#postural orthostatic tachycardia syndrome

Hey everyone! I have a question for you all.

For starters, I’ve been having issues with my heart rate for over a year now. In the past, I’ve had problems with pericardial effusion and pleurisy a few times. My heart has almost failed twice within the past two years. I can’t remember exactly when, but I’ll say around…April of 2021? Is when my heart rate issues became worse. My resting heart rate is 76 - 88; usually, this is when I’m lying down or sitting for more than 20 minutes. When I sit up completely, my heart rate will go to 110 - 125 or 136. When I stand, it goes to the 140s or 160s. After showering, my heart rate hits 180 - 191. So far, the highest heart rate I’ve had is 198. My symptoms for the past few months has been stomach pain, brain fog, nausea, vomiting, headaches/migraines, dizziness, lightheadedness, random blurry vision that’ll last for up to 10 - 20 minutes, chest pain, shortness of breath, skin sensitivity, painful red patches on arms, leg swelling, painful/uncomfortable bloating, weakness, fatigue, a few fainting spells, and much more but I can’t remember them all at the moment. My current diagnoses are Lupus (SLE), Rheumatoid Arthritis, TMJ, and Raynaud’s syndrome.

Is anyone going through this or has gone through this? If so, what tests were run or recommended? Did you get a diagnosis?

I really need to know. I’ve been dealing with this for so long now. It’s interfering with my day-to-day life and daily activities. I can’t even talk or laugh without my heart rate going up to 126. The lightheadedness and dizzy spells are happening daily, and I’m afraid that I’ll pass out. The stomach issues I’ve been having have made it difficult and painful to eat and drink. It feels like my stomach is on fire 24/7 and being ripped open every once in a while. My doctors think I could have another possible autoimmune disease, either fibromyalgia or a connective tissue disorder (I dislocate almost daily). I’m not trying to self-diagnose myself, but I’ve been wondering if POTS could be another possible diagnosis? From what I’ve been able to research, the symptoms I’ve been experiencing are pretty similar, but I know Lupus can be the cause behind a lot as well. I also know that Lupus can be the cause of POTS. I just want to find out as much as I can to bring some things up to my doctors since they’re just as confused as I am, haha. I’m tired of dealing with this and need relief.

My therapist told me recently that she thinks being healthy is a privilege. She said she doesn’t have to worry about whether or not a task will use up all of her energy before she does it, and she acknowledged how hard it is to plan your life around fatigue. Hearing that from her was so validating. 

I’ve had bad experiences with therapists before and thought I would never find one who understood chronic illness, but they’re out there. If you think having a therapist will improve your quality of life, keep searching for the right one. 

It’s more than ok to switch doctors if you feel like the care you’re getting isn’t adequate. It’s not unusual for chronically ill patients to see a dozen or more doctors over several years before they find one who can properly diagnose and treat them. Don’t let anybody make you feel like a “doctor shopper” or a difficult patient just because you want good medical care - after all, we wouldn’t have to see so many doctors if more of them did their job well.

Back when I was in school, a teacher who knew I wanted to be a writer told me that my chronic illness would make me a wiser, better writer. I said something polite in response, but now I would probably tell her this:

I would rather be well and have absolutely nothing to write about. Being sick sucks. Illness has no perks, benefits, or silver linings that I wouldn’t trade for good health. 

Our healthcare system is too complicated, and that negatively affects chronically ill patients. 

There are too many different health insurance plans to count on one hand: Medicaid, Medicare, HMO, PPO, EPO, POS, HDHP. It’s hard for patients to figure out what all these different policies actually cover. 

Insurance companies may require patients to jump through hoops before they’ll cover more expensive treatments. Patients have to try multiple medications and undergo less expensive (but less accurate) medical tests before insurance companies will cover the higher cost therapies and tests their doctors want to prescribe. Sometimes, insurance companies will even try to deny coverage for services they’re contractually obligated to cover. Patients with chronic, complex illnesses often have to fight and appeal insurance companies’ decisions, and may even have to work with patient advocates to get proper treatment. This process eats up a lot of energy and time that chronically ill patients don’t have. 

Because of how complicated it is, our healthcare system has higher administrative costs than healthcare systems in other developed nations, leading to higher costs for patients. This hits people like me with chronic illnesses particularly hard. 

Even if doctors efficiently diagnosed and treated chronic illnesses (and studies have shown time and time again that they don’t), navigating the healthcare system would still take up a considerable amount of a chronically ill person’s time and energy. 

Seeking out a diagnosis and treatment for a chronic illness shouldn’t take years and shouldn’t feel like a part time job. Something needs to change. 

I don’t think disabled people should lose their benefits when they get married. 

Adults who became disabled before age 22 risk losing their benefits when they get married. Any benefits they receive through a parent’s work record are discontinued, and if their spouse makes too much money, they can’t receive SSI either. All disabled people on SSI, regardless of when they became disabled, risk losing their benefits by getting married. The only people who are guaranteed to keep their benefits are those who worked long enough to receive SSDI through their own work record. 

Marriage is an important religious and social milestone for many people, and it confers important legal protections upon couples. I think that all disabled people should be able to get married without losing their only source of income and their financial independence. 

Don’t beat yourself up if you’re chronically ill and can’t exercise as frequently as you’d like to. 

