I’ve been spending the last six weeks not flare-free by any means but focused on trying to minimize my flare-ups or ignoring them altogether. I find that the more I ignore my fibro, the more it acts like a petulant three-year old child and stomps its feet demanding acknowledgement.

Tonight I also realized that I have a new fibro symptom surfacing: nausea. I did far too much today. Actually, I’ve done far too much lately, period. I’ve been pushing myself through low grade flares thinking it will all just go away. Hoping it will all just go away. But it doesn’t.

Today I helped my neighbors with some yard work and I really shouldn’t have at all. A couple days ago, I had snapped my neck and stressed my body when a bookshelf almost collapsed on me. I was already hurting from that, and then I added to it by trimming some hedges, moving paver bricks, raking and digging, and planting a couple plants in a new flower bed.

When will I learn to just stop?

So, tonight, I’m experiencing a huge flare-up, insomnia, chest pain, and horrible nausea.  I want to sleep but the nausea is keeping me awake. How horrible is that?

And it seems that while I’ve been ignoring Fibro and forcing myself to be more active, it’s been gaining strength from my exercises. Crap.

Even so, I’m still learning how to live with it. This last weekend, I drove six hours (including a lunch stop) to the ocean with my mother, who is 88, and drove us home as well. It was an okay weekend, but stressful even outside of the extensive driving. I should not be doing so much driving. Two car accidents last year on top of my fibro have exacerbated my degenerative disc disease and make it painful to stand and walk upright if I’ve been sitting for longer than 20 minutes at a time.

So what do I do when I get home? Even though a flare is already starting – it usually takes a day or two to really hit – I decide that I must relieve some of my frustrations by doing a complete house cleanup. Yesterday I worked on the upstairs, cleaning my bedroom, my office, doing all the laundry, and cleaning (mopping)the upstairs hardwood floors. Today, I woke up at 6:30, continued by sorting through paperwork in my office, digging through file boxes in the garage, bringing files upstairs, going grocery shopping, and then helping my daughter clean the couches, and then I cleaned (mopped) the hardwood floors downstairs. And cooked all my own meals.

By about a couple hours ago, I could barely walk. My entire body stiffened up and became extremely sore, and I had to call my daughter to come back home to take care of the dogs because I need to go to bed. I tried a nice hot bath in Epsom salts, and that helped, but as soon as I was done with dinner, I started to fall asleep.

When will I learn to pace myself? When will I learn that I need to find different ways to deal with my frustrations rather than going on a marathon housecleaning spree? When will I remember that I have fibro and it WILL catch up with me. I cannot outrun or outwork it. Damn.

Photo by Petr Kurecka (stock.xchng)

Here’s what the Mayo Clinic says about melatonin:

Melatonin is a neurohormone produced in the brain by the pineal gland, from the amino acid tryptophan. The synthesis and release of melatonin are stimulated by darkness and suppressed by light, suggesting the involvement of melatonin in circadian rhythm and regulation of diverse body functions. Levels of melatonin in the blood are highest prior to bedtime. Synthetic melatonin supplements have been used for a variety of medical conditions, most notably for disorders related to sleep.

For $3.99 for a bottle of 100 3mg tablets (that also combine vitamin B6), this is the best remedy ever – for me. I tried the Gabapentin prescribed by my doctor for the restless leg syndrome and it helped, but only mildly, and the side effect of edema-swollen feet and legs was not one I was willing to accept. It also did nothing to help the fibromyalgia pain and insomnia.

So, I’ve been trying this melatonin, along with some vitamin B1 and my regular vitamin D, for nearly a week now. I take 3mg at night, about an hour before bed. Last night, I slept from 11 to 7:30 and I do not remember waking up or getting up once. AMAZING. Friggin’ amazing. I also have not experienced any restless leg syndrome for the last few days – usually a nightly occurrence – and my fibro pain has been mild. Although the mild pain I cannot necessarily attribute to melatonin, because it goes through periods of semi-remission anyway.

Time will tell if this is a long term solution to the insomnia and sleep deprivation, but I’m feeling much more rested each morning. Combined with the dietary changes I’m making in my life, I hope to start feeling better soon. The fibro may never go away, but hopefully this will make life a bit more manageable.

I finally got to the point where I was determined to just try my best to suck it up and move on, attempting to live as normal a life as possible, even while aches and pains, restless nights and sleep deprivation poked at me reminding me that everything was not normal. I was attempting a conscious form of denial. Certainly there were – and are – things in my life that I cannot change. I have to work. I have to support myself somehow, regardless of how much pain I am in. 

