Looking for help with swelling and pain from CPAP

[sarahgise05]

Hello! I'm posting here as I'm at something of a loss, and I'm not sure where else to turn. I'm posting on behalf of my mother, who's been very ill with a slew of conditions (diagnosed sleep apnea being one of them) for many years. Her health has begun to decline even further, which has spurned me to try and find new avenues to help her.
My mom has had a slew of health problems since she was diagnosed with Hodgkins Lymphoma stage 4 over 16 years ago... she hasn't had the cancer come back, thank goodness, but currently we (and our doctors) are a bit stumped by her current condition. A few years ago my mom was diagnosed by a sleep specialist with "the most severe sleep apnea [he's] ever seen" and said that she's probably had it for years and that's why her chronic fatigue has gotten so bad. They put her on the CPAP, and she definitely showed some improvement. But it started causing her pain and swelling in her joints. The doctors said a little swelling at first is normal, but after at least 6 months it still hadn't gone away... and was getting worse. It is similar to Rheumatoid Arthritis symptoms, but they were only triggered when she used the CPAP. They tried her on the BIPAP and a dental device for sleep apnea, but the BIPAP caused the same problems and the dental device just plain didn't work. We have heard of the Inspire device you can have surgically implanted, but are not sure in her current state that she could withstand a surgery. The Cleveland Clinic diagnosed her with Dysautonomia, but that's mostly an umbrella term for malfunction of nerve systems, and there's not necessarily a "treatment" except to find the underlying causes. Honestly from my perspective she seems to be fading away, sleeping more and more (without air because of the sleep apnea). At this point, as of about 6-8 months ago, she's no longer able to even leave the house. We're extremely concerned obviously. Currently they are having a Palliative Care nurse come visit her to prescribe medications, as she's unable to go in for doctors visits. Our current plan is to get the pain under control so she can use the CPAP again until we find something else that helps with her sleep apnea. My instinct is to take her to the Mayo Clinic (she went there for the pain management program in 2006), but we're worried that even if we're able to get her all the way from Texas to one of their locations, that they won't be able to help her. I'm wondering if anyone has experienced something similar to RA symptoms while on the CPAP, and/or if someone is able to point me in the right direction of someone who can help. She certainly has a complicated case, but any input at this point is more than welcome!
Thanks in advance for anything you can offer!

[kteague]

Saw your post yesterday but didn't reply because it was a bit beyond my thinking capabilities at the time. Still don't have answers, but do have a few questions.

My first inclination is to wonder exactly how using cpap could cause a flareup of RA. Maybe someone with knowledge of these specific medical issues can explain to me the exact processes in the body involved in this. Are you 100% certain there weren't other contributors that just happened to coincide timewise with the start of CPAP use? I can't help but be suspicious that the very thing your mom needs is being found gulity by association.

I know this is a long shot, but I want to throw it out there just in case. Does your mother have any issues with restless legs or periodic limb movements? The reason I ask is that my experience with this was that going on CPAP resolved my sleep disordered breathing. Once my breathing was ok I slept better without the respiratory disruptions. The down side of that was that sleeping better gave my other sleep disorder, PLMD, more opportunity to act up. When my limb movements were at their worst, my legs stayed edematous with progressive weakness to the point of disability. Seemed a cascading effect on my overall health and cognition. It was as if I was slipping away and not knowing why. If there's any chance this could relate to your mother's situation, we can talk more. It's just my only perspective on things getting worse when on CPAP.

Best wishes in finding a way to help your mother.

[Pugsy]

I am at a total loss as to what might be going on to cause such symptoms as a response to cpap therapy pressures.
I just can't imagine anything that would cause it.
It isn't common for sure. I have never seen such a complaint much less a solution for it if cpap was the cause.

Just how bad is her OSA if she doesn't use cpap? Is this a situation where cpap is causing more of a problem than it is fixing?
Do we know for sure that the cpap therapy itself is optimized and apnea events are at a minimum?

[ChicagoGranny]

sarahgise05

I'm so sorry for what your mother and you are going through.

I couldn't find any studies linking CPAP and RA. However, there are some studies linking RA and sleep apnea. Here is an article referring to some of the studies - https://www.verywellhealth.com/link-bet ... is-4122346

What I take from it is sleep apnea can worsen RA, and RA and sleep apnea have some common risk factors.

[chunkyfrog]

I would ask for more help with the dysautonomia.
I would blame that rather than cpap.

[D.H.]

A "good" answer is probably beyond what any of us can give you.

However, you need to consider the possibility that Sleep Apnea is masking her symptoms.

I am not suggesting to leave Sleep Apnea untreated, as it's a serious illness in its own right!

The only thing I can suggest is make sure that she is seeing a sleep doctor who's a neurologist.

