Just got back from rheumy review, and one of the nurses from my iron infusions was there. First infusion was amazing, I had so much energy, second one, not so much and (as per usual when driving for longer than ten minutes) I had to pull over and sleep in a lay by before I crashed the car. The Nurse was shocked at how worn out I looked today, and the rheumy is putting a referral in for me to have a sleep study done as he suspects apnoea. Anyone have this? The mask for the face looks really freaky :/ But if it's going that way, then I guess that's what I'll have to do. How does the sleep study tend to go?
Also being told I'll keep getting tested for iron levels and if they keep going down, iron infusions will become a regular thing. I'm really grateful my rheumy is on the case, he insists that we'll get everything sorted by the end of the year so at least I can try to get some of my energy back. Fingers crossed.
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Silvergilt
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My husband has sleep apnea and he has been using the mask for over a year now. It isn't the most comfortable way to sleep, of course, as you can't sleep on your tummy, for example, or if you go to the loo in the night, you need to disconnect it, then re-connect it again when you're back in bed. But he got used to it.
The machine has a memory chip inside it that records the percentage of time you use it. Sometimes people with severe sleep apnea that fall asleep at the wheel can only continue to hold a licence if they use the mask for a high percentage of time. The doctor has a duty to report if that's not the case.
It definitely helped his tiredness and focus during the day. he used to get a dry cough in the mornings until the doctor realised that the air was too dry, so now he's got a humidifier attached to the unit.
It takes a month or two to start feeling better, so don't give up on it too early.
The sleep study is just some patches and a monitor that measures the volume of air you breathe. That determines whether you have mild, moderate or severe sleep apnea, as CPAP (the mask) is used for moderate to severe.
Give it a go - I know it looks dreadful but if it improves your fatigue, mental focus and reduces the stroke risk, then I'd say it's worth it.
Thanks for this, it's good to know. I hope I won't be waiting too long for the study, my rheumy did say if I hadn't heard anything in four weeks to give him a bell and chase it up. The fatigue is absolutely destroying me, and I'm due to start my uni module in October. I have no idea how I'll cope, and I had such high hopes for starting uni again But I'm glad my rheumy is on the case.
Hi Silvergilt. Re iron infusions, I have one every 3 months now and they have been a godsend. So hope they continue to work well for you, too. And good luck with the sleep study; I've heard a few people say/write how much a mask has helped them, so do post and let us know how things go.
I think the once every three months is what they're aiming for with me as well, or at least that's what he suggested might be the case. The full infusion the first time was WOW, I can DO THE THINGS. I even did (whispers) ironing. I never iron anything. LOL.
I was reading the post thinking "wow, must ask my rheumy about iron infusions" and then read that an after-effect is the urge to iron things? Urgh, no thanks! I have had two different sleep studies recently, though. Will see the consultant in September about what the next step will be....
So not worth the hassle, we'd have to guide them every step of the way, then they'd make a hash of it so we won't ask them again! Keep in touch about the sleep study, we can swap notes x
I have obstructive sleep apnoea which meant that I stopped breathing 38 times an hour. I started on a cpap machine; mayoclinic.org/diseases-con..., with nasal canulas. I now have a bipap NIPPV ; emedicine.medscape.com/arti..., with a full face mask. My daytime fatigue has greatly improved. If you have a diagnosis of apnoea you will have to inform the licensing authority, you will be allowed to carry on driving if you follow treatment advice, it will make a difference to your insurance. I wish you the best.
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But I'm glad my rheumy is on the case. 
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