Anyone have an autoimmune disease? What are your symptoms and how do you manage your illness?

Hi all! I (30F) will try to keep this short & sweet. I am overall in very good health physically but have struggled with terrible depression and anxiety nearly my whole life. It started to get really bad at 18 when I first left my small hometown for a huge state party school where I knew not one soul.

I have tried EVERYTHING to manage my symptoms which include

Dull but frequent back pain

Extreme anxiousness

upset stomach/digestive issues

lack of sleep & appetite

loss of motivation to do things I enjoy doing (I am a very active person and like to be busy)

Overall just feeling down/fatigued/sad/restless.


The strange thing is, there is no one "trigger" for my depression/anxiety. I can be on cloud nine for weeks or months only to have it all come crashing down the next day when I wake up in pain & feeling like overall *kitten*. At this time, I have tried talk therapy, numerous prescription anti-depressants, herbal supplements, meditation, yoga, traveling, socializing, every type of recommended diet and more. I am financially stable with a loving partner, friends and family so there are little to no outside stressors in my life. I regularly exercise and get plenty of time outside in the sun. I have relaxing hobbies that help a bit like kayaking, reading, hiking and such but nothing that provides any long term relief. I work a desk job which is very difficult when I am feeling bad but I make sure to take frequent breaks/walks.

I live in the Northeast US where the weather tends to be very hot and humid in the summer. For reasons unknown to me (at the time), my symptoms are the worst in July/August and tend to get a lot milder once September hits. I casually mentioned to my mom (who has been a very well-respected nurse for over 30 years) today how my mental health always takes a nosedive this exact time of year. She looked like she had an "A-ha!" moment and told me my symptoms sound almost exactly like my father's before he was diagnosed with rheumatoid arthritis, which runs in both sides of my family. I also had Lyme disease as a child so she mentioned that could be it as well. It's not a definite diagnosis (obviously) but would explain SO much - like why I never responded to depression/anxiety treatment and why my mental health seems to be inconsistent.

I spoke with my cousin who is a naturopathic doctor. She agreed with my mom's consensus and is going to run bloodwork on me in the next week or so. She is leaning towards Lyme or mold disease.

Has anyone else here been diagnosed with an autoimmune disease? Did it take a long time to get diagnose and what were your initial symptoms? Has anyone been diagnosed with depression/anxiety only to learn it is a medical issue?

Replies

  • bjkoziara
    bjkoziara Posts: 158 Member
    Did I write this? We even live in the same region. I grew up in a very small town in Florida and moved to the northeast when I was 18. I have all the same issues as you. What a very small world.
  • liz0269
    liz0269 Posts: 139 Member
    edited July 2019
    I have rheumatoid arthritis. Are you suspecting RA? Do you have joint pain? Low grade fever? Nausea during a flare? Debilitating fatigue?

    None of your symptoms sound like RA. Depression and anxiety for sure but not RA.

    I also have suffered from depression and anxiety since childhood. Mine is seasonal and tends to be worse in late fall and spring. I just had genetic testing done to identify which antidepressants I will respond to because I have had zero success with medications. I just got the results Friday. My doctor is starting me on a mood stabilizer. She said it's been her experience that when someone doesn't respond to antidepressants, there is a mood disorder involved and mood stabilizers work better. I am hopeful because I am so sick of being depressed. I will feel good for a few months and then it comes roaring back. It's awful.

    I know that both my mother and grandfather suffered as well so mine definitely has a genetic component. It sounds like yours could be as well.

    Over the 40 years that I have suffered, I have tried everything. I have gotten really good at self love so I know for sure my depression is physical, not emotionally based.

    I hope you find something that works for you.
  • Five0Six
    Five0Six Posts: 112 Member
    edited July 2019
    Lupus nephritis. Diagnosed in 2016 very quickly, as my kidneys failed and I wound up in the hospital.

    I hadn't had health insurance in 20 years and so I hadn't seen a doctor in 20 years. It was very sudden and surprising, even as I'd been particularly ill for a few months by that time. (But again, no health insurance, so I just chalked it up to stress and a summer flu.)

    I also second being careful about naturopaths. Many of them have a good heart, but they can prescribe treatments that are either ineffective, or - if you actually DO have an autoimmune disorder - can be fatal. (Someone I knew went to a naturopath. They had her on "infusions" of various vitamins and electrolytes. But because they weren't monitoring her labs with regular blood tests, as a doctor should, it overloaded her body and she had to spend a week in the hospital to get it sorted out.)

    If you have an autoimmune disorder, it will take a team of people who are specialized to treat you. Maybe a kidney doctor or a rheumatologist or a cardiac doctor or maybe all of them and more. You need someone whose got years of training in the SYSTEMS affected, not just the diagnosis itself.

