So, a few weeks ago I stayed at my sons and ate some foods I wouldn't usually eat (more sugary and spicy/fatty foods) and I also had a couple of large glasses of wine on the Fri & Sat evening.... I veryrarely drink alcohol.
I awoke the early hours of the Sun morning feeling nauseous, and with a very gurgly and windy lower gut. All day Sunday I felt very fatigued, lethargic, jelly legs, and generally quite unwell. This all cleared up after 24hrs and I assumed I'd just irritated my gut with my lapse in dietary common sense!
A week later, similar occured but without any obvious cause this time. Again I awoke during the night with what felt like a tummy upset starting but without any actual vomiting or diarrhoea occurring and felt really rough for approximately 24hrs after and then reasonably ok again.
In the past few weeks, this has occurred a few more times, the last episode beginning 4nights ago. It persisted longer this time so I went to see my GP yesterday.
Along with these symptoms I've also been experiencing:
- worse fatigue than usual but not every day
- reduced appetite during these 'tummy' 'episodes
- windy, unsettled lower gut that sometimes feels 'bruised' or 'sore', and tends to be more uncomfortable when sitting or lying down
- extreme fatigue corresponding with the days my gut feels bad and breathlessness when walking uphill or exerting myself more than usual
- a few short episodes of my ectopic beats re-emerging ( but not at same time as exertion necessarily)
- very slight 'wooziness' when moving head sharply or bending then standing
- a few more hot flushes than usual both day and night.
My GP doesn't feel it's my adrenals but as we all know.....they're judgement is often not the best. He said a cortisol test wouldn't tell us much because I'm on steroids! I tried to explain the 'obvious' but unfortunately it became clear that I wasn't achieving much so I didn't waste my breath further.
However, he is making me have a bowel screening stool test because of the gut issues and a BNP test to check for heart failure because of the breathlessness. So that means at least two bases are being covered.
I have had no temperature, my BP has been normal, O2 levels normal and all LF tests negative.
I suffered from IBS many years ago and wondered if maybe I'd triggered this off again? Felt similar...I think!... so long ago since I last suffered from a bout though. If this could be the case then it would make sense that it would reoccur a few times till it's settled down again, and I guess this would then have a knock on effect with triggering or aggravating other symptoms as a consequence.
I was also in contact with a friend who developed a 'tickly' cough that persisted throughout the whole day I spent with her and it has now since developed into a raging cold and sore throat!! I too now have a dry scratchy throat so wondering if I've been brewing this?
I've read quite a lot about the adrenals..particularly DL's story, but would be grateful for any thoughts or incites into my sudden change in 'health' and if anyone has experienced similar.
Typically, I've woken this morning feeling much improved again.
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Kendrew
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Ive been consistently on 4½mgs for 6wks now and my taper down prior to that from 5mg to 4½mg was over 5wks. So slow & steady as advised. I was just feeling ready to begin my next taper too, but will definitely delay that a little longer now. No rush.
I always do a covid LF test whenever I feel a bit 'different' to usual and I've had 3 negative tests over past 7dys.... the last one being yesterday.
I'm in the process of going down to 4mg from 4.5, decreasing the dose by one day extra a week. Now wondering if it could be that is why I feel so rough?
I seem to pick up for a few days and then will usually have a very bad night when I'm literally awake the whole night (which obviously doesn't help matters! and leads to feeling really drained and weak the next day with either a combination or all of the symptoms I mentioned previously.
Obvious question first - it isn't Covid is it? One daughter had 3 -ve tests before finally getting a positive - at the same time as another -ve from a different batch of LFTs!
I used to have episodes that resembled what you describe - though not as frequent as that and they had a far more violent course. Is there any link between them with what you ate the previous evening? When did it wake you? Mine would start about 2.30-3am. When I saw an immunologist about it she said it sounded like a very typical food allergy response. She could test me from now to kingdom come and get nowhere because there were so many possibilities. We reckoned that in my case it COULD be something in heavier red wines, possibly histamines, and she said to take an antihistamine if I wanted to drink them. I just avoid heavier reds now, it has never happened with white or rose! I have a stock of dirt cheap loratidine - in the UK Lidl has consistently had the cheapest! I have discovered that rather than taking them regularly. If I take 2 immediately I wake with the upset gut feeling and try to go back to sleep it all calms down. So simple it is worth a try even if the GP does do what he should and investigate.