Exercise is often recommended as a treatment for chronic fatigue and pain, but those symptoms make it difficult to exercise. A lot of people with chronic pain and fatigue, myself included, experience an increase in symptoms during and after physical activity. It can be hard to find the time for exercise if you know you’ll need a few hours to recover afterwards, and it’s difficult to motivate yourself to do something you know will leave you in even more pain. 

Doctors and mostly healthy people often don’t understand these challenges, but don’t let anyone make you feel guilty about how much you do or don’t exercise. Try your best and don’t stress. 

Don’t feel pressured to spend money on alternative or experimental treatments for your chronic illness if you can’t afford to or don’t want to. 

When all of your family and friends are telling you to try probiotics, yoga, special diets and lots of other treatments not covered by insurance, it’s easy to feel pressure to try them. Our health obsessed society subtly sends us the message that we don’t really want to get better if we’re not doing everything we conceivably can to improve our health, like trying every alternative treatment that holds the elusive promise of a cure. 

But you don’t have to spend money on supplements and acupuncture unless you want to and believe it will help you. Ignoring the magazine headlines about the healing powers of turmeric and only following your doctor’s advice is more than ok. Don’t let our society or anyone in your life make you feel guilty about the treatment decisions that you make.

Opening up to other people about your chronic illness is challenging because you never know what response you’re going to get. 

Some people respond with skepticism and believe you’re being overdramatic when you talk about how severe your illnesses and symptoms are. Most people want to understand and mean well, but simply don’t know how to respond to illness. People often make unhelpful suggestions like “think positively” or “try probiotics” when what we’re looking for is some validation and emotional support. “Sorry, that sounds really hard” is a much better reaction than “you should try yoga,” but we hear the latter more often. 

Because dealing with chronic illness is so challenging, we need even more emotional support than the average person. Getting that from friends, relatives, and even mental health professionals is hard because so few people truly understand chronic illness. Oftentimes, our need for emotional support and social connection goes unmet, which adds to the already heavy burden of chronic illness. 

I wish healthy people understood that getting a diagnosis ≠ getting an effective treatment. 

There are so many chronic illnesses for which there aren’t very effective medications or therapies. Even if your chronic illness has a few good treatments available, they might not work for you, or they might be out of your reach because your doctor won’t prescribe them or your insurance won’t cover them. 

If you do find a medication or treatment that works for you, it might only alleviate some of your symptoms and restore part of your function. It might come with unpleasant side effects that interfere with your life in new ways. 

Chronic illnesses are complex, and treating one is never as simple as getting a diagnosis and being prescribed a pill that fixes everything (or even helps). 

Chronically ill young adult problems #10

Choosing a career path is a lot more complicated when you’re chronically ill. You have to consider your symptoms and physical limitations when choosing a job or major as well as your passions and interests. Some jobs may be too physically demanding for you, and some courses of study may be too mentally draining. As much as you don’t want your chronic illness to hold you back, you have to be realistic about what you can and can’t do for the sake of your health. 

One of my family members told me the other day that the acute symptoms she was experiencing from a cold were worse than my symptoms because I’m “used to mine.” 

Unfortunately, this is a common misconception. A lot of people don’t realize that we never fully get used to the pain, fatigue, and other symptoms that our chronic illnesses cause. No matter how well we learn to cope, our symptoms still affect us on a physical and emotional level. 

You know you have a chronic illness when… you have one or more doctor’s appointments every single week. 

Asking kids “what do you want to be when you grow up” is damaging, especially if they’re disabled. I feel like I’ve lost a part of my identity because my disability has prevented me from working. If I hadn’t been conditioned as a child to believe that work is the most important part of people’s lives and personalities, I wouldn’t feel so lost and incomplete as a disabled adult. 

Health insurance companies shouldn’t be able to pick and choose which treatments they’ll cover. I just got diagnosed with a condition (Small Fiber Polyneuropathy) that can be effectively treated or even cured with IVIG. But because IVIG is expensive and my doctor has a hard time getting insurance companies to cover it, he’s putting me on other medications that are much less effective. Health insurance companies shouldn’t be allowed to prevent doctors from properly treating their patients all in the name of profit. 

You know you have a chronic illness when… your friends and family turn to you for health advice. 

You know you have a chronic illness when… your browser history is mostly medical journals, patient forums, and chronic illness blogs. 

One of the worst things about chronic illness is how it changes your relationships. 

Because you’re so tired, it’s hard to regulate your emotions. You might snap at your loved ones, or lean on them for emotional support too heavily. 

You might worry about asking your loved ones for too much help. Even if you have very supportive family and friends, internalized ableism can make you feel that you’re a burden on them.  

Worst of all, chronic illness can cause the people who don’t understand it to say very hurtful things to you or even walk out of your life entirely.

It’s extremely hard to cope with the changes that chronic illness brings to your body while coping with the changes it brings to your relationships and your life. 

I have POTS. Usually I can feel myself about to faint and sit down so I don’t lose consciousness. Well today It came out of nowhere and I fainted. Luckily my bf caught me and I went down easy. I came to with my dog jumping on me.

He likely just thought I was playing, but he did bring me back quickly.

I was exhausted after and took a big nap and he slept right at my side (apologies for the unflattering pic). So happy this boy came into my life.

I don’t need for everything to be perfect
I just need to feel well again

#chronicillness