Next week, for the third time, I’m getting “married.” The quotation marks are because we’re having a commitment ceremony rather than a wedding. No judge, no minister, no marriage license, just us with a bunch of close friends and family, making a commitment to be together through thick and thin. It’s been called our not-a-wedding or our mock-wedding, but it is a serious deal for both of us. It’s my significant other’s third “marriage” too. Collectively that makes SIX marriages. Am I nervous? Hell yeah – I’m not stupid. The problem is, my nervousness doesn’t just hit my sparkling personality and turn me into a cranky curmudgeon. It also hits my joints, my muscles, my brain, and all the soft tissue in between.

My significant other, (I’ll call him Terry) was very lightly rubbing my arm the other day. It felt like he was rubbing the skin off. I’m in pain at rest, I’m in pain when I move. The only position I can hold for longer than a few minutes without everything clenching up and screaming is laying on my back, and then the back of my head starts to hurt because it’s touching the pillow. I won’t mention what’s happening to my skin. Mornings are dreadful – sleep is a nightmare. I’m gaining weight, I can’t get myself into the gym, the only time I’m comfortable with food is when I’m NOT eating. Above all, I’m exhausted from just staying upright.

The thing is, I can’t blame all this on the upcoming virtual nuptials. I want to do this. It’s going to be fun and the party is all planned out. Terry really is the person I want to spend time with – he’s sweet and kind. I don’t have cold feet. I have sore feet. Instead, I think a few things are happening all at the same time creating this “fibro storm” – a term Terry came up with:

1. The commitment ceremony – I’m not a natural born hostess. I never give parties. I don’t like being the center of attention. What was I thinking? The pressure of being in charge of making sure people have a good time is FAR more stressful than telling Terry I do.
2. Financials – we’re not dripping in money, and we are not spending a fortune on the commitment ceremony. But there is work we need to have done on the house, and it’s going to be costly. I just had to start making car payments again – leased a new car, so the stress of driving an old beater 2 hours a day is gone, but I have to make the payments… With two of us in my little house, bills are going up up up…
3. Job – I am loving my new job, but my mentor is going to be retiring in two weeks! I spend a lot of the day with the thought, “don’t screw up” in my head.
4. Puppy love – in the midst of everything, we got a puppy. My cats aren’t particularly happy, but Lady, a sweet little hyper Springer, is pretty irresistible. She’s learning well and quickly, but she has the sharpest teeth I’ve ever encountered, and with the extreme sensitivity I’m experiencing, she’s torturing me.

The puppy is our first real challenge as a couple. Can Terry put up with me hiding from her little razor sharp teeth? Will he continue getting up in the middle of the night with her so I can sleep as best I can right now? Sleep is critical at this point. Will he understand when I come home and crawl into pajamas that I just can’t do any more? Not the kind of stress I wanted just before the commitment ceremony, but hopefully we can make it through.

The final stressor is just flat out fear. I don’t want to fail at happiness and companionship again. I’ve made a good and smart choice with Terry. I believe in him and his ability and willingness to be an “us.” But as much as I’ve dealt with past disasters, there’s no stopping that little Freddy Krueger voice in my head, “No screaming while the bus is in motion!”

A plan of action for myself to crawl out of this fibro storm. First, breathing is important. I know I’m not taking deep cleansing breaths right now. I’ve caught myself not breathing at all. I’m short of breath all the time, even just walking across the room. So plan A – BREATHE. Close my office door and do deep breathing exercises. Be mindful (that favorite word) of when I’m not breathing at all. Try to consciously push the oxygen through my system. Breathe into my stress. Breathe to the bottom of my lungs. Exhale bad emotions and stress. Remember at the heart of fibro is the possibility of dysfunctional circulation. Not breathing isn’t going to help that any.

I’ll move onto plan B when I get a grip on plan A….

I’m still amazed when I see my posts go around the world. It’s a reminder always that no matter where we’re from we live in common. Thank you for having a look.

In light of the latest I’ve been reading about the possible underlying causes of fibromyalgia, I thought it might be a good idea to do a quick inventory. The reason is because I really like the Katz et al and Albrecht et al research – dysfunctional blood flow, dysfunctional arteriole-venule shunts – and I’d like to pinpoint possible pain management focusing on the idea that I will feel better if I can just get my blood flowing properly. I want to go from hypoperfusion to a solid perfusion. Then my body will get the nutrients/hormones circulating that I need, it would help my body eliminate waste/toxins, rejuvenate tired muscles, maybe even help with brain fog. It explains the wide variety of symptoms and signs of fibromyalgia and many, many of the problems that fibro causes falls under that umbrella.

So the new experiment: Focus on breathing and breath.

The current state of affairs as of October 1, 2017:

1. Scalp hurts. I’m broken out, but my scalp hurts just laying still without touching the broken out areas.
2. Low grade headache for several days. Pain scale: 4; Relentlessness scale: 8
3. Ears still uncomfortable – pain/itching in my right ear; a slight return of tinnitus/numbness in my left ear
4. Neck – pain and stiffness, including pain/discomfort in my throat that makes it difficult to breathe when I’m laying down. CPAP helps with sleep.
5. Shoulders, elbows, wrists, hands – sore at rest and worse with movement. Muscle fatigue in upper arms. Pain scale: 7; Relentlessness scale: 9
6. Chest – constant tickle, regular cough, remnants of sinus infection/cold
7. Abdomen – sore at rest and worse with movement. Deep pain but not connected with anything. A little like a mild kidney stone, mostly on the right side. Pain scale: 6; Relentlessness scale: 9.5
8. Hips and legs – shooting pain. Bursitis flare. Tender to the touch, sore at rest, painful with movement. Muscle fatigue in upper leg muscles. Pain scale: 8; Relentlessness scale: 8
9. Ankles and feet. Not too bad. Pain scale 3; Relentlessness scale: 4
10. Overall “white noise” pain: 7; relentlessness scale: 9
11. Difficulty with balance – I’ve been tottering all day. Mild occasional lightheadedness.
12. Brain fog, difficulty concentrating on most anything
13. Eyesight is unreliable. None of my glasses are working properly.
14. Mood is very good.

I am the heaviest I’ve ever been in my life, in the most pain I’ve ever been, on both the pain scale and relentlessness scale. At the same time, I have landed in a job that I’m really loving, I’m with a person I love, that person loves me. I’m happy. So I can definitively say (again) happiness does not cure fibromyalgia.

Plan of action:

1. Deep breathing exercises when pain scales go up
2. Daily stretching
3. Walking at work – or ride exercise bike
4. Swim again (after my ear is healed)
5. Restart supplements. I can’t take a multivitamin – C, D, B complex, calcium, fish oil
6. Find yoga and t’ai chi DVDs
7. Sleep/rest appropriately

I’m having a very difficult time moving, so the first thing I need to do is start the supplements and see if that helps with energy. Secondly, I’ll start deep breathing immediately (did earlier today, and it helped, kind of like Lamaze). Third is sleep/rest. I’ve been running too much lately and need to slow down. Fourth is exercise at least twice a week, preferably a walk each day. Walking is not reliable and hurts my back, so I’ll need to get into the gym on a more consistent basis.

I’ll keep looking for any ideas in terms of what medications can help with pumping blood, repairing shunts? I have no idea, but I’ll look. Personally, I think this fibro explanation also accounts for why opioids don’t work, why meds are unreliable. But I’ll look.