[colomom]

How did they determine that your mom has dysautonomia, did they do automatic testing?
If so have they looked for underlying causes that could explain the dysautonomia, sleep apnea, and joint problems? Have they considered connective tissue disorders? Is your mom sure that there is a direct correlation between Cpap usage and her joint issues? Have you considered the possibility that while using Cpap her sleep may be less disrupted which may result in longer times sleeping in one position, which could aggravate existing joint problems?

[sarahgise05]

Saw your post yesterday but didn't reply because it was a bit beyond my thinking capabilities at the time. Still don't have answers, but do have a few questions.

My first inclination is to wonder exactly how using cpap could cause a flareup of RA. Maybe someone with knowledge of these specific medical issues can explain to me the exact processes in the body involved in this. Are you 100% certain there weren't other contributors that just happened to coincide timewise with the start of CPAP use? I can't help but be suspicious that the very thing your mom needs is being found gulity by association.

I know this is a long shot, but I want to throw it out there just in case. Does your mother have any issues with restless legs or periodic limb movements? The reason I ask is that my experience with this was that going on CPAP resolved my sleep disordered breathing. Once my breathing was ok I slept better without the respiratory disruptions. The down side of that was that sleeping better gave my other sleep disorder, PLMD, more opportunity to act up. When my limb movements were at their worst, my legs stayed edematous with progressive weakness to the point of disability. Seemed a cascading effect on my overall health and cognition. It was as if I was slipping away and not knowing why. If there's any chance this could relate to your mother's situation, we can talk more. It's just my only perspective on things getting worse when on CPAP.

Best wishes in finding a way to help your mother.

Thank you for your help and advice! I apologize for the delay- somehow I set my preferences to where I wasn't getting notifications. I'm curious about the PLMD. I'm not sure about the restless legs and periodic limb movements, but I will ask her about that. I hadn't thought about other sleeping disorders that could have been at play. Our plan is definitely to try the CPAP again, and take better records of exactly what happens when. Can't think of anything else until we can get to Mayo Clinic or something. Thanks again, and best of luck to you!

[sarahgise05]

I am at a total loss as to what might be going on to cause such symptoms as a response to cpap therapy pressures.
I just can't imagine anything that would cause it.
It isn't common for sure. I have never seen such a complaint much less a solution for it if cpap was the cause.

Just how bad is her OSA if she doesn't use cpap? Is this a situation where cpap is causing more of a problem than it is fixing?
Do we know for sure that the cpap therapy itself is optimized and apnea events are at a minimum?

All great questions! I think our goal when I go visit at the end of the month is to monitor exactly what is happening and when... it does seem like such an odd thing that the CPAP would cause. Thanks for reaching out!

[sarahgise05]

How did they determine that your mom has dysautonomia, did they do automatic testing?
If so have they looked for underlying causes that could explain the dysautonomia, sleep apnea, and joint problems? Have they considered connective tissue disorders? Is your mom sure that there is a direct correlation between Cpap usage and her joint issues? Have you considered the possibility that while using Cpap her sleep may be less disrupted which may result in longer times sleeping in one position, which could aggravate existing joint problems?

I'm honestly not sure how they tested her, but I'll find out. I have definitely heard of the issue where sleeping longer times in one position causes problems, but the doctors said that should ease up after a few months once her body got used to it (which it didn't unfortunately). Not sure if her doctors have ruled out connective tissue disorders- I know there was a lot of damage done by the radiation from the cancer early on, but not sure if it's related. Thanks for the help!

[colomom]

I'm honestly not sure how they tested her, but I'll find out. I have definitely heard of the issue where sleeping longer times in one position causes problems, but the doctors said that should ease up after a few months once her body got used to it (which it didn't unfortunately). Not sure if her doctors have ruled out connective tissue disorders- I know there was a lot of damage done by the radiation from the cancer early on, but not sure if it's related. Thanks for the help!

My son has dysautonomia, it’s not curable but there are treatments. With the dysautonomia diagnosis if you end up taking her to Mayo I recommend you go to Rochester and plan to be there for at least a week. Phoenix also has a great dysautonomia specialist (Dr. Goodman) but he is nearly impossible to get in with. If you’re seriously considering Mayo I recommend you get appointments scheduled, you can always cancel. There aren’t many places in the country that offer automatic testing so there may be a wait for appointments. If you go you might also want to try to get her in with sleep medicine, maybe try a doctor with sleep medicine/ neurology as a speciality.

Good luck, I hope you able to figure something out to help your Mom!

[squid13]

My wife has dysautonomia and when it starts to bother her she takes a teaspoon full of salt in water and then she lays down for awhile and it passes, the salt constricts the blood vessels and increases the blood pressure. It works for her and that's what count's. One lady in the support group when it hit's would just fall out of her chair, or one day she was on a garden stool working in her garden and just fell over. The Doctor she had also had dysautonomia.