Stressed about health issues

[tessa]

The last year or so, I’ve hit a brick wall with my physical health.
I’m 23, have had previously meningitis and enchephalitis at 16, lots of issues at that time resulting in a long period of issues finally diagnosed as vestibular migraines caused by various foods etc migraine diet sorted the majority of those issues and for a while life was good. I was back working with horses and slowly getting fitter and feeling healthier.
Around January this year I started getting joint pains and frequently dislocating shoulders and various other joints. Within a month the pain was all over and intense and I felt exhausted 24/7, had referral onto rheumatology after months of blood tests and moved on from cocodamol to codeine as the pain and dislocations progressed. I also moved away from working with horses and got a job in a cafe as I wasn’t coping unfortunately and felt a job where I was still moving but not as physically demanding was ideal.
Saw rheumatologist in June and was diagnosed with Ehlers-Danlos syndrome, Reynauds and POTS after a series of tests in October. Consultant referred me onto cardiologist after blood tests showed a few abnormalities, I have Gilbert’s syndrome and am anaemic too so various issues with organs, so he decided it would be best to check that my low BP and high heart rate is definitely part of the POTS and not a different issue.
I have had my appointment through and it’s in a month’s time and it’s suddenly hit me that I could have heart issues, I think I’ve just been hoping for a while that it’s all part of the Pots. But it’s just scary that I’m only 23 and I’m having to deal with all these medical issues.
I really just want to find out now the ins and outs, so I can start with the physio, get back in the gym and hopefully back on a horse in the long run. I really feel like my life has been on hold for a long time, I just need confirmation of what I am dealing with.

I’m aware I am a complicated case (understatement of the century) but has anyone been through a similar situation and can offer some advice on moving forward that would be great. If not, the vent and admitting I am worried has made me feel slightly better

[Shirl]

You’ve been through a hell of a lot – and seem to have done very well dealing with it so far.

I haven’t been through anything anywhere near similar but have had mental health issues for the last 40 years that finally got diagnosed as bipolar disorder last year. What I can say is that knowing what the problem is, is half the battle. Once it has a label, you can work out a strategy for dealing with it, and put plans in place for what you need to do – in my case triggers, sleep, awareness of where I am in the mood scale etc.

You already know what you want to do, so you have goals to work towards. Once you have the diagnosis, you can then look at it in relation to your other health issues, and work out the steps you need to take to achieve them. You may have to take smaller steps than someone without the health challenges, but you’ve already overcome so much, adding the new diagnosis into the mix will be something you’re more than capable of managing.

Very best wishes, and good luck!

[scats]

So sorry you are having such a dreadful time. That’s a lot to be dealing with at your age. I found myself in a very similar situation at a young age- I became very unwell at the age of 11 and never fully recovered. I’m now 33 and was eventually diagnosed with an autoimmune disorder that they believe had been the cause of everything all along. My immune system attacks various parts of my body – organs, connective tissues etc and causes me to be very unwell on an almost daily basis.

I am just about able to work part time but I take a lot of medication to get by. Fortunately (or unfortunately, depending on how you view it!) I don’t know much different, as I’ve been so unwell for so long now. So I don’t actually really remember life pre-illness and this makes it easy for me to just accept it.
The only advice I can offer is to find out exactly what you dealing with and try and discover a routine that works for you. I learnt a long time ago that I’m on my own with this. I visit my consultants regularly, but they can offer no cure or solution and I know I will live this way forever, however long that may be. I’m ok with that, but I do worry what will happen to me when my parents are no longer here, as I have to rely on them so much.
When I was a teenager, I used to wonder why this happened to me, but now I don’t. I wouldn’t change what happened because it’s made a stronger person than I could have ever been otherwise. I miss out on a lot… and I’m often in bed by 8pm at night because just getting through each day is hard.

Look after yourself, it’s perfectly natural to feel worried xx

[don]

@tessa lets look at the positives, you actually got a diagnosis in the UK of EDS and POTS….. thats pretty good going! Most of us get shrugged off as hypermobile at best or hypochondriacs at worst. At least you have the label needed to get you through the doors for help.

It is daunting and what IVe found is there are a lot of autoimmune conditions that are linked, ie I have come out with LPP which is auto immune and linked and I can find the research in other countries but over here no one will join the damn dots up.

The only thing you can do is play it by ear day by day, its rare its affected my work but Im a stubborn wench and have been known to crawl out of the parlour on my knees or finish a days teaching with a dislocated shoulder and go to A+E the next morning when I, rather clearly, did not get it back in straight.

Pilates is definitely helping me hugely with joint stability also making sure to wear good supports too I found a sound called Nuovahealth.co.uk is good for those.

Best wishes and I am here if you need an ear 🙂

[tessa]

@don Thanks! gp referred me onto senior consultant at rheumatology as soon as Bloods/xrays ruled out arthritis etc. Said she was out of her depth and didn’t know much about connective tissue disorders (by this point we had tried anti inflammatories etc and that just got rid of the tiny bit of swelling holding my joints in so I was literally dislocating knees just walking).
I walked into consultants room and he said hypermobile and marfens before I had even sat down. Checked skin, Beighton scale and had a chat and he said we will do a few tests but I suspect Ehlers-Danlos. Looked at my medical history and said definitely pots but we will check you for vascular too as family history points towards a pattern of heart issues and also sound eds too but obviously haven’t had diagnosis. He said it was all too easy to connect the dots at that point and it’s important now that type is identified quickly so that we can predict or treat quickly any problems that arise in the future. Said cardiologist will check for vascular as some markers in Bloods were concerning but not obvious if it’s pointing towards vascular or separate problem and that the departments will work together to ensure that I’m getting the help I need but said at the end of the day there’s not a huge amount they can do and it’s all about finding the right way to deal with things and pushing on.

I was really impressed with how quickly things have gone through, I had heard horror stories and my local hospital is pretty rubbish but I was lucky that consultant knew his stuff and had read up my notes and had a good plan in place.

Was looking at pilates, OH is a personal trainer which is also handy

[tessa]

@Shirl The mental parts are often the worse, I thank the meningitis etc for curing my extreme anxiety and agoraphobia. Slightly too fearless now and rarely anxious apart from about my health… I joke with the OH about him needing a plan for a plan, but I’m probably worse, I just internalise it rather than saying it out loud. Hopefully have plans in place to move forward with after the appointment rather than more questions. I’m at that point in my life where I want to settle down and do the things I want to do and start building a future.