CRPS and Sleep Apnea

Posted by janetdh @janetdh, Sep 7, 2017

I have had Chronic Regional Pain Syndrome for 5 years that began in my right foot, but has spread to other areas in my body. This year I was diagnosed with sleep apnea and began to use a CPAP machine. When using the machine, I am finding that I wake up in the middle of the night with my whole body on fire--from my brain to my toes. It is like all my nerves are on alert and on fire. I will be seeing my sleep doctor next month, but don't think she has had a patient with CRPS before. Has anyone else experienced anything like this?? So hard to understand what is happening to my body.

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Colleen Young, Connect Director | @colleenyoung | Sep 7, 2017

Hi Janet,
Good questions. You might find it helpful to join the discussions in the Sleep Health group, especially this one:
- Sleep Apnea https://connect.mayoclinic.org/discussion/sleep-apnea-29d741/

You may wish to ask your question there about your symptom of feeling like your whole body is on fire with you use the CPAP machine, and see if people who don't have CRPS have also had that experience.

I'm tagging fellow CRPS sufferers @sandytoes14 @charlton @kathyv and @overwhelmed to see if they have any experience with sleep apnea and dealing with a CPAP machine along with CRPS.

How long have you been using the CPAP machine?

janetdh | @janetdh | Sep 7, 2017

Thanks for suggestions. Started using CPAP in March/April and then had significant problems with medications and blood sugar levels that got me on another track and stopped using during that time. Was recently reminded of the importance of using it and couldn't remember exactly why I stopped, so started again about two weeks ago. Some nights it isn't as intense as others, but it can be really bad. I also remembered this was a big reason I stopped with the CPAP before.

oldkarl | @oldkarl | Sep 8, 2017

Hi, @janetdh. That is a rough one. I have obstructive sleep apnea use a CPAP for every minute of sleeping, day or night. I don't have CRPS with it. However, I have burning feet, hands, face, arms, legs, crotch, etc. That was started before I started CPAP use. About all I can say here is that CPAP saved my life. Without it I would have died years ago of CHF. The last while before I started the CPAP, I spent about 5 years sleeping only about an hour per night. In the process I lost my job, nearly my family, and a lot of money trying to find out what was wrong. Anyway, hang in there, but don't let the little stuff get you down. https://bit.Ly/1aw7j3j8

1000016352 | @1000016352 | Sep 8, 2017

Hi, @janetdh. I am RRT and I used to treat many of my patients suffering from COPD or sleep apnea or CHF in hospitals, and in long term facilities. What make that final decision is hard to concluded at the end is that the accuracy of using the increments of air and the machine type. I believe beginning of every issue is beginning from the misusing or the misapplication of the doctor order and the machine type, such as the patient cannot buy the high price type machine which is needed the most here, or the patient puts his/her own decision mixed with the physician's decision because it is helpful for him/her for a minute, and not what is useful for his/her treatment's long term goals. Meeting with your doctor and restate the outlines of your treatment is very important. Good luck, and wish you the best. Get well soon!