But as hard as I’ve tried to deny this Fibromyalgia, it has worked equally as hard to remind me that it is still here. I guess I thought that if I ignored it, it would go away or, at best, subside. I have a philosophy that says that which we focus on increases. So I guess it made sense to me that if I quit focusing on the fibro, it would go away, or at least diminish to a very low murmur. For a few brief periods, it did seem to subside and I was able to resume some things I abruptly halted several months ago – like finishing painting my home after the new hardwood floors were installed. I’ve tried this twice now. After each painting session, I’ve had a flare up in my upper shoulders and neck that literally inflamed the muscles and laid me up for two to three days. I would go to massage and get it treated and finally this last time, my therapist asked me if I was done painting. The tone was more like a sweet mother asking me if I was done trying to make something work that clearly wasn’t working for me. No, my painting isn’t done, but clearly I’m done painting.

It was a day or two after that when I had the worst night I’ve had yet with this fibro experiencing shooting, stabbing pains in my feet and legs that made me limp when I tried to walk and restless leg syndrome that kept me awake until the wee hours of the morning.

This was the first time the fibromyalgia has driven me to tears. I cried alone thinking that life has to be better than this. If this was what it was going to be like – sleep deprivation, random shooting, stabbing pains, constantly alternating dull or sharp aches, a strange syndrome preventing me from doing everything I wanted to do – I wasn’t sure I wanted to continue on. The thought of this still makes me weepy.

Even writing this now, I feel as if I should still suck it up. There are so many who have things so much worse than me. My brother has a malignant brain tumor, is alone with his two dogs in Utah, and here I am whining about my fibro. At least my fibro won’t kill me. We don’t know how his treatment is helping, or if it is at all. There are blogs that I read of people dealing with life threatening illnesses, and here I am complaining about stabbing pain and lack of sleep. In that perspective, it sounds a bit stupid, doesn’t it? Like I really should be grateful my problem isn’t life threatening, and that it could be so much worse. Right?

Yes and no. Yes, because in my head, I know this is true, and I really am grateful that other than a stupid (what do we call it anyway? disease? syndrome? autoimmune?) ailment, I am the picture of health. But no, because when in the middle of the night there’s a bolt of electric shock that sears through my feet and legs and wakes me up by catching my breath, every shred of logic and rational thinking falls away and all there is is fibro. My pain. I hate it and I want it to go away. And like a filthy neighbor who won’t move, I’m stuck with it.

I guess the next stage of grieving is acceptance. I’m not quite there yet.

But I didn’t tell them I already have a sleep disorder. Not sleep apnea, but one just below that on the severity scale – according to the sleep clinic – upper airway obstructive disease. And I’m convinced that it’s not related to weight (contrary to popular belief) because I was diagnosed with it when I was a good 50 pounds lighter than I am now.

I’ll keep you posted.

As it turns out, the research field appearst to be paying more attention to fibromyalgia, as this website that was mentioned on a commercial in my area (Seattle): www.myfibrostudy.com 

It appears that they are doing research across the country, and I checked the location in Washington state where they are doing research and it happens to be the doctor that the rheumatologist who diagnosed me had mentioned was the best, but had now moved over to research only. Lucky for me.

I did the survey and applied. We’ll see what happens.

Mostly, the reactions I get run like this:

Comment 1: “Oh, I had that years ago. When I got myself out of the stressful situation, all the symptoms completely disappeared and have never returned.”

Translation: It’s all in your head and it’s only caused by stress.

Or…

Comment 2: “You know what Fibromyalgia really is, don’t you? It a few doctors getting together and deciding that if you hurt in these 18 places they’d just all tell you that you have fibromyalgia. Not to say that you aren’t really in pain, but…”

Translation: It’s all in your head and it’s a fake disease because doctors don’t know what’s wrong with you or there’s nothing wrong with you.

Comment 3: (After disclosing to a friend who had the flu that I ached all over from a flare up.) “Well, the good news is for both of us this will go away.”

Translation: It’s all in your head and you really just have the flu.

These were comments that were really said to me over the course of the last week. To the first person, I didn’t respond. To the second person, I commented after he continued to point to his head and imply that I shouldn’t let it take over my thoughts and consume me and that I could think myself better. SERIOUSLY. I told him that if I could have wished my way away from this, I would have. To the third person, I said, well, your aches will go away. Mine keep coming back.

