PoTS/Chronic Fatigue

[whisperit]

Hello,

I am posting again with yet another worry! Although my interstitial lung disease and joint pain seem to have improved somewhat on hydroxy and prednisilone, my fatigue and weakness are getting steadily worse.

It's now at the point where I am practically sofa-bound, and feel I need urgent specialist opinion. I'd appreciate your thoughts....

My day looks like this (bear in mind that 18 months ago, I was fully active and working full time, with no known illness).....

I wake feeling nauseous and after dressing, shake with fatigue. This makes it hard to eat breakfast. I spend the morning on the sofa as even going to the loo leaves me lightheaded and trembling. As the afternoon wears on, I tend to break into sweats and shivers. Increasingly, I get palpitations with this. My temp remains around 36, blood sugar 7, BP 130/90, pulse 100.

My rheumy and resp consultants have looked for opportunistic infections as the explanation, but none have been found. My GP sent me to casualty last week owing to the heart symptoms - again no heart abnormalities were found.

Has anyone here experience of Chronic Fatigue or PoTS on top of their auto-immune diagnosis?

Any ideas what I should do next?

Thanks for your patience with another of my fretful posts!

EDIT - after some more searching, I see that the usual suspects have already posted on this - and brilliantly, as usual! OMG it really sounds like POTS! Thank you all!

Mx

[EOLHPC]

Glad you posted whisperit...giving you a big gentle hug...as you've found our discussions on this stuff, you'll know something about my version of this: over the decades I've spent months/years occupying our sofa & bed due to this stuff...it's great you're conscientiously logging your patterns of symptoms & researching possible diagnoses + discussing this here: these will make it easier for you to "present" your case to your medics.

Take care. Be gentle with yourself

🍀😘🍀😘 coco

[whisperit in reply to EOLHPC]

Thanks, coco,

I'm due to get an echocardiogram this afternoon, so I was just looking through my records to work out what I should report.

Then i came across a thread where you, purpletop and misty (I think) had swapped stories. Looking at your exchange, PoTS seems to fit my pattern perfectly. So I'm very clear about what I need from the appointment later.

This forum has really been soooo helpful, thank you.

Mx

[EOLHPC in reply to whisperit]

YAY: go girl go 💪👌👍🌟🍀

[happytulip]

I was first diagnosed with POTS but it turns out that Lupus attacked my autonomic nervous system and caused POTS. So, now that my Lupus is being treated my POTS symptoms are vastly improved. Three bits of info until you are or aren't diagnosed with POTS.

1. Increase your fluid intake

2. Do your best to not lay flat all day, ensure you get enough 'upright time' otherwise your body will adjust itself to a lower blood pressure and you can feel worse.

3. The MOST important. If you think you have POTS go to someone who REALLY knows about POTS. A year and a half of my life was wasted by a 'specialist' who knew nothing of POTS despite being on the POTS UK website. I'd recommend a referral to Queens Square in London. It's the National Centre for POTS and quite frankly they are the dogs danglies of diagnosing and treating POTS. And you can be referred from anywhere in the U.K.

[whisperit in reply to happytulip]

That is really helpful, constructive advice happytulip. It's especially cheering to have things i can do for myself regardless of the medics. Thank you x

[EOLHPC in reply to happytulip]

🌟🌟🌟🌟👏👏👏👏😘

[Hidden]

I haven't been diagnosed with PoTS but I share many of your symptoms, although not as severely as you have them. As I think you know I have primary Sjogrens with shades of RA, lupus and Scleroderma as part of this I have sensory Autonomic Neuropathy. I couldn't tolerate Hydroxy after 18 happy months and am currently unmedicated for my Sjogrens. All I have found that works really well for me so far is drinking water as much as possible throughout the day. Unfortunately the drinking water where I am (lots of farming) tastes of chlorine so I buy bottled water and sip it constantly. I read that this could help PoTS svdcit also helps Sjogrens although I do find it washes away some of the goodness of the saliva I have and my Sjogrens sicca isn't great just now. Also I find that making myself go outside for fresh air is good as long as I don't have to stand still for any length of time at all. Tx

[whisperit in reply to Hidden]

Yes, I had bad postural hypotension when I was in hospital a few years ago recovering from an accident. I couldn't sit up in bed without dizziness, nausea and sudden, overwhelming fatigue. A bit of a problem when I had to get out of bed to start rehab!

Amazingly, the nursing staff had no idea idea what the problem was, or what to do about it. It took a week before I diagnosed it myself after a visitor spotted a leaflet on the way into the ward and said, "Do you think this is the problem?"

The cure was to drink a glass a water before sitting up and doing muscle tensing all the time I was sitting up to prevent blood pooling in my legs. In other words, a lot of the same things that are suggested for POTS.

