Pernicious Anemia

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Looking for answers/support

So I've been dealing with #Dysautonomia #HashimotosThyroiditis #PerniciousAnemia #Spoonie and im young, I just got in my first relationship, and I'm so lucky my partner is understanding and supportive, but I'm realizing how much of a struggle this might be. Any time something gets me super excited/nervous, my heart rate shoots up and I have to struggle not to go limp and pass out. I'm careful to drink water and have food and salt before I have any large emotional moments, so that's all I know to do. Are there any experienced couples out there with tips to manage this? Thank you all so much!

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Joining!

I'm here because everything is adding up so rapidly with both medical and social, and what better community to relate with then the ones going through exactly what I am?

#ADHD #EhlersDanlosSociety #POTS #HashimotosThyroiditis #HypermobilitySyndrome #PerniciousAnemia #ChronicPain

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New to Stiffperson and not sure what to do

Hi - I lost my thyroid functionality due to toxic chemical exposure while serving in the Army. I don't regret my time in the military at all, but it is what it is.

It seems the thyroid was a doorway, and without it being shut anymore, many unwelcome visitors came in and set up their new home. Besides the thyroiditis, I now have pernicious anemia, Raynaud's syndrome, scleroderma, and the newest and most nefarious invader, Stiffperson Syndrome. I never would have tested for it without Céline Dion's announcement, and I am grateful for her courage every day.

Stiffperson, however, has made it very difficult to hold down a steady job. It has made the cold winters here painful to my muscles. It has changed my idea of my future and my plans. I took my health seriously and used to feel I could do anything. Now I feel limited and that has taken a difficult mental toll on me.

I live in the northern part of the state of Utah, in the US. I appreciate the advice here and am looking forward to learning from the experience from people here. I want to thank you in advance for your help and your insights.#StiffPersonSyndrome #PerniciousAnemia #Scleroderma #RaynaudsPhenomenon #thyroiditis

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Hello, I’m Jacqui, a newbie

Hello everyone, I’m Jacqui.

I am 30 years type 1 diabetic.
I was diagnosed with hypothyroidism about 2 years ago (levothyroxine)
10-12 or more years of fibromyalgia
and now my gp thinks I have pernicious anemia for which we are waiting on blood test results.

The fibro is very limiting but it’s the PA that’s brought me here. I’m struggling with symptoms and, at the moment, I seem to be getting worse by the day. I had blood taken several months back and while we waited for results I was put on a low dose iron and cyanocobalamin tablets and I perked up something lovely! I was meant to go and get bloods done again after finishing them but I had a fibro flare up and didn’t get them done. I guess I’m starting again from scratch now?

Right now I’m exhausted, dangerously unsteady on my feet (needing to use my walking stick inside the house), I’m shaky, my bums upset, having huge waves of threatening nausea, I’ve some stomach pain from time to time, appetite is almost zero (not helpful if you’re diabetic), struggling to hold my phone up right now and I just want it all to go away.

Is this normal? I know things will improve once I’m getting treatment but in the meantime I’ve got grumpy housemates (husband and adult daughter) and a home going to rack and ruin. I NEED to be well.

Any suggestions and/or experience shared would be hugely welcome!

Jacqui - Cambs, UK

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I’m always listening with an open heart!♥️

Advice?!! I’m now 55 and have been in therapy since 16. I’ve heard it all (voices included for free) and have run the gammet on psych meds and have done my due diligence with tons of research until bleary-eyed and on every corner of the continent. Eastern, Western, alternative and wholistic medicine.
As if having mental health disorders wasn’t enough. The universe saw fit to include multiple autoimmune disorders to my curriculum vitae. Took a few years and several doctors later to receive diagnoses.
Had to take a leave of absence from my job that I was very passionate about. But, it’s true, either find time to take care of yourself or your body will do it for you. I haven’t been back to work full time since 2012.
I’ve suspected Autism as both of my amazingly brilliant children are on the spectrum with ADHD and microcephaly. To add insult to injury, I have been full time caregiver for mom who has Alzheimer’s for the last two years. And, I’m scheduled for two upcoming surgeries to remove the final of 10 malenoma removal surgeries.
It’s mind numbing after years of treatment to still feel unwell. Wish there was truly a magic cure-all for everyone of us!!! I like to infuse humor and creativity into my day to stave off the pain and exhaustion.

#MentalHealth #Schizophrenia #BipolarDisorder #Anxiety #Depression #ChronicFatigue #ThyroidDisease #MultipleAutoimmuneSyndrome #PerniciousAnemia #Arthritis #ChronicObstructivePulmonaryDisease #AutismSpectrumDisorder #ADHD #newbietoTheMighty #BackPain #Cancer #SkinCancer #ChronicPain

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