Hi Everyone, my name is Cynthia. I was diagnosed with sleep apnea in July and have been on CPAP therapy for almost a month. I took a three day home sleep study and the initial AHI results were 55.4 an hour. I now use a ResMed AirSense 10 CPAP machine with a AirFit (F10) full face mask and my AHI is already down to <5 most nights. I am currently set at 9 cm H2O with a humidity level of 3. I have so far been devoted to the process (all night, every night) but, I am having one issue that I can't seem to find an answer for. After the first week I noticed my feet, legs, hands and face were becoming swollen to the point of discomfort.
I have been doing research on the topic but I get nothing. Websites and other forums are outdated with no useful information. Plenty of people seem to have this problem but all I read are sad stories of how their doctors wouldn't believe their edema was CPAP related, offered drugs (Lasix) or ran a bunch of other unnecessary test. Mostly, no help whatsoever. I tried lowering my humidity level and elevating my feet to no avail and it just seems to be getting worse. I am doing great with all other aspects of therapy but, if I can't get this issue resolved I'm afraid I might give up.
Please talk to me if you have had, or are having, a problem with edema related to your CPAP usage and if you have found relief. Thanks.
CPAP use usually relieves oedema, rather than making it worse. If your sleep specialist cannot come up with any better answers, I'd seek the opinion of a cardiologist. It may be a sign of something else going wrong. I can assure you that it's almost certainly nothing to do with your humidifier.
Well, since you seem intent on shutting down any discussion on the topic, I will elaborate. My edema (fluid retention) was so bad my eyes wept, my nose ran constantly, I couldn't make a fist and I couldn't put on my shoes. I gained 9 pounds in water weigh and my blood pressure went through the roof. I spent my first night since starting CPAP not using it for the whole night, and guess what, my edema was almost gone by the next morning. Of course, I was up every hour going to the bathroom but, weight was down 8 pounds and my BP was lowered significantly. Now, how can this not be CPAP related? Many other forums have addressed this topic so I know I am not alone. I am not saying CPAP therapy is bad, in fact it had been great for me but, all I am asking is if anyone has had success in dealing with this problem. If it makes you feel any better, I will be seeing my PCP next week and, like everyone else, I will do the required testing and/or medications he recommends.
I stumbled upon this conversation and it really peaked my interest because I am also having problems with edema. I have been seen by a cardiologist, everything is in fine working order, as are my kidneys. I am waking up swollen as well....its hard to make a fist and I just feel bloated all over. Not sure how my bipap could figure into this but I find it interesting that others are also having this issue.
I think you must have misunderstood. I said that CPAP USUALLY relieves oedema because it does, but that doesn't mean that it can't be causing it in your case. Your situation may be unusual but that doesn't mean that CPAP is not causing your problem. I certainly have no interest in shutting down discussion. If you learn anything more about what is happening please let us know because I'm sure there are plenty of people, not least of all myself, who would be interested in hearing about it.
OK, have to admit I am not all that up on medical jargon but found an article at: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4244615/
Hope the doc who wrote it doesn't mind me quoting a bit:
quote: PAP also has several effects on respiration in HF. First, PAP maintains alveolar pressure and prevents the alveoli from collapsing at the end of expiration and thus improves gas exchange and oxygenation through the recruitment of alveolar units, counterbalance of hydrostatic forces leading to pulmonary edema, and maintenance of airway patency[19-22].
I got edema but not from the CPAP machine. I first got it at the cabin years ago. Never had it prior. I realized I was having bacon every day where I normally didn’t. I cut out salt from most of my diet and that did the trick until about 2 years ago. I also have Idiopathic Hypersomnia, meaning I’m sleepy 24/7/365. I was on stimulants (high doses to stay awake during the day). Had to cut my stimulants in half and finally had to stop them completely. This is what was causing my edema the second time. My mother had problems with edema. I’m not sure if edema runs in your family or not. Something to check into. Also, try cutting down on your salt intake. There is so much salt in products nowadays. I’d try that to see if it makes a difference. It could be it just showed up around the time you started using your CPAP.
Another thing, cutting your humidity lower can cause your eyes to water, etc. I lived in FL for a year helping my parents. It’s humid in FL so I did not use my humidifier on my CPAP. When I moved back to MN, I still did not use my humidifier. It was like I had a cold all the time that first winter back. My eyes were watery, runny nose, etc. I was miserable! Then I realized the air is very dry in MN in the winter because of having to heat the house. I turned on my humidifier and it “cured” my constant “cold”. I now have the humidifier set at 80 all the time. I actually found that I’m not getting my usual cold every year that I’ve gotten every year since childhood. Must have something to do with low humidity.