But if there is a small something going on food-wise, it is a stress, especially in the night when natural cortisol is at its nadir and you haven't yet taken the next dose of pred. So it could be a double whammy.
I've done 3 LF tests over past few days, the most recent being yesterday, and all negative so far. I intend to continue doing them daily as I'm aware you have to have built up enough of the virus in your system for it to actually show up on a test. (May be negative today but positive tomorrow!)
The only other dietary change and possible food link (other than the dietary changes at my sons) is that every Fri I go to M&S and have started to buy a small tray of 'micro-greens' to eat with my salad that night. They look a little like multicoloured cress and are said to be 40% higher in phytochemicals and are nutrient dense. Thought they'd be a healthy addition to my diet!!
Most of my 'episodes' have started either that same night ( and yes...about 2.30am ish) or the next day, and my husband asked if it could be those causing the gut problems. I have read that they must be thoroughly rinsed before eating and have always done that.
If the problems persist, I'll definitely try the loratadine.
Worth a food diary. But remember you are lowering your pred - allergies may have been suppressed on higher doses of pred and now you are low enough for them to surface. That has happened to a few of us.
Hi Kendrew. Yes, I've been affected in almost exactly the same way over the last three or so days. Had virtually all of those symptoms. Wondered if it could possibly be Covid (except I haven't been anywhere) and got really miffed when OH tried to suggest that if I have caught it, it must have been when I was sanitising all our weekly food delivery. Far more likely to be from him as he goes out to pick up a free Metro paper from our railway station (he loves to find someone to chat to). Anyway he's not showing any of these symptoms, so maybe there is another bug going around. I'm feeling light-headed this morning, but better than the last couple of days. Hope you feel better soon.
Sorry to hear you're feeling out of sorts too. Despite my negative covid tests, it could of course still be covid, so I'm not going very far...don't want to be spreading it further if I have got it.
Hmmm after congratulating myself on getting rid of a cold very fast, even on pred, I woke up this morning with an awful headache, bad stomach, feeling sick and congested. I took 2 paracetamol and forced down my breakfast and meds. I now feel much better.
I have taken another Covid test. That is 3 now, all different types. I don't think I have it ... although the variation in test kits and instructions does not inspire confidence.
I am posting this because there might be a cold with gastric aspects going round? (I had also eaten mature cheese 2 nights running which might explain part of my 'ailment'. 😉)
I suspect.. but HAVE NOT IDEA ...so just answering for the fun of it... that it is the IBS again. the gassy and pain sound just exactly like it and then anything can rev it up again. a piece of bread days later etc. Things probably need to calm down. but keep on checking things out. Try not to worry. Oh the cost of going healthy with clean living!!!! EAT right for years and then 1 drink or 1 double fudge sundae can send us reeling. Doesn't seem fair does it. HOPE you are feeling better soon. And hope this isn't cold/covid. you were with family...other people... Thinking of you !
What you said definitely resonated with me. I guess the longer you've eliminated unhealthy foods from your diet the more sensitive and reactive your body becomes when anything unfamiliar, less digestible or more toxic is then ingested. I know that 1 glass of wine is ok for me but any more must definitely be avoided.
I had considered taking a probiotic but was overwhelmed with how many different types, brands etc there are. I'd need to do a lot more research, but at this stage I'm just going to wait and check out there's nothing else causing the symptoms before adding anything else to my 'armoury'.
Thankyou so much for the suggestion though. I appreciate it.
I know we tend to be prone to blame PMR and steroids for everything, but it does sound as if this could be something else. At least you have a GP who is interested and is doing tests. I hope they find the cause. Incubation period for a cold is about three days, does that fit in with seeing your friend? There do seem to be some nasty colds around at the moment.
Yes, it does fit in, although I've just spoken on the phone to the friend concerned and she sounds shocking...hoarse voice, constantly coughing and nasal congestion. I on the other hand have just got minor cold symptoms (alongside the other ones I mentioned previously)
Hopefully yours will not develop like hers. Good luck!
I’ve been diagnosed with adrenal Insufficiency after being on steroids for PMR for many years and all the symptoms you have described are exactly how I am when running low on cortisol.
