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Musings on fibromyalgia

Today, after dealing with years of worsening chronic pain, I received an Official Diagnosis of fibromyalgia. I am surprisingly happy and relieved to finally have my experience validated by a professional, but more than a little frightened and sad because this thing does not get better. You manage it, and you learn to carefully dole out your resources (aka the spoon theory), and you be gentle with yourself for not being able to do what you were able to do easily ten years ago.

Part of me wants to blame something... vaccinations! formula feeding! genetics! stress! hormones! ... but even if there WAS some kind of trigger, there's nothing I can do about it now. Figuring out the cause is important, so we don't do it to our kids, but other than that I don't want to dwell.

I've suspected it ever since I read about the tender points method of diagnosis. I had a very strong reaction to pressure by a chiropractor in the early 80s, and dozens of other times since then. I hate massages and am baffled by those who say they love them, because no matter how much I try to relax, there will be a time that the masseuse merrily trips over a point that shoots out white-hot shards of pain and makes me cry out and jump, and all the nice effects are erased (and the tension of waiting for that moment makes the whole thing stressful even if they manage not to hit a point for a while). One massage therapist friend laughed when it happened, and called me "goosy."

There's a constellation of issues that go hand-in-hand with fibro's tender points and overall exhaustion and muscle aches, and they are a checklist of my medical history: sleep disturbances, depression, brain fog, sensory overload, and weight issues.

It turns out that I was already doing a lot of the things that people do to manage fibro before my official diagnosis, so there really isn't a whole lot I can add. I got started with a CPAP machine to control the apnea in 2005, and my sleep issues have diminished significantly (though I do still have a little stash of my precious Provigil for the bad days). I was on antidepressants in 1998 and 2002, and have used writing (the 3-good-things journal every night, a long-term variation on that gratitude meme so popular now), meditation, and Constructive Living (an effective mix of Japanese Naikan and Morita psychotherapies) to keep the darkness at bay. I stopped eating gluten a few years ago, which has made a huge difference in my stiffness and pain... they are down to about a 3 or 4 after being up to 8 regularly (on a scale of 10). Going gluten-free has also lifted maybe 80% of my brain fog. I now find that if I do eat glutened foods, I pay for it the next day (with stiffness, pain, fog, and diminished spoons). As for sensory overload, I am very careful about being around crowds and loud noisy places, and map myself an escape route for if/when I get overwhelmed by noise, people, scents, etc. I do much better with smaller groups, and generally it's not a problem.

I am not at all happy with the weight I'm at right now (about 300), but every shred of research I've done validates my experience, which is that if you lose more than 10 or 20 lbs below your body's set point (the natural weight your body moves towards when you are eating good food when hungry, staying hydrated, sleeping well, and moving pleasurably), your metabolism shifts into famine mode and your body will do EVERYTHING it can to get you not only back to that initial set point weight, but shift that point up a few more pounds so you are ready for the next period of famine. This is EXACTLY what happened when I lost 60 lbs. after my divorce... I gained it all back, and with Linc's pregnancy (even though I puked my brains out nearly the entire nine months), I settled at around 300 lbs and have bounced up and down around that point for the last ten years. So until Science figures out a way to shift that set point down again in a safe and sane manner, I am doing my best to enjoy and appreciate my body the way it is, even though society takes every opportunity to let me know how disgusting and inconvenient it is. (To that end, I'm heading back to the wonderful Abundia retreat this fall, woohoo! There's still space if you want to join us.)

We generally eat really well, I think, so I'm not looking to make big changes there... mostly homemade, fresh food, fruit, veggies, lean meat, eggs, etc. (since Clay didn't like fish and he's headed to France, we can have it more often now). I've also added a number of supplements to help manage pain and lower the inflammation (which worsens fibro symptoms as well as aggravating the psoriasis): vitamin D, calcium, magnesium, malic acid, fish oil, turmeric, and French maritime pine bark (pycnogenol).

Other potential supplements that could help: 5HTP, samE, glucosamine/chondroitin, ribose, brown seaweed. I'd love to hear from anyone who uses these.

