Has anyone been to a sleep laboratory... - Fibromyalgia Acti...

Fibromyalgia Action UK

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Has anyone been to a sleep laboratory to see whether poor sleep's causing their fibro?

paularose profile image
6 Replies

Hi all :)

I have a question about fatigue. I have found that the pain I'm experiencing is so much more easier to deal with than the fatigue, which is seriously debilitating. I'm now on 600 mg/day of pregabalin which targets nerve pain. However I'm still in pain and have very bad crashes and spend most of my days fatigued or k-oed. That's not an option when I have a 3 year old and I REALLY want to and need to go back to work in Jan when she starts pre-school. I need to attack this condition from the fatigue direction rather than pain direction it seems to me.

Research into sleep patterns of fibro suffers indicates that we are losing out on the 4th stage of sleep, Rapid Eye Movement sleep, the restorative stage of sleep. Now it follows that if we are lacking restorative sleep then we'l be fatgued all the time. In effect we need more restorative sleep than others to help repair the muscle damage that occurs every day (often from doing very little activity) but we're actually getting a lot less. So our bodies can't cope and we crash-it's the body's way of forcing us to stop so that it can repair the damage. Interestingly research showed that when 'normal' people are deprived of the 4th stage of sleep they start to show fibro type symptoms-mmmmmmm!!!!!! So now I come to the question............... :)

Has anyone's sleep patterns been monitored in a sleep laboratory? I think very few in this country have. If so I'd really like to know the outcomes. I am determined to sort my illness out. I have so much I still want do with my life and I just can't give up and take drugs that don't work for the rest of my life. The GPs have limited knowledge and resources so it's easier to just give somone a drug and send them on their way when there could potentially be an answer waiting around the corner. I have to believe that and I have to investigate every possibility.

I look forward to hearing others' experiences :)

Paula

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Extremelygrumpy profile image
Extremelygrumpy

Ok I,ll start by being awkward.... I have had fibro for over 20 years and for the first 7 my sleep wasn't disrupted at all it crept in after the chostochondritis along with restless legs and more recently a sudden deterioration in vision ... My optician says its not that bad but from going from no glasses to suddenly needing varifocals was a little shock.

VG x

Hi Paula - I've read about the research of not getting delta sleep can cause FM symptoms of pain in normal people - also about pain rebound in stopping taking pain medications. I haven't had my sleep patterns monitored though I definately don't reach the delta sleep and also may not be breathing properly during sleep. It would be good to have the option of a home kit of some kind to monitor this, then pass on the data, as there is no way I would be able to sleep under laboratory conditions.

This condition is very complex and my understanding is that each symptom seems to compound each other. A good night's sleep would certainly help for a starter........ I don't think it's taken seriously enough. There should be a clinic which specializes in the myriad of fibromyalgia symptoms, focussing on the individual rather than a 'one size fits all concept'.

I've tried Amitryptiline and Melatonin for sleep, and due to horrible cognitive dysfunction and intolerance stopped them and may try melatonin again in the future - I've recently been given Zopiclone for sleep reluctantly by GP but haven't taken any yet and doubt whether I'll be given anymore. (and may be intolerant anyway) I wanted them in case of emergencies.

Generally, I am finding that Paceing, interspersed with short rests are helping, and I know what my triggers are, though nothing is set in stone, but most of all listening to my body.

I am still trying to come to terms with this condition and have not fully accepted it yet.

I've just had a home sleep study friday night...band round tummy over chest, tubes in nostrils and probe on finger...this was just to study for Apnea as I have had a bad time with waking gasping for breath...doc has only just dianosed the fibro and at present I am just using over the counter relief, did get started on some antidepressants though I wasn't happy with the effects(zoned out until midday the following day) as I simply need to feel me and not like I have an awful hangover...

fibro profile image
fibro

I believe there is a connection and would love it f they automatically did a sleep study as part of fibro investigation. I have had a sleep study done, but I was shocked when I was told I stopped breathing in my sleep 62 times an hour! and my oxygen saturations were extremely low. so basically by not sleeping properly whether it be from any particular sleep disorder, if we aren't sleeping properly, we are starving our muscles of oxygen, which is needed to fight off the constant pain and fatigue. xx

lozb profile image
lozb

I had the tests 2 yrs ago and wad diagnosed with severe sleep apneoa I have been using a cpap machine as I was stopping breathing upto 40 times a night and my blood oxygen was really low, the longest stop was over 61 seconds, and am now going back to see specialist next month as am still stopping breathing with the cpap, hence next step will prob be a portable ventilator at night, scares me so much, and makes me so tired all the time which in turn agrevates the fibro, M.E. and other illness's I have, xx

lozb profile image
lozb

sorry forgot to add I was dia 4 yrs ago with fibro which I think I have suffered with for 30yrs or more x

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