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LUPUS UK
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Anxiety at night ☹️☹️

Hi all , the last few nights i have wakened up about 4.00 or 5.00 with a racing heart and feelings of anxiety, ive also been having weird disturbing dreams . This hasn’t happened to me for a long time , the only new drug ive been taking is Etoricoxib . I have been going through a bit of a flare , I have developed photosensitivity and my joints and muscles ache . I was wondering if the anxiety could be connected to the flare ?? I don’t know how to deal with it , i do take bisoprolol 7.5 for palpitations . I just sat up in bed , I tried deep breathing but i had difficulty getting settled and couldn’t get back to sleep. Has this happened to anyone else when a flare has occurred??

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It’s happened to me many times when I wake. I get body wide tremors with it now too.

I don’t know the cause - my middle son has it too as well as night tremors but then, unlike me he drinks a lot of beer and smokes too ☹️. I think he’s very chemically sensitive though and he’s working it out for himself now.

The drugs that have definitely caused it very badly for me are Amitriptyline, Pamiprexole, too much Levothyroxine and T3. X

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It is a horrible sensation Twitchy , i dont know if the distressing dreams are causing it or if it is all anxiety. I don’t want to go through this again as it happened before i was treated and i used to spend most of the night downstairs drinking camomile tea watching movies. I am not drug sensitive like yourself which makes me wonder if it is related to a flare .

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It is horrible I know. This is why I get so upset when neurologists say that it’s functional and can therefore be well controlled through CBT type treatments - despite me being untreated currently for a rheumatic disease?! I know Sjögren’s and Hypothyroidism go together for both of us and also we are much more vulnerable to autonomic dysfunction so this makes me think you are probably right about flare ups and anxiety.

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So frustrating for you Twitchy, living with this you do get to know your own body , i do wish you could find a treatment that you can tolerate and get benefit from ☹️

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Aww thanks so much W🤗.

To be honest it’s not so much the lack of tolerable treatment that so upsets me. It’s living constantly with awful invisible symptoms that apparently don’t exist. Only they do of course🤯😨.

And then when I try to prove it to myself and to my doctors by subnitying to quite invasive tests eg lumbar puncture, heart monitor for a week, lip biopsy, gastroscope, cystoscope, colonoscopy, 3 brain, 2 neck and lumbar MRIs (despite severe claustrophobia) CTs, awful vestibular testing, barium swallow and tilt table .. l get told that my fatigue, GI problems, sensory Ataxia, limb weakness, ectopic beats and tremors are all just “functional”. Even though plenty shows up to say it’s not!

That’s when I get really mad - because, as if our symptoms weren’t horrible enough, to not have doctors believe us about them will drive us to feeling very depressed indeed🤷🏼‍♀️ Xx

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If you were admitted to a neuro ward for observation it might help , but that is the last thing on this earth you would want ☹️☹️

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Yep - stuff of nightmares W!!

Txx

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Hydroxy does that to me even on baby dose. ☹️

Does the Etoricoxib info leaflet list anything like that as side-effects? If not, maybe leave a message for your Rheumy?

It's a horrible thing weathervane, fingers crossed it's sorted soon xxx

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Thanks eekt , there’s no mention of this as a side effect of Etoricoxib. I did speak to the rheumy nurse about the flare and she was going to talk to the rheumatologist, so i dont know if she will get in touch again after that . I think i will load up on camomile tea again ☹️

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Sometimes they forget to let the patient know the outcome...🤷🏼‍♀️

Honey makes camomile tea go down easier I find...well, if you're awake at 4am, maybe chat then...😐😙 xxx

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Thats eekt , I found a nice camomile and peppermint ! Hope you are keeping as wel as can be at the moment, best wishes xxx

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Uh, GP prescribed temazepam...is that a way of writing someone off ? xxx

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Doctor has never suggested temazepam , I would be nervous taking it , did you try it ?

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I've had about five hours sleep from a whole tablet...no waking, no nightmares...here goes with number two, because I'm barely functioning these days through lack of sleep...hope you're doing ok tonight xxx

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Fingers crossed 🤞🏻 it makes a difference as sleep is healing. I had another disturbed night but no dreams which is a bonus xx

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That's an improvement, camomile tea all round then, cheers! xxx

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Yes camomile might have helped, it’s camomile and spearmint not peppermint as I thought. I need a new box today xx

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A doc in Germany told me to have no more than two cups of peppermint tea a day because it's psychoactive !! I was prescribed camomile (after an accident!)...it does reduce my BP, I've monitored it ! 🙂 xxx

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Definitely buying more then 👍

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Hope you have a good night tonight...xxx

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Thanks eekt , you too xx

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Definitely connected to flares I don’t take many drugs .

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Thanks Shorthouse , it’s either that or my palpitations are on overdrive!! You can deal with it during the day but wakening up during the night feeling like this is distressing.

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Hi WV, sorry you are feeling so bad. Do you have the palps all the time or only during flares? I only have them during flares and I usually just take deep breaths and try to relax until it's passed. My flares involve the thyroid when it gets bad. Have you had yours checked?