The thing that finally tipped me over into actively seeking medical advice about the fibro was the fact that, in the last year, I've been unable to get through an entire Nia class or even just a gentle walk for more than ten minutes without having major joint and back pain. I was actually hopeful about exercise when I found that biking was remarkably comfortable, but since my bike got stolen and we have no safe place to keep one, that's out for now, dammit. I've been doing some water Zumba and just playing in water (and, of course, enjoying the blessed heat of the hot tub) at the Evanston Athletic Club, but I have to watch out for recurring ear infections. I've also read that the Feldenkrais Method is a good thing for fibro, and went to one class at EAC... does anyone have feedback on that?

The rheumatologist gave me an order for physical therapy to help with the back and knee pain, which I'm intrigued about. It would be awesome if I could get back to a place where I could start doing Nia again. Also, Illinois has recently legalized medical marijuana for treatment of fibromyalgia. In the past, I've used it when I could not sleep, or was in a lot of pain, and had very good results. But I'm a little old to be trying to score weed, and it would be really nice to have a way to get it that doesn't make me feel slimy, or put others at risk.

One thing that has me a little anxious about sharing the fibro diagnosis is the fact that, in the past, I've sometimes found people with fibromyalgia or similar invisible chronic conditions to be a little bit... annoying (by the way, if you are reading this, you are NOT one of those people!). These folks loudly announce their diagnosis immediately upon introduction, demand special treatment, and make sure that nobody forgets their condition during any subsequent conversations... it's their only topic of interest, their entire identity. They embrace it as a point of pride and entitlement. I read stuff like this and cringe. I totally understand the type of person this writer is talking about, and I truly worry whether I've moved into that category... this is probably the root of why I've waited so very long to seek medical help. I really don't wanna be That Gal. I'm extremely hesitant to say anything about fibro on Facebook, but I also want to find other people who are struggling with it and learn from them... without boring my healthier friends to tears, or in any way appearing to seek attention or pity. My compromise is to put it over here on LJ and stick a little pointer on my FB page. Anyone who has slogged through all the above is probably a sympathetic friend who either has been wrestling with a health issue themselves or someone who loves me enough to forgive me for indulging in all this navel-gazing behavior. Either way, I sincerely thank you for sticking with me.

OK, time to go be a mom for a while!


( 15 comments — Leave a comment )
Sep. 12th, 2014 11:50 pm (UTC)
Since you've been dealing with this constellation of problems for so long without having a definitive cause, it's great that there's finally a diagnosis. If only it were something with a simple cure, but at least you're already doing the right things to make the condition as easy as possible to live with. I hope you're able to do the PT and that it helps, and good news about the medical marijuana.

Sep. 13th, 2014 02:07 am (UTC)
Thank you. I've loved what you've written about swimming and writing, and if I can ever get back to the point that I can put my head into water without immediately setting off another infection, I'd like to try it. (I wonder if there are any kinds of waterproof earplugs? there must be...). Miss you guys, wish we could come play at Equinox! Pass along my regards to all, please! xoxo
Sep. 13th, 2014 04:52 am (UTC)
Yes, there are, or probably what is good enough. We got the following for William when he was having noise issues at the pool. You soften the material and then push it into your ear and it forms into the shape of your ear. (Aside, it was super useful. The ear plugs kept out some of the noise, and his ability to behave during his lessons turned around on a dime. Totally worth it.)

You could also do the headband or a swim cap for added protection.
Sep. 13th, 2014 05:56 am (UTC)
Oh, those look perfect! I've just been using cotton balls in the shower, and they have been less than ideal. I'm embarrassed to admit I didn't think of doing a search for these; I should have known there was something out there. Thanks, Megan! :D
Sep. 13th, 2014 12:30 am (UTC)
Paula here
(((hugs)))), Just call me a slogger.
Sep. 13th, 2014 02:05 am (UTC)
Re: Paula here
Hugs, Paula, and thanks!
Sep. 13th, 2014 02:57 am (UTC)
My sister has been struggling with fibro for 7 years or so. Some days are better than others. I can ask her about her supplement regimen, if you like. I sympathize with your emotional struggle as well. I sometimes feel similarly about my vision issues. I don't want to be only a blind woman or even primarily a blind woman, but sometimes it is necessary to disclose my disability and ask for help. That's all you're doing here: asking for help with a health issue. You have my sympathy and support.
Sep. 13th, 2014 05:58 am (UTC)
Thanks, Tara. That's a great way to think about it. It's just hard to wrap my head around the idea that this is not going to get better and I need to ask for help. It's just going to take some time.