    Also Lyme disease isn't something that lays dormant in your body for a decade or two and then jumps back up. It can cause symptoms afterwards if it wasn't treated properly, but if you had it as a kid and got treated, it's run its course.

    Check it out with a doctor. A licensed doctor. Best case scenario? Maybe you're just low on Vitamin D and you can pick up a bottle of the vitamin next time you're at Walmart. Worst case scenario? Maybe you do have a severe autoimmune disease, in which case you need medically verified treatment.
  • maureenseel1984
    maureenseel1984 Posts: 397 Member
    Type 1 (autoimmune) diabetes count?
    It interferes with fitness in many ways (low blood sugars mostly)...I manage with a continuous glucose monitor and planning fueling for things like long runs.
  • sammidelvecchio
    sammidelvecchio Posts: 791 Member
    Read up on fibromyalgia if you get a chance.
  • Samantharavenclaw84
    Samantharavenclaw84 Posts: 161 Member
    Hi, I have Fibro, thyroid issues and RA. I started having symptoms when I was 19. They pretty much went away until age 22 and have been particularly bad since age 25/26. My main symptoms are/were joint pain, swelling, redness, tender points, extreme fatigue, weight gain and rapid weight loss that comes in bursts every few years, extremely low vit d, low fevers for sometimes a month at a time, brain fog. And on top of all that I have some funky blood work stuff going on that makes me see a hematologist 2x year. I FINALLY found a great care team last year thanks to the hemo dr. I've been searching for a concrete answer since I turned 24 and I'm almost 35. I get worse in extreme hot and extreme cold. Sept-Nov and then end of March- end of May are the best months for me.

    I think asking for testing for auto immune issues is a great first step. Just be aware that it can also be timely and costly progress, unfortunately.
  • Kittyy1994
    Kittyy1994 Posts: 108 Member
    edited July 2019
    I would advise seeing an actual doctor rather than a naturopath. I know they're your cousin, but I've known other people go to naturopaths and be diagnosed with things they didn't really have, just to sell them woo 'cures'. I have to agree with the above poster who said that this doesn't sound like RA. I have two autoimmune diseases, alopecia and ITP. Both are more of a 'rule out' diagnosis, but both were diagnosed quickly. The former gives me, of course, hair loss. Round patches. I manage to cover them but at times in my life I have been completely bald. I get pain on my scalp sometimes and my nails are brittle but that's about it. ITP causes low platelets. When my platelets were low I'd feel very tired and any bleed could kill me. But I had a round of a medication, a form of chemotherapy, and since then (it's been 4 years) my platelets have been at normal levels.

    I have never met anyone else with ITP - I have been living with this off and on for a while. Extremely low platelet count (<10), bruising and fatigue. Treated with a form of steroids then fine... only flares up every so often
  • navychickpensfan
    navychickpensfan Posts: 23 Member
    I have SLE and TLE. I took over 10 years to be diagnosed. I find if I exercise most days of the week that it helps with my fatigue, anxiety, joint pain and depression. I have to push myself to exercise because I am so tired everyday. Also I was prescribed plaquenil and that seems to help a little with all my symptoms too.
  • Sweatspiration
    Sweatspiration Posts: 33 Member
    I have a bunch of symptoms but no concrete diagnosis. I fond a wide variety of ways to manage (although sadly, not eradicate) my symptoms and that's about all I can do right now.
  • tcbodie
    tcbodie Posts: 5 Member
    Sounds kind of familiar.... the thing with autoimmune diseases is that the symptoms are similar so it's often hard to get an accurate diagnosis. I too have similar symptoms to yourself but I have been diagnosed with Fibromyalgia, Sjrogren's Syndrome, IBS and too have suffered off and on with depression and anxiety. I was able to finally get a diagnosis for my conditions by going to Mayo Clinic to start but also seeing an internal medicine doctor, ie rheumatologist. The best way I have learned to cope with all of these illnesses is with diet. The healthier I become, the better I tend to feel. I think of things like this, I'm going to hurt regardless so I might as well hurt doing something that is helpful to my body/weight. Hang in there and good luck with things!
  • workinonit1956
    workinonit1956 Posts: 1,043 Member
    edited July 2019
    I was diagnosed with Celiac Disease in 2005 after more than 20 years of symptoms. I was misdiagnosed for many years. Among my many symptoms were anemia, anxiety, nausea, brain fog, peripheral neuropathy (pins and needles) and right before being diagnosed—weight loss. I suddenly lost 15 pounds.
    Within about 6 months of a strictly gluten free diet, most of my symptoms resolved. I continue to manage it with diet—in addition to gluten I am intolerant to soy but I handle dairy just fine.
  • lgfrie
    lgfrie Posts: 1,450 Member
    edited July 2019
    I have an autoimmune disease called UCTD. The U stands for "unspecified", as in they can't quite put a label on it. I've had some symptoms of Lupus over time, but not quite enough for a firm diagnosis. I go long periods of time with no symptoms whatsoever, and then suddenly end up in the ER or some specialist's office. No two flare ups have been the same; autoimmune diseases can be weird that way. One of the flare-ups, back in 2004, involved cognitive issues - extreme anxiety. I didn't sleep more than an hour on any night for over a month, until a doctor prescribed me some very strong sedatives. My anxiety was definitely medical in nature. It does happen. That said, anxiety can just be anxiety,

