The Scleroderma Chronicles: I’ll take a side of fibromyalgia with that…

My poor physician team. I come to see them with a whole host of complaints at every appointment. I can see then mentally sorting the symptoms into piles as I talk :

  • important, needs to be investigated immediately.
  • sad, but part of the life of a patient with this chronic condition.
  • these are issues that should be passed on to another member of the treatment team.
  • irrelevant to the current diagnosis.

For three years I’ve been mentioning my muscle problems. My muscles are sore to the touch, and they just burn sometimes. The burning can go on for days, and I do get a little cranky; okay, maybe some wailing has occurred. Poor cats! It is really painful at connection points around joints. Stamina is  poor, and I’m exhausted all the time.

Yellow cat.
I dragged a cat pillar into the bedroom for the cats to sleep on as it too hard to have them in bed with me. There are days when a cat paw on my leg is more than I can handle.

Some of these symptoms can be explained as being part of the whole scleroderma thing. Muscle issues are rampant with scleroderma as some of the necessary enzymes for muscle movement are too low for reasons that aren’t clear to me. My rheumatologist has checked for polymyositis and other serious muscle problems, but my muscle strength is good and my test results have been normal. I’m in pain, but my muscles aren’t being damaged. I have been just managing with heat pads and knitting as there seemed to be nothing that could be done. To make things worse I can’t have anti-inflammatory drugs or painkillers because my kidney function is low. Bad muscles, bad!

Best advice ever for the scleroderma girl. Really, what else can I do?

At my last visit with my rheumatologist I was really sore to the touch, and she suddenly asked if I was experiencing brain fog…

Oh my lord, yes! It is so bad I’m afraid to drive sometimes. I struggle with anxiety and some depression when things are bad. The fatigue is off the charts when this is going on, and I can’t get good sleep. Lately I have developed headaches too…

“Oh. This is fibromyalgia“, she said. Just like that the light had gone off for her; my symptoms were suddenly sorted into another pile that screamed “fibromyalgia”. She did a quick assessment, and the diagnosis was added to my chart lickity split…

I also have Sjogren’s Syndrome, and the symptoms of fibromyalgia and Sjogren’s do overlap, but it would appear that I have both. No wonder my fatigue has been so extreme.

So, nothing has changed, but at the same time everything has changed. I have concrete reasons for feeling so bad. My blood pressure issues have improved, and I am able to walk and exercise more. I’m using my inhaler every day and my blood oxygen levels are coming up. The more I move, the better I feel. Little by little, I am getting a handle on things again. I am sleeping like a rock and I wake up feeling pretty good.

My terrible twosome of autoimmune diseases just became a triad, and I am actually feeling more hopeful about my ability to manage things. Take that, you three! I am coming after you all with a pitchfork!

Err… make that knitting needles. I’m coming for you all the same. Be warned, I am taking you down!

Knowledge is power.

Author: Midnight Knitter

I weave, knit and read in Aurora, Colorado where my garden lives. I have 2 sons, a knitting daughter-in-law, a grandson and two exceptionally spoiled kittens. In 2014 I was diagnosed with a serious rare autoimmune disease called systemic sclerosis along with Sjogren's Disease and fibromyalgia.

13 thoughts on “The Scleroderma Chronicles: I’ll take a side of fibromyalgia with that…”

  1. Thank you for sharing such great information. I know how hard it is living with an illness and sometimes it seems that no one really understands. I have been living with Multiple Sclerosis for almost 18 very long years, but my goodness I refuse to give in.
    I also wanted to say, your cat is absolutely beautiful!!!! I am looking forward to reading more of your posts. I hope you have a pleasant evening!!

    1. Alyssa, my sister also has MS, and was also diagnosed 18 years ago. Like you, she refuses to give in, but the challenges are hard and ever-changing. My heart goes out to you. Alys

      1. Thank you so much! Sounds like your sister and I have a lot in common! It is so important to never give in to MS because then it wins! I really believe that the only way anyone can actually fail, is to give up and stop trying. I appreciate your kinds words. Does your sister blog at all? I always love chatting with others dealing with MS!

      2. Alyssa, I just sent your blog link to my sister, Sharon. She also loves purple (like your blog background) and we’re all cat lovers. So many coincidences! I hope she’ll find the time to read some of your posts. Thanks for connecting.

      3. Thank you so much! I am more than happy to help you and her as much as I can. Cats are so amazing and they have unconditional love for us!! My 2 cats are always trying to make me feel better and help me do everything around the house. Honestly, they are normally in the way, but they mean well!!

      4. Thank you. My DIL also had MS and like your sister has had to deal with ever changing problems. It is so hard to deal with a chronic condition that isn’t well understood and had no cure . All there is for it is to stay positive and too fight on. Hugs to you and your sister. Marilyn

    2. Multiple sclerosis is a truly awful disease! So sorry you are also dealing with something that it is hard for other people to see. It is a problem for sure. Hang in there and kick some MS butt when you can.

      I do have very photogenic cats. They are very spoiled, too. They are great companions, and too involved in the knitting some times.

      1. I could not agree more! MS is not a very kind illness, but we handle it the best way we can!
        I think our cats are supported to be spoiled rotten!!! We have 2 wonderful cats and I am pretty sure they have more food in the house than my husband and I do!!! I know when I have crocheted, my cats always want to help so I can imagine yours like to help you knit!!!

  2. Lovely photo of Yellow Boy!
    I once was told by a doctor if you have an autoimmune illness you will likely have more. Mine are minor compared to yours but I found the information my doctor shared interesting. I hope they can get a handle on the fibromyalgia.

    1. Yellow Boy: thank you! I am much more handsome than Mackenzie!

      I also have heard that autoimmune diseases travel in packs. I hope that these three are it; enough is enough for Pete’s sake!! I am so grateful that there has been such improvement in the scleroderma. I can handle these other two much better knowing that the really scary complications are off the table for now.

  3. I’m so happy to hear you’re managing better, walking and feeling less fatigue! Hurray for an excellent medical team. Good for you for taking care of yourself and for refusing to give in.

    1. Thanks. It has been a challenge to learn how to work the system and to build a well structured medical team, but I am feeling good about my care now. I’ve been thinking about how to blog about this… I think it will be part of the 30 days of scleroderma posts.

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

%d bloggers like this: