It's been a while! Autoimmune diseases and more

Sunday, July 01, 2018

I wrote back to an old Sparkfriend a few minutes ago, and figured that most of what I was filling her in on I should put on my page, thus this blog post.

Well there have been a lot of ups and downs since I was last on regularly, but I finally got some answers about my pain, fatigue and other issues that I've had for years, some as long as I can remember. I am seeing a rheumatologist now for a type of spondylitis (which she thinks I've had since I was a kid) and fibromyalgia, and possibly sjogren's syndrome as well. I found out in October.

At first it was a HUGE relief - that I wasn't crazy, that somebody had answers. My Dr. knew exactly where to touch, she knew where all of my sensitive trigger points were, etc. But then after the relief, came a bit of depression, that I would have to deal with this for the rest of my life. That I might get a lot worse. Part of that was exacerbated by about 3 months of the worst back pain I've ever had. I could hardly walk. Pain at that level with no break for so long, really wears on you physically, mentally and emotionally. I went to physical therapy for 2 months which helped a lot, especially since nothing else was helping.

I've been on a variety of anti-inflammatories since, I'm trying my 3rd one now. I'm trying not to start on biologics like Humira yet. I don't want to start too soon and get to a point where nothing works anymore, but I don't want to start too late, because they can actually prevent some joint damage. I was under a lot of stress for a while too, but that has recently dissipated. (We had an exchange student, I'm so thankful for the experience and he is truly family now, but it was a bad time to be going through all of this and suddenly juggling a teenager)

Now that my stress is reduced, I feel more prepared to start to try to lower my inflammation in other ways and wanting to offset some med side effects. I need to stop being distracted and in survival mode and relax and get in good habits again. I've got to deal with this for the rest of my life, I need to accept it and do what I can. And I want my life to be a long one :)

So, that's where I'm at. I hope to see some of my friends here, please comment so I know you are here, I'd love to catch up. I would love to help support you, and build a community again which as a perk helps me too, helps me get back on here regularly. Hope you all are well!
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Member Comments About This Blog Post
    I was diagnosed with lupus a while ago (about 18 months I think)... and have had some ups and downs with treatment... and my rheumatologist suspected fibromyalgia as well, but decided I had raynaud’s disorder... so I can relate to the turmoil and emotions that an autoimmune diagnosis can evoke. Like other comments I have to say that there are ways to use diet to mitigate (not necessarily cure) the effects... a friend of mine has ankylosing spondylitis and has severe back pain and other symptoms, but manages to keep up with her active (very) 3 year old! She is one of my heroes! I think anyone who deals with it and manages to cope with a family and their demands should get a superhero cape!
    925 days ago
  • TANYA602
    I've been thinking about you a lot since your message and am so glad you have a diagnosis you can work with. I've missed our virtual conversations and challenges and will keep reading to see what you've been up to. 'Glad to see you are back to SP!
    927 days ago
    I should add that abnormal blood test results are what got me referred to rheumatologist, along with many symptoms. The meds are more for the spondyltis I think. If I had only fibro I'm not sure what they do. I'm still new to this and learning. :)
    932 days ago
    Thank you for sharing. I have a CAT Scan with dye July 3rd to see if my poor circulation is from my fibromyalgia or blockage. I am cold and have muscle cramps most of the time. I now have questions for a rheumatologist after reading your blog. emoticon
    932 days ago
    Check out Dr Eric Westman on YouTube. Low carb diet has down wonders for inflammatory issues. So bye bye bread , sugar, potatoes and starchy foods and hello to a new life where you feel GREAT. I can’t believe how good it feels. Ask you Dr. Blessings
    932 days ago
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