I wonder if some of us have a tendency to these things? Or maybe they are kind of going on for years before something triggers them into full force x

[Hidden in reply to whisperit]

PoTS can be a condition in its own right but is also often secondary to Lupus, Sjogrens, hypothyroidism, Graves and MS. I think that CT diseases with neuro manifestations are more likely to bring autonomic issues in their wake. I only have the orthostatic hypertension mildly sometimes but worse are the sweating, neuropathy, tachycardia, ataxia, bowel, urinary and sexual dysfunction are all autonomic issues as well as GI issues, regurgitating food (gastroparesis) swallowing etc are all issues affecting some people with autoimmune related dysautonomia, me very much included. TX

[Hidden]

Hi whisper,

PoTS is a niche area of medicine. My consultant told me that they've only had international guidelines for treating it within the last year (!) but it is becoming better understood.

You can do a "poor man's test" by taking heart rate and blood pressure resting and then at 1 minute, 3 minutes and 5 minutes. PoTS is only diagnosed if you have a raise in heart rate which is sustained for a period of time. They like to do a tilt table test to confirm it though. I believe it can also test for other types of autonomic dysfunction but I'm still awaiting my test, so I'm not sure yet. Technically, you can't have PoTS if your blood pressure drops by a certain amount which mine does but then again, I think people get diagnosed with it anyway. The bottom line is that you need the right treatment, whether it's PoTS or orthostatic hypertension or some other type of orthostatic imtolerance. I had one to increase my blood pressure and now they are considering a beta blocker.

The important and helpful thing about autonomic dysfunction is that the tests are usually very conclusive. You might be unlucky and have a tilt table test on a "good day" but the bladder, bowel and sweat tests are meant to be excellent in confirming or ruling out the diagnosis.

I would strongly advise you to push for the autonomic function tests. I've had some but I am having more; small and large bowel mannometry, nerve tests and bladder ones.

It's especially important to have a diagnosis if you have GI issues as the cause can be either; neuropathy or myopathy or a mixture of both. Treatment needs to be tailored to exactly what is going on.

As I said, I've had some and I've got more coming up in the next couple of months, so happy to share as much as I can.

It's suspected that my autonomic dysfunction is due to multi-organ laxity but they are testing me to rule of autoimmune related issues too. I have RA and we are now testing for SLE again. It's been a long road for me and emotionally draining but my doctors are all very positive and hopeful. So, don't be disheartened if you do find out you have some issues.

I'm happy to talk or share any info I can. If you're in the london area, I can recommend some consultants who are known to be experts. There are long waiting NHS lists or pricey tests if you go private but either way, it's worth fighting for.

Take care,

Sophie

[whisperit in reply to Hidden]

Thanks very much, that is really useful information. I'm talking to my GP on Friday, and will raise POTS as a possible diagnosis with her then. As you say, there are obviously a lot of alternative specific diagnoses, but some sort of orthostatic dysfunction seems very plausible. I'm going to try some "poor man's testing" tomorrow so as to have something extra to take to her!

If there is any progress, I will post again. In any case, I would certainly be interested to hear how your story unfolds...

Mikex

[Hidden in reply to whisperit]

I hope it goes well but I wouldn't be overly surprised if your GP doesn't know much about it. That said, a decent GP will admit it's not their field and refer you on. Are you in or near London? Dr Gall is THE man and so nice too. He told me that he manages his complex patients and co-ordinates with other specialists. He calls himself the "project manager", heh! He's a perfect example of using a multi-discplinary approach towards helping people with multiple and complicated problems. If only all doctors could be like him, eh?

Best of luck.

[whisperit in reply to Hidden]

Thanks, Yes, I don't imagine she will know anything about it, but she is very open-minded and she's my best hope of a specialist referral. Or a sensible discussion, at any rate.

I live in South Wales. Maybe I can lure Dr Gall with a promise of free accommodation over the Abergavenny Food Festival weekend...?

[whisperit in reply to Hidden]

Just did that 'poor man's test'. Over the 5 minutes, my BP went from 120/80 to 116/87 whilst my pulse went from 99 to 135. After a day when I've had no flushes or nausea (my best day in weeks in fact), at the 5 minute mark, I had a full on flush and palpitations. So unpleasant I might not repeat the 'test' in fact!

[happytulip]

If anyone is interested I'd recommend checking out the POTS UK website. It's very useful.

[whisperit in reply to happytulip]

yes, it is!

[Freckle1000]

Hi,

Just a left of field response. Get your B12 levels tested. A deficiency can cause autonomic nervous system problems as well as an elevated heart rate (that really bloody hurts after a while) I ended up in a not very helpful ER myself from this.

It was caused by SLE attacking the lining of the stomach. Now my stomach cant secrete a much needed chemical signal that tells the small intestine to absorb B12.

Fixed by injections.

A long shot, but it wouldn't hurt to get it checked.

Really hoping you get a proper answer to this soon.

xox

[whisperit in reply to Freckle1000]

Thanks Freckle,

Glad you found a solution. I will ask for that check.

[Freckle1000]

No Worries. (also as an after thought) a check for helicobacter pylori bacteria - It can exacerbate immune problems and makes it hard to eat, causes nausea, weakness and flake out's - (especially after eating?)

Best of luck getting an answer soon.