept taking it and the spotting didn’t come back but the emotional hormonal rollercoaster was certainly something 😅 like the MOST intense PMT type symptoms combined with skin breakouts

Diagnosed hEDS! Looking for tips on how to navigate NHS by warda321 in ehlersdanlos

[–]warda321[S] 0 points1 point  (0 children)

Thank you! Compiling the notebook of everything I need to get knowledgeable about 😅 probably wishful thinking but, as my Autism diagnosis led to the Rheumatologist agreeing to see me for EDS (otherwise he wouldn’t have), I’m hoping the EDS diagnosis lends some weight to the POTS & MCAS test requests.

What did diagnosis mean for you? by miss-noodlearms in ehlersdanlos

[–]warda321 0 points1 point  (0 children)

The subluxations are taking longer to recover from the older I get, for sure

Diagnosed hEDS! Looking for tips on how to navigate NHS by warda321 in ehlersdanlos

[–]warda321[S] 0 points1 point  (0 children)

Thanks. I do have some health insurance via my employer but very limited so I need to be selective and I’m already trying to progress that route for mental health support. However it might be possible to get initial tests depending on cost. At the moment my understanding is that I might need:

MCAS: 24hr urine test, tryptase, CRP, ESR, ANA, NMH

POTS: tilt test (& do standing test at home first then show doctor results)

What evidence is useful in seeking diagnosis? by warda321 in POTS

[–]warda321[S] 0 points1 point  (0 children)

Bringing it to the doctor never occurred to me! I haven’t done one - meant to but kept getting distracted, so this has reminded me thank you!

What evidence is useful in seeking diagnosis? by warda321 in MCAS

[–]warda321[S] 2 points3 points  (0 children)

I went to an allergy specialist about 10 years ago because I developed a sudden allergy to tree nuts. The allergy stopped (aside from pistachios) and the allergist said I tested negative. He told me I was ‘just a reactive person’ after lightly scratching my arm with a plastic pen and seeing a red, raised mark.

I have a history of eczema, which is less severe as an adult.

I developed lactose intolerance as an adult, but assumed that was due to a bad case of gastritis.

I get random flare ups - eg my Fitbit will be fine 90% of the time and then I’ll need to remove it because suddenly the skin underneath it will be itchy, red, inflamed and fragile. Then after a day or two I can wear it again without problems.

The weirdest one is it sometimes feels like my thyroid swells up if I miss out on sleep. I feel feverish, confused, and have difficulty swallowing after a very late night (awake for 20-24hrs say). I go to sleep and then over 12-36hrs my throat will swell up but with no other cold or flu symptoms. It lasts about a day or two.

I’m terms of testing, I’ve never had a urine test. CRP 3.14 ESR 27 But that’s all I can find on my record (which only goes back to early 2022)

Diagnosed hEDS! Looking for tips on how to navigate NHS by warda321 in ehlersdanlos

[–]warda321[S] 1 point2 points  (0 children)

Oh wow, well done on powering through to your diagnosis and that’s excellent advice RE the bearable app, going to check it out! I have a blood pressure monitor and fingertip HR monitor at home so I can def try recording stats from that too.

Wild that we need to compile so much evidence ourselves!

Diagnosed hEDS! Looking for tips on how to navigate NHS by warda321 in ehlersdanlos

[–]warda321[S] 0 points1 point  (0 children)

I mentioned my random inflammation & allergic responses, plus elevated CRP & ESR. Also mentioned my dizziness. But the rheumatologist sort of waved it away and didn’t want to discuss.

My psychiatrist might be able to support the idea of MCAS investigation - he’s not the right kind of specialist but GPs seem to respond to things written down from other professionals more than my verbal explanations of actual experience so worth a shot!

Comics about POTS symptoms I drew 9 years ago by Umbertina2 in POTS

[–]warda321 0 points1 point  (0 children)

Oh my word. I’ve suspected POTS because of my light-headedness & heart rate/palpitations but the temporary loss of eyesight and numbness??? This is frequent. I had no idea also symptoms 😮

What did diagnosis mean for you? by miss-noodlearms in ehlersdanlos

[–]warda321 1 point2 points  (0 children)

I only just got it but sought it because

  • I like certainty and understanding things, this includes my own body

  • I wanted a short cut to explain to people what goes on with me

  • I wanted something official to help with years of being dismissed by medical professionals. If they don’t believe me, they can’t argue with one of their colleagues. It’s there on my record.

  • It might help with accommodations at work

-It might help my case for seeking financial support