Dealing with one chronic condition by itself is a feat of its own. Unfortunately many of those who are chronically ill have dealt or will deal with another sickness or condition that will flare up their current condition or may have even given rise to it. For some, experiencing lengthened symptoms of a virus or infection will cause them to develop POTS. As for those who already have POTS, experiencing a virus or infection typically flares up their POTS symptoms. This flare can be a significant bump in their healing journey or it may just be pretty awful for a week or so. Either way, getting a common virus with a chronic illness is a whole different ball game. In this post I am discussing other chronic illnesses that may present alongside POTS and how they interfere, as well as non-chronic illnesses that everyday people catch and how these interfere with POTS.
I briefly touched on the possible comorbid conditions that POTS patients may have alongside the condition which may or may not give rise to the POTS itself under the “subtypes” section of the following post: https://puttinganendtopotsprogression.com/my-full-story-defining-pots/. To my knowledge I do not have any comorbid chronic conditions, however some others with POTS that I have encountered do have one or more conditions alongside their POTS which greatly influences the prognosis and severity of it. In some people, POTS is a secondary condition to another comorbid condition. As listed in the previous post, Ehlers-Danlos syndrome, Mast Cell Activation Syndrome, Lyme disease, are all examples of chronic conditions that may be present or underlying prior to the formation of POTS. Some others may include lupus, fibromyalgia, Crohns disease/other gastrointestinal conditions, and endometriosis. Some may have multiple of these conditions all together. This list is not conclusive though, as other neurological disorders may be present before as well. Like POTS, gastrointestinal conditions may be secondary to genetic chronic conditions like EDS. POTS hasn’t necessarily been shown to lead to the formation of other chronic illnesses. Chronic fatigue syndrome may arise alongside it but it may be difficult to determine it as a secondary condition since fatigue is a symptom of POTS itself. For some though, fatigue may be their greatest symptom and it may exceed the severity that is typically seen with POTS alone.
POTS COMORBIDITIES
Here I am going to give a brief rundown on some of these conditions based on what I have researched. Because I do not have any of these conditions, my descriptions will be limited, but it may be helpful if you believe you may have these conditions so you can pursue a diagnosis and understand how it may be influencing your POTS.
EDS
EDS or Ehlers Danlos Syndrome/s are a grouping of 13 genetic disorders that affect connective tissues in all areas of the body including major organs like the heart and reproductive organs in women. The top three most common types of EDS are hyper-mobile EDS, classical EDS, and vascular EDS. EDS as a whole is considered rare, however its prevalence may be underestimated as there are many cases that go un-diagnosed as it is somewhat of an invisible illness like POTS and is highly prevalent in women who are also more likely to experience a large variety of symptoms that puzzle doctors. Hyper-mobile EDS is the most common form and according to the Mayo Clinic “in some reports, over 90% of patients with hEDS are females” (Knight, 2024). The Ehlers Danlos Society provides the most recent diagnostic criteria for each type of EDS. hEDS is diagnosed using three criteria, the first including a score on the Beighton scale. Here are signs and symptoms of hEDS according to the Ehlers Danlos Society:
- Joint hypermobility
- Joint instability
- Chronic pain
- Mild skin hyperextensibility
- Abnormal scarring
Vascular EDS on the other hand can be a life threatening condition which is typically diagnosed through genetic testing once it causes severe complications or even death. It can be diagnosed earlier however, and with heavy precaution can allow one to live a longer life. Here are the signs and symptoms of vEDS according to the Ehlers Danlos Society:
• Easy, unusual, and/or unexplained bruising, especially bruises unrelated to injury or in unusual places such as the cheeks or back
• Arterial aneurysm, dissection, and rupture, particularly before age 40
• Carotid-cavernous sinus fistula formation without trauma
• Bowel perforation, most commonly in the sigmoid colon
• Spontaneous pneumothorax (abnormal collection of gas around lungs causing collapse)
• Uterine rupture during the third trimester of pregnancy
• Characteristic facial features, including prominent eyes, narrow nose, thin lips, and attached or absent earlobes
Classical EDS is also diagnosed with a series of criterion and includes a score on the Beighton scale. Classical EDS is similar to hEDS but does have some key distinctions symptom wise. All types of EDS have their own distinct genetic causes. Here are the signs and symptoms of cEDS according to the Ehlers Danlos Society:
- Skin hyperextensibility (stretchy skin)
- Skin fragility
- Atrophic scarring
- Poor wound healing
- Easy bruising
- Joint hypermobility
- Joint instability
- Pain
- Unusual velvety or doughy skin texture
Diagnosing any type of EDS also requires genetic testing and a physical examination and each type can vary slightly from the diagnostic criteria. Similarly to POTS, the severity of EDS can be a spectrum and it may cause other symptoms which are not commonly listed. EDS may be underlying for some time with only a select few symptoms presenting and some symptoms may come and go making it more difficult to diagnose. According to the Mayo Clinic “Getting a EDS diagnosis can take on average up to 14 years by some estimates-partially because EDS can show up with so many different symptoms.” (Knight, 2024)
