Medical Anxiety: A Rheumatology Update

9284a710-2aad-4744-8294-227dc1ce7781After two years of procrastinating and medical anxiety through the roof, I made it to the rheumatologist’s office.  I used to see a rheumatologist a couple of years ago, but my anxiety always stops me from doing the things that I am supposed to do.  I’m one of the worst patients in the world… I swear.

When I arrived at the appointment, I was informed that due to Coronavirus restrictions we are not allowed to bring anyone to the appointment with us.  Cue my anxiety.  I was instantly shaking I was so upset.  My husband has always been allowed to join me due to my PTSD and medical anxiety.  Well, this was a new doctor and they were not playing.  The medical staff was wonderful in how they helped me deal with such a high-stress situation and we all reached a compromise and I went through with the appointment.

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This doctor was very thorough.  He asked me a million questions and he did the most intensive physical exam I’ve ever been through.  He checked every joint and ache and pain in my body.  He confirmed that I do, in fact, have Limited Scleroderma and a pretty severe case of fibromyalgia, in addition to PBC.  The list of referrals and labs that he wants are a mile long… echocardiogram, pulmonary function test, swallow test, labs and urine to check for kidney function.  I feel so overwhelmed with all of the things that they want me to do in addition to my already full schedule of appointments with all of my other specialists.  I used to say that managing my disease is a full-time job, but lately it feels like two jobs!

16bcb2a8-50d8-4c19-8b6e-f20e83b62a61All of the information that I took in today really left me scared of this limited scleroderma.  I’ve known for a long time now that I have this.  There is no  surprise here.  However, no doctor has ever taken the time to explain what this disease will look like in ten and twenty years.  Today that changed.  We sat and talked about it all for a long time.  In one sense, I am extremely appreciative of that doctor for taking the time with me that he did today.  But in another sense, I am literally terrified now.  I almost wish he didn’t tell me how bad it will get.  We talked about heart and lung issues with this disease and I hadn’t even considered those yet.  With everything going on with my PBC, the scleroderma gets put on the backburner sometimes.

e07c5f74-bbdb-4afb-9f0f-e1db8df95ec7I have finally had to agree to take a medication for my Raynaud’s.  I have been fighting this since I had  reaction to nifedipine a couple of years ago.  It made me super dizzy so the doctor said not to worry about it right now.  I was living in Florida at the time and not having quite as many episodes.  It was much easier to manage back then, but now that I’m in Washington state and we currently have snow on the ground, I need something for it.  I’ll be taking this medication at night so I (hopefully) won’t be as dizzy this time.  He took a light and checked my nail beds and confirmed telangiectasias, which is one of the major symptoms of limited scleroderma.  I have spent the last two years half convincing myself that I don’t have this disease.  It must be a mistake.  That ideal died today.  I have almost all of the symptoms now and it’s starting to affect me and the functionality of my life.  Tonight, I feel broken.

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3 thoughts on “Medical Anxiety: A Rheumatology Update

  1. I am so sorry that you have this diagnosis now, but it is good that you are getting tested and can start to get some better answers. When I was diagnosed one of my doctors told me that it was good, but also a shame, to get definitive answers. I also have limited systemic sclerosis (scleroderma) and I have every single one of the symptoms in the CREST acronym making me pretty darn classic. I also have Sjogren’s Disease and fibromyalgia. I was just in grief when all of this happened to me; hugs to you. I know that it is awful and a lot to take in.

    I worried a lot about what would happen to me in 5 years, or ten years just as you must be doing, but I have learned that there are great meds out there to help with treatment and I do have control over what I choose to take. It has been 6 years since I was diagnosed and my lungs and heart have both improved and many of my symptoms are better then they were at the time I started this diagnosis. I’m glad that you have found a great doctor. Hang in there, you can do this!!

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    1. Thank you so much for your kind words! And yes… sadly I am already worrying about 5 and 10 years down the road. I have an autistic child and I wonder what will become of him if I don’t make it. In addition to this diagnosis, I have an autoimmune liver disease that will put me on the transplant list at some point. Reading your comment gives me hope. Love and light to you now and always!

      Liked by 1 person

      1. Hugs to you, sclerosister. I’ve learned that anxiety is a huge part of my illness; once I was started on immunosuppressant drugs it just stopped. When I’m in a flare, it comes back. It’s like the cruelest part of the disease. Hang in there and plan for the worst but live like today is the best day of your life; may you have better days to come.

        Liked by 1 person

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