I'd love it if your sister had any info on supplements that have helped her!
Sep. 13th, 2014 03:15 am (UTC)
5HTP in the morning, for months at a time, has helped me during times when I didn't have energy physically or mentally to enjoy getting out of bed. I've taken magnesium every night for years because it's the only guarantee of no constipation. Just started vitamin D, fish oil, and calcium because of my bone injury, but will continue taking them for prevention since I also recently went through menopause. Turmeric blends did sod-all for my inflammation; someone with a similar injury said I should have gotten plain turmeric capsules. The Chinese acupuncture doctor sold me some anti-inflammatory pills and some pain patches that were more expensive but also more effective.
Sep. 13th, 2014 06:01 am (UTC)
Thanks, Tyger. I started both the calcium and magnesium at menopause for backaches and hot flashes, and the vitamin D is supposed to help with absorption. Now I hear the malic acid is supposed to be more effective with the magnesium, too. The turmeric I'm using is the plain stuff, and I do think it's been helping (I've been taking it for a couple of weeks now).

I have a very hard time with needles, but I'll keep the Chinese medicine info in mind. Glad to see you are driving and doing better!
Jill Cook
Sep. 15th, 2014 05:49 pm (UTC)
I am glad you have some answers...but it sucks that there is no "fix".
Sep. 18th, 2014 12:39 am (UTC)
Thanks. You wrapped up my feelings quite succinctly there!
Sep. 17th, 2014 03:28 pm (UTC)
Ugh, I'm so sorry you have to deal with this. At least you have an official diagnosis now?

About the not wanting to be one of THOSE people, the thing is...ablism is real. We all want to be healthy. Unfortunately a lot of us want to be healthy and end up kind of resenting people who aren't and thinking "get over yourself!" Being sick is seen as sort of embarrassing! And I think a lot of abled people kind of go "GAWD, why are they making such a big DEAL out of it" about sick/disabled people in the same way that men can do to women or white people can do to black people. I guess what I'm saying is that I think you are a considerate and generous person and are not likely to leap to the other side and demand that fibro be the center of everyone's life....but yo, chronic pain changes everything. It demands accomodation. If that's what you have, then life really does have to be shaped around it. Sucks but ignoring it won't suck any less. Pain is really powerful. It is reasonable to pay attention to it. It is a force in our lives. The people who care about us have to know about it. It's not "boring".

*hugs* *internet hugs don't hurt!*
Sep. 18th, 2014 01:00 am (UTC)
Thanks. I was really hesitant to bring that up at all (and I think I talked about how my hesitation probably led to me avoiding a dx at all for nigh onto these last ten years). I want to believe that there has to be a way to work with the world around me to find accommodations as needed without sliding into whiny territory. Can I develop compassion for those who are having such a hard time that they are difficult to be around, while at the same time trying hard not to be difficult myself? Is that the same as spouting size-acceptance ideas while at the same time loathing my own reflection? I've been struggling with this, you betcha...

Another thing I've noticed... I don't hurt or struggle any more physically since the dx than I did before, but several people have gone out of their way to be extra gentle and kind to me after I wrote about it here. It's kind of nice, in a way, but also... why does attaching a name to the things that have been bothering me for ages suddenly cause a response? Is it that my experience has been validated by a Real Medical Professional? Is it that I've been suffering in silence? (Not hardly...)

I dunno. Thinky stuff.
(Deleted comment)
Jan. 7th, 2015 06:02 pm (UTC)
I'm so sorry to hear you are struggling with fibro as well, but I sincerely appreciate your kind words and empathy.

The club we belong to has a "therapy pool," warmer than the regular pool but not as hot as the hot tub, and one end is about 6 feet deep. I can just hang there, and gently move about, and all my pain, especially the spinal arthritis stuff, just melts away. I do a little yoga-type movement and it definitely helps. I got at least twice a week, but if it was easier to get there, I'd be there daily.

Glad to see you here! xoxo
( 15 comments — Leave a comment )

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