Fibro what????

Some people know. A lot don’t.

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I’ve been off work on sick leave most of the summer. Honestly, I think this has been a few years coming. Things slowly started getting more and more overwhelming. But hey, I had lost a job, got a new job (albeit not permanent), got permanent, wasn’t sure if it would last and was volunteering A LOT. I had every reason to feel overwhelmed, foggy, dizzy, exhausted and slightly sore (like all over….a lot).

I threw my back out three years ago and it never really got better. I seemed to experience a lot of muscle injuries (going up one flight of stairs could debilitate my walking ability for days but I’m out of shape so that’s normal right???). I didn’t really realize or maybe I didn’t want to accept that it kept getting worse. Little by little so the impact on “normal” was so subtle I never really noticed the slow but detrimental deteriation going on.

imageLast year I fell out of my chair at work a couple times because I was so dizzy, couldn’t tell if the car was actually stopped at street lights because it felt like I was on a boat. I couldn’t concentrate. Felt really burned out. I thought depression or anxiety. I saw the doctor and started on Celexa and it helped. A lot. Phew…dodged a bullet.

Then early this year, the pain became unbearable. Excruciating pain in my back and my left arm left me sleepless for weeks. The pain was so intense, I didn’t really clue in that I was also hurting all over. Getting out of bed in the mornings felt like I was eighty years old, crippled and achy. I couldn’t get moving. My spirit felt like it was dying. My sparkle was dim. People were noticing I wasn’t myself. I thought it was just sleep deprivation so hubby and I took an impromptu trip down south just the two of us to se if that helped.

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I didn’t sleep any better through the night but I was able to nap and rest more during the day than I had in months. I came back and felt better. Felt more myself. Not 100% but better. People commented….people had noticed I seemed better. Phew…I just needed a week away.

But it didn’t take long for the pain, exhaustion, dizziness, mental incapacitation and depression to come back and when it hit, it hit like a ton of bricks. I was no longer able to hold it together. I started crying…like all the time…everywhere…at work. Someone would come in and ask how I was doing and I’d fall apart like a blubbering idiot. I had extensive. bloods work, I went to physio, I had X-rays (that showed arthritis in my back but nothing to explain the severe and debilitating arm pain I was experiencing), not to mention my entire body felt like it was breakdown…inside I felt helpless and consumed by darkness.

I saw the doc and fell apart. She put me off work for a week and upped my anti-depressant. She added an anti-inflammatory to help with the never-ending pain and a sleep aid to help my muscles relax so I could get some continuous sleep. I felt hopeful. I thought onice the medications kicked in and I started sleeping, everything would be fine. Everything would go back to normal. A week turned into eight and here I am. A little better but no where near healthy.

Fibromyalgia….The mayo clinic defines it as a “disorder characterized by widespread musculoskeletal pain accompanied by fatigue, sleep, memory and mood issues. Researchers believe that fibromyalgia amplifies painful sensations by affecting the way your brain processes pain signals.

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I’ve been on the medications for about eight weeks now and my doctor says this is about as far as I’ll get with the current protocol. And to be honest, I do have more good days then bad but let’s be real, my “good” days aren’t what they used to be.

A good day means four or five hours straight before being woken up by pain, somewhere in my body. It means I can get up in the morning even though the pain in my back, ankles, calves and shins threatens to flatline me. It means if hubby gives me a little leg massage to help loosen me up, he can actually touch me without it feeling like he’s surgically carving me up. A good day means once I am up and around for an hour or so, the pain seems to settle to a dull, constant ache. A good day means no migraine but maybe a headache. A good day means maybe I can take the dogs for a 10 to 2o-minute walk (no hills) or throw the ball with the launcher for them without suffering from excruciating leg, arm and back pain. A good day means I can visit with one person for maybe an hour or two before  exhaustion takes over. A good day means I am sporadically vertical for four or five hours before I need to lay down (gravity chair preferred) and rest for four or five hours so that I will be coherent enough to enjoy supper, a chat and maybe watch a show or two with hubby.

More good days than bad. Before the medications, there were next to no good days. Now, I am averaging about two to three good days a week, with one or two “so-so” days and the rest….hell. And once a bad day hits, it can feel like forever to get the good days back.

A bad day means literally no sleep the night before, every toss and turn feeling like being struck by a hot poker startling me awake gasping for breath. My hands going so numb that it feels like I am wearing giant mittens. A bad day means a migraine and body pain in my arm, back, legs, neck and ankles so intense hubby can hardly touch me, and I usually drug myself into oblivion to try and somewhat sleep through it. A bad day means every. single. time. I get up to pee it feels like pins and needles attacking my entire system while a 200-pound man surprise punches me every two to three minutes. A bad day means that wearing a bra feels like someone is going 10 rounds on my ribs. It means crying, isolation, hopelessness and feeling so overwhelmed by a sense of complete and utter sadness and despair that sometimes I wonder what is the damn point?!?!?! Bad days….leave me feeling so desperately betrayed by my body.

