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How do I get doctors to take me seriously?

Posted by Laney @spongebob, 1 day ago

Im 14 years old, so a lot of the time my symptoms are downplayed by doctors. I’ve been doing my own research and my lead suspicion is that I have pots. My leading symptoms are intolerance to physical activity, tachycardia almost every second of the day, when I’m sitting and stand up, heart rate heightens 30 or more bpm. Also chronic fatigue, shaking, lightheaded whenever I get up etc. I walked down a flight of stairs recently and my heart rate was 150. Anyways, went to a cardiologist. He said that “I need to work out more” and he laughed.. I’ve been feeling this way for my entire life and I thought it was normal. I cant breathe when I walk, my calves burn up, like bad. I want doctors to believe me, I’m listening to my body.

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dlydailyhope | @dlydailyhope | 1 day ago

@spongebob
My son is 15 and has your same symptoms. He has ADHD, anxiety, a heart defect, and had Covid 2 times. Ever since having Covid and going through puberty with hormone changes, he has been having increased symptoms. He is tall for his age (6 feet tall and still growing).

He is on ADHD medication which can cause some of his symptoms (including red/purple skin color changes tied to Reynaud’s and blood pressure changes). His cardiologist also suggested getting more exercise which he needs to do (he is slim/158 pounds) but doesn’t play sports but plays video games and on his phone too much. Exercise can help his heart and lungs get stronger, help him sleep, reduce anxiety, etc.

His cardiologist suggested he get up more slowly from seated positions, drink at least 50% of his body weight with electrolytes added (like LMNT brand), reduce video games/screen time, get good sleep, etc. His neurologist suggested he take magnesium and omega 3 supplements for his migraines and take Tylenol or Motrin at the first sign of his aura in his eyes before migraine pain hits. This has all helped him.

He also takes a multivitamin. Have you had your bloodwork done to check for vitamin deficiencies or toxicities? Do you take vitamins? You should also have your doctor check your iron and thyroid with full blood panels. Are you vegetarian or vegan? If so, you may have some nutritional deficiency causing some of your symptoms like burning and feeling like you cannot breathe. This could be vitamin b12 deficiency or iron deficiency. Do you get heavy periods and blood loss?

Do you have support from your parents to help you advocate for yourself at doctors’ appointments?

REPLY
1 reply
Laney | @spongebob | 1 day ago
In reply to @dlydailyhope "@spongebob My son is 15 and has your same symptoms. He has ADHD, anxiety, a heart..." + (show)
@dlydailyhope

@spongebob
My son is 15 and has your same symptoms. He has ADHD, anxiety, a heart defect, and had Covid 2 times. Ever since having Covid and going through puberty with hormone changes, he has been having increased symptoms. He is tall for his age (6 feet tall and still growing).

He is on ADHD medication which can cause some of his symptoms (including red/purple skin color changes tied to Reynaud’s and blood pressure changes). His cardiologist also suggested getting more exercise which he needs to do (he is slim/158 pounds) but doesn’t play sports but plays video games and on his phone too much. Exercise can help his heart and lungs get stronger, help him sleep, reduce anxiety, etc.

His cardiologist suggested he get up more slowly from seated positions, drink at least 50% of his body weight with electrolytes added (like LMNT brand), reduce video games/screen time, get good sleep, etc. His neurologist suggested he take magnesium and omega 3 supplements for his migraines and take Tylenol or Motrin at the first sign of his aura in his eyes before migraine pain hits. This has all helped him.

He also takes a multivitamin. Have you had your bloodwork done to check for vitamin deficiencies or toxicities? Do you take vitamins? You should also have your doctor check your iron and thyroid with full blood panels. Are you vegetarian or vegan? If so, you may have some nutritional deficiency causing some of your symptoms like burning and feeling like you cannot breathe. This could be vitamin b12 deficiency or iron deficiency. Do you get heavy periods and blood loss?

Do you have support from your parents to help you advocate for yourself at doctors’ appointments?

Jump to this post

Hi! I appreciate your feedback very much 🙂 I have had bloodwork for those and it’s seemingly normal from what I remember. My periods usually aren’t very heavy either. Since my whole life I’ve felt this way and now it’s increasingly getting a bit worse, I don’t really know if my period would help explain☹️ I also take vitamins and have neutralized my iron levels. I hope your son is doing well! And I do have support from my parents to help advocate 🙂 thank you for your concerns and advice ❤️

REPLY
1 reply
dlydailyhope | @dlydailyhope | 1 day ago
In reply to @spongebob "Hi! I appreciate your feedback very much :) I have had bloodwork for those and it’s..." + (show)
@spongebob

Hi! I appreciate your feedback very much 🙂 I have had bloodwork for those and it’s seemingly normal from what I remember. My periods usually aren’t very heavy either. Since my whole life I’ve felt this way and now it’s increasingly getting a bit worse, I don’t really know if my period would help explain☹️ I also take vitamins and have neutralized my iron levels. I hope your son is doing well! And I do have support from my parents to help advocate 🙂 thank you for your concerns and advice ❤️

Jump to this post

@spongebob
I’m glad you have support from your parents. 🙂

If you haven’t already, you may want to see a cardiologist, neurologist and pulmonologist to do some testing to see what may be behind your lifelong symptoms (not sure which specialists you have already seen). You may also want to see an endocrinologist to check your hormones.

Don’t let doctors dismiss your symptoms, especially as a young female. Women tend to get dismissed and discriminated against due to bias in healthcare and told it’s “all in their head” when there are real physical symptoms. Make sure to only work with doctors who really listen to your symptoms and concerns that are affecting your quality of life.

I had tingling/pins and needles and burning in my legs with exercise when I was a teenager so I can relate. I have also had many of your symptoms. You may want to see a vascular specialist to do an ankle brachial test and neurologist to check blood flow in legs/calves/feet and nerve conduction. A neurologist can do an EMG/nerve conduction study and skin punch biopsy for small fiber neuropathy (causes burning/tingling/pins and needles in legs/feet). Have you had your glucose levels checked for diabetes (type 1 or 2)?
Having a counselor to help you work through your worries about your health can help. I have a counselor for my son to help him cope and manage his anxiety and panic attacks when he starts getting heart pounding and palpitations/blood pressure changes/lightheaded/dizzy, etc. It happens when he is at school when he starts to worry about his heart and passing out. He uses breathing techniques and visualization to help him calm down and shift his focus.

REPLY
lemnos | @lemnos | 22 hours ago

I’m so sorry you are feeling all this and doctors not taking you serious. My experience with strange symptoms were all a result of Lymes disease. You may want to visit and infectious disease doctor as well who has experience with Lymes aka the great imitator of so many health issues. They not only test for Lymes but do much more. Look up a Lymes doctor reputable from many Lymes associations . It saved my life . Doesn’t hurt to try ! Best of luck and be persistent don’t take give up I need answers !!! 🙏

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