MAST CELL ACTIVATION SYNDROME
MCAS is a condition in which “mast cells” or immune blood cells that release mediator chemicals to fight infection and promote healing, are released too frequently. Triggers are viruses/infections, parasites, wounds, and in all people, mast cells are released in some amounts to when the body faces these triggers. For people with MCAS the mast cell response is much stronger causing potentially severe reaction symptoms. Also, people with MCAS have other triggers that those without it wouldn’t be sensitive to. Certain foods and the environment may induce the mast cell response. This is why initially one may believe they are having allergic reactions to many things. In some ways MCAS is producing an allergic reaction as one of the mediator chemicals released is commonly histamines which cause conventional allergy symptoms. However, MCAS is much more complex and severe than allergies. MCAS is a multi-systemic condition where multiple body systems are affected simultaneously, therefore, all patients experience thy syndrome differently. It too, like many chronic conditions, is a spectrum of symptoms of severity making it difficult to diagnose. I am not going to list every symptom from every bodily system, so here is a condensed list of some of the more prominent I’ve gathered from Mastcellaction.org:
- Nasal, respiratory, and skin symptoms which are commonly seen in an allergic reaction- this may include anaphylaxis!
- Cardiovascular symptoms similar to POTS: chest pain, low blood pressure, fast or irregular heartbeat, fainting -may be difficult to know where these symptoms arise from at different times if you have both conditions
- Gastrointestinal symptoms: food intolerance, stomach cramps, rapid gastric emptying, diarrhea, constipation,etc.
- Neurological symptoms
- Musculoskeletal symptoms
- Genital and urinary issues
Fibromyalgia
Fibromyalgia is a chronic pain disorder caused by dysregulation of central nervous system processing and improper signaling of the neurotransmitters that signal pain in the body. There may be some genetic components to fibromyalgia, however the condition is still very under researched. For some, Fibromyalgia slowly develops overtime, but for others it is a secondary condition following trauma, illness, injury, or other drastic changes to the body. It is considered to be one of the most painful disorders you can live with. Unlike a pain disorder caused by actual inflammation and musculoskeletal issues, Fibromyalgia patients will not find any pain relief by targeting their area of pain with antiinflammatories, certain movements, heat or icing. They feel pain because their brain is sending pain signals to random areas which shouldn’t be in pain, at a whim. Because the pain is all neurological, these patients can also experience difficulty receiving a diagnosis, mainly because the source of their pain can’t be seen and may be attributed to a psychological disorder. Fibromyalgia can certainly lead to issues with anxiety and depression because of how debilitating and unpredictable the pain is. According to the National Fibromyalgia Association, the pain can be described as widespread, chronic, and profound; shooting/stabbing, throbbing, and a deep aching sensation can all occur. It can be located in any area of the body and has a range of severity. Some other symptoms associated with the condition are:
- Muscle twitching
- Tingling and numbness
- Fatigue
- Sleep issues – waking in the middle of the night
- headaches/migraines
- Restless leg syndrome
- Impaired memory/concentration
- Tinnitus
- dizziness/vision problems
- Skin sensitivities
- Other neurological symptoms
CATCHING A VIRUS/INFECTION
Becoming even sicker wasn’t something I could fathom after I was first diagnosed with POTS. I was so focused on the new struggles I faced every day that I didn’t consider what it would be like to get sick like everyone else does. I knew that many people developed POTS because of long term viruses like COVID so what would it mean to catch a virus after already developing POTS? This of course sent me down a spiral of researching and reading into the stories of tons of others in the various dysautonomia Facebook groups I am a part of. What I gathered after all of that was that I was doomed. It is really easy to panic when you are newly dealing with something so life changing that you have barely gotten a grip on yet. You just can’t fathom it getting any worse. As I noted at the end of the post mentioned earlier, Facebook groups for POTS can be a very helpful tool but they can also work to your detriment. With a chronic condition its natural to attempt to “write your story” from the beginning. No doctor can tell you exactly how the condition is going to affect your life, all the symptoms you will experience, and how long it is going to last, or even whether it will go into remission. Many, including myself, take to the Facebook groups to try and understand what it may look like for us by reading the stories of others. While it’s good to get a basic understanding of what others deal with so you can relate and feel less alone, there are millions of different POTS stories out there, and so you can not attempt to write your own based off of others. Your experience is based upon your health, age, other potential Comorbidities, How quick you get diagnosed, the treatment you try, and so many other factors.