And that’s just the physical. The mental issues have been challenging to say the least. And they don’t seem to respond to the ebb and flow of good and bad days. They remain a constant. Hubby says that the brain fog is so bad, it’s not even fun to torment me anymore. You know it’s bad when…I know stupid is an ugly word but it’s the only one that sums up how I feel. Stupid. Numb. Dense. Seriously, sometimes I sit for nearly an entire minute trying to remember the damn word I wanted to use. Now that happens to all of us but it happens to me FREQUENTLY every. single. day! It feels like my beautifully sharp mind has turned to mush.

The fog, forgetfulness, depression, dizziness….it’s paralyzing. It makes me feel like an integral part of what makes me….me…is missing. It’s just gone. And I often wonder if it’ll ever come back.

I gotta say. I’ve gone through some shit in my life but this one has truly kicked me on my ass. It’s been hell. But in the darkness, comes the light. And y’all know I haven’t been alone. And I can’t express the gratitude I have in my heart for hubby and for my family and friends who have been the most amazing support system ever.

The next step is seeing a specialist. While I wait for an appointment (New Brunswick healthcare for my worldly friends who wonder “why is she waiting….”), God help me, I am going to implement a major lifestyle change. It’s either that or more intense medications.

Although the lifestyle changes will be WAY more arduous and require a determination and commitment that frankly I am not sure I even have in me…it’s the step I’ve chosen to take. From my research, I can’t discount the power that nutrition and supplements, relaxation and meditations, along with some light exercise could have on improving my health. And although popping a pill might seem easier, in the long run it won’t be. Medications come with their own hazards, and going any further down that road is my last resort. I need to see how far I can get with a lifestyle change before I am willing to take on those side effects.

So be prepared my friends because relaunching this blog is part of my healing journey and lifestyle changes. I plan to take y’all with me through the ups and downs, the good days and bad, the successes and the fails. Every. Painful. Step. Starting mid-September, I am going to embark on implementing some pretty significant changes that involve eating very differently  (I am going to have to learn to cook…you know like fresh food…), implementing a supplement regime that gives new meaning to the words “excessive and complex”, using meditation and relaxation techniques along with a stretching and exercise program daily.

Even though this blog is going to be part of my healing journey, I promise this isn’t going to be all doom and gloom…y’all know I got some hilarity that MUST be unleashed (if I can find my words)….like my next planned post “When a Shit Isn’t Really a Shit…” Stay tuned for the fun…

What about you? Any summer struggles this year? How do you live your best life?

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Comments

  1. Terralynn Lander says:

    Natalie,
    I could comment for days but I won’t because 4 words will sum it up: I am with you. I know how you are feeling and I AM WITH YOU! chronic and unseen disease is hard to deal with and understanding often is hard to find, but if you need ANYTHING, please let my chronically broken self help you!!!

  2. Donna Chiasson says:

    You are a strong willed women Natalie and I believe you can deal positively with your situation. I look forward to hearing about your journey! Love you, sending big hugs!

  3. Ohhhhh, I know where you are coming from Fibromyalgia is just one of several spectacular DX I have on my file. That one is pretty new for me, too – they thought my issues that are related to IT were stemming from a twisted form of osteoarthritis. But, nay. A friend of mine was diagnosed several years ago, and was also told the meds and protocol aren’t all that high-level. She swears Yoga is the best thing that she has tried, keeps her as flexible as she can be, and helps with some of the random crying episodes (aren’t they fun, makes me want a shirt that says Not Hysterical in the Bad Way). I haven’t tried yoga yet what with the whole super rural living thing we have going on, but I thought I’d mention it, as she swears by it. If you haven’t read it yet, check out the Spoon Theory. Now when I am at the end of my rope, I only need to tell my husband that I am out of spoons, and he steps up without thinking I am a total headcase.

    Here’s the link: http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

    • ELcie. I near spit out my water when I read about the random crying episodes. They are a hoot. Not. Lol. It helps to know I am not alone. I’ll definitely investigate the yoga. Thanks so much. And I’ll check out the post. Sounds like the spoons analogy will be very useful. Hugs. 🙂

  4. Get as many massages as you can. As they say a lot of it is from the gut. LYRICA helps my sister in law. I only took it for a short period of time and saw no effect. Sorry I didn’t know about this or we vould have chatted. Thank God my symptoms are not so bad. I am considering going to a clinic now. My digestive system and or bladder don’t like me. I am convinced that this is all from the Central Nervous System then to the muscles. My Masseuse strips my muscles then the chiro adjusts me. All the best with lifestyle changes.Most of us just want do too much.

