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I have a form of autoimmune hemolytic anemia, primary cold agglutinin disease (CAD), that has many symptoms that affect my quality of life. There are 2 symptoms I have never been able to shake in almost 2 years since I was diagnosed. I am speaking of sleep disturbances and night sweats/hot flashes.

We all need a good night’s sleep every night to stay healthy, both physically and mentally. But that has become increasingly difficult for me. I was diagnosed with CAD at age 48 and many of my symptoms I have attributed to age. One of those issues is poor sleep. I try to create an environment that is conducive to healthy sleeping patterns but to no avail. It is not just about falling asleep but staying asleep. I wake up all night long; I am either too hot or too cold. And, of course, there is the nightly trip to the bathroom. It is a battle between blankets on and blankets off.

Millions of people suffer from sleep issues mainly because it is hard to turn your mind off and as you enter middle age you need to get up and go to the bathroom more often. Some may be age-related but what about night sweats? Most women my age are going through some stage of menopause.  Again, these episodes of hot flashes can be related to that, however, it does not explain how male CAD patients have the same symptoms.

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I found an article that discusses autoimmune diseases and the common symptoms they share. There are many autoimmune diseases that have symptoms such as night sweats, fever, and hot flashes. It goes on to say that night sweats are often a sign of an underlying infection. I know that it is common with leukemia, and it happens to be one of the secondary diseases associated with CAD.

Most of us patients have had all these tests done when diagnosed with CAD to rule out these diseases. So why the night sweats then? I have always figured that my internal thermostat is just out of whack, hence the hot and cold swings.

Night sweats and hot flashes make it so hard to sleep. In the past couple of years, I have had a handful of a full night’s rest; in fact, 2 of those were recent. I was shocked when I woke up. I could not believe I had slept through the night. It is summer and although I am still hemolyzing, almost all my symptoms have subsided but never the sleeplessness and sweats until recently.

What I found is when we get sick our immune defenses seek out the bacteria or virus to eliminate the threat. I always thought that a fever was the first telltale sign. However, I do not have fevers, just the sweats. So, is it that my internal thermostat is off or that my immune system is in production overload seeking out what it believes to be a virus? Since the two are similar and this action would normally cause a fever and/or night sweats, it makes sense that this is the cause of what we CADs are experiencing.

I did find other CAD patients that have the exact same experiences that I have. Some of these patients said that after having treatments the sweats went away. This leaves me to believe that they are more aligned with CAD than with age.

It is disheartening when you tell the doctor that you are having sleep issues and he brushes it off as stress. Or you tell them about hot flashes and night sweats, and they tell you it must be menopause. I have learned to not assume it’s age that is driving these symptoms.

It is just as important when something new presents itself that you get it checked out. If you feel that you are not heard, find a different doctor, be your own advocate, only you know what you feel. The worst thing that will happen is you got a second opinion.