I have an autoimmune disease.

After months of unexplainable fatigue (and now hair loss), I was diagnosed with an autoimmune disease. These are my beginning ups and downs of figuring everything out. | via The Spirited Violet

Since October or November, I’ve felt very poorly.  During the weekend, I would sometimes take multiple naps on a day even though I had plenty of grad school work waiting for me.  I would sleep a decent amount, but then I’d still wake up feeling so exhausted.  When I came back from Mexico, I had chronic fatigue, fevers, chills, body aches, for weeks.  I was so exhausted that I would sleep in between classes and at any time I was at home by myself.  I knew I had to do something, but I was so exhausted that I didn’t feel like I could do anything.

When graduate school ended, I thought I would have a few days to recover and would start being productive, but instead… I felt like everything in my body was made out of lead and everything ached all of the time.  I could sleep hours and hours and hours.  I had to sleep on hot pads to be able to sleep sometimes.  My brain was always foggy and it was a struggle for me to remember normal things and routines.

Last month I felt sunburned in a funny place on my scalp.  I took a picture of my scalp because Devin is color blind and can’t see sunburns and I gasped.  I’m balding?!  A week or two later, my friends mentioned that I must be stressed because they could visibly see parts of my scalp.  I booked an appointment with my Doctor ASAP.

The following are all symptoms I have been having (and I am mostly still having):

  • Fatigue
  • Weakness
  • Intolerance to cold
  • Muscle aching and cramps (especially in my wrists and legs)
  • Weight gain or difficulty losing weight
  • Bloating
  • Mental fog
  • Feeling like my scalp is buzzing
  • Tongue swelling
  • Exzema
  • Exhaustion + insomnia
  • etc. etc. etc.
  • … and hair loss.  These photos are incredibly forgiving.

I explained to my Doctor that even though we just tripled my thyroid medication about two months ago that all my symptoms came back a month afterwords.

After months of unexplainable fatigue (and now hair loss), I was diagnosed with an autoimmune disease. These are my beginning ups and downs of figuring everything out. | via The Spirited VioletAfter months of unexplainable fatigue (and now hair loss), I was diagnosed with an autoimmune disease. These are my beginning ups and downs of figuring everything out. | via The Spirited VioletAfter months of unexplainable fatigue (and now hair loss), I was diagnosed with an autoimmune disease. These are my beginning ups and downs of figuring everything out. | via The Spirited VioletAfter months of unexplainable fatigue (and now hair loss), I was diagnosed with an autoimmune disease. These are my beginning ups and downs of figuring everything out. | via The Spirited VioletAfter months of unexplainable fatigue (and now hair loss), I was diagnosed with an autoimmune disease. These are my beginning ups and downs of figuring everything out. | via The Spirited VioletAfter months of unexplainable fatigue (and now hair loss), I was diagnosed with an autoimmune disease. These are my beginning ups and downs of figuring everything out. | via The Spirited VioletAfter months of unexplainable fatigue (and now hair loss), I was diagnosed with an autoimmune disease. These are my beginning ups and downs of figuring everything out. | via The Spirited VioletAfter months of unexplainable fatigue (and now hair loss), I was diagnosed with an autoimmune disease. These are my beginning ups and downs of figuring everything out. | via The Spirited Violet

After explaining all of my symptoms again, my Doctor explained: “when you see the online results of your blood work and you see that it is positive for autoimmune diseases, you probably have one, but not something like lupus.  Because… we will definitely be finding something with your results.”

It made sense, but it isn’t especially comforting either.

As my thyroid panels came back it was very clear that I have an autoimmune disease: Hashimoto.  My body has been pumping out A LOT of antibodies to attack my thyroid.  At the moment, I feel grateful and validated to have an answer.  However, I also feel like crap; I’m at the point of hair loss that it is actually becoming very hard to hide and I feel chronically tired.  I’m happy to have such a mindful Doctor and I’m grateful that I have this time right now post-grad school to get this sorted out and really start focusing on my health.

