Lost in health misery

[Wantachangefor2024]

So the year is almost out and I’ve lost three and a half stone since June doing the fast 800. I am feeling better for it. But I wonder if anyone could help me with piecing my health together to help me know which direction i should go in to seek help.

I went from a girl who did cross country running and horse riding at school to suddenly being out of breath and fatigued terribly at 17. I’m now mid 30’s. I went to my gp at 17 who said my heart rate was too high and I needed to get it looked at. Very. Very stupidly. I was too embarrassed to have the ecg and get undressed. So just plodded along with poor health.

In the following years,

• ive had a mouth tumour. Tested positive for coeliac antibodies three times. But never positive on an endoscopy. Can eat gluten and have no stomach issues.

• Had spinal surgery. A nerve decompression. Covered in stretch marks. Noted as hypermobile.
• Had bouts of dizziness where my heart raced and I’d shake and get migraines. I was admitted to hospital after finally going to a&e and my heart rate was 185. It was found that I have inappropriate sinus tachycardia and put on ivabradine. The ivabradine has cured my migraines but I still get breathless and fatigued. At the time I was needing spinal surgery as the cardiologist didn’t want to discharge me until my symptoms had become manageable. I promised I would come back after my surgery but I needed a discharge to be put onto the waitlist for my back. My gp would never rerefer me back as they said I had found out the issue with my heart.

I’ve overcome a lot. But I have just been on a four day trip to wales with my mum and aunties. Who are 70 and they had more energy than me. I have terrible fatigue and sometimes breathlessness. I thought by losing weight it’d really help but it’s obvious there is something more that is ailing me. It’s not a case of I’m a little bit tired. I’m a so seriously fatigued I struggle to do basic tasks and function. I’m prepared to pay for private help but don’t know what direction to go in. Any advice or help I’d greatly appreciate.

Bump.

I'm celiac. I don't get stomach issues, I get dizzy, swollen joints, last time I even passed out and now I carry an epi pen.

I would stop eating all gluten for at least 6 months.

Also did you ever have an ECG? You need one ASAP.

Yes I had one and diagnosed with inappropriate sinus tachycardia. Fast heart rate for no reason. Thanks re celiac. I’ll look more into it. I just thought I had a few weird things that they must be related in some way.

It's probably related to your hypermobility. Me and ds2 are both hypermobile and suffer from what you describe. We're both what I call 'constitutionally weak' in that we just can't keep up with other people, get weird physical symptoms and are easily fatigued. Hypermobile people usually complain of these symptoms. Hypermobility doesn't just affect your joints, but can involve internal organs too, including the heart.

Have a look at POTS too. This is a common complaint from hypermobile people. Hypermobility that reaches a certain clinical threshold can result in a diagnosis of Ehlers Danlos syndrome, but the NHS aren't really interested in it.

Please look hard at Ehlers Danlos syndrome. I'm no expert but DD has a 30 yr old male friend with this. It's knocked the stuffing out of him, permanently tired and awarded PIP without any argument. He had hypermobility, I think.

Thank you. Honestly whatever it is has knocked me. I tell people I’m suffering with depression and that’s why I’m tired as I’m so embarrassed that I don’t know what is physically wrong it’s easier to say my problems are more mental, as at least people don’t think I’m exaggerating - I get in on an evening and my body is just done in that sometimes I skip having a shower etc as I’m just so fatigued. I’ve been going to the gym 3x a week now for almost six months. Never skip with my personal trainer. It’s not laziness this, but it is a mystery as the fatigue and weird things could indicate so many things.

Check B12 and thyroid too, particularly antibodies for Hashimoto's.

As others have said, Ehlers Danlos and POTS often overlap, but I think Ehlers Danlos can also cause heart symptoms on its own.
If you are coeliac and eating gluten, your body might be dealing with an inflammatory response.
Perhaps ME is another possibility?
I know it sounds strange but wearing compression socks might help with some of these symptoms.
Hope you feel better soon xx

I was a horse rider & cross country runner. I went to bed at 17 fine...Next day I woke up with breathlessness, racing heart etc. After a loooong investigation I was diagnosed with pulmonary hypertension.
I would be extremely surprised if you had this as if left untreated it is fatal within a couple of years.
I would ask for a ECG tape so your heart can be monitored over a few days.

Another thing that could trigger migraines, heart issues & stomach issues is the Vagas nerve

If you could even possibly be coeliac and continue to eat gluten that could well be causing your fatigue so I’d definitely eat gf from now on .

This is so rare. Were you able to be treated? Hopefully you are keeping well.

I have Ehlers-Danlos and PoTS with very similar symptoms. Eventually diagnosed aged 49. My DD has Ehlers-Danlos, PoTS and Hashimotos all diagnosed by age 12.

Keep pushing. Look at the EDS UK charity for guidance, also PoTS charity (all online). Ask for a tilt table test.

EDS is notoriously difficult to get diagnosed now. Most Rheumatologists will bounce back referrals as they apparently 'don't see people for EDS any more' This is shocking as the symptoms are far and wide. It is a connective tissue disorder after all and affects stomach, skin etc. I have major varicose veins and a hiatus hernia all likely caused by EDS and evident by late 20s. It's crap and I feel for you, but diagnosis leads to answers which leads to better understanding and (hopefully) treatment. I have to manage my life very carefully due to fatigue and pain among other things. At least I know what I'm actually dealing with though after years of being gaslighted.

To add, yes, EDS can also cause heart symptoms. There's a vascular version of EDS (VEDS) but even Hypermobile EDS - the most common type - causes heart issues. I have tricuspid valve regurgitation, and DD has Mitral Valve regurgitation (commonly known as heart murmurs that can lead to Atrial Fibulation later in life)

We also have high resting heart rates and heart rates that go sky high when unwell.

Thank you for your input. I’m going to look at everything. Never heard of that.

@RainbowZebraWarrior thank you! The gaslighting is what stopped me seeking help years ago. Apparently spinal surgery is common in eds too. I just know that all the things that have troubled me are linked somehow. I built up the courage to see the gp and she said my symptoms indicated fibromyalgia. But I’m not in pain. I get a little bit of joint swelling and slight discomfort but certainly not pain

@LadyKenya I have idiopathic primary pulmonary hypertension and there is no known cause. I was super fit healthy & active.
For the condition I do really well. I have medication daily and try & live as well as I can :) x

If you're testing positive for coeliac antibodies you really, really need to stop eating gluten - you could be doing all kinds of permanent damage.

I think what frustrates me with the coeliac testing is that when I saw the gastroenterologist, he said he was convinced I had it as the antibodies are so specific. First endoscopy - came back negative. He then said I’m convinced you have this I’m going to
do the endoscopy next time myself to make sure it’s correct. He was nowhere to be seen on the day. Second endoscopy - came back negative. I then saw him in clinic and should have questioned him really but he concluded I was a “mystery” and I had ibs. I was possibly on the “celiac” spectrum. I get told one then and then another. When my bloods were done the first time positive my gp said I shouldn’t really say this but it’s never positive unless you have it!

Thank you for your reply@Champagneandpringles24 . It is good that you are keeping well💐

Shamelessly placemarking as this sounds like me. Sorry you have the same issues @Wantachangefor2024.

I can’t eat gluten, despite testing negative. If I have gluten it doesn’t affect my guts noticeably, but it makes me so SO fatigued and fuzzy. It took me about 2y to work it out and eliminating various things. Now I’ve not eaten it for 10 years I’m used it it.

@Wantachangefor2024 surely it's worth at least trialling going gluten free for a few months though?

Definitely I will try it. Can only but try. Just the heart and spinal surgery at a young age - really weird things to have.