My Story

Here is my story…

If you just want some quick facts on me, you are on the wrong page! Go to this page instead.

If you met me, you'd probably never guess I am sick. You'd probably never guess that the times you see me are pretty much the only times I am up and about. You'd probably never guess the amount of rest it will take before and after an event for me to be able to go, the amount of medications/supplements it takes to get me through a day, how rarely I can do basic things such as cook for myself, how every moment we are talking, I am focusing part of my attention on keeping my symptoms under control… You'd never guess if I am out and about, I probably have a fever. You get it: a lot of the time, you'd never guess how sick I am.

Let's start at the beginning. I used to be an energetic girl. Even as a child I never watched TV and I was excited to get my first real job at 14. I look back at pictures of myself hiking, learning to surf, four-wheeling, and just living life and wonder what the girl in those pictures would say if I told her that her life as she knew it was about to change forever. I became ill in February of 2008 (my freshman year of college) after a bad bout of mono. I suddenly had a constant low grade fever, poor memory, swollen lymph nodes, and became fatigued very easily. Long story short, I went to almost 20 doctors between 2008 and 2012. Doctors either didn’t believe me, or didn’t know what was wrong. Some suggested it was all in my head, many suggested depression/anxiety, the intelligent ones acknowledged something was going on, but s/he wasn't sure what that something was. Sometimes I wondered if I was crazy and nothing was actually wrong with me. Treatments I tried included anti-depressants, ADHD medication, hormone therapy, a tonsillectomy, hormone therapy, multiple long-term antibiotic treatments, vitamin injections, too many supplements to list, fibromyalgia drugs, steroids, extreme exercise, mild exercise, bed rest, diet modifications… and the list goes on and on.

I tried to live my life to the fullest as a chronically ill college student. My "mystery" illness made any sort of social life pretty difficult, but I did all I could to get as much experience in my field as possible. My dream was to make a difference in the world. I volunteered at a crisis and suicide intervention hotline, interned at a homeless shelter, supported individuals with disabilities, was a teaching assistant, and of course, was a fulltime student. I was on ADHD medication and tons of caffeine to keep me going. Feeling exhausted and flu-ish became normal to me and I considered it my version of healthy.

After graduating college, I scored an amazing job at an agency building a department to support high school students with developmental disabilities and their families. A few months after starting, my health took a sudden turn for the worst. I suddenly realized being flu-ish wasn't my "normal", there was something seriously wrong with me. After about half a year of working, my body would no longer allow me to cover up my symptoms with medication and a smile… it absolutely gave out. I had to give up my job, my apartment, what had become my hometown, and worst of all, my independence.

In 2012, after 4 years of suffering, I finally got diagnosed with a type of dysautonomia called POTS which stands for Postural Orthostatic Tachycardia Syndrome. It was such a relief to know it wasn't all in my head as some doctors had told me. When lying down, my heart beats at about 65 beats a minute but standing, my heart rate jumps to 110-140 beats per minute. This syndrome is a result of a malfunctioning autonomic nervous system making symptom list seems endless. I experience severe fatigue, abdominal pain, dizziness, pre-syncope, nausea, vomiting, orthostatic hypotension, brain fog, joint pain, muscle aches, and all kinds of other symptoms. The most scary symptom is syncope which is a fancy way of saying someone faints. I also dislike pre-syncope which is what occurs right before fainting. It is extremely difficult to live life like this. I don’t even know that most people would call what I am living a life.

I went to Mayo Clinic where my POTS was confirmed, orthostatic hypotension was diagnosed, and the characterization of a hyperadrenergic state with upright posture was identified.  I received a treatment plan in August of 2012. After not seeing any improvement after 6 months of strictly following the exercise plan I was given, the doctors began to suspect something else was going on, but were unsure what. The medications they recommended such as Midodrine and Propranolol have given me some symptomatic relief, but not much. In late July 2013, I started yet another treatment plan involving biofeedback. It helped in many ways and I experienced less syncope, less vomiting, and an ability to improve my circulation through careful breathing. These things were great gains, but not enough to give me anything close the to semblance of a normal life.

In early 2014, I was diagnosed with Ehlers Danlos Syndrome. EDS is a genetic disease which means it is passed down from parent to child; it doesn't just develop like an autoimmune disease might. If a parent has EDS, there is a 50/50 chance any one child she has will have EDS. Gender does not increase or decrease the chances of a child inheriting the disorder, however due to hormonal differences, it seems to cause more issues in females. There are several types of EDS; the type I have is called type 3 or the hypermobility type. There is not any real treatment for this disease since it is genetic, but symptoms, such as pain, can be treated. This diagnosis explained why some treatments that work for many POTS patients do not work for me and I learned EDS pre-disposes patients to POTS. I also learned it is not normal for your joints to painfully slide partially out of place regularly! Who knew?

