It started over a year ago. I noticed I was really tired. Not tired like I didn’t get enough sleep but tired like I couldn’t keep my eyes open. I attributed it to the fact that I was diagnosed with Anemia when I was 15. Turns out I am not anemic. I thought all these years that is why I was cold all the time, bruised easy, tired, lethargic, dizzy when I stand up, and so many more things.
Last August I was diagnosed with hypothyroidism and I thought that was the end. I thought OK medicine will help and I will feel better. Only I did not. The next 11 months were spent seeing various doctors of all kinds who had no idea what was wrong with me. My blood pressure is abnormally low and my heart rate abnormally high when I stand. I get dizzy and faint. I pass out. But I look normal. I don’t look sick. What was wrong with this seemingly healthy girl? Blood work? Perfect nothing wrong. Thyroid levels? Perfect now on medicine.
So what was wrong?? That was the million dollar question for months and months. I would cry because I wanted my life to feel normal. I wanted to feel better. There were days I was fine. I would work out, work, run errands, do laundry etc. Then there were days I could barely move. 9 hours of sleep was never enough and I felt useless.
Finally Andrews brother who is a Neurologist told Andrew to look into something called POTS. POTS is Postural Orthostatic Tachycardia Syndrome. Fancy name right? It basically means everything in my body I can’t control is not working right. I can’t control my temp, my heart rate, my blood pressure, temp, my digestive system, the serotonin in my head, everything. What’s crazy about POTS is it’s such a new disease that not that many people have it or well know they have it. 500,000-1 million diagnosed. Not that many.
Once we knew what to look for we found a specialist here in Dallas(fact there are not many specialists for POTS so we got super lucky). The doctor is amazing and he has been such a help to me and made me feel like “No Neely you are not crazy something is for sure wrong with you.”
I don’t want to go on and on about what it means but there is a great video below if you are interested.
The Dr told us after all of the tests(around 24 plus a sleep study) that what he thought was POTS was in fact something called Orthostatic Hypotension. It’s very very very similar. A lot of the same issues etc. My biggest difference was my blood pressure. My heart rate jumps 40 plus bpms when I stand up and my blood pressure plummets. I do not have strong enough leg muscles to make my vessels constrict and have the blood keep flowing throughout my body and into my brain. Basically my body doesn’t like when I stand up and doesn’t quite know what to do. Standing for long periods of time also not really happening for me.
They are both autonomic disorders and have very similar symptoms.
I was also diagnosed with something called EDS or Ehlers-Danlos Syndrome. So basically this is what it means: is an inherited connective tissue disorder with different presentations that have been classified into several primary types. EDS is caused by a defect in the structure, production, or processing of collagen or proteins that interact with collagen, such as mutations in the COL5A or COL3A genes.(This is the collagen of granulation tissue, and is produced quickly by young fibroblasts before the tougher type I collagen is synthesized. Reticular fiber. Also found in artery walls, skin, intestines and the uterus.–COL3A1).
(taken from the internets)
Yeah Im overly flexible and I just thought it was a cool thing I could do. Turns out not so much.
So what does all this mean?
The last 3 weeks I have had 24 medical tests, a sleep study and several meetings with the Doctor. I have more tests this week, lots of blood being drawn and meetings with a nutritionist(I now have to have about 60 grams of protein a day and 10 of salt), a physiologist because I have to have a certain type of workout introduced into what I already do. I also need to see a genetics doctor.
FAQ:
Can you catch POTS/Orthostatic Hypotension? Nope. It is not something you can get from me.
Is it life threatening? Nope it’s life altering. I have to make changes to my day to day life and what I can and can’t do in a given day.
Will it go away? Nope it’s here to stay.
How does my family/Andrew feel about it? They are very supportive and understanding of my limitations and diagnosis. Andrew went to every single doctor appt and test with me and did not leave my side. My parents were of course upset and worried at first but now understand it more.
So what does this mean for me? I have to listen to my body. When I am tired I sleep. When I need to sit down I sit down. I drink a ton of electrolyte water and a ton of water in general. I eat more salty foods to help my blood pressure. I have to alter the way I workout, eat, sleep basically everything. I am also on a new medicine. It’s starting to help a little, it gives me more energy during the day but they started me on a super low dose and will keep increasing it.
Can I work out? Yes if my body is up to it that day. Most days it is. I am very tired after but I can do regular normal 30 year old girl activities. But my workouts will be changing or rather I will be supplementing my current workouts with new types of workouts.
Will it effect me having children? Probably not. One step at a time though. I will have to see a high risk pregnancy doctor when that time comes.
Please feel free to let me know if you have any questions. I am an open book and I am sharing this on my blog not for sympathy but because if you feel like something is just not right with your body. Do not give up till you get answers. I spent over a year dealing with this before I got answers and I am so glad I didn’t just say “oh well” and give up. You know your body better than anyone.
I hope everyone has a fantastic day and please please let me know if you have questions.
So glad they have found answers! How frustrating not to have known for so long! Hope all the new regimens and meds work out quick!
I’m glad to hear that you got some answers! I definitely agree, you know your body better than anyone, good for you for being persistent and pushing to get answers about your health! If you don’t advocate for yourself, who will?
