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Arthritis and maybe autoimmune while managing a farm

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  • Arthritis and maybe autoimmune while managing a farm

    A little more than 2 years ago, my husband and I bought a small horse property and brought my two horses home. A couple months later, I had my first "flare" - my fingers had ballooned up, especially on my right hand. I couldn't make a fist. I was completely exhausted and I had a fever. I went to the doctor, thinking I had lyme or something else tickborne. My bloodwork didn't show anything abnormal (other than high inflammation markers), but I was put on Doxycycline since I live in New England and I'm outside a lot with the horses. The theory was that the Lyme antibodies hadn't developed in my blood yet. The doxy helped manage the inflammation, but I was still exhausted. Still, my most obvious symptoms (swelling and fever) went away so I figured that was that and I moved on.

    Over the last year and a half, I've had several other health issues including random fevers, periods of extreme exhaustion and one incident of chest pain where I was sent to the E.R. but nothing conclusive was found. A few weeks ago, my hands ballooned up again the same way they did the first time, so I went back to the doctor expecting to be treated for Lyme again. At that point, my doctor started linking all my prior history and started suspecting autoimmune. She ran another full tick panel, tested for Rheumatoid Factor and ANA but nothing came back. At this point, we were over a month beyond the period when I first noticed the swelling, so its very unlikely to be tickborne. Going off my symptoms alone, my doctor thinks the swelling in my hands is arthritis and now I've been referred to a rheumatologist.

    My appointment with the rheumatologist is still over a month away. In the meantime, I'm struggling to go about my daily life without exacerbating the swelling in my hands. I'm in my mid-twenties, I've always been fit and healthy. Up until my last appointment two weeks ago, I thought all health issues were bad luck, so I am having a hard time slowing myself down.

    The rheumatologist I am seeing comes highly recommended, and I am sure he'll either find a diagnosis for me, or maybe figure out that I have just been unlucky. But that appointment is still pretty far out, and my hands are still fat, stiff and painful, and I'm pretty depressed that my "bad luck" might be here to stay.

    I'd love to hear any advice, shared experiences or just commiseration you all have for me.

  • #2
    I'm so sorry you're dealing with this and the "unknown" part of it can be terribly frustrating and scary. I can relate, though I wasn't as young as you when my life got turned upside down twenty years ago. Took time, but I was diagnosed with Multiple Sclerosis (MS) about two years from the point where I started noticing issues. NOT saying that's what you have, just to say that a diagnosis will come, and with that, relief of sorts that you'll finally know exactly what is wrong with you and can work on finding treatments and so forth that help.

    Against every single family members objections (like that would stop me), my husband and I bought a farm in 2002, approximately 1.5 years after diagnosis. I was quite ill at the time (when I look back on it now), having frequent flare-ups requiring treatment of nasty high-dose steroids via IV infusion. After trying to "do it all", and subsequently realizing I was making myself sick in the process, I had to alter my expectations of what I could do - which was damn hard. I felt like a failure because I couldn't do everything I used to do... which is just so silly - a sick person can't keep up with a perfectly healthily person. Duh! So this is what I did:
    • No more horses up in stalls 12hrs & out in pasture 12hrs - horses have lived outside now for nearly 16 years and are just fine. In fact, I'd say they are better off for it. No more stalls to clean/bed, no hauling the horses in/out twice a day, etc.
    • Everything doesn't have to be "perfect" for the horses to be safe, healthy and happy - so let go of being super picky about how things are kept or how they look to others (this was the absolute worse thing for me to let go of!). You don't have to plant flowers everywhere, and have a million dollar yard and immaculately kept drive and spotless tack room and on and on. Take care of basics - mend fence, remove obstacles in pastures/paddocks (like branches, rocks) as needed and mow when you're able. Pile of poop in the driveway? The next good thunder storm will take care of it!
    • Arrange chores to suit your abilities. Like, we switched to larger troughs 100+ gallon vs the smaller, maybe easier to move/clean 50 gallon toughs. The 100 gallon don't have to be filled so often. We converted a stall to keep hay in, vs putting in the loft, as I have some balance issues at times and climbing the steep stairs to the loft can be problematic for me. So think outside the box and how you could rearrange things or products you're using to make life easier for you.
    • Give yourself a break! This can be hard, believe me I know. It's in the 90's here now and heat is my nemesis. It can make me quite sick but it still makes me mad that I can't get outside and do chores, but I've learned to forgive myself.
    It might be good if you haven't already, discuss with your dr ways you can reduce the swelling and tightness in your hands. Whether its over the counter meds or an ice bath or heating pad or sleeping in compression gloves, etc. Anything that can relieve symptoms is useful, even if fleeting.

