Well done, LupusUK Forum!

[whisperit]

Hello,

People will be tired of hearing the saga of my most recent problems (sweating, nausea, chest pain, exhaustion). My respirorologist, rheumy and GP have all been baffled, even after 1000s of bloods, ECGs, echocardiogram, CT scans and two emergency admissions to hospital.

The conclusion was that it was an unusual reaction to mycophenolate, and i should stop taking it and wait.

So I was stopped, and waited. Unfortunately, the symptoms didn't.

On Wednesday morning, I was browsing older posts here and came across some that described POTS (postural tachycardia syndrome). Someone suggested trying the 'stand test' and taking the result to my GP.

I did that this morning, After looking through my home made notes and the POTS UK guide for GPs, she said, "Yep. You've done some really good detective work there. I think you might well have POTS".

Result - an urgent referral to a POTS specialist.

I still feel ghastly, of course, but also hopeful.

Many, thanks to everyone who posts here. Reading your experiences has really helped me.

Mx

[EOLHPC]

👏👏👏👏👍👍👍👍dysautonomia is a BIG long time prob in my case & many others on here. Am delighted by your news, and especially by your GP being so switched on re PoTS! Lifestyle management is KEY to living with any form of dysautonomia...am sure you took note of the links to support group websites devoted to this subject? several of us have posted these here over the years.

Hope you'll let us know how you get on

🍀🍀🍀🍀 coco

[PMRpro]

Well done - training to be a True Detective!!!

[Author_ink]

What are pots and the symptoms? Is it another form of Lupus?

[whisperit in reply to Author_ink]

Hello Author_ink,

There are others on here who will be more expert than me, but here is my basic understanding:

POTS is Postural Tachycardia Syndrome. It is a malfunction of the autonomous nervous system - the thing that controls automatic responses like heart rate and blood pressure.

The main feature is that when you stand up - or even sit up - your heart rate goes up excessively and won't come down again except after a long time. As a result, you get nauseous, faint, sweaty, a racing heart etc. It can be very disabling.

There is an association with Sjogren's and auto-immune disorders, but I don't think anyone knows exactly how or why.

You can find out more at the POTS UK site potsuk.org

[PMRpro in reply to Author_ink]

"Postural orthostatic tachycardia syndrome (POTS, also known as postural tachycardia syndrome) is a condition in which a change from the supine position to an upright position causes an abnormally large increase in heart rate, called tachycardia."

nhs.uk/conditions/postural-...

potsuk.org/

[misty14]

Hi whisper it

Really hope that POTS might explain your ill health specially as it is so similar to Lupus and you feel better soon. Hope your referral doesn't take long as you've been ill a long time now, must be getting you down. Keep us posted and good luck. X

[whisperit in reply to misty14]

Thanks, Misty,

I feel I should apologise for making so many postings in the last few weeks. My excuse is that things have continued to deteriorate, with none of my specialists even able to come up with an explanation, far less stop things getting worse.

BUT I do feel that we might have found the right line of enquiry at last, so that is good. Thanks again for your support.

Mx

[PMRpro in reply to whisperit]

Why apologise? That's surely what a forum is for - especially one as supportive as this one. Brain-storming sessions on a forum are bound to result in a lot of posts...

[misty14 in reply to whisperit]

Hi whisper it

No need to apologise for number of postings, that's what the forum is for and it's lovely to hear how it's helped you. Fingers tightly crossed for you and keep sharing I say because we can all benefit from each other!. X

[whisperit in reply to misty14]

Thanks, misty x

[whisperit in reply to misty14]

Oh, and unfortunately, even 'urgent' referrals take at least 3 months, apparently. (In fact, my 'urgent' referral to cardiology last year didn't get me an appointment for *8* months!) Sadly, I will have to look into going private...grrrr....

[PMRpro in reply to whisperit]

When does your GP think you need to be seen? We have this problem with GCA too - the GPs don't realise saying "Urgent" in their referral only means sooner than "Routine". If you need to be seen quickly - the word they must use is "Emergency" and preferably phone the hospital.

It is something that changed several years ago and it doesn't seem to have filtered down to the primary care level. The trouble with going private is that means you then also have to pay for tests and treatment unless the doctor you see is nice enough to add you to their NHS list.

[whisperit in reply to PMRpro]

Yes, the current system is full of weaknesses and anomalies. I will be ringing the surgery and the specialist concerned on Monday to confirm my likely waiting time and work out the best way to expedite.

[misty14 in reply to whisperit]

Good luck with what you find out whisper it. X

[Ronswife]

Do they have a med to control it?

[whisperit in reply to Ronswife]

from what i can gather, there are a few meds that can be used, including B blockers, but none are approved specifically for POTS. They have to be prescribed "off license". This is one of the reasons that specialist referral is necessary - GPs aren't going to be keen to prescribe off license without direction.

Otherwise, conservative treatments include physiotherapy, increased fluids and compression stockings. I anticipate a long road ahead....!

[happytulip]

I have POTS and it is well managed with bisoprolol and fludrocortisone. I used to add in a drug called midodrine which has very recently been liscenced in this country for postural hypotension. However, I don't need midodrine anymore.

After finally being diagnosed with Lupus and commencing lupus meds my POTS symptoms became less severe, although are still present. When I was at my worst with POTS I spent about a month in hospital and could only stand for 1min 21 seconds before collapsing.

Non medical interventions that have helped me include class 2 compression stockings.

Really increasing the tone of my calf muscles with exercise, it's hard work but has to be done.

Exercise. I couldn't stand or walk but could swim when I came out of hospital so after 6 weeks of swimming in a friend's pool I built up my vascular strength, was then able to stand for much longer.

I increased my fluid intake. I also had a dioralyte everyday and a teaspoonful or marmite everyday. This was because I was advised to increase my salt levels. Obviously with lupus you must be careful with salt, I'm just telling you what helped for me.

If it is POTS it is a pain and 2 years ago I couldn't stand let alone walk. This all happened literally overnight. I stood up one morning went blue and dropped on the floor. I thought that I would be in a wheelchair for life. BUT, gentle re-conditioning does improve the condition remarkably and it has taken two years with me but my POTS symptoms are much better (although my lupus situation is far from ideal).

I'm rambling because I'm overtired. I wish you luck with your referral. Please PM me if you think I can offer any advice. Not only do I have POTS but 4 other members of my family do too, so we have some experience between us!

Good luck, please keep us updated.x

[whisperit in reply to happytulip]

That's a brilliant post, happytulip. Thank you. I will PM you in a mo.

X

[Wendy39]

Well done. I'm really pleased to read that you may finally have found the right diagnosis. Well done you. It might be a long road but at least it's the right one eh? No one likes having to find somewhere to do a U turn after miles down the wrong road. Good luck with your referral and treatment.

[Hidden]

Hi there,

It’s good to hear that you have found this forum and the messages posted useful and that they even helped with your diagnosis!

It’s also great news that you now have a referral to a specialist to get the right support and medication. We hope you will continue to post updates to tell us how you get on.