hEDS and B12 comorbidity?

[MindfulSquirrel]

Possibly a bit of a long shot but does anyone here also have a diagnosis of hypermobile Ehlers-Danlos syndrome and/or joint problems related to hypermobility as well as PA? I recently saw a rheumatologist and whilst we’re waiting on test results to rule out other autoimmune diseases, I think she was strongly hinting at hEDS with COVID as an exacerbating factor.

Is there a link between the two? I have seen on the EDS website that deficiencies in vitamins B12 and D plus iron are common. Elsewhere I’ve seen the suggestion that people with hEDS might have issues with absorbing folic acid properly.

[Nackapan]

Yrs she was severe deficient in folate too so that does make sense.

Needs a daily maintenence dose up to 600mcg ax a maintenence after the prescribed short course of a higher dose o initially

My daughter has HEDs And a POTS diagnosis.

Initially a wrong diagnosis of fibromyalgia.

It's all stemmed from a missed diagnosis of severe b12 def / PA with megobolastic anaemia.

She was young and it simply wasn't considered and has had tests for about everything else!

She may have had a predisposition as genetic.

But B12 deficiency The cause .

So definitely a connection axtou say.

It took too many years.

POTS and Ehlers Danlos also hard to diagnose.

She eventually after me pushing .

She was to ill.

Was tested intensively at Queens Uch neurological Hospital.

Tilt table tests .

B.p monitoring

Standing tests of bp.

The testing was tough.

POTS diagnosed

Blood vessels hypermobile.

Heds was diagnosed by a specialist pysio.

All the literature in changes in lifestyle and practising them wasn't enough .

Eventually in hospital a drug was prescribed and taken.

Initially refused as the pysio thought lifestyle and exercise would be enough

Diet completely changed.

Exercises that suit are pilates

Swimming.

Was told to walk more .( totally wrong ) Thus just doesn't work with POTS.

Standing on the spot despite learning calve tightening exercises ect

She would have a fit.

Called a 'POTS episode '

Took days to recover and very dangerous.

The right regime/ treatment the better to avoid bring a wheelchair user and too much pain.

[MindfulSquirrel in reply to Nackapan]

Thank you for your reply - doesn’t feel quite right to “like” it given your daughter’s experience. 😕 Is she recovering now with the right support?

It’s interesting what you say about B12 deficiency being the trigger. As I said, the rheumatologist I saw was suggesting COVID was the exacerbating factor but, of course, COVID seems to cause B12 to drop. I’ve also definitely had some traits of hEDs since childhood, and worryingly so do both my girls. 😕

Anyway, I’ve decided to try and find exercises/physio which helps hEDs before waiting for my next review and potential diagnosis on the principle that it can’t hurt. And hopefully all the ongoing vitamin treatment will help too.

[charks in reply to MindfulSquirrel]

I think many people have traits of hEDs that haven't been diagnosed. To some people it is beneficial as it tends to give a body more flexibility. Apparently there is a high prevalence of ballet dancers with some form of hEDs. And gymnastics too. I think I may have it too. I can bend my thumb back to almost meet my arm.

[MindfulSquirrel in reply to charks]

Yeah, my life long flexibility was a huge source of self esteem in my younger years. 😭

[Nackapan in reply to charks]

Yes different degrees .Mild cases like bending your thumb back .

More flexible for dance and gymnastics.

Acute cases with prolapses , severe digestion disorders , premature births ,

Chronic pain often diagnosed as fibromyalgia.

Hip joints coming out.

Shoulders displaced

Ehlets danlos has a big sliding scale.

Disabling

[Nackapan in reply to MindfulSquirrel]

Yes has been a very long haul.

She used fodmzp narrowly avoiding being tube fed as couldn't digest due to hypermobile blood vessels .

She is a wheelchair user as also had POTS common with Ehlers danlos

Does the right sort of exercise.

Swimming

Pirates

Yoga

Also after s few yesrs of trying without .

Has a drug to keep b. P raised to stay upright .

Also of course has regular b12 injections , daily folic ,vit D acid and multivits .

Undiagnosed b12 def/ PA and megobolastic anaemia definitely set this off .

Very common it seems going by fellow sufferers

[Perniciousgirl]

hey. I see you wrote this a year ago but I’ve just joined recently. I have PA as well as hEDS and autonomic dysfunction. I’m pretty sure the b12 deficiency made everything worse and due to having chronic illness, my deficiency and PA was missed for many years.

I’ve just started loading doses a few weeks ago and my muscle pain and stiffness and burning is really bad. I hope this improves soon.

I hope you are going ok with your recovery.

[MindfulSquirrel in reply to Perniciousgirl]

Hi to you and Rainycats 🙂 A year on the PA seems much better, I’m in physio for the hEDS and it’s manageable for the first two weeks of my cycle but not great in the more progesterone heavy later two weeks. I should hopefully be starting HRT soon as my GP thinks that some of my symptoms are related to that so we’ll see. It’s very tricky knowing whether nerve pain/parathesia and the occasional ectopic palpitations when they happen are due to the PA, trapped nerves through things shifting around, hormone changes or migraine prodrome/aura. 😭

I did turn out to have massive issues with folic acid, which turned out not to be surprising as I’ve got one of the MTHFR variants (suggested to be involved in hEDS) but I’ve done much better on folinic acid with my B12 injections and small doses (like 50mcg anything from daily to 2x a week) of methylfolate.

[Rainycats]

Same story! After decades of symptoms, I was diagnosed with hEDS, POTS, and MCAS a few years ago, and with PA a couple weeks ago. All my symptoms have been worsening, and new ones showing up, over the past number of years, and it was easy to blame everything on the trifecta. When I had a very well-meaning pulmonologist tell me last fall of my shortness of breath and drops in blood oxygen, "I guess it's just your EDS," it didn't sit right with me. After an endoscopy, I started researching, finally got diagnosed, and started my loading doses a couple weeks ago. Looking back at old labs, my MCV was high as far back as I can see, which is twelve years ago, so this has been overlooked for a long time.

I hope you'll start to see improvement soon!