    My advice is to find a good rheumatologist and skip all the GP/naturopathic stuff. Blood tests are rarely definitive for an autoimmune disease (for instance my blood markers are all over the place when I flare up, indicating diseases like RA that I definitely don't have). A good rheumatologist with experience will test your blood, assess your clinical signs, and figure out what's going on based on their years of experience with hundreds of patients. That's what you need. Autoimmune diseases are complex and subtle; you need to see someone who's specifically trained in that area.

    Meanwhile, eat right and exercise a lot. Both make a huge difference with any kind of autoimmune disease or even just plain 'ole anxiety.


  • tccroston
    tccroston Posts: 34 Member
    I’m following this thread because my daughter has been diagnosed with FND (Functional Neurological Disorder), and POTS (Postural Tachycardia Syndrome).

    She is in constant pain (similar to fibromyalgia), but it affects her differently.

    What I have learned from taking her to Mayo Clinic is that this may become a lifelong struggle for her, but she may be able to outgrow some of her symptoms when she’s older.

    It’s a struggle, and my heart goes out to all of you!

    One of the things I learned about POTS, is that it primarily affects Caucasian, flexible, females, who are highly motivated, energetic, and aged 15-21. Although males have gotten it too. Which sounds crazy, but she’s a ballerina, and headed for the professional level, at the age of 15...

    Some of her issues came from being extremely low on iron, but it is definitely something that needs to be checked out by a doctor.
  • ATP0602
    ATP0602 Posts: 11 Member
    I have SLE, diagnosed stage 3 nephritis in 2012. I started out with abdominal pain, increased urination, weakness, bloating, and I think I turned grey(?) My pediatrician sent me for bloodwork, then right to Boston within a week or two for treatment. The first year was tough, and it being the middle of my time in high school didn’t help. Weakness, arthritis, nausea, anxiety attack, dizziness. I was in remission pretty soon, but my bloodwork and some other symptoms still indicates lupus, and fatigue is constantly my main issue. I also have a history of autoimmunity, but the lupus was most recent.

    Definitely follow up with your medical specialists and keep them up to date; they rely on you just as much as you rely on them to catch flares. While the drugs can help a lot, you can do more on your part to impact Quality if life with diet, exercise, hobbies, etc. You’re not alone!
  • amlong73
    amlong73 Posts: 7 Member
    edited July 2019
    Kittyy1994 wrote: »
    I would advise seeing an actual doctor rather than a naturopath. I know they're your cousin, but I've known other people go to naturopaths and be diagnosed with things they didn't really have, just to sell them woo 'cures'. I have to agree with the above poster who said that this doesn't sound like RA. I have two autoimmune diseases, alopecia and ITP. Both are more of a 'rule out' diagnosis, but both were diagnosed quickly. The former gives me, of course, hair loss. Round patches. I manage to cover them but at times in my life I have been completely bald. I get pain on my scalp sometimes and my nails are brittle but that's about it. ITP causes low platelets. When my platelets were low I'd feel very tired and any bleed could kill me. But I had a round of a medication, a form of chemotherapy, and since then (it's been 4 years) my platelets have been at normal levels.

    I have never met anyone else with ITP - I have been living with this off and on for a while. Extremely low platelet count (<10), bruising and fatigue. Treated with a form of steroids then fine... only flares up every so often

    I also have ITP. My platelets dip every so often, but haven't needed any treatments (which was prednisone) in
    over twenty years luckily. Lately I have been having CBC every 3-6 months, to figure out why I have chronic high white blood count.
  • Kandisn29
    Kandisn29 Posts: 92 Member
    Following
  • Hannahwalksfar
    Hannahwalksfar Posts: 572 Member
    A friend had these symptoms and was diagnosed with bipolar. Went on meds and improved slightly, got therapy and improved dramatically. Stress is a killer but if you’re worried get a full blood panel including titre testing for autoimmune