Let me say here, Internet, this shit is NOT in my head. I’ve tried for the last year to do everything possible, including diet and exercise, to make this go away. I’ve tried to ignore it and “act as if” by doing everything I’ve been used to do. My body slaps me down and forces me to stop. Anyone who really has fibro knows exactly what I’m talking about.

The only analogy I can think of to describe this is that telling someone with fibromyalgia to just not let it get to their head and to not let the fibro take them over is like telling a drug addict or alcoholic to just have some willpower.

This ignorant attitude of others just pisses me off. And how do I educate them? Can I even educate them? I don’t know if I can. Never mind that the American College of Rheumatology recognizes it, so does the Mayo Clinic, or that the Job Accommodation Network, as part of the U.S. Department of Labor, has guidelines on Fibromyalgia accommodations, and so many other legitimate entities also recognize it.

I do know that I have decided that if anyone truly wants to know what is wrong with me, I just tell them – as was suggested to me by my younger daughter – that I have chronic pain. Or that my back is hurting me. That they understand. When you tell them it’s fibro, it’s like instant eye-rolling, sighs, and the implied, “Oh, that. That’s a fake disease and you’re just being lazy.”

The truth is that when some people ask you how you are, they really don’t want to know. It’s sad, but true. And as I was talking with these people who said this, all I could think of was that I wanted to talk with my circle of fibro friends that I’ve met and tell them about this. I knew they cared and would understand. That has to be enough for me. And I think it is. I know this isn’t in my head. I no longer need to convince the world also.

~~~~~~~~~~~~~~

Update on the Gabapentin: It seems to be working. I’ve not experienced any restless leg syndrome lately, unless I don’t take the meds at the same time each night, then I get some RLS. Or if I’m extremely over-exhausted, then I do. I’m not sure if it has helped with the fibromyalgia overall, or if my attitude has changed and I’m refusing to sit still regardless of how much pain it causes me. Could be a little of both. The jury is still out, I guess. Besides, I’ve only been taking it for a month and it’s a little hard to tell so soon.

It is through a holistic, integrated and comprehensive approach to the treatment of underlying physiological factors that differentiates our approach and ultimate patient success. Our treatment approach begins with testing for hormonal imbalances, immune deficiencies, thyroid and adrenal dysfunction, and underlying mitochondrial dysfunction. We treat the underlying causes of your condition rather than just masking your symptoms with medications.

Sheesh. I’m sorry, folks, but for those of us who have fibro, haven’t we all been through all these tests more than once? And wouldn’t we all love for the cause of our fibro to be a simple hormone imbalance? Do these folks think that the rheumatologists that diagnosed us haven’t already tested for all this?

I don’t buy it. Not one bit.

Anyway, how’s it working? Hard to tell. I am probably sleeping a little bit better, but not much. I’ve not experienced any RLS since taking it, but it’s only been about 10 days, if that. I do know that I’ve been in a fibro flare-up for the last several days. I think the flare-up is unrelated to the drug. I think it’s because of the change in weather – much colder the past few days with snow – and just tiredness and having done too much a few days ago. I still don’t get to sleep more than about six hours a night, if that. Then, once I’m up, I’m up. I have to work, so I need to stay up. Although I’m grateful I can work from home, so the stress and trauma of a daily commute is eliminated. Every once in a while, I’ll allow myself a nap, but I really wish I had the ability to let myself sleep. Yesterday, I was exhausted so at about 5 p.m., I told my daughter I was going to go take a nap. I slept an hour and for some reason, I made myself get up.

I’m not sure anyone really cares to know all this, but I’m hopeful that the Gabapentin will help with the pain. If it does, I’m so happy.

Oh, and on another related note, the doctor retested my vitamin D level, and my level has doubled in the months I’ve been taking the vitamin D supplement. This is really good news. This means that my vitamin D is up close to where it should be, and that any muscle aches and pains are truly fibro, not a combination. I’ve eliminated one cause of the muscle aches. YAY.

To be honest, I’m very hesitant about taking any drug, for any reason. I had to go through a period in my life where I had to take about four or five medications every day. It saved my life, but it was horrible to have to take pills every day. Now I’m off all pills and I like it that way. But – if a medication will improve my quality of life, and it is doctor prescribed, then I’m willing to give it a try.

However, that said, I’m doing a ton of research on the drug. I don’t know if I’ve turned into more of a natural treatment advocate or not, but I want to make sure before I ingest a chemical I am fully educated on the side effects. Does the benefit of taking the drug have the potential to outweigh the issue of living with problem untreated? That’s what I have to decide.