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Thanks 😀, i only get palps occasionally now as the bisoprolol usually does its job , so I think its probably because of flare . If it happens again I think I will just get up and go downstairs for a drink. My thyroid is under control I think, it was checked about 5-6 months ago . Im not worrying about anything at the moment so I don’t think its to do with me fretting. Hows yourself at the moment, are you keeping well ? Do you take a beta blocker as well ?

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I was prescribed a beta blocker if the palps get bad but both times I had that problem my thyroid was hyper and my dr. thinks it was my immune system attacking the thyroid which caused it to dump extra hormone and gave me temporary symptoms like the palps so I've never actually taken the meds. I just calm myself down by taking deep breaths and relaxing. Physically I'm doing ok right now other than the annoying ulcers! I got them when my mom was placed on hospice care about 3 months ago. She passed away about a month ago so now I'm just dealing with the sorrow which is keeping my stomach upset and not helping the ulcers any but surprisingly I have not had a major flare over the stress so I am lucky for that. I know it's all a part of life but I sure wish it wasn't.

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I know how difficult it is , I think when my mum was diagnosed with a brain tumour I managed on adrenaline and when she passed away my symptoms all began. Please look after yourself and go to your gp about the ulcers , im sure you are exhausted. Sending you lots of positive thoughts and best wishes xxx

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thank you! She was in poor health for a long time so now I know she's in a better place and no longer in pain. That gives me comfort. :) I had one scope where they found the ulcers which now that I think about it were probably already there but made worse by the stress. they put me on acid reducers. I have another scope coming up in 2 weeks to recheck. I can't imagine there is much improvement but I'm hoping there is some with me taking the medicine. I'm sure time will help with the emotions and I will improve. You try and relax. You know the flare will pass eventually but it is always scary!

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Good luck with the scope , i do not envy you that ☹️ . I tend not to realise im stressed until my body tells me ! Take care of yourself xxx

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I can't offer an explanation WV and I haven't been diagnosed with an AI disease (I just suspect I have something due to a long list of symptoms) however I have suffered from the fast heartbeat on at least three occasions in my life over the years, when I get it it actually lasts for about three weeks and I feel wretched, luck would have it I saw the heart and chest consultant during the last flare when ECGs were done, I'd felt ill for a fortnight at least, all agitated, nervous and jumpy, couldn't sleep at all, felt as if plugged into electric to keep me awake. Like I say it was the third time I can recall having it, like a panic attack 24/7. I was put in bisoprolol and went back to normal the next day - it was such a relief. Thing is, what are these episodes that last so long and cause one's heart to race so uncomfortably, I felt anxious the whole time. I have dreadful joint pain and always high CRP on blood tests, I'm called in after them to discuss but nothing happens! I also tested positive for autoantibodies on a blood test I needed prior to an operation- again no follow up.

I do hope these episodes resolve soon for you.

Best Wishes, Kay

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Hi kay , could your racing heart occur during a flare as well . I was put on bisoprolol before i was diagnosed with Sjögrens, i will as rheumy about it at next appointment 🌸

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Yes I'm beginning to think I have flares, just now my hips and pelvis and stomach are in pain, I'm bloated and it seems to worsen the pelvic pain. My lungs are scarred, I suffer SOB with dry mouth, eyes and mucous membranes. Asthma, diabetes, arthritis, diverticulosis but my joint pain and sore muscles are what is causing the suffering. Have a blood test this morning as been a month on beta blockers. I'm going to insist on referral back to rheumatology and I do have an appt at pain clinic (no date but hopefully this year) I've had biotene to help dry mouth and drops for eyes but I've not kept on top of them. I've permanent rhinitis and such dry skin you can see it in my socks! Aveeno has been a lifesaver but nothing for scalp and hairline, is this anything like your Sjogrens symptoms. Sorry for going on a bit lol, you didn't ask for that!

Kay

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Alot of your symptoms are very similar, I think you should go back to rheumatology. I was with my lovely optican yesterday for a check up and he was going through with me about routine i need to keep up with as eyes are very dry . I need to use a heat mask or a warm cloth then massage eyes to stimulate glands and use drops 3-4 times a day , i use hylo forte which are great . I have also use black seed oil on my scalp when it has been sore and irritated , it really helped. Good luck with the referral, 🤞🏻For answers x

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Many thanks for your advice x

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Hi Weathervane

Count me in as well with these types of symptoms at their worse I wake up screaming blue murder and my heart pounding after only a few minutes sleep. Other times it’s more like a constant gnawing of anxiety that won’t let me sleep. I put mine down to a mixture of medication and high levels of stress/anxiety.

Meditation and specific breathing excercises help me tremendously otherwise I just remain awake. It takes some practice to just concentrate on your breathing but it does work.

I feel for you!

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Thanks, i did try using the breathing exercises but I think I need more practice, maybe meditation would be good to try as well. I will put these on my list , im going to try and have a snooze this afternoon to catch up on sleep , i will try to meditation first and see if it helps - might need to set and alarm 😀

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