At the time I am updating this (October 2014), it looks like I am finally on the brink of getting some explanations for the regularly swollen lymph nodes, fevers, and severe fatigue which I had named my mystery disease. All of my mystery symptoms may be caused by an autoimmune disease called Sjogren's Syndrome. It would explain the mystery symptoms, why my case of POTS is so severe, and why my POTS does not improve to a manageable level with treatments such as exercise and beta blockers. No amount of exercise will prevent an autoimmune disease from deciding to continue attacking my nervous system! I am hoping this is the final piece of the puzzle.

All of my diagnoses came too late for me to live the life I had planned. By the time POTS was diagnosed, I had already lost everything, except (Thank God) my family and a few close friends. There is no cure for POTS unless the root cause (an underlying condition) can be found and treated, but medication and exercise among other things are supposed to relieve symptoms. I have two underlying causes; Ehlers Danlos Syndrome and Sjogren's Syndrom. EDS makes POTS worse, but I am hopeful that in my case, EDS alone does not make my case of POTS disabling and treating my autoimmune disease is the answer. At the current moment (October 2014), I am still extremely debilitated and was recently approved for Social Security Disability Insurance payments. I am happy I started working at 14 so I was eligible for it!  I currently am working with some new doctors (immunologist, rheumatologist, neurologist) on treating my autoimmune disease in hopes of finding some relief and getting on with my life.

(It is 2017. While I work on getting this page updated, please see my recent blog posts to read about me receiving IVIG treatments to treat Sjögren's Syndrome, the root cause of my case of dysautonomia. Here is a good post to start with.)

22 thoughts on “My Story

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  1. I can relate to this post so well! My journey to finally getting diagnosed was so similar in almost every way. I’m so glad that you did, eventually, get the right diagnosis, but I’m also sorry it took so long and that you have to live with POTS.
    I’m amazed by how strong you are even after going through so much. You have such a good attitude and spirit.
    Keep on keepin’ on. 🙂
    Hugs xx

    Liked by 1 person

  2. Jackie, Has the exercise helped yet? I keep hoping it would help. I am trying to help a friend of mine. She is 12 and she has pots and papa. I have autoimmune stuff but outgrew the worst of it. I am worried to death about my friend. I want to connect her with positive people who have her disease. I sometimes wonder about the medications. They sure don’t seem to help much to control pots. Thea

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  3. Hi! I just stumbled upon your blog and am reading your story. Thank you for sharing. We have extremely similar stories. I also had a severe case of mono right before I started college and that offset my POTS. I was extremely active as a child and just flexible. I have suffered from migraines since I was a toddler. Conclusion is I have the Hypermobility form of EDS and most likely hyperadrenergic POTS. It took over 10 years to put all of this together just last Fall, when I was extremely sick pregnant with my third child and my issues could no longer be brushed off and ignored. I am super interested in your experience at the Mayo clinic.

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  4. Hi,

    I came to your page today after seeing your post on the wedding website. As I was reading your story the first thing that came to my mind was “this sounds autoimmune-related”. Your story sounds a lot like mine….20 different doctors. Then to finally find that a lot of it was due to a food allergy (gluten) which lead to the discover of an autoimmune condition of the thyroid. I also have a few of the markers for Lupus. Please watch my video if you get a chance. Sjogrens, Lupus, MS, etc are all in the “family” of autoimmune conditions. http://www.youtube.com/watch?v=BKtjw6S-0HA&feature=youtube_gdata_player

    I pray that you continue to get the answers you need. I endured debilitating fatigue and joint aches for years and never knew what caused it. My first start towards healing was to stop eating gluten and nightshades. God bless you.

    Liked by 1 person

  5. Well, that’s a truckload of body troubles you collected there. So sorry for your painful and debilitating symptoms. It sounds like you are now more on track than ever with understanding and managing it all though.
    I’ve been through a lot of intense troubles the last two years, so a lot of what you describe is familiar to me. When you mentioned auto-immune disease contributing to the other issues as well, I thought about someone I have been following for about 12 months now. Sarah Wilson, runs her I Quit Sugar group from Australia (where I am). She talks a lot about managing her auto-immune disease and how it effects her mentally and physically. So if you feel like it, check her out. She has a regular blog as well as all her sugar free promotions. Maybe there will be something there that fits with you. Wishing you all the best.
    Peter

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  6. I just recently learned about POTS over the weekend and it explains everything that has been going on. I have been dizzy lightheaded nausea hot flashes unable to tolerate heat since i was a teenager but just kept it in. Figured the hot flashes were related to my endometrosis. No one could ever figure out the lightheadedness. I have known I had EDS since I was young, I always dislocated my knees hips and shoulders. I was not allowed to take PE in school. So in a way this all actually makes sense. About 5 years ago I had a problem with my heart rate always being over 120 when I went to the doctors they could never figure out why, and then I started throwing up all the time. This was during a time when I went off all my other meds for about a year. When I was in the military I past out 2 times never had before and never knew why. I have been on cymbalta since I was in the military for depression and come to find out that is a treatment for POTS. That is what has been keeping me mild for so long, but now I am working full time for the first time in 5 years. Its hard and overwhelming. Just laying here in bed my heart rate is 110. I am rambling now just have no one to process all this with.