I hope the meds help and that you feel better soon!
Thank you for sharing, Neely. I totally agree with you about not giving up until you have answers and I think this post will encourage others to do the same. You are strong and brave. So happy you have answers!
Hang in there! I’ve dealt with anemia (still do) and it sucks. I can’t imagine taking on something new like POTS. Thinking of you 🙂
Getting concrete answers is always the hard part. Good for you for not giving up and for such a great attitude now that you have your answers.
I’m so glad that you were able to find out what is wrong. I wish you the best in learning to live with it and adapting your lifestyle. You have such a positive attitude and I know that will go a long way!
So glad to hear you have answers. I went through something similar for a long time and just knowing what it really is and learning you aren’t making it up is such a relief!
Ugh. I know the feeling of those symptoms, and not getting a correct diagnosis. I was misdiagnosed for 8 years until I was finally correctly diagnosed with Lyme Disease. I also have POTS b/c of Lyme. Bleh. Not fun. But so glad you finally have answers! And good for you for just listening to your body! One of my best friends has EDS and it’s crazy!
Oh my goodness girl! That’s a lot of tests!! I’m glad you were able to get answers though!
I am really glad you were able to get a diagnosis! I have gone through similar things with my conditions, too–as far as trying to get answers and having doctors dismiss symptoms. Sometimes my symptoms overlap and it’s hard to tell if there might be something else going on.
I was wondering what type of doctor finally diagnosed you with POTS. I have had similar symptoms for months now (I’ve kept a log), but have kept chalking them up to being side effects of medicines, etc (even though my doctors have discontinued medicines that could have caused them). I’ve even gone as far as to buy my own heart rate monitor that I put on my finger and bought a new thermometer because I was sure that my last one didn’t work. I only learned about POTS earlier this week, when I met someone who has it.
Another blogger friend of mine emailed me your post this morning to say that your symptoms sounded a lot like what I’ve been telling her about. Thanks so much for sharing! You are right about how we know our own bodies the best!
I really hope you will find the right combination of treatments and therapies to feel better soon. I know how much chronic pain and fatigue can drain you, especially emotionally.
Props to you for being so open with this! <3 You're in my thoughts!
I am so glad that you were finally able to get answers and work towards maintaining as normal of a life as you can- not like any of us leads a normal life, but you know what I mean 😉 Thank you for sharing your story, I just know it will help someone else out there. Maybe not today, but it will- and it takes a strong person to share with other people!
Neely….we are two peas in a pod!!! I was diagnosed in high school with Orthostatic Hypotension (Neurocardiogenic Syncope if you want the fancy term). I’ve been through the passing out, feeling dizzy, having to have electrolyte drinks on hand, etc. I was fortunate to grow out of it and only have issues every so often now. But I also was (sorta) diagnosed with EDS. The doctor I work for diagnosed me when he heard how I tore my meniscus (getting something out of the dryer) and inquired about a ton of things. I’ve been told my numerous surgeons that I have very lax joints and I’ve always thought the same as you…I was just flexible. Who knew that bending your thumb to touch your forearm isn’t normal?!? I also bruise really easy and have skin issues. I’m very interested in hearing what your docs said about your EDS and how to manage it.
I could have been reading my diary here….. seriously. So tired I don’t even want to chew and eat. Fast heart rate, low blood pressure – all of it. I too recently had my thyroid tested. It’s completely off whack. Taking meds but feel no better. Going to check into this. I don’t know if I missed this in your article but is it hereditary? Just wondered because my mom has the same tendencies. THANK YOU FOR SHARING! Pinning for others! You never know when you are helping others.
PTL for answers!!! I pray that you start to really feel better soon. I pray that you gain some energy and figure out what your new-to-you daily activities look like and that you are at peace with your changes.
So glad you found answers!! I often feel so tired no matter how much sleep I get but just figured that was normal because I was working 3 jobs. Thank you for sharing this with everyone!
Neely thank you for sharing. Your very smart to be an advocate for yourself and pursue the correct treatment. So impressed that Andrew has been by your side during this. He truly is your soul mate. Well done Andrew. Am glad your now getting proper care and the right treatment. Take care of yourself. By sharing you are a inspiration. You may help someone else along your path find their correct diagnosis.
Eek I am so sorry I am just now reading this! I know you have been going through this a while trying to figure out what was wrong and I’m glad that you finally have some answers that will help you take control of your health for good! So sorry you’ve felt so terrible for so long!
You’re a trooper!!!! So glad you have the support of A and your fam!
I’m so glad that you were able to figure it out and begin to work on a plan to manage it. I’m sure knowing what it is helps so much – especially mentally! You’re fortunate to have a partner in Andrew to be your rock!! I wish you all the best and thanks for sharing. You’re right about how important it is to be in tune with your body and be your own advocate when you think something is not right!! xoxo
I’m sorry about all you had to go through but I am glad you have got your answers!
My sister and a cousin both have POTS, so I’m pretty familiar with it. I think my sister has had it for maybe 8 years, and my cousin maybe 6 – they are young, 19 and 24. I am glad you finally got answers! Make sure to keep listening to your body and rest when you need to!!