Guide to POTS

Hoping this makes a confusing chronic illness diagnosis easier

Peripheral Neuropathy

Disclaimer: I am not a medical professional. I can only speak to my own experience and hope that gives you some insight into what POTS is and how it can affect you or the people around you.

What it feels like: tingling, numbness or sharp pains in random parts of the body, mainly in the legs and stomach.

What Causes It:

Damage to the nerves outside of the brain or spinal cord causes these pains. This could be caused to the blood not flowing properly to the nerves or maybe it’s just a thing that happens with POTS. If POTS is an autonomic disease then the body could be attacking healthy nerves.

Solutions I’ve Found:

Advil or tylenol can help a little but for the most part it just needs to pass. The sharp pains tend to pass quickly and the feeling of “bugs” on your skin will pass when you change something (clothes, shower, etc). Keeping the POTS at bay in general will help all of this so keep up your blood pressure.

You learn to live with the numbness. I have felt like my left side has been numb on the skin level/ deeper in places since I was 16, I can do everything I need to with my feet, arms and legs. There is no difference in my strength on that side than the right but I do find my balance is worse on that side. Do watch out for injuries and cuts of the side you can’t feel. I’ve broken my wrist and not known it for 3 weeks and finally decided to get it checked because it might be a good idea. Cuts are more likely to get infected if you can’t feel them to watch out for that.

Further Reading

“Peripheral neuropathy – Symptoms and causes.” Mayo Clinic, 11 August 2022, https://www.mayoclinic.org/diseases-conditions/peripheral-neuropathy/symptoms-causes/syc-20352061. Accessed 3 April 2023.

“POTS: Causes, Symptoms, Diagnosis & Treatment.” Cleveland Clinic, 9 September 2022, https://my.clevelandclinic.org/health/diseases/16560-postural-orthostatic-tachycardia-syndrome-pots. Accessed 3 April 2023.

“Structural and Functional Small Fiber Abnormalities in the Neuropathic Postural Tachycardia Syndrome.” NCBI, 27 December 2013, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3874039/. Accessed 3 April 2023.

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