Hi Cynthia, I too had edema after my first week of CPAP use. Before CPAP I was getting up 3 or more times a night to use the bathroom (more than once is called 'nocturia'). I did research and found that sleep apnea is a common cause for nocturia as poor sleep changes the release of an antidiuretic hormone in the body. Once I eliminated the sleep apnea with the CPAP the nocturia went away, which is a good thing because its not good for the kidneys to be working overtime at night when they need to rest. You'd think more doctors would know how CPAP use affects the kidneys, but maybe not. I was very happy the nocturia was gone and I was determined to continue using my CPAP, so I had to find other ways to eliminate the new edema problem such as reducing my salt intake and elevating my legs more often. The edema has improved and I expect it will get better as my body adjusts to using the CPAP. One night recently I wasn't able to use my CPAP and I had to get up 4 times to use the bathroom, and the very next night when I was back on the CPAP again I didn't have to get up once. So there seems to be an immediate negative affect on my kidneys when I don't use the CPAP which helped motivate me to continue being diligent in using the CPAP. By the way, I also used a humidifier and using it or not didn't seem to have any affect on my edema so I have continued to use it as needed for nasal comfort. I hope this helps.
I notice your setting of 9 cm may be too low. With your edema you should be able to tell whether with the increase of CPAP setting would bring down your edema. Try increase by 1/2 cm,for a week and observe your edema by pressing and see its indentation, or your shoes size. Increase next 1/2 cm for a week . and observe further. Eventually your edema disappeared. Stop increasing for this is the RIGHT VALUE of your CPAP setting. Please do not exceed more than 12cm. Best regards. Remember with all thing remain static ( same food, drink, medication , activities remain the same ) Waiting to hear your dramatic result.
IMO the "RIGHT VALUE" of your CPAP setting is what works best for your nighttime breathing, and that is something an attentive, caring, informed doc should be working with you on, NOT just checking for pedal edema. I can't say that increasing pressure wouldn't be useful -- maybe it would be in some cases -- but I've been a patient misdiagnosed for well over 20 years, and heard all kinds of "advice" from patients and doctors alike. Both groups have been right sometimes, and both have been wrong sometimes. The wrong advice in this condition can be seriously dangerous, so be very care-full and if you want to experiment, at least know how to keep all your other variables constant and let your doc know what you're wanting to do.
Hi all... I'm so glad I found this conversation. I am a new bipap user and have noticed my ankles, legs(esp. my right one) and hands swelling bad. My complaint is pretty much exactly like Cynthia's.
My doctors look at me like I have 3 heads when I complain about it. "Maybe it's the weather, maybe too much salt... here's some pills". But why one leg more than the other? Leaky veins. Go to a specialist. Ok, but why is it better and I pee more when I don't use machine? "I don't know ". .... and they are not interested is further pursuing the issue.
Can anyone tell me why this happens and if there is a fix other than not using machine? My pressure is limited at 9 and 5 so I get noise from the sleep specialist that it's set so low it can't be bothering me.
I have previously had all kinds of heart and lung tests that showed my veins are squeaky clean and no physical issues.
I'll throw one more issue out because I get the blank stare and laughs from my dr.
Every morning only when using machine.... when I wake up I get like a full body forced stretch that is ridiculously intense. It causes me at times to get cramps in both legs and all my muscles stay tight all day. It's exhausting and really annoying as I can't even move a leg without setting it off. It doesn't happen off the machine. All my bloodwork is normal.
Any insight on that would be helpful as 3 drs have no clue and aren't interested in helping.
Thanks.
Hi Sickntired,
This is the first time I have ever read any mention of the stretching/cramping issue and it really surprised me because I have developed that habit over the past year or two but I have been using CPAP for several years so I had concluded that it was caused by other issues related to aging.
I still like to think that I am in control so it never really occurred to me that it might actually be a symptom of some kind, just a personal idiosyncrasy.
What does concern me is that, for me, it finishes with a protracted violent tremor which is almost certainly a symptom of things to come.
I started using a CPAP machine on 12/8/21 and while I am sleeping much better I've noticed within the last few weeks or so that I'm experiencing shortness of breath, rapid weight gain and swelling around my lower legs and ankles. I used to get up between 2 and 5 or more times a night before using the machine and now it's only once on most nights. I've had some cardio issues in the past and I've scheduled an appointment with my doctor for tomorrow.
