ME/CF/EBV/EDS/Menopause - carer looking for knowledge.

[Ineedausername]

Hi I'm new and posted in the intro subject yesterday

I'm a full time carer looking after my very wonderful mum.

She is diagnosed with:
EBV
Mast cell Disease and allergies (But not MCAS - she might have that specifically but the combo of to sick and to expensive meant we just wanted her on meds fast and her immunologist was fine with this given her allergy testing results.)
Coeliac and IBS
CF

She may have:
EDS (theres a family history)
Autonomic Dysfunction/PoTs/OI

We're in the UK, her GP is beyond crap and we're seeing the immunologist privately. She's not bedridden but can't go out often, do household tasks/cook or get dressed everyday. Loungewear is a godsend

She's on mast cell stabilizers, anti histamines, DAOsin, low histamine/FODMAP diet. Has emergency med protocol for anaphlaxis.

I would really like anyone's experiences or opinions on this...

When she was peri-menopausal she started getting joint problems, worsening digestion, GERD, developed more allergies, tired more easily etc but post menopause was when the fatigue hit her like a truck and the brain fog started. So I'm querying if there is a link. I've been reading as much as I can about immune systems and the menopause and would like to look into hrt to see if it would help.

My theory is she does have EDS and post menopause the loss of muscle tone/hormone changes did something that I'm not clever enough to understand and I've read research about how the immune system is impacted and....and...then I get a bit lost.

In an ideal world we go to her GP to discuss it but...as I've said they are crap and I'm still seething with rage after they refused to prescribe mast cell stabilizers and practically yelled at her down the phone. The last none specialist Dr we saw refused to follow mast cell protocol, ignored me intervening when my mum fell unconscious and she suffered anaphlaxis. So as you can imagine I want the next steps in her care to be not deadly. Did I mention she's my mum and I love her dearly and it hurts to watch her be treated like shite for no reason? Sorry off loading! Also i'm doing her ESA application again atm so I'm feeling all the feels.

Thank you for getting through reading this


(And if your reading Mum sorry about me writing on the internet about your menopause...!!)

 

[Misfit Toy]

I can only say that for me, everything got worse when I went into perimenopause. I started having awful food allergies, was so tired. Like horrible fatigue and my adrenals tanked. I developed pain in full force and then was diagnosed with Sjogrens. There is a correlation between menopause and auto immune diseases.

I am on estrogen, but not enough and I feel like your mom. Same exact thing. I am not bed bound, but I am very sick. Before menopause and having my thyroid removed, I was very active. Very.

 

[Ineedausername]

So sorry to read your troubles @Misfit Toy

I read your message and was inspired to do more googling. Found a Dr who does bioidentical hrt, hormone testing and adrenal testing. Read patient reviews one was from an CF/ME patient. Anyway I've sent an email outlining everything and asking if the doc is comfortable treating a patient with C.F. and mast cell activity.

I hope you gain more relief soon.

 

[Hope4]

@Ineedausername I hope you are doing well and that your mother is much better. If you are up to posting, I'd like to know if you found some solutions. All the best to you.

 

[Rufous McKinney]

Did I mention she's my mum and I love her dearly and it hurts to watch her be treated like shite for no reason[/QUOTE
Firstly: You are a saint and such a wonderful daughter to care for your mother with such grace and understanding...

Second: Minus the EDS, your description of Mom sounds similar to me. So at 48 (perimenopause) , everything quickly got much much more concerning, and the not sleeping and severe Anxiety started. The terms: Unrefreshing Sleep...just doesn't capture how it seems the body repair cycles unravel, and body systems were very disrupted.

so if the body is urgently requiring repairs and repairs are impaired, it just all cascades and symptoms grow and worsen.

For me: continuing to work and push thru these challenging times accounts for: a much greater worsening of this illness.