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    1. I’m sorry you have POTS, however I hope you can get feeling a little better now that you have a name for what is going on. If there is an autonomic neurologist near you, they tend to be more knowledgable about POTS than other doctors.

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  7. Thank you for replying. I do feel better knowing what it is and that I am not going crazy or it’s just in my head or over reacting it’s not as bad as I am making it seem. I do have a question I do not know if you would know the answer. I know that you can get the ringing in the ears and your heart beat in your head but can you get a static sound? Like a tv channel that doesn’t come in. It’s weird and everyone looks at me funny when I ask about it.

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    1. I’m not sure. Maybe look up “descriptions of hearing issues” and see if there are words that could help better describe the issue to doctors?

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  8. I have been dealing with so much of the same issues. I have been to so many doctors. I went to the ophthalmologist today and he said sjogren syndrome. I am not sure of the next step.

    Liked by 1 person

    1. Are you already established with a rheumatologist? If I were in your shoes, that would be my next step. A rheumatologist can order labs to look for markers of autoimmunity you may be positive for, and can discuss if immune modulation would be helpful.

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  9. Thanks so much for sharing your story. I feel our stories are very similar. I have a hx of autoimmune disorder (Grave’s disease) and have joint pain, altered taste in my mouth, dry eyes/dry mouth and was just diagnosed with POTS. How were you diagnosed with Sjogren’s? My ANA was positive, but the typical antibodies for Sjogrens were not. What medication treatment did you start for Sjogren’s and has it made a difference for you?

    Liked by 1 person

    1. Hi Jessica!

      Did you see a rheumatologist for the workup? Was a salivary gland biopsy discussed? Many patients (30-40% is a popular statistic) have negative blood work, but a positive biopsy – this was me at the time of my diagnosis in 2014. A biopsy is considered the gold standard for diagnosis.

      In order to spare patients unnecessary procedures, it is not done if the blood work is positive and the patient meets other diagnostic criteria for Sjögren’s. If Sjogren’s is suspected, it cannot be totally ruled out without a biopsy.

      Here is my post from after being diagnosed: lethargicsmiles.com/2014/09/03/my-latest-label-sjogrens-syndrome/amp/ Plaquenil helps many patients but didn’t help me.

      I’m currently receiving IVIG and am writing about my experience on an ongoing basis.

      I am a bit behind on my updates due to my health lately, but I plan to write an update within the next 2 weeks addressing your questions about how helpful I find it to be. I’ll come back and leave you a link. In the meantime, my posts from this year are almost all about IVIG. 🙂

      Liked by 1 person

      1. Thank you so much for your reply. I am getting a lip biopsy this Friday! I noticed you mentioned in another post that you have back pain. Do you think it is related to small fiber neuropathy caused by Sjogren’s or the EDS? I’m asking because I have severe back pain (rib cage region) and chest pain along with the POTs that no one can find an answer to. What type of physical therapy and/or nerve pain medication is helpful to you? Has the IVIG reversed the nerve pain?

        Thanks again for the time you take to answer questions!

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        1. Good luck with your lip biopsy! I hope the procedure/healing goes smoothly and the results bring some clarity to your situation.

          My back pain is connected to my EDS because the muscles have to work harder to make up for the joint laxity. The pain is definitely muscular in origin and is different than my nerve pain.

          What helps me with the EDS muscular back pain is manual physical therapy because they can feel if anything is out of place and correct it. Then I stretch daily at home and do whatever exercises I am able. My stretches were provided by my physical therapist and they avoid hyperextending my joints since that can increase joint pain in EDS. Using a mirror while exercising helps me self monitor for hyper extending. The stronger my back is the less pain it is in, however I’ve never NOT had back pain in my life outside of when I used to do high intensity body weight exercise 60 minutes a day (then I would’t have back pain on the days I exercised). I remember being 6 years old and my grandma laughing because we were playing a game on the floor and I asked if we could move to chairs with a back due to my back pain before she did.

          I get pain between my shoulder blades that co-occurs with chest pain – in my case it is muscular pain related to forward head posture (correctable with lots of work – I am not near there yet!). “Forward head posture” is a term you may want to Google to see if it sounds like you and you aren’t already familiar with it. When I get that pain, stretching and resting flat, no pillow, with my legs elevated (on a chair or up the wall) helps out those muscles. Also, I sometimes get a coat hanger type back pain which is helped by the same things as the forward head posture pain. Here is a Facebook post from Dysautonomia International: https://www.facebook.com/DysautonomiaInternational/posts/963329853765894 and there is more information out there if you Google.

