Hi All,I would greatly appreciate your thoughts on my current status. I've recently returned from a lovely holiday long haul destination. After outward journey 15 hours and +4 hour time difference I was fine. Maintained my usual dose 3.5mg Pred adjusting time of dose gradually for 4 hour difference.
We were away for 12 days and I was well throughout.
Since return journey I've felt dreadful.
Keep waking up through the night with banging headache which doesn't clear until lunchtime. Also feel quite shaky and slightly nauseous first thing.
No problems with eye sight or chewing, no scalp tenderness.
Could this be a result of adrenal insufficiency ?
Aches and stiffness in hips/ buttocks have also increased considerably.
I took a Covid Test just to rule that out but result Negative.
Any thoughts you have would be greatly appreciated. I've tried to get through to GP and Rheumy Nurse to discuss without success !
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CarolF1312
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I seem to be deteriorating a bit after being quite well on a lovely family reunion in Australia. I am putting it down to missing my grandchildren, the cold damp weather, pollution, going out less and possibly picking up a virus ( Covid test negative) on a flight with a cougher. Also the Australia time difference seemed to enable better sleep for me. My plan is to reduce from 6 mgs of Pred but I haven’t felt well enough. I am sure the complex Adrenal system was impacted too. I am hoping that time and rest will do its healing. I’ve got a CT scan on my sinuses coming up, I hadn’t realised that Large Vessel Vasculitis could strike there. I really love Christmas, the bikes and hoverboards have arrived in Australia. Hopefully time and rest will restore us both. 🎄
Thanks for quick reply.Australia...now that is a long journey ! Glad you enjoyed your holiday but it seems there is a price to pay.
I hadn't realised LVV could affect sinuses. Hoping that's not the cause of my headaches. Once again this mornings headache has cleared and I'm starting to potter around the house.
Please let us know how you get on with your CT scan.
I will let you know. I always have a dull headache at least.
I am listening to Radio 4 and the item reminded me of Seasonal Affective Disorder another consideration but purchase a lamp from a reputable company - or better, go for a 15 minute walk.
’it seems there is a price to pay’ - a statement my sister in law in remission from cancer says.
I think it’s true but sometimes it’s worth the price for your mental and social health, the joy of time with friends, family and those grandchildren cuddles SJ! While I had some days relaxing on a sun bed in the warmth, even when feeling very fatigued, I reflected that on return I just have to brace myself for a grey wet cold UK winter and think about the spring flowers in a few months time. My plan is to focus on me, my health and get out in the brighter drier days when I can. It isn’t easy and I love the warmth and sun which lifts the spirits but I’m in this horrible place with GCA and have to just pace, pace, pace, not panic and plod on.
I took have taken weeks to recover from a relaxing holiday in Portugal. I had recovered (or maybe so I thought!) from a virus prior to flying out and did not feel well while there. It was only a 2.5 hour flight and I had travel assistance but so wiped out on the return travel day and on arrival at home having felt perkyish on our flight out. For me I think it’s the emotional stress and inability to get restorative sleep with steroid induced insomnia that is a problem. I feel settled on my current steroid dose - 17.5 having upped it for 8 days to 20 on the advice of rheumi as I had a few headaches and some jaw pain eating crusty bread on one occasion. I have no headaches now and bloods were normal. In fact I think I may have panicked and the headaches may have been stress induced, stress I didn’t know I had. Things are settling down now as far as they can with this illness. Today is better than yesterday. Good luck. You’re not alone.
I didn't find the journey home stressful or uncomfortable as we treated ourselves to business class. I know, its a ridiculous price but justified by no holidays during the pandemic ! It was just a long time in the air. I was actually ready to come back home for those cuddles from the grandchildren. Just concerned, that I feel so unwell after a lovely break in the sunshine.
I'm very pleased to hear you're getting back to normal. Whatever "normal " is with PMR.
There is a lot written about the effects of air travel particularly the effects of reduced pressure, lower oxygen and dehydration. I find I’m ok for a couple of hours followed by a slow decline up to 5 hours after which I feel awful. After two 9 hour flights this time last year I had to go to bed for a day because of feeling like you do. You did twice that. It then took 3 days to feel like I was recovered. I’m only 59 but since GCA, steroids and Covid I’m now quite intolerant of low pressure.
No matter what class you fly, your body is being put through the mill. These couple of articles might be of interest. However, keep an eye on it.
The boosters don't stop you getting it, just make it less worse. And we've discussed a lot recently about how unreliable the LFTs can be with Omicron. My daughter tested every day and finally got a positive on Day 4 with a test out of a different pack while the original pack still said -ve. And all issued by the NHS ...
It might be - but I'd be more inclined to blame all those hours in a plane! Plus I find the direction of travel makes a difference for me and returning from warmth to the UK in November is always horrible! Where did you go?
Hi Carol, sorry to hear you're not feeling so good. Banging headache waking you up....could it be high blood pressure? But maybe not if it goes away later. Feeling shakey and nauseous sound like adrenals don't they?
But the whole lot together coming on suddenly after a flight sounds like a virus??
Best of luck with it....and let us know how you are x
I've had this after long-haul holidays inthe past and at first put it down to jet-lag and/or overdoing sight-seeing etc, but I think it's more likely the effects of the stress of travelling. I've always ended up having to up my steroid dose for a 3-5 days after any holiday, seems to work for me anyway
Severe fatigue and stiffness mainly, don't recall headaches, although I did have a GCA scare after a short trip to Germany 3 years ago (turned out to be negative luckily)
Really hoping I'll be back to my " normal " soon. I was due to reduce Pred from 3.5 to 3 but not even contemplating that at the moment. Rheumy won't be happy when we speak in two weeks time.
I was interested to read your post because I am experiencing something similar. I have just returned from a month in Australia and have worsening hip pain and spasms in my back muscles, which I always associate with Pmr flare. Also the tiredness is extreme, I keep falling asleep, although it’s been a week since my return.
I’ve just decided to up my pred from 5 to 6 and see if that helps. Frustrating as before going I had to up the dose from 4 to 5, I seem to be going backwards!
Reading these other replies it seems the stress of travelling could be the cause, so maybe we need to take extra care of ourselves over the next few weeks. Also try vitamin d, I find that helps during the winter.
Hi Yellow DogSorry to hear you're suffering after your long journey. I can only imagine how tired you must feel after that journey and time change. It really takes the shine off a lovely holiday.
Like you I'm very reluctant to increase my Pred as its such a struggle to taper down.
Once again I awoke at 5.30 this morning with a dreadful headache which is just starting to clear after paracetamol and ibuprofen.
sounds like the stress of the journey and jet lag has taken a toll on your body. Whenever I travel usually the long haul flights to see my relatives in the UK , I need a good few days to feel less aches and fatigue.
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