Over the past month, I’ve still been getting used to the idea that I have an autoimmune disease and I’ve been shocked with a lot of what I’ve found.  However, I’ve found so much comfort reading other people’s stories with autoimmune and other health ailments which is why I decided to share this aspect of my life.  I plan on sharing more in the future about my health as I navigate through hopeful hair regrowth and changes I’m making to hopefully start feeling better.

Do you have an autoimmune disease or know someone with one?

  • Kim Pincombe-Cole

    Stay strong – and know that you are not alone. I have an IGA immune deficiency that reeks havoc on me. It took 12 yrs to get a diagnosis from the onset of symptoms at age 5. I spent the better half of my childhood in hospitals with infections. I manage it much better now as an adult, but I’m at much greater risk of developing addtl immune deficiencies as I age. The constant pain & fatigue is hard to explain to others though – I think that’s the hardest part!

  • Kim Pincombe-Cole

    Stay strong – and know that you are not alone. I have an IGA immune deficiency that reeks havoc on me. It took 12 yrs to get a diagnosis from the onset of symptoms at age 5. I spent the better half of my childhood in hospitals with infections. I manage it much better now as an adult, but I’m at much greater risk of developing addtl immune deficiencies as I age. The constant pain & fatigue is hard to explain to others though – I think that’s the hardest part!

  • I am so sorry! My husband has the autoimmune Multiple Schlerosis. It’s definitely challenging for him and me. I’ve also been suffering from Chronic Fatigue Syndrome, but that’s not an autoimmune. I guess, I’m saying, I can empathize and emulate to a degree. Facebook message me if you ever want to talk.

  • I am so sorry! My husband has the autoimmune Multiple Schlerosis. It’s definitely challenging for him and me. I’ve also been suffering from Chronic Fatigue Syndrome, but that’s not an autoimmune. I guess, I’m saying, I can empathize and emulate to a degree. Facebook message me if you ever want to talk.

  • I was diagnosed this year with RA. All the symptoms have finally made sense. Started meds and with RA symptoms come and go so I am learning how to live with it. Luckily, mine is mild so keeping the joints from further damage is key. Exercise, eating well and sleeping all are essential when one has an autoimmune disease. Knowing you are not along and getting knowledge is essential.

  • I was diagnosed this year with RA. All the symptoms have finally made sense. Started meds and with RA symptoms come and go so I am learning how to live with it. Luckily, mine is mild so keeping the joints from further damage is key. Exercise, eating well and sleeping all are essential when one has an autoimmune disease. Knowing you are not along and getting knowledge is essential.

  • Well, as I’m sure you know, I was diagnosed with my AI disease just under a year ago, and they really are awful. At first, I wondered if I was just worn out (you know, from being a new mom and everything), but then my symptoms became too serious to ignore, so I had to go in. I, too, felt a measure of relief that my symptoms actually had a name and that there were treatments available because I knew I couldn’t keep living the way I was.

    It’s been a long road, but I’m finally starting to pull out of it (I think). I used a combination of methotrexate and prednisone to treat mine, but I kind of wished I would have talked to a different doctor before starting all those medications (one who had done some research into more holistic methods). Yes, the drugs have helped, but that help came with a pretty hefty price tag of awful side effects, and I do wonder if I would have been able to make any headway without having to go on those meds.

    That being said, I was honestly pretty far gone, so the meds did seem to be my best option–I could barely function as it was, and my muscles were only getting weaker by the day. If I were to do it again (as I probably will have to later in life when another flareup happens), I’ll probably see if I can go on a more modified dose of the medications and try and treat the other symptoms by going back on a strict elimination diet (which surprisingly really seemed to help, although it actually seems to help many people with AI diseases).

    Anyway, I’m sorry you have to go through this. All I’m saying really is that I feel your pain and that I hope you find a treatment that works for you. Feel free to pick my brain anytime, and here’s hoping for a miracle cure for all AI diseases in the next year or two, ha ha!

    (Sorry for the novel, p.s.)

    • Thank you for the novel! 🙂 It was so relieving to know it wasn’t just “in my head” how I felt. I recently became medicated for my anxiety, but it all felt so irrational because I couldn’t pinpoint why I was have so many panic attacks etc. It made a lot of sense that I was having a physical component causing an imbalance to help explain a lot of what was going on. I was really concerned I was having just a major depressive episode and that was causing all of the body aches etc.