Was I actually doomed if I got sick? The truth is you won’t know until it happens. I know, that’s exceedingly irritating to hear. It is hard enough to try and predict how you will feel day in and day out with POTS. Now you have to try and prepare for something else. What I do know is that while getting sick may be a setback and may be awful to get through, you will get through it. If you treat the virus/infection in the best manner you can, meaning you get ahead of it right when you feel symptoms coming on: resting, focusing on hydration, electrolytes, compression, taking heart medications at the right time if you take them, asking for medications to treat the virus while being mindful of potential interactions with your current medications, it will, in the long run, essentially be a blip in your healing journey. Of course there is a possibility for lasting complications if you have other illnesses and even with POTS you may be stuck in a flare for a while. However if you continue your POTS treatment and give yourself a lot of extra grace while flaring you can get through it in an easier manner than you likely imagined.
The first virus/infection I experienced after being diagnosed with POTS was COVID and it was actually the first time I had ever gotten COVID (figures). Luckily for me it was a somewhat milder strain. The COVID symptoms themselves were minimal, but yes my POTS was pretty awful. Roughly a month after that I experienced food poisoning and a horrible sinus infection. It was like I was cursed. I felt the world was out to get me. When it came to dealing with each sickness, I had experienced similar symptom severity before so I could do it again, but it would be hard. It would be grueling even. It’s my intention to keep things positive in this blog, but simultaneously, realistic. I am not going to lie about what it feels like to be thrown yet ANOTHER curve ball when you are already fighting so hard to heal. A small cold can feel like your last straw. It may feel easier to give up and give into your condition. To stop searching for treatment, stay in bed where it’s easier to exist. The truth is, the world isn’t quite designed for chronic illness.
Positive Resources to Keep you Going
There may be times, such as getting sick, where you feel you are safe only in your bed at home and can’t muster trying to get back to your old life. Of course this may be necessary for some time, but getting sick on top of having to deal with a chronic condition is one of the things that can keep people down for a long time. With a chronic condition, things tend to pile onto your plate and can push you past your threshold time and time again. This is where it is extremely important to make sure you have positive resources that can keep you going. Making sure you don’t go through the toughest parts alone is a must. There is only so much you can do for yourself and it’s horrible to feel yourself losing control of your body and the circumstances surrounding your life. Having distractions can be very helpful. Here are some that have helped me:
*Considering this the positive/helpful note to end this post*
- People-Your family members, significant others, and friends can be a good distraction. Try not to lose investment in their lives because you are so focused on your own. It can be relieving to hear about other people’s lives even if it’s their own issues. Talk to them about the mental aspect of your illness. Allow them to comfort you in any way they can
- Small POTS friendly activities-this will look different for everyone but find things that aren’t related to screens that will balance your limited lifestyle for some time. Get outside in the sunlight even if you have to lay down and can’t be out for long
- Books-also a nice break from screens(trust me if you thought it was hard not to spend so much time on your phone before you got sick, it will be even harder now. Don’t blame yourself for it, but find another distraction. Doom scrolling may make you feel much worse
- Music-this can really help shift your perspective on life. I feel like music induces hope in a lot of people
- Pets-Very helpful at laying with you when you are lonely and they never care what you look like or expect anything from you. Sometimes you are too sick to want to talk to anyone
- A good and easy show to watch-comfort shows are great. I loved Ted Lasso, but that’s just me personally
- Self care: Care that doesn’t feel like a chore; care that is different from the daily chronic illness necessities. Something that pulls you out of the sickness cycle for a little. It really looks different for everyone but things like skincare, baths with Epsom salt (not too hot of course), breathing exercises, meditation, therapy, and massages can be beneficial. (For me, I have found massages to be VERY helpful. It helps bring my heart rate down and eases many of my symptoms, if only for a little while.)