          I am not familiar with back pain related to SFN, but if you learn more about it, bring me up to speed!

          IVIG has helped with my nerve pain which presented in my case as burning sensations up my arms and legs. I did not tolerate gabapentin but I know some patients find it helpful.

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  10. Hi Jackie! I’m a fellow POT-sie, and longtime follower of your blog. There’s something I’m super-curious about, and hoping you could clarify (and please correct me if I have the facts wrong!). From your posts about your time at the Mayo Clinic, it sounds like the testing you had there indicated that you didn’t have nerve damage, and therefore nerve damage wasn’t causing your POTS. Then later on, you found out that you have Sjoren’s Syndrome, and due to the fact that it had gone untreated for so many years, it had caused nerve damage, which was the underlying cause of your dysautomonia and POTS. My question is, did Mayo Clinic get it wrong? Do you think the nerve damage tests aren’t/weren’t accurate? If that’s the case, it makes me feel angry on your behalf (and on behalf of all POTS sufferers who are told they can exercise their way to health and then shamed for being “lazy” if they can’t do the exercises).

    Anyway, I hope you’re feeling as well as all of your conditions allow, and I want to thank you for your amazing blog. Not only is it an incredible source of information, but it also helps me (and I’m sure a lot of chronically ill people) to feel that I’m not so alone, after all! ❤️

    Liked by 1 person

    1. Hi Marcie – nice catch! Thanks for reading my blog and being such an attentive reader. This is a really good question. The discrepancy between what I reported after my visit to Mayo (2012) and more recently (2016) is because (I believe) the doctor I saw at Mayo wasn’t aware of certain information.

      What happened is that my QSART looked normal overall however there were two oddities. One, the foot result came back WAY way different than the rest of the results. Two, I had better function in my thigh than my calf. This lead the doctor to conclude that the abnormal result on my foot was an error.

      The reason the doctor thought it was an error is because when it comes to small fiber neuropathy the common distribution doctors learn about in medical school is called a length-dependent distribution. This starts in the hands or feet and works inwards. A huge chunk of diabetic patients experience this and report burning, tingling, or numbness in their feet.
      The way off the beaten path result in the foot combined with the autonomic nerve function in my calf coming back as better than in my thigh lead the doctor to conclude there had been an error since this doesn’t follow the pattern you’d expect with length dependent neuropathy.

      What I did not know then is that non-length-dependent neuropathy exists and is a common occurrence in Sjogren’s (which I wasn’t diagnosed with at that time). It may occur in patches and doesn’t follow the “rule” of starting at the feet or hands and working its way toward the torso. It could definitely affect the nerves in the thigh and foot region but not the calf like the results of my test showed.

      My current autonomic neurologist explained this error to me. He messed around with his QSART machine and told me he actually wasn’t capable of making it report a number as an error – either it reported an error or a number, if that makes sense. It is definitely possible Mayo’s QSART works differently, however my autonomic neurologist’s explanation makes sense based on my symptom presentation.
      I am not angry about this being missed because based on the information the doctor I saw at Mayo knew, my test was negative and he did his best to explain why. If the doctor had rushed with me and I felt it was information he knew but wasn’t applying, I would be angry.

      I do wish this doctor had known to tell me that given the persistent lymph node swelling, fevers, and autonomic symptoms, the workup for autoimmunity performed in late 2010 should have been repeated yearly until we had another explanation for my symptoms. Some time between 2010 and 2014, my blood work become positive.

      This experience DOES make me want to shout from the rooftops that every patient with POTS of unknown origin should get a workup for autoimmunity, and that non-length-dependent neuropathy isn’t rare! On top of unexplained POTS, I had swollen lymph nodes and daily fevers. It just screams IMMUNE MEDIATED ISSUES!!! Deconditioning certainly doesn’t help POTS, however many POTS patients become deconditioned after becoming sick, not before. With all the research and awareness efforts that have gone on around the world since I was there in 2012 and assuming my autonomic neurologist is right, hopefully this wouldn’t be missed I were to be seen at Mayo today with these results.

      Here’s some reading about small fiber neuropathy (including non-length dependent type) if you’re interested. The article is specific to neuropathy in Sjogren’s, but the information about neuropathy applies to some of the other diseases that causes small neuropathy as well.

      http://practicalneurology.com/2017/04/small-fiber-neuropathy-in-sjogrens-syndrome-a-review/

      Perhaps I should make this reply to you an actual blog post and link to it from my Mayo Clinic post since I am sure other readers will have the same question. Thanks for asking it. 😊

      Liked by 1 person

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