LUPUS UK

An opinion from the sleep specialist

Continuing my trudge through the various bits of the NHS, this morning, I was seen by a consultant specialising in sleep disorders. His main conclusion was that medicine struggles with conditions like mine/ours because it has become too narrowly specialised. Systemic auto-immune disorders affect all our body systems, and no single consultant has sufficient expertise to understand the complex interactions that underlie our symptoms. So we end up being treated piecemeal, with multiple drugs that may not work well together. Even rheumatologists, in his view, rarely had sufficient expertise in the necessary fields.

He could tell me that I don't have a sleep disorder of the kind that is normally seen in his clinic, but I clearly do have insomnia with unusual features, that is unlikely to be helped with CBT.

We talked about medication, and he had some interesting opinions. For example, he said he never uses amitriptyline because he's found it produces too many unwanted effects in his patients. He also advised me against starting a SSRI in the absence of a diagnosis of clinical depression (as my neurologist had suggested).

He did offer me a full sleep laboratory investigation (with electrodes etc), but said this won't be available until he's managed to recruit a suitable specialist into the team - and they are rare as hen's teeth (he took a call from a candidate currently based in another country while I was there).

In conclusion, an interesting discussion. But the bottom line is that he could offer nothing in the way of understanding my problems, far less treating them....

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WOW: i ❤️ this medic’s take on the immune dysfunction & connective tissue disorders scene 👍

Thanks for posting, mike 👏👏👏👏

Have you done any CBT before? Am a big fan...

😘🍀😘🍀

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Yes, I was pleased to speak with someone who was as open as this. I think I'm now edging towards being diagnosable with depression - simply because despite being seen by so many clinicians, my physical symptoms continue to deteriorate, and I am losing hope. So although I'm pretty familiar with CBT, it may become something that I need extra help with soon.x

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As much as another can, i feel as if i understand. You know well just how tough a life we lead...and you are very courageous about it....my experience is that we can do our v best via selfhelp....but, i, for one, couldn’t have managed 64 years of progressive illness (40 of those in the diagnostic wilderness with no effective systemic treatment) without both professional help & even medication at times. Take care mike XOXO

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thanks coco,

You've had to fight this battle for so many years and seem to have managed it brilliantly, so you are a great role model x

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Thanks...your encouragement means a lot to me. Where would we be without one another? I found the going much much harder before i joined this forum 6 years ago XO

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Hi,

I'm new here. I have mixed Connective tissue disease, lupus, and degenerative disc disease. I've never heard of CBD. Would you please explain it?

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Hello sheilweil

CBT is Cognitive Behavioral Therapy. It’s become an officially approved popular treatment over the years. Here is a link to a NHS Choices explanation of CBT:

nhs.uk/conditions/cognitive...

And here is ane cerpt from that link:

Cognitive behavioural therapy (CBT) is a talking therapy that can help you manage your problems by changing the way you think and behave.

It's most commonly used to treat anxiety and depression, but can be useful for other mental and physical health problems.

How CBT works

CBT is based on the concept that your thoughts, feelings, physical sensations and actions are interconnected, and that negative thoughts and feelings can trap you in a vicious cycle.

CBT aims to help you deal with overwhelming problems in a more positive way by breaking them down into smaller parts. You're shown how to change these negative patterns to improve the way you feel.

Unlike some other talking treatments, CBT deals with your current problems, rather than focusing on issues from your past. It looks for practical ways to improve your state of mind on a daily basis.

I hope this helps you understand CBT. We need all the help we can get, and many of us find CBT helps a lot

🍀🍀🍀🍀 coco

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"But the bottom line is that he could offer nothing in the way of understanding my problems ... "

Not so sure I'd go that far - I think he shows a very deep understanding of problems that most medics aren't aware even exist...

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As you say, he seemed to have an understanding of the systematic nature of it and was able to articulate that more directly than most other medics have managed to. But then, I guess that's an understanding that a lot of us on this forum already have. Tbf, I wasn't expecting much from the referral, which apparently originated with my cardiologist, back from when I was being treated for "heart failure" 18 months ago! x

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I also like your consultants views, he was being very upfront and honest. refreshing. I agree I feel like a body part as I trail around my different consultants, but need their input , tests etc. Still i do think that often we cannot sleep because the disease acitivity is not being controlled well enough. My sleep patterns are a big indicator of how well my MCTD etc is being controlled. The first time I was given steroids I slept like a baby and still remains helpful in my sleep. When flaring I will wake roughly ever two hours , two and four o'clock being key times. Not a problem falling asleep , just the cycles of waking and symptoms. I cannot take Amtptyline as did not suit me and made Sjogrens part worse, causing dryness. Likewise did not get on with SSRI drugs, felt hyped up and tearful. Not sure if any of this helps, Lou xx

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Thanks Lou, I do recognise some of those experiences, especially the doubled dryness on amitriptyline. At this point, one of my concerns is that my main problems might be caused by medications rather than the underlying condition, so adding more meds feels like disappearing further down the rabbithole. x

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Yes I understand you add another in until do not know what sides effects come from where and what is doing what. I was lucky in some respects as some of these drugs I took just on there own and so easlier for me to monitor. SSri two decades ago when all this began, but less severe then. Women in thirties, bloods ok, SSRI prescribed and so it goes. Lou x

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👍👍👍👍 good point re figuring out which meds is causing what...eg because we have been building up my combo of meds v slowly over 6 years, side effects have been fairly clear...eg am v lucky: 20mg amitryptyline nightly hasn’t made my sjogrens worse than it was already, and this dose has helped HUGELY to deepen the sleep i do get between wakings. my sleep pattern had been severely disrupted for many years due mainly to chronic pain and anxiety....now i’m in much less pain thanks to my luous meds, and, although my sleep pattern remains broken, the relatively frequent waking periods don’t disturb me or boost my anxiety the way they had for such a lonnnng time...XO

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Hi, I like your consultant’s attitude but like you say it’s very depressing that you are still getting no answers and no sign of recovery. Please don’t give up hope. I think you’re amazing - I always feel better after reading one of your responses to someone struggling on here. You give such insightful and kind advice.