I’ve been using my machine for over 4 years and I’ve noticed the same thing. I can gain 6lbs overnight when using the machine and it’s all around my ankles, don’t get up during the night which can be a good thing, but I retain all the fluids. I have shortness of breath too which I think is connected. My lungs feel tired in the morning and it’s harder to do stairs. My sleep doctor says he knows everything to know about about sleep apnea and the machine and he’s never heard of this. Has no intention of looking either…
If you use the humidifier there is no doubt it consumes a significant amount of water during the night. I would expect however that the large majority of it is exhaled back into the room. It seems to me that it is more likely that a medical condition or medication could be causing fluid retention. My mother had real problems using Amlodipine for blood pressure reduction. Diuretics like indapamide can reduce fluid retention. If on blood pressure meds or other meds it is best to discuss this with your doctor. See this site at the link below for 7 drugs that may cause edema.
https://www.goodrx.com/drugs/side-effects/these-7-medications-can-cause-puffy-legs-and-ankles
It is too easy to dismiss what we can't see or don't understand.
The things I don't understand are multiplying exponentially but I do believe, from past observations, that everything is connected.
CPAP is not a simple, innocuous process.
It has profound effects in almost every aspect of our lives.
It may be tenuous or indirect but there must be a connection.
It's unlikely that I would 'consume' more than a small glass of water per night via the humidifier, allowing for wastage, and in and of itself that would not make much difference, unless it is absorbed by a different pathway (via the lungs) or somehow triggers the body to change it's processes.
Using CPAP, especially a full face mask, does alter how we sleep. I rarely slept on my back prior to CPAP. Changing sleep position could have an effect on metabolic processes especially for those of us with fitness or weight issues.
Various people express the view that CPAP reduces their nocturnal visits to the toilet. Could it be that prior to CPAP the Apnea was disturbing their sleep and during those disturbances they were more aware of bodily needs, and so voided surplus water more frequently, which enabled their bodies to process fluids more effectively? Could the issue be that CPAP, by preventing the disruptions of Apnea, can effectively facilitate overnight fluid retention?
Regardless of seeming testimonials and collective theories, serious disorders have been associate with fluid retention and, as recommended by others, the first step should always be to seek professional medical advice.
"Could it be that prior to CPAP the Apnea was disturbing their sleep and during those disturbances they were more aware of bodily needs, and so voided surplus water more frequently"
I think that may be a very good explanation of why people get up less frequently during the night on CPAP. I am not sure that it follows that fluid is retained. Not a doctor, but it seems to me that electrolyte imbalance is at the root of edema, and possibly aggravated by poor blood circulation. If having issues I think it is important to get the electrolyte levels checked; sodium, potassium...
While I expect that’s probably correct for some people, in my case over the last three years in particular I think I’ve had about every test a doctor can come up with. Everything comes back fine. No heart, lung, kidney or bloodwork issues. I’ve basically been left to figure it out myself. At least now I know there are others with the same complaints.
I am sure for some people it could be that they sleep now, where prior to using the machine they did not sleep well, woke and used the bathroom. But that is not my case, I have another issue which make me get very little sleep, the huge difference for me using the machine is that I can now fall asleep and not keep what I call air locking or at least I rest. From night 1 of using the machine I have never gotten up to go to the bathroom, (2.5 years). But no one can explain where the fluid goes now, even in the morning after not going all night there is no urgency as there is still not that much to pee out. Plus I tend to drink a lot of fluids at night and my humidifier is also adding some fluid to the mix. I take two furosemide fluid pills every morning and then boy I use the bathroom every 10 mins. I can lose 4 - 6 lbs. in 5 hours running to the bathroom. I was sent to every specialist under the sun it seems, twice and they all say the same thing, you are fine, well no I can't breathe if I do anything, just walking, stairs are now a killer and I avoid as much as possible. There has to be a correlation and it really pisses me off that the docs say this could not happen, there are too many of us.
I started Resmed airsense 10 cpap with the nasal pillow and within a few days my legs swelled up like a balloon. I went to my pcp and he ran me through every dr and test for months. I gained 40 pounds in 5 weeks and nothing had changed except the cpap. Diet, activity everything the same. After 7 months of cardiologist, endocrine, neurologist, gastric dr appointments my pcp’s parting words were stop eating more than you use. He did put me on lasix and I could tale it and not pee for 6 hours, swelling never went down ect. That was a year ago and I am still swollen. I went to a naturopath dr who tested for food allergies and sensitivities. He put me on an elimination diet which was basically vegan. No dairy, gluten, tomatoes, eggs, etc. for 2 weeks I lost nothing and actually gained 2 pounds. Then I came across a Mayo clinic discussion board about silicone allergies. A light bulb went off since my grandpa had a latex allergy. I encourage you to look up silicone allergy also. Many of the same issues…..back to the diet, 2 weeks no loss. I decided to cover all the silicone. Nothing will stick to it. I tried liquid bandage and different covering items and nothing worked. Even tried shrink wrapping paper. I finally used medical first aid tape and was able to get it to stick to itself and cover the silicone and at the same time seal to my nose. I just had to cut out the air holes. I lost 18 pounds that week! The swelling was gone! The next week I slept without it a few days but the wife didn’t get any sleep so I decided to try the regular nasal pillow and gained 10 pounds. I am now back to taping it. I will see how I do now. I believe it is a mix between an allergy to the plastics and possibly a change caused by the cpap with venous output due to pressure against the heart, but still working on figuring it out because dr’s don’t seem to be interested in finding out. Here is a couple places to look for symptoms.