I have been off prednisolone for a year and am waken most mornings by pain in my stomach It used to be cramps but now not.I have been diagnosed with anxiety but I think the prednisolone has caused this and also that my adrenals have not picked up functioning.What symtims are you having from low adrenal func5,
I had a lot of similar symptoms reducing from 4.5 to 4mg.Had to go back to 5mg.Staying there ror a bit.Also micro greens can upset a tummy .Lettuce can sometimes upset mine.Whatever it is I hope get better soon.Wine doesnt give me tummy problems but can certainly accentuate tiredness the next day.😊
after reading the many answers and your comments my first thought is maybe the greens, it could be your gut finds it hard to accept these on a random basis, I also found this with salad toppers you can buy in the major supermarkets. As with most additional dietary fibre your body needs to adjust, maybe try a week without the micro greens or increase your fibre slowly so your gut adjusts. Maybe try some probiotics.
It seems so odd that my digestive system has been absolutely fine during the past 3yrs since my diagnosis but has suddenly reacted to something and caused these gut issues.
I do eat a healthy, low carb diet and include lots of veg, fruit and some nuts and seeds. I eat lots of salad but my salad leaves are usually spinach leaves or watercress.
Hi, Kendrew. This has just turned up in my Daily Digest! Nothing when I logged in through Google.
So sorry to hear you've been poorly. Sometimes it's all a big mystery and being unable to pinpoint the cause of symptoms SO frustrating!
I haven't felt anything as severely as you but I can definitively say that one meal, snack of anything 'banned' does make me feel decidedly queasy. It's hard to resist those tempting 'naughty' bites and when someone has shopped, prepared and cooked for you how do you refuse?
Earlier on in my PMR journey I went for a pub lunch with friends. Everything was deep fried and I struggled to find anything on the menu that appealed or was remotely 'healthy': chips with everything and seeing them eat deep-fried onion rings coated with batter and dripping with fat made me shudder.
Something has just occurred to me: I'm wondering if you have gluten intolerance 🤔.
I used to find that if you spoke to the kitchen they could/would usually assemble something - if they have salad on the menu and eggs it was simple enough. Not quite everything comes out of a plastic bag in the UK! But I know what you mean - in the UK I dread going to a basic pub for lunch! Even W******* managed it - not that I would cross the threshold now!
Tried that-no salad, fried eggs, steaks (I don't eat red meat), deep fried battered chicken wings, no 'proper'veg, chips and cheesy chips, pre-packed curries (I asked if they were cooked on the premises). You could smell the fat outside! In desperation I chose a vegetable pie thinking I would eat the veggies (indistinguishable in the gravy) and leave most of the pastry...yuk! Felt the results until the next morning. It will be no surprise to learn I've never returned.
I suppose I'm spoiled here but finding somewhere decent to eat at lunchtime in the UK seems a real lottery. Here you just look for a restaurant/Gasthaus with a lot of cars/vans/lorries outside - they guarantee there will be at least one cheap but really good meal on offer because it is where all the workmen go for lunch.
I'm not sure if I'm gluten intolerant or not!....I don't think I am as I can eat bread, pasta, etc. (although I haven't had either for a really long time)
The microgreens were the only change/addition to my normal dietary intake so I'm confused! Haha!... doesn't take much these days!😂
The first few times I ate them (just on one day each week) I tipped them straight onto my plate and it was either after the 2nd or 3rd time that I woke that night feeling unwell. I then discovered it said on the plastic tray to wash thoroughly before eating!! I have done since but maybe the damage was already done!
Re Lateral Flow, a study revealed interesting results. For those who swabbed only their nostrils there were more false negatives that those swabbing their tonsils and nostrils.
The new FastFlow LFTs only have short swabbing sticks, and direct the user to swab the nose only. But longer swabs can be ordered off the internet.
Hi Kendrew, Sorry to hear you are having a rough time. I can’t really add anymore than others have said except that trying a probiotic might help. I have a little bottle of Yakult everyday after my lunch which helps to keep my IBS at bay. Hope you feel better soon. 🌸🌸
I’m not sure what’s going on with you but I AM sending you a big hug. You are always there for others with comprehensive and supportive comments and have always made me feel better. Hope you get on top of it soon. ❤️❤️
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