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+--- Thread: New member with EDS. Few questions. (/Thread-New-member-with-EDS-Few-questions)
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RE: New member with EDS. Few questions. - PaulaO2 - 03-04-2017
Greetings from another EDSer! I have Hypermobility type (formerly called Type 3).
No, you do not want to use the soft collar. It is too easy for us to get into a wonky position and hurt something. We need our muscles to do their own job and to relax at night on their own.
You need an autoPAP so it can handle whatever goes on each day, the various medications you may be on, what position you need to sleep in that night, etc.
The tiredness will improve with treatment from the APAP. EDS, like sleep apnea, is a syndrome. It doesn't affect just one system. By working on getting good sleep, you are helping all your other systems. Which in turn helps your EDS because your muscles and connective tissues are getting the oxygen they need to do their jobs as best they can.
RE: New member with EDS. Few questions. - trish6hundred - 03-04-2017
Hi 3mp0w3r,
WELCOME! to the forum.!
I wish you good luck as you start your CPAP therapy.
RE: New member with EDS. Few questions. - 3mp0w3r - 03-25-2017
Thanks for the responses. I am also a little unclear how long it takes to notice results typically?
RE: New member with EDS. Few questions. - Hydrangea - 03-26-2017
(03-25-2017, 11:17 PM)3mp0w3r Wrote: Thanks for the responses. I am also a little unclear how long it takes to notice results typically?
It seems everyone is different. I've heard some take 6 months to notice a difference. I noticed a difference my first morning after!
RE: New member with EDS. Few questions. - eseedhouse - 03-26-2017
(03-25-2017, 11:17 PM)3mp0w3r Wrote: Thanks for the responses. I am also a little unclear how long it takes to notice results typically?It depends. Everyone is different.
Sleep apnea damages your body, and the longer it goes untreated the more damage will happen.
It makes sense (to me at least) that the longer you have had untreated apnea the longer it will likely take your body to heal the damage from it. The machine doesn't cure this damage, it merely removes the cause of it, and it's up to your body to repair the damage that's already been done.
If your apnea started fairly recently perhaps you will notice a great improvement right away, especially if you are still relatively young. If you have had it for a long time, and especially if you are old, say over 70 when you start like me, then it will probably take more time. In my case I was still going downhill with just APAP, and needed oxygen added in. Then I stopped going downhill right away, but it took a few months until I really noticed a clear improvement.
RE: New member with EDS. Few questions. - 3mp0w3r - 03-26-2017
(03-26-2017, 09:51 AM)eseedhouse Wrote:(03-25-2017, 11:17 PM)3mp0w3r Wrote: Thanks for the responses. I am also a little unclear how long it takes to notice results typically?It depends. Everyone is different.
Sleep apnea damages your body, and the longer it goes untreated the more damage will happen.
It makes sense (to me at least) that the longer you have had untreated apnea the longer it will likely take your body to heal the damage from it. The machine doesn't cure this damage, it merely removes the cause of it, and it's up to your body to repair the damage that's already been done.
If your apnea started fairly recently perhaps you will notice a great improvement right away, especially if you are still relatively young. If you have had it for a long time, and especially if you are old, say over 70 when you start like me, then it will probably take more time. In my case I was still going downhill with just APAP, and needed oxygen added in. Then I stopped going downhill right away, but it took a few months until I really noticed a clear improvement.
I'm in my early 40s. I think I caught the apnea part relatively early. However UARs is common with EDS and that was never looked into before.
It's only been 3 days. So far 0 change in energy levels. But chronic fatigue is a common aspect of EDS so how much of it can be attributed to mild sleep apnea remains to be seen.
RE: New member with EDS. Few questions. - PaulaO2 - 03-26-2017
It will take a while for your body to catch up. Some people experience worse fatigue when first starting CPAP. Some people feel better immediately. Some people feel good then experience a slump a few days later.
So keep at it. But don't look at each night's data as truth just yet. Gather it and look at the whole. There is too much that goes into a night's sleep to use just one night as one or the other. Gather about 10 days worth, look for trends, for highs and lows, averages, etc. Just keep at it. Give your body and brain time to get used to the CPAP and to get used to having oxygen again.
RE: New member with EDS. Few questions. - kwhenrykerr - 03-26-2017
I felt a change the first day. It took 6 months for the extra oxygen to make a big change. Good luck to you.