  • Well, as I’m sure you know, I was diagnosed with my AI disease just under a year ago, and they really are awful. At first, I wondered if I was just worn out (you know, from being a new mom and everything), but then my symptoms became too serious to ignore, so I had to go in. I, too, felt a measure of relief that my symptoms actually had a name and that there were treatments available because I knew I couldn’t keep living the way I was.

    It’s been a long road, but I’m finally starting to pull out of it (I think). I used a combination of methotrexate and prednisone to treat mine, but I kind of wished I would have talked to a different doctor before starting all those medications (one who had done some research into more holistic methods). Yes, the drugs have helped, but that help came with a pretty hefty price tag of awful side effects, and I do wonder if I would have been able to make any headway without having to go on those meds.

    That being said, I was honestly pretty far gone, so the meds did seem to be my best option–I could barely function as it was, and my muscles were only getting weaker by the day. If I were to do it again (as I probably will have to later in life when another flareup happens), I’ll probably see if I can go on a more modified dose of the medications and try and treat the other symptoms by going back on a strict elimination diet (which surprisingly really seemed to help, although it actually seems to help many people with AI diseases).

    Anyway, I’m sorry you have to go through this. All I’m saying really is that I feel your pain and that I hope you find a treatment that works for you. Feel free to pick my brain anytime, and here’s hoping for a miracle cure for all AI diseases in the next year or two, ha ha!

    (Sorry for the novel, p.s.)

    • Thank you for the novel! 🙂 It was so relieving to know it wasn’t just “in my head” how I felt. I recently became medicated for my anxiety, but it all felt so irrational because I couldn’t pinpoint why I was have so many panic attacks etc. It made a lot of sense that I was having a physical component causing an imbalance to help explain a lot of what was going on. I was really concerned I was having just a major depressive episode and that was causing all of the body aches etc.

  • Lauren Johansson

    My best friend has Hashimato’s. She loves helping others that just have gotten diagnosed. If you want me to connect you guys, let me know!

  • Lauren Johansson

    My best friend has Hashimato’s. She loves helping others that just have gotten diagnosed. If you want me to connect you guys, let me know!

  • Hello Autumn! I send you a lot of good healthy green energy to you. and a music video, were I sing. I hope you feel good really soon. Best regards from Buenos Aires, Argentina

  • Hello Autumn! I send you a lot of good healthy green energy to you. and a music video, were I sing. I hope you feel good really soon. Best regards from Buenos Aires, Argentina

  • I have this, too! I just found out recently so I don’t have any good advice for you, but I’ll sympathize with you and say it SUCKS.

    • What have your main symptoms been? The chronic fatigue is the hardest one for me to get over.

      • Same here. That, and I get this awful rash on my neck and legs.

        • When I came back from Mexico, I had a really bad rash on my face for a few weeksl It ended up going away, but until I figured out the autoimmune stuff it didn’t make a lot of sense to me.

  • I have this, too! I just found out recently so I don’t have any good advice for you, but I’ll sympathize with you and say it SUCKS.

    • What have your main symptoms been? The chronic fatigue is the hardest one for me to get over.

      • Same here. That, and I get this awful rash on my neck and legs.

        • When I came back from Mexico, I had a really bad rash on my face for a few weeksl It ended up going away, but until I figured out the autoimmune stuff it didn’t make a lot of sense to me.

  • I have Crohn’s Disease, which is an autoimmune disease. I’ve had it for over 20 years. Yeah, having a chronic illness sucks, but eventually you learn good coping strategies.

    • I have known many people with Crohn’s disease, but didn’t realize it was an autoimmune disease until I began researching stuff on mine.

  • I have Crohn’s Disease, which is an autoimmune disease. I’ve had it for over 20 years. Yeah, having a chronic illness sucks, but eventually you learn good coping strategies.

    • I have known many people with Crohn’s disease, but didn’t realize it was an autoimmune disease until I began researching stuff on mine.

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