I think it’s hard to sort out where the depression comes from. Is it as a result of feeling so ill for so long, having no answers or clear idea of how to improve, is it the actual disease that causes inflammation that causes depression, the medications or any of the other rubbish things we have to cope with?

I was in a similar position to you recently and decided to see a counsellor mostly to gain acceptance of the ‘new me’. I was cynical as I didn’t think I needed to change my thought processes or behaviour, I just needed to get better! It surprised me how useful it was though and I suspect if it was anyone else on here feeling like you do, your wise advice would be to give it a try?

If it’s any comfort I was at the point of thinking I would never get better (although I’ve had lupus for years now, it has always been relapsing/ remitting and I’ve always recovered after weeks/ few months in a flare) as this neuro lupus flare had been much more severe and long lasting (although only 7 months which is much shorter than yours). BUT about a month ago almost all the problems started to resolve and I had days where I had proper energy again (and my mental state completely reverted to its normal cheerful self) so my fingers are massively crossed you will do the same. It can feel like it will never improve but the advantage of these AI diseases is that they so often do.

Have any of your medics ever prescribed a big dose of steroids? It’s the only thing that really helps for me and although I’ve now been told I will have to take them for ever and I was very concerned about side effects, I’d trade most things for the energy and improved life they give me.

How is the pneumonia? That will also have taken a massive toll on your energy.

X

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Thank you for such a thoughtful and caring reply, melba, with lots of useful reminders and suggestions. Not least that many people - including you - have travelled this road before, and lived with these feelings for so much longer than me - and still come out smiling (or something close!)

The worst of the pneumonia has passed, thanks. My ribcage feels like I've been twelve rounds with Mike Tyson though, it's soooo sore from coughing.

x

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Well I wasn’t smiling much a couple of months ago I must admit!

One thing the counsellor said which really hit home was that accepting the way we are at the moment doesn’t mean giving up hope of returning to our old selves.

Also, and I know it’s small comfort for having ended up with such a rubbish disease, if you hadn’t got the disease and joined here you wouldn’t have helped so many people. Don’t underestimate the impact someone with your compassion and wisdom has on the rest of us. One of your responses to someone on here really struggling with depression helped me enormously at a time I was at the lowest I’d ever been and sure it helped her and other readers too.

Glad the pneumonia is improving

Take care and hope 2018 brings some clarity to pinpoint the cause and some much better health for you

X

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Thank you, that has made my day :) I would not have gotten through the past couple of years without people like you sharing their experience and compassion x

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I’m hoping you feel well enough in the New Year to help with a lupus/ CTD research study I’m doing. Could definitely do with your mental health background and brainpower!

X

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Sure thing - I'll look forward to it! x

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Hi whisper it

Interesting reading your post about seeing the sleep specialist!. Sorry that it hasn't offered a lot of help or made you like having an auto- immune illness any better!. They are very tough to deal with and not surprising that having to trudge from one specialist dept to another getting nowhere quickly is a quick recipe for depression. All we want is answers and treatment and the medics keep saying they don't have the expertise to deal with them but not a lot changes!. Will you go for the sleep assessment ?. I guess you have nothing to lose!. I'm sorry that it's so tough specially hits home at Xmas!. X

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Thanks misty,

Yes, if nothing else, it'll get me out of the house. Hope you are shaping up to enjoy Xmas in good form x

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Thanks Whisperit , guess it's a case of leave no stone unturned for you!. I've just been put on a beta blocker to slow my heart rate!. It's all the Xmas excitement and thought of more Gastro tests in new year!. It just never stops for us, like hamsters stuck in a wheel!. Hope you have a lovely Xmas with your mum and daughter. How's the wildlife?. X☃🎄

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Overexcited again, misty? Tsk tsk no more sherry and an early bed for you young lady....oh yes, and take these pills...ooer, I'm sounding quite creepy now, aren't I? The wildlife is pretty quiet atm, though there was a single Brambling visiting the birdtable in the snow. Hope all yours are well x

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Glad the birds are coming for foid whisperit. Do you do the RSPB survey end of Jan?. We're all quiet and hibernating down here!. Will take your advice in time for big day!. Have as healthy a one as possible. X🎄☃

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Yes, the big garden birdwatch is good fun. Enjoy your hibernation x

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That's great Whisperit that you do the survey. It helps to feel we're making a difference doesn't it?. I love it now they include wildlife as we watch out for our hedgehogs then as well. We have had sightings then other years specially if mild weather!. Have a lovely time. X☃🎄

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Great to see everyone working together on this post. Mindfulness meditation can help. This will be covered at the Lupus UK information day in Llandudno May 12th 2018. The video will be available a week later. Best wishes Kevin

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Great, thanks, Kevin x

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This just rings far far too many bells for me Mike. For what it’s worth I would never ever touch an antidepressant again - especially the SSRIs - after a horrendous experience of one for neuropathic pain. Amitriptyline was fine for me for 3 years but it made my eyes too extra horribly dry and finally it gave me severe palpitations, even in the lowest dose. So I’m with your sleep specialist - who sounds like a bit of a dude, as my boys would say. Xx

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