    • Yes I’ve been reading all about the gut Donna!! Lyrica is on my list of last resorts. I know it’s been helpful for a lot of people. I’ll definitely look into more massages and the chiro. Sounds helpful. And yes, most of us do want to do too much. Hugs. Xoxox

  5. Love Ya Chicky! You are a very brave lady! I hope we can spend some of those good days together!

  6. What a heartbreakingly, uncensored view into how your life is. I love you and you are one of the most courageous people I know. Thanks for shining a spotlight onto this terrible disease and may each day bring you closer to less pain and finding you again. Love you to the moon and back…. Xoxo

  7. Oh good grief, what a nightmare. I hope you find some relief soon. Have you tried acupressure? I know, everyone’s going to give you their own personal “how to get better” advise, but I’m going to be honest, I’ve never tried acupressure; I’ve only heard from friends that it worked for them.

    Take care of yourself and do what you’ve gotta do. Hang in there. Looking forward to the fun stuff.

    Patricia Rickrode
    w/a Jansen Schmidt

    • Actually, I meant acupuncture – not pressure. Heck, try them both. Who knows?

      Patricia

    • I concur on the accupuncture. It seems to make a gigantic difference for all the soft tissue issues. I had sciatica that was keeping me from walking and the accupuncturist got rid of it in two visits. It was miraculous. I’m not saying that you’ll get a magic cure for fibromyalgia, but it can’t hurt. Incidentally, my sister’s fibromyalgia was caused by a food allergy – when she cut that food out, the symptoms gradually disappeared. I hope you get some relief!

  8. karenmcfarland says:

    Natalie, oh Natalie. My dear friend. I am so sorry to hear about this. But may I just say how much I respect you for your honest bravery in sharing this with us. I was diagnosed with CFS, now ME almost thirty years ago. There wasn’t much known about it back then. And actually, not much has been discovered since. But Fibromyalgia goes hand in hand with this disorder. While everyone’s symptoms may vary a few degrees, I believe wholeheartedly that there is a root cause to our malady. After much research, visiting doctor after doctor, going to the some of the best clinics in the western U.S., I have found that much of this is environmental. We live in a very toxic world. It is a mixed bag, layer upon layer of chemicals that we are constantly exposed to every day. And we don’t think about it because it’s become a part of our daily lives. And what our poor bodies go through just trying to keep up with getting rid of these harmful substances. I know about the sleepless nights. I know about the depression, the foggy mind, the blurred vision, the burning sensation throughout the body, and more. So what’s a girl to do? Well, that of course is a personal decision. None of us are really in the position to tell each other what to do. But I can tell you this. Through much research and being involved with Complementary/Nutritional medicine for many decades now, I have found that by eating a nutritious healthy diet, and by that I mean eating organic foods, rich in antioxidants and by supplementation, we can and will get better!!! And…by staying away from toxic chemicals. And that my dear friend is probably the hardest part. But if you want to feel better, it’s necessary so that our bodies can repair themselves. I have so much support that I would love to give to you, but then I’d be taking over your post. Lol!!! Just know that I am here for you. And for any reason, you are always welcome to get in touch with me. Because what I’ve found is that doctors can only go so far. They only know so much. Their knowledge is limited because they only know what they’ve been taught in school, which is limited. There’s a lot that you can do on your own to feel better. So let’s do this together, because you don’t have to do this alone. Love ya!!! ((Hugs))

  9. Oh honey. Sending you lots of love and strength. No advice, because the good Lord knows you’ll get a lot of that, lol…keep your chin up. You are amazing.

  10. I think you are brave, strong, beautiful and generous. Thanks for sharing this Natalie, your spirit is clearly unbreakable, and I think you’re on the right track with your plan. Sending you love and kleenex. xo

  11. You’re getting a lot of advice, but be sure to look up Leaky Gut Syndrome. Research in showing that most (if not all) autoimmune disorders start with that. I was misdiagnosed with Rheumatoid Arthritis about 10 years ago and was on medicine for 5 of those years. Prescription drugs that made me feel better, but simply masked my symptoms by lowering my immune system rather than getting to the root of the problem – which for me, was major food sensitivities/allergies. I had a lot of your symptoms: joint pain, pain, brain fog, my balance was off, intestinal issues, weight gain, and plain old exhaustion, insomnia, etc. Five years ago, I was properly diagnosed with celiac, went off gluten and felt better, but still, not great. A year ago, I found out that I had multiple food sensitivities. Since I completely changed my eating habits and diet, I’ve lost twenty pounds, have the energy to work out again, have regained my balance, and the brain fog is gone and I’m finally sleeping! I know what you’re going through and wish you the best.

    • karenmcfarland says:

      You are absolutely right Jillian. Leaky Gut is at the core of Fibro and so many other issues. And as you bring out, it’s really requires a lifestyle change in order to get well. Excellent advice. 🙂

    • This is amazing advice, Jillian, and so well put. You and I have talked about all the similar symptoms we had, when food allergies were the root cause. It’s life changing.

  12. Thank you so much everyone. The support from this blog post has been overwhelming to say the least. I am blown away by the unconditional love. I love all the advice and am slowly picking away at it. So can’t say thank you enough! xox

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