Fibromyalgia Action UK
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Sleep paralysis

Sleep paralysis

I appreciate there are endless numbers of posts about (lack of) sleep here, but I wonder if I could ask for some thoughts from the superexperienced people here about my individual situation?

Briefly, I was diagnosed with Undifferentiated Connective Tissue Disease/?Sjogrens and Interstitial Lung Disease about 18 months ago. I take hydroxychloroquine and prednisolone (now down to 4mg daily) for this, plus bisoprolol and lansoprazole daily.

Although my lung and joint problems have greatly improved, I am left with chronic fatigue and daily episodes of flushing, nausea and sweating that seem to defy explanation. My sleep quality is very poor and my rheumatologist now considers that my primary diagnosis may be Fibromyalgia.

He started me on amitriptyline, which slightly improved my sleep at 20mg. However, I remain exhausted and subject to debilitating flushes etc. When I last saw him, he suggested taking gabapentine - although I have no significant pain. The following week I saw my neurologist who said he would rather I stopped the amitriptyline and take an SSRI instead.

So far, all I have done is reduce the amitriptyline to 10mg. In the last week, my sleep has deteriorated to the point where it is essentially just a string of sleep paralysis episodes strung together with periods of wakefulness where I try to calm myself and get to sleep. I have no refreshing sleep whatsoever.

Any ideas about what I should do would be great - should I take my Rheumy's advice or my neuologist's advice or neither?

Thanks! x

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Hi

Its so confusing isn't it when you get conflicting advice from different specialists? The word specialist is the key here, they are both looking at you from their specialism only.

You say you are in no pain so unsure why gabapentin was suggested as it is used mainly for nerve pain. I'm on it for my fibro and I can say it does not affect my sleep or help me sleep.

An SSRI'S is mainly used for anxiety/depression, again, I take one in the evening for anxiety and I think this does help me a little with sleep.

Lack of good quality sleep is so debilitating and is probably the cause of your nausea, flushing etc

Have you discussed it with you Gp? Perhaps something stronger in the short term until you establish a good sleep pattern. I know when I was in your situation, I was prescribed a high dose of sleeping medication plus I would have a strict bedtime routine ie, warm bath, hot drink, relaxation tape or music etc. After a while I was able to reduce the medication.

Hope this helps

Judi

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Thank you Judi, those are helpful thoughts. I have been wary of the gabapentine idea. It is fascinating - and alarming - that I have been experiencing these episodes of flushes, shaking etc for nearly a year now, so severely that it caused my GP who witnessed one to have me admitted to the local hospital as an emergency! I've had endless investigations with no concrete result, and I still have an endocrinology assessment pending! But I suspect you are right to pin in on the chronic sleep problem.

Thanks again x

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Have you tried Melatonin?

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No, I may sound out my GP on it next time I see him, though. Have you found it useful? x

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just on it recently but not sure how long you can take it. when you keep waking up you are a little drowsy so keeps you in a sleeping mode.

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fair enough, thanks

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This conflicting information happens constantly. Often

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So I am finding...! :(

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