    I wish you luck in your journey to find a diagnosis.
    ~~ How do you catch a loose horse? Make a noise like a carrot! - British Cavalry joke ~~

    Comment


    • #3
      I developed severe rheumatoid arthritis symptoms when I was 39. It felt like my life was over. Spoiler alert: it wasn't, even though I've added a bunch more diagnoses over the years. Once I got stabilized on meds, life got a lot better. I worked a very intense job that required long hours and frequent overnighters on top of the long days, and kept doing that job for 20 years. I got my latest little herd of horses in 2003. With the crazy work I did, I couldn't take care of the horses too, but my husband stayed home and took care of our daughter and all our critters. I mostly stopped riding because my balance was affected a lot, but I took up driving instead.

      I finally threw in the towel on working two years ago, and retired. I kept all of my horses for the rest of their lifetimes. They all lived really long lives, and the last one died in October. Cycling has been my other passion, and I still ride eight miles a day.

      So if you find it is an autoimmune issue like RA or lupus, while it take some doing to find the best meds for each individual, there is life after diagnosis.

      Until you can get in to the rheumatologist, can your family practice doctor help you out with symptom relief? Anti inflammatory meds might help. A lot of people take prednisone; I don't personally because it messes with my emotional well being, and I would be in prison for murder. There are other side effects that are a problem for me as well. But lots of people do just fine with it, and if the side effects are an acceptable risk, it might be a huge help. Just make sure you understand the risks, if you decide to ask your family practice doctor to prescribe prednisone.

      The post above by 4LeafCloverFarm is very helpful, so I won't reiterate advice on making your life easier in the meantime.

      Best of luck. If I can answer any questions for you on the autoimmune stuff, just let me know.

      Rebecca

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      • #4
        Sorry that you are in the midst of this. It can be difficult to sort out and get a concrete diagnosis. You might want to mention Psoriatic Arthritis to your new doc. Like you, I also was negative for ANA and rheumatoid factor. I was finally diagnosed with Psoriatic Arthritis based on symptoms alone. The rheumatologist that finally diagnosed me told me that with this form of arthritis usually the tests do come back as negative and it is diagnosed through symptoms and family history.
        Hang in there.
        And rest when you have to

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        • #5
          I meant to address the fatigue problem in my first post. This is something I deal with daily - some days are worse than others, and some are a lot worse. For years, I used caffeine (diet coke, tea, etc.) to muddle through, as I had a full time job working 40-60 hours a week. It was a while before I realized the caffeine was not helping, and actually making it worse (the premise being that when you come down off the caffeine, that the fatigue is worse). Bonus of being caffeine free is that I have fewer headaches and almost no migraines any more.

          So my tips for combating fatigue are:
          • drink lots of water to stay well hydrated
          • go to bed at the same time every single day, get at least 8 hours sleep
          • have a regular exercise regiment (yoga is supposed to be very good - I'm not a candidate for yoga, as 'I've had several knee surgeries, so I have no real life experience there)
          • pace yourself - do chores doing your best time of day when possible
          • take short naps when needed - no longer than 45 minutes (30 minutes is better)
          • cut out all caffeine (and only use sparingly for a slight boost when its critically needed)
          • if having sleep issues at night, speak with a Dr. about sleep aides (sleep disturbances will make fatigue much worse)
          • prepare for long/hectic days the day before by staying quiet, resting and not overdoing it so you have the energy to enjoy that concert or day out shopping with your besties or Thanksgiving Dinner or whatever it might be
          • Become a "browser", and have several small meals throughout the day instead of the standard breakfast, lunch, dinner. It takes energy to digest a large meal, so replace it with several smaller ones.
          Last edited by 4LeafCloverFarm; May. 22, 2019, 02:06 PM.
          ~~ How do you catch a loose horse? Make a noise like a carrot! - British Cavalry joke ~~

