Ehlors Danlos

[Aquariel]

Anybody have this with asthma and find drugs don't work in any aspect of their lives? I was told by Cardiff Hospital that I probably have a Neanderthal gene which they associate with food allergies, diabetes and passing out when nervous. This gets more terrifying with age when you need statins etc. And the dentist - torture. My asthma has become untreatable of late and its every day. More mechanical/common sense method required as consultant has given up. Will probably have to move as mine is pollen in the summer and about 20 different common foods. Lets at least get rid of the pollen.

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[Emaych61]

I was diagnosed with Benign Joint Hypermobility Syndrome (which I believe now comes under the umbrella of Hypermobility Spectrum Disorder and is linked to Ehlers Danlos) back in 2014. So I do have collagen related problems but they are at the milder end of the spectrum. I’ve had asthma for all but the first three years of my life, and the warning signs of being atopic became evident in my first year from bad eczema. I’m now sixty. At the moment asthma meds do control my asthma, but there are issues elsewhere (gastro) that the medics do seem to be having problems with. I’m currently seeing consultants in three completely different areas of medicine. All of them are aware of the Hypermobility (I did a synopsis of my medical history- which runs to nine pages - and it got placed on my medical records after doctors requested it). Two of those specialists (orthopaedics and gastro) undoubtedly realise it may be a contributory factor in the problems I’m having. On the medication front the area I really have to be careful with comes from analgesics (not great in someone susceptible to injury). NSAIDS are not recommended for someone with stomach/digestive issues and ibuprofen isn’t recommended for asthmatic either; codeine causes appalling constipation in me and opioids just make me sick. I get by with paracetamol.

If you are having problems with pollen the best area to live (from what I’ve heard) is by the coast, but that can come with other problems in winter as the climate round the coast is also more damp (a known issue for many asthmatics - me included).

Do you mind me asking what type of EDS you have? Also, there is is an Ehlers Danlos Forum on Health Unlocked which may be able to help you.

[Aquariel in reply to Emaych61]

I live 1 mile from the coast, I used to live in Shetland and but had no asthma problems there.No pollen! No sun either.I have all your problems and yes I would move if I could. I'm not diagnosed but my nearest relative is. I wouldn't bother, its Cornwall. and what difference will it make? Bad guts are the most common in the family and very bendy joints.One of us has Viking finger, the thumb bends backwards. They reckon in Cornwall that the asthma cause is the damp atmosphere but Shetland was wet all the time.The cause really isn't obvious. Mine got far worse when I had shingles similar to you. I keep trying to find a DNA firm that will do a proper Neaderthal test, I'm pretty sure its linked but its all 'find your relative' stuff.

[Emaych61 in reply to Aquariel]

There will have been pollen there but on Shetland you are never very far from the sea no matter where you are - that’s not the case in Cornwall. And of course you are a lot further south there and it’s quite a bit warmer so more variety. I’ve recently been tested for Birch pollen, Timothy grass and various weeds: all came back negative. That said, there are so many different types of pollen that quite frankly it would be nigh on impossible to test for them all and something sets my allergic rhinitis off in May/June/July, or it did before I was put on Clarityn, Dymista nasal spray and NeilMed sinus rinse. Things are a little better now, though I can only use the latter two on an as and when needed basis otherwise they can cause problems, which I really don’t need.

I’m also very flexible (always have been) and have had gastro issues (bowel) since I was very tiny. After giving birth to my first child I began to get digestive issues as well (foods that had never caused issues before began to) which have gradually worsened as I’ve got older. Like you there’s a whole load of foods I have to be careful with because of reflux (they’re considering non acid reflux with me at the moment). Food allergy screening came back negative as has coeliac. At the moment my lungs are a little more sensitive than usual due to covid which is making life a little harder when it comes to food and drink and reflux resulting from them. It doesn’t take much to set them off right now. Thank goodness for Gaviscon advance!

[floating_]

I have Ehlers-Danlos Syndrome and am either very resistant (requiring more intensive treatment) or very sensitive to medication.

I also have a myriad of comorbid issues in addition to the Severe Asthma and EDS (including: POTS/Dysautonomia, MCAS, CSU, Gastoparesis, Hiatal Hernia, Bladder Dysfunction, Breathing Dysfunction/Breathing Pattern Disorder, Autoimmune Hypothyroidism, Chronic Migraines, SVT, Osteoporosis/Osteopenia, blahblah lol). I'm 28 years old.

MCAS for me is a real problem due to all the allergy-like symptoms it can cause (including things like anaphylaxis!). Getting it under control has helped my Asthma massively.

[Emaych61 in reply to floating_]

I have bladder issues (though that was only picked up four years ago after I requested referral to a urologist - I’d been susceptible to UTIs for years and then went through four years of getting multiple bouts of it annually). I’ve never been checked for Breathing Dysfunction/breathing pattern disorder though I can’t recall a time when I haven’t had what used to be known as exercise induced asthma. But then until eight years ago I’d never heard of Hypermobility syndrome or EDS. It was a bit of a eureka moment when I first read about it and realised that an awful lot of the medical issues I’d experienced in my life might be down to one thing.

[floating_ in reply to Emaych61]

Bladder issues aren't uncommon in EDS patients! Personally my bladder just doesn't work (effectively Bladder Failure), I self-catheterise because of it.

Breathing Pattern Disorder is a separate but related thing to Asthma. For me personally it's mainly a neurological deficit causing the problem, but if I've had a chest infection or a bad asthma attack I'm prone to having breathing pattern problems! I got diagnosed during testing for POTS, lol. It was found on a cardiopulmonary exercise test.

EDS links a lot of my issues together, though not all of them, such is life. I'm glad it helped you to get diagnosed, helped me a lot as well.

[Emaych61 in reply to floating_]

My bladder works, though I have to use place pressure over it with my hands to ensure it empties properly. Investigations discovered that it had twice the normal capacity and wasn’t emptying properly - hence the UTIs.

I’ve wondered a number of times whether I should get myself checked for Breathing dysfunction. At the moment I’m going through a bad patch due to covid which seems to have had an adverse affect on my already temperamental digestion. Fluids in particular are causing breathing problems at the moment - not severe, but uncomfortable and annoying; the usual wanting to take a deep breath but not being able to do so. Standing up or leaning forward when sitting helps. It’s not asthma, it responds too readily to Gaviscon advance for that and my peak flow is fine.

Twenty five or so years ago I had the great good fortune to be taught some basic anatomy by a chap who was a retired consultant cardiologist (and brilliant generalist - we really need more of those now). The subject of asthma came up so I asked him if he could shed any light on what caused exercise induced asthma. At the time he replied he really didn’t know (no-one did back then) but he wondered whether it was to do with a fault in the autonomic nervous system. I still wonder whether he may have been on to something there.