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.

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The Scleroderma Chronicles: Rocking the Spoonie Clock

I, along with a lot of other people with chronic illnesses, consider myself to be a “spoonie”. If you’ve never heard of spoon theory, it is a metaphor that describes the intricate bargaining game that those of us with limited energy resources play everyday to balance our activities with the little gas in our tanks.  Christine Miserandino developed the spoon theory and described it in an essay on her blog in 2005; trying to explain to a friend how she managed fatigue with her lupus, she grabbed spoons and used them as props to represent discrete energy packets. If you only have a limited number of energy units (spoons) to use in a day, you are painfully aware of how many spoons everything that you do costs. A shower? That is a spoon. Walk to the mailbox to pick up the mail? Another spoon. If you want to grocery shop, plan ahead. When the spoons for the day are gone, you are done. If you planned badly, you are basically toast. Get ready for some bad days ahead.

Owner and her cat.
Wrapped in layers of knitted goods, struggling to stay warm, MacKenzie and I enjoy a late night purr break at the height of my flare in December.

Early last December I ran through my spoons and just kept going for another couple of days. I knew I was headed for trouble, but I was in a situation where there were no other options for me. Take care of today and deal with tomorrow when it comes, I told myself.

Oh dear. The flare arrived and fatigue descended with a vengeance. I slept 10-12 hours a night and collapsed in exhaustion for a nap at least twice a day. If energy is counted in spoons, I was down to only about 10 for the day. Not only were the spoons my problem; it appeared that as soon as I got onto my feet and went into motion an internal clock started running. No matter what I did, I could not go more than 2.5 hours without a nap.

Christmas shopping!! AARRGGG!!!

Thank goodness for the internet. I made plans and checked the availability of items I wanted to buy using my phone while in bed. I made sure stores close to me carried the items that I wanted. I made shopping lists in a little spiral notebook that I carry with me (hello… brain fog!!) to help me remember what I’m looking for while in the stores. I planned shopping routes that were short loops that would take me to three stores/stops max and then get me home before my time and energy ran out. I planned the trips for times when the parking lots would be almost empty so I wouldn’t have to walk far.

So, one day I planned and cooked food for the week. Who knew making spaghetti was so exhausting? Before I could get the dishwasher loaded the timer on my spoonie clock went off and I was done.

The next day I made one of the loops. Whew. I got right up from the nap, started up the car and headed off to Kaiser for my monthly blood testing. Then on to Target… hurry, hurry, it has already been an hour. I finished that loop at the book store where I shared a laugh with a mom who was making the same stops as me on her own shopping route. She had also gone to the public library, though. She looked at me kind of weird when I said I had decided to not go to the library as it was too far to walk in from the parking lot there. Ugh. No way was I going to explain about the spoons to her. No time. My clock was ticking; I was at the 2 hour mark and had to check out and drive home. Hurry, hurry. I’m now having trouble walking because my legs don’t really want to go… Brain fog is starting to close in and my head feels buzzy…

Home. Nap. I didn’t even take the packages out of the car until after the nap.

Two more days, two more loops, and I had gotten everything and even got stuff mailed out on one of the loops. Careful planning, lots of patience, and an acknowledgement of my limitations went a long way in getting me through everything. Did you know that if you go grocery shopping late at night there is no line. True fact!

For more than a month I was careful with the spoons and never ran down my spoonie clock. I knitted in bed. I ate my little pre-planned meals and ordered things off the internet when I could. I took lots of naps, kept up on my meds, and did everything I could to manage my symptoms. The Turkish Hell socks lengthened as the list in my notebook got items crossed off.

Today I am through the flare and I must have at least 20 spoons a day. Maybe even 25. I’m rich!! The spoonie clock is up to 6 hours. That’s pretty darn good.

You know, people are always telling me how great I look.

If only they could see my spoonie clock ticking away.