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Symptoms Increase At School, Confused


Rah

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Hi everyone. I have POTS and was just diagnosed with JHS. I'm seeing a geneticist in a few months to see if I have EDS. I took last semester off school and just came back about a week ago. I've been advised to do 15 minutes of physical activity, including walking, and go up slowly from there by my specialist but ever since I got back to school my symptoms have skyrocketed. My chest pain, fatigue, migraines, brain fog, dizziness, joint pain, and nausea are a lot worse. My knees buckled in the elevator yesterday and I've had muscle spasms in my legs for five days in a row now. I've also been dizzy enough that I've started falling into walls, which I think is one step away from falling to the ground. I've been doing the absolute minimum at school but am logging physical activity (walking) at an hour a day and am still not accomplishing everything necessary. I've tried to address this with my specialist but am not making any headway with him and am not sure what to do.

I asked if I could have a wheelchair so I wouldn't have to walk to and from classes and he said no because it would contribute to deconditioning. But then how am I supposed to just be doing only fifteen minutes of exercise per day? Is this what is supposed to be happening? I am feeling really confused about exercise and POTS. I'm also feeling like I am attempting an impossible task with no help at all.

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Hi Rah,

I'm a professor on sick leave .. so I'm now familiar with both sides of your dilemma...here are some questions and observations.

1. Have you registered as a student with a disability? This is essential for necessary services as well as to ensure fair treatment. For example, perhaps you can get help going to classes (having someone carry your books etc)....this may preclude need for a wheelchair.

2. Are you taking on too much? I would suggest a very light schedule this semester. It may be too late to arrange this now, but one course and an independent study might be a good option...I always suggest to returning students (including healthy ones) to take only the number of courses in which they can excel.....this will boost your confidence as well as lighten your load.

3. You might be anxious about your return, which exacerbates all symptoms...this will fade as you adjust, a meet your teachers, and discuss your needs and meeting course requirements (see above and below).

4. E-mail and make appointments to see all your professors now. Introduce yourself...no need to state your specific disability...but it is important to explain what your needs are, and to give the heads up about possible situations pertinent to your illness. Let them see you are serious and enthusiastic. Ask about their policies about making up work if necessary....etc. After the arranged first meeting, check in frequently during office hours. Face time is better than email. In this way you are grooming them to support you during the semester and in the future (ie for independent study work, etc.) and affirming you are a serious and responsible student. Any good professor will acknowledge your commitment and will be receptive to your needs..if not, drop them now. (Might be hard with required courses...but you can negotiate in the future).

I realize you have financial commitments, but your school should be receptive to your situation, and I've worked out all sorts of deals with serious students....this is why forming relationships early on is so important.

Feel free to PM me if you like.

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Thanks for replying to me, Sylvie. I have registered as a student with a disability and am a part time student taking three classes (full time at my university would be 5). What I've gotten from the disability center is allowance to record lectures and to be able to take class breaks (to use the restroom or eat/drink, if the professor doesn't allow food or drink in class.) I asked to have not being penalized if I was late to class included in there, since walking to class is difficult for me, but was told I could take care of that by always leaving earlier.

I am considering dropping one of my classes. I have met with all of my teachers to give them my disability letter and they've all been receptive. I don't feel anxious about school in general or my classes. I like being here and am confident in my ability to succeed academically. I also don't know how anxiety would increase joint pain or muscle spasms?

I think what would be most useful for me right now is more communication from my doctor. It doesn't have to be a wheelchair, obviously, but tips on how to reduce symptoms or even a definitive answer on whether I'm doing too much right now.

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Hey Rah, have you tried using compression stockings to see if they are helpful for you at all? Also is your daily walking to classes and physical exertions more than what you were used to back at home? I think the most important thing is that you need to listen to your body, because at least in my case, pushing through just made things much worse; only you know what your body can handle.

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I haven't tried compression stockings. That's a good idea, thanks. What I'm doing at school right now is more than I was doing back at home the last few months. Before my POTS symptoms came back this summer though I was really active physically and was jogging and doing pilates and yoga, so I don't know why my symptoms came back even though I was exercising so much. When I read articles about POTS it seems like exercise is supposed to get rid of POTS.

I think it probably would be best to listen to my body but I really want to be at school and I don't want to go home, have my symptoms not improve, and then be told by my doctor that it's because I'm not exercising enough. I feel like at least if I'm doing too much it won't be my fault if I'm not improving.

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Hi Rah,

It seems like you are doing all the right things in terms of your classes and teachers.

I'm newly diagnosed and still trying to understand the relationship of POTS and exercise...but the recent thread on the "Levine Protocol" here emphasizes the relationship between exercise and POTS symptoms is a highly erratic and individual one. Exercise might ameliorate or exacerbate symptoms...As you can read, even within a carefully controlled study, a relatively small percentage of participants emerged symptom-free...and we don't know for how long they remained so....if only exercise would banish POTS!

I think your own and others' comments here point in the direction you might be taking on too much now....it's great you were able to be so active recently, but as I noted, it's hard to base your current needs on what was tolerable/effective for you even in the recent past. The good news is that positive change is very possible for you.

I loved school, but always found it stressful...and stress can affect everything...it can affect pain and muscles. Unfortunately, the deregulation of our autonomic nervous systems magnifies its effects. Perhaps you can arrange time for a conversation with your doctor to discuss ways to better address your symptoms. You may just be going through a period of adjustment now. None of this your fault...it's just a challenge to sort out what works best as symptoms and circumstances change.

Best,

S

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Rah,

I think statesof had a good suggestion with the compression stockings. Also, you may want to be diligent about measuring how much you are drinking. You probably need to consume more fluids than you were at home since your activity level with walking to classes is an increase. You may also find some sort of light weight collapseable (sp?) foot stool/ottoman to prop your feet up while you are sitting in class. This will give your heart more of a rest in between spurts of walking and help ease your symptoms.

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It is hard to do everything at once. If I had to guess, your increased activity is contributing to the problem. How about skipping exercise for a couple of days to see how you feel? That shouldn't lead to deconditioning and you could see if the exercise/more activity is contributing to your feeling worse? Exercise is shown to help SOME patients, but not all. I would worry more about how you're feeling than trying to satisfy what your doctor is telling you to do. If a doctor is pushy and not listening, then maybe he isn't the right doctor for you.

It might also be helpful to monitor your HR and BP - to see if that is contributing to your symptoms.

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Do you have classes every day? If so, you might not to do exercise on those days because the activity that you are forcing your body to do. You may need to increase water and salt or try G2 on those days to see if it makes a difference. My son was finally able to start an exercise program this last year but when school got started, he had to back off doing exercise every day.

His fatigue levels were high and he was not able to stay focused on school work. His body had to get use to the extra stress of school work and to try to maintain a level of exercise that would benefit him. Before school started , he was use to doing exercise everyday. However, this routin took it's toll pretty quickly and the first week of school was rough. The following week I backed him down to 3 days of exercise. He had to do exercise m-W-F and rest on the weekends for several weeks and then he was finall able to do M and T, rest on Wednesday, and exercise on T and F and no exercise on the weekend. It is important to stay as active as you can but not to over do it. Try to drink 2 liters of fluids every day and more on very warm days. It might help to alternate water and G2. My son always had problems getting in enough salt, so he takes 3 thermo tabs about every 3 hours. If you are burning a lot calories on days you have classes, salty snacks might be helpful. Do try the compression socks or hose. My son likes the compression socks that come almost to his knees.

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Another potsy professor here. I'm glad your professors are being helpful and cooperative. They're supposed to, but you never know.

It is my understanding that exercise is supposed to strengthen the leg muscles so that they can help squeeze blood back up into the body when it is pooling. Also, that it takes time to become effective, and that it should be done while seated, at least at first. I may be wrong about all this. Nevertheless, since you are walking to classes you may want to do recumbent cycling or rowing machine instead of more walking.

Other things I find useful: putting my feet up whenever possible, teaching while seated, compression stockings, Thermotabs and water. If I can't put my feet up on a desk then I cram one foot onto the chair seat with me. Note that these do not fix the problem, but symptoms are not as prominent. And when symptoms are less noticeable they are less distracting (I also have ADHD), so I can be more productive.

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