hEDS and MCAS

[Hrhs62]

Hi, I’ve recently got my hEDS diagnosis ( also got Fibro, migraines and PoTs) and alongside this I’ve been given a diagnosis of Mast Cell Activation Syndrome. I am really struggling to regulate my temperature and feel flushed and sick all the time, I’m drowsy and get such bad motion sickness, like even if I go up the stairs. Does anyone on here have any advice about how to manage the mast cell issues, I’m taking antihistamine and anti sickness pills but it’s so debilitating to me ( as well as everything else). Any advice or experiences of having this would be greatly received. Thanks

[Saassii]

Make sure there's no mold or signs of water damage in your home or workplace, those with EDS are particularly susceptible. Exposure to microbes like this will trigger every discomfort you named.

[Hrhs62 in reply to Saassii]

Thank you for this xx I’ll cgeck today

[Tillyray]

Hi. I really feel for you and can relate to what you are going through.

I have diagnosed hEDS and severe Autonomic dysfunction symptoms, with previous diagnosis' of fibromyalgia and cfs -I understand now they're part of hEDS, as they can also be symptom's of other conditions, and that AS/POTS are also comorbidities' to hEDS-

I feel it is highly likely I'm also suffering with mcas too as I have other symptoms, but I have not had a diagnosis of this confirmed. The book 'Never Bet Against Occam' has everything about Mast cell activation disease.

It also has a website; mastcellresearch.com

I hope you're able to find some relief for your symptoms. I struggle everyday, and I am continually looking for things to help. I'm currently taking many various supplements, some of which I feel have helped some symptoms, for example Lamberts Evening primrose with Starflower has helped with regulating my nights sleep and controlling night sweats. Biocare Magnesium Malate has omitted leg cramps during the night. I have a huge fan at my bed side which helps me through the night, and I have to lay in my room most of the time so my room is always cool and calming. I frequently drink water with either sea salt or Himalayan salt added to it, and take either nunn electrolytes or Nutribiotic, Essential Electrolytes - off Amazon but cheaper if bought direct- and I was recently prescribed propranolol by cardiologist for tachycardia in relation to my Autonomic dysfunction. It's a continual learning journey, and I keep trying.

please could you tell me how you were able to get your mcas diagnosis. Thank you. Good luck with everything xxx

[Barnclown in reply to Tillyray]

Hello again tillyray..if you don’t know about them already, you may be interested in checking out the support organisations in my reply to hrhs ...i’ve included links, below ❤️

[Tillyray in reply to Barnclown]

Hi coco, lovely to hear from you. Thank you for the links🙂..I have thought about you, I hope you are ok

❤😘 xxx

[Barnclown in reply to Tillyray]

You’re v welcome! There are a few more MCAD-related groups cropping up...if you find something good, hope you’ll let us know

Thanks for asking: am recovering from scoliosis spine surgery, which, as anticipated, has been complicated by my early onset primaries (hEDS, SLE,humeralPID) + their secondaries + my age 🙄...and especially cause i’m allergic to all prescrip analgesics 🤷🏼‍♀️...my medics can’t understand how i’m coping via only my lupus meds & paracetamol & self-help techniques etc...they all look at me like this 😯...i wonder if it’s cause the opioid epidemic scandal etc means they’d rather not prescribe analgesics anyway, and i make them wonder + hope 😆...but i do admit that going without prescrip analgesics during this lonnnng recovery isn’t easy peasy 😉🍀❤️

[Tillyray in reply to Barnclown]

You are a fighter💪 and a born survivor🤛(fist pump)😉 I can only imagine what a time you've had I know it must have been very hard, but I'm pleased to hear you're recovering and I hope you continue to get better. Onwards and upwards to better health days. my truly best wishes to you dear coco💐❤💌 😘😘 xxxxx

[Barnclown in reply to Tillyray]

😍👍✊✌️🤞🍀❤️🍀❤️🍀❤️

[Barnclown]

For us, there is a good UK support group with a good closed facebook forum...i’ve been a member for a while and think it’s a pretty ‘sound’ organisation.

Here is the facebook forum link :

en-gb.facebook.com/pg/mastc...

Here is the website link:

mastcellaction.org

There is also another support group:

ukmasto.org/about-mcd/mast-...

❤️🍀❤️🍀 Coco