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          • #6
            With a couple of exceptions, i could have written the original post 39 years ago. I was 21, had a vague diagnosis of mono from the Dr, missed most of the semester of college, then sang in europe for 1 month. Less than a week later, my hands swelled and were red, and very painful. I was sent to a good rheumatologist, the redness and swelling went to most of my joints. Blood tests were normal. I could not tolerate any pressure in my ankles and rode and showed without stirrups. When the swelling affected my cervical and vision, the Rheumatologist gave me a steroid shot in the muscle, I felt like we had finally found a drug that would work. At this point I was 28 or 29. Basically every 2-3 years I get a steroid shot in the muscle and my immune system gets knocked down a bit. I went back to riding with stirrups, and walking, hiking, etc. Still to this day, my blood tests are normal (Dr said that my organs are not being affected). The biggest things that I can control, is not letting anything stress me out and getting 9-10 hours of sleep a night (and every 2-3 or more years when I feel it coming back, getting a steroid shot in the muscle).

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            • #7
              One can be seronegative ra but you still have a positive ANA but negative rf. With not having a positive ANA it would be rare that you would have an autoimmune disease. There's a lot of tests the dr can do to see what you have that's causing swelling and it's not just arthritis that can make you feel like a balloon animal. Vascular, muscular, lymphatic, and nerves systems can cause pain and swelling. Just breathe and take it one day at a time until you have something to fret about and try not to stress too much until your drs appointment

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              • #8
                4LeafCloverFarm couldn't have said it better!

                I'm only 22 and have been living with vague AI diagnoses for 3-4 years now, right about when I started feeling too fatigued to ride as much as I used to. If you'd like, check out my blog where I rant about my AI journey; not too much about my horse life, but as a healthcare professional and pro obsesser, I have done quite a load of research over those years. https://diagnosisuncertain.blogspot.com/

                If you've never heard the Spoon Theory, as a fellow AI sufferer I would definitely suggest checking it out; again, a lot of what 4LeafCloverFarm suggested but in a nice metaphor. You have to seriously pace yourself and only do so much if you want to keep your energy for the following days. https://butyoudontlooksick.com/artic...-spoon-theory/
                https://en.wikipedia.org/wiki/Spoon_theory

                Best of luck to you, and feel free to reach out if you have any questions

                Comment


                • #9
                  Originally posted by spotted draft x filly View Post
                  One can be seronegative ra but you still have a positive ANA but negative rf.


                  With not having a positive ANA it would be rare that you would have an autoimmune disease.

                  Not at all. On the contrary, not having a positive ANA is common in autoimmune disease. Positive ANA is not a requirement for someone to have an autoimmune disease. Positive antibodies and symptoms for a specific autoimmune disease are required in most cases to diagnose autoimmune disease. Seronegative (negative antibodies) exists in RA and other autoimmune diseases. As for positive ANA being a requirement, many people who have autoimmune diseases do not have a positive ANA, myself included. I currently have one diagnosed autoimmune disease and am in the process of currently getting an undiagnosed one or more suspected rheumatic autoimmune disease diagnosed, yet I have never had a positive ANA to date. Over time a negative ANA can eventually change and become positive, or it can stay negative and a person can have autoimmune disease.

                  Positive ANA can be a possible sign of autoimmune disease, but is not an abolute sign of having autoimmune disease. Positive ANA can be found in people with RA, Lupus, Sjogren's, Scleroderma, connective tissue diseases and other autoimmune diseases, but people with these diseases do not always have a positive ANA. Then there are the other 100+ autoimmune diseases and people may or may not have positive ANA.

                  Keep in mind that positive ANA is also found in healthy people who do not have autoimmune disease, specifically in those over 65 when ANA naturally increases. Then there are the times that someone who normally has a negative ANA suddenly has a positive ANA temporarily due to infection. Other things that can cause a positive ANA are cancer and some medications.

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