https://www.caepv.org/can-you-be-allergic-to-silicone-implants/
https://www.thehealthboard.com/what-are-the-signs-of-an-allergic-reaction-to-silicone.htm
It has been 5 years since you posted this, I hope you have answers and that you might update us all as to what you found out. But you are NOT alone.
I had NO water retention before I used my apnea machine, didn't notice it right away, but after several months the tech brought me a humidifier tank and eventually a heated. hose. Then I started noticing during the winter that my socks were leaving a lot of indents on my legs...........still didn't think about it too much, then one day I checked my blood pressure and it was wicked high. Doctor put me on fluid pills, blood pressure pills etc. BUT no one could tell me why this was happening. I got sent to heart, lung, kidney docs - tons and tons of tests, had my arteries looked at ultrasound of kidneys, I lived at testing places and seeing docs who all said you are fine - you are good. Well, NO I was not good, I could not breathe, I huffed and puffed doing anything. From the very first night I used my machine I have never gotten up to use the bathroom.
Nope it is not because I am peacefully sleeping the night away, I still only get 0 - 3/4 hours a night if I am lucky and when I get up in the morning, I do not need to make a beeline for the toilet, I do not pee out that much at all - so where is all the fluid I used to pee out going? Well it appears to be going to my swollen face, eyes sometimes swollen shut and to my legs.
So I finally started piecing the puzzle together that everything changed when I started using the machine. - of course when I mentioned this to my doc, the lung doc, the heart doc, yesterday another lung doc - they all say it is impossible, as does some tech on here - well really how impossible when so many of us are having the same problem.
I found out on line how to turn down the pressure of my machine, it was on 13 (I live in France so have no idea if the numbers are the same or not) I moved down to 10, then went down by .2 thru the 9's and am now at 8.8, I also lowered the humidity, switched back since it is warm now to the non-heated hose and I have gotten a bit better. I also do not know what else causes an "episode" to show up on your reports, if removing the mask does it, if putting the mask under my chin so I can drink some water? If adjusting? But no water what my episodes are generally all well past 1.0 - usually .5 - .8 so I think that must be ok?
I have some other health issues, I read if your Albunium is low it can cause leaking of the capillaries, mine was a bit low, but not enough to cause all this fluid, but what if you add air pressure to the mix, might you then get more leaking? The fluid from the water tank has to go somewhere - right?
So the doc yesterday also seems very skeptical of my theory, but how can things be one way one day and completely changed the next? She is prescribing a different machine for me - so am hoping it will help.
I also just found out I am histamine sensitive, it is amazing how many foods contain histamine, and this too causes fluid retention along with a whole other slew of problems.
I had instant and severe leg edema from starting bipap. my pressure setting is 22. Of course the sleep doctor laughed at me and told me that theres no way for the air to get in any organs or cause this, but I told her I had proof that it can, and here it is. First off if the air cannot go any farther than the lungs then how do you explain gas coming out the opposite end of your body. just as air can enter your colon some of it also comes out as burbs. I also explained to the doctor how some peoples kidneys have chronic blood in them because they are more pourus than others. so yeah between kidneys, colons, stomachs and lungs; being pressurized to 22h20cm then I believe fluid can be pushed into your blood or legs. The human body was not designed to be pressurized to 22h20cm thousands of times a night. and no, after cardiogram and perfect blood pressure I don't believe that I developed heart failure the same night I started Bipap. I now wear diabetic socks to try to keep the swelling manageable and had to move up two sizes in work boots. but we are the ones laughing at the doctors for their ignorance. I think i will just laugh myself to the grave because theirs no going back to not being on bipap.
It would seem unlikely that the absolute pressure alone would be a cause. Compared to Denver the pressure at sea level is about 175 cm of water higher. That is a difference many times higher than the 20-25 cm pressure used by a CPAP or BiPAP. It is true that these devices increase pressure relative to the rest of the body though.
iam talking about blowing up your body like a ballon with no way for the air to escape for 8hrs. Using bipap in alabama's atmosphere would mean pressure from the inside to the outside. Maybe in denver the bipap would suck all the guts out of me because it would be a vacuum compared to aptmosphere.
