The Ugly Reality of Living With Fibro and CFS/ME

If I see one more Pinterest blurb about “Here’s How I Cured My Fibro/ME”, “Eat This To Cure Fibro”, “How So and So Beat Chronic Illness” “Wipe Out Chronic Pain” ETC. I just may puke. It’s called Chronic Illness for a reason: it WON’T go away. I can’t cure it, fix it, help it or get better (trust me, I’ve killed myself trying). It has brought me to the brink of my sanity and to the floor of desperation. Every. Single. Day of my life is a battle and alot of times, I lose.

That is not, however, to say that I don’t recognize how incredibly Blessed I am. I have the bestest Husband in existence, three awesome kids, some kick ass close friends and a home. Oh, can’t forget my fuzzies. I am grateful to be alive and I have hope.

BUT, this chronic life is far from easy and I want to make that clear. Giving up eggplant and peppers didn’t cure me. I’ve been to dozens of Doctors, Specialists and have the good fortune of living in Massachusetts, where some of the greatest Hospitals in the world exist. None of that has mattered. I gave up meat and forced myself to try eating it again. We’ve tried anti-malarials , Epilepsy drugs and low dose chemotherapy. I’ve been on 21 prescriptions a day and only got monumentally sicker before realizing that drugs are not a cure and often make me far sicker than just my illnesses.

So let’s be clear about some of the statistics, the things they DON’T tell you about or talk about. The things that any Chronic Illness Warrior thinks about, but never really hears about. The truths that only validate and reaffirm what we feel and know in our hearts and minds. Here are some of the real things they don’t tell you:

According to Professor Mark Loveless, Head of the AIDS and ME/CFS Clinic at Oregon Health Sciences University: “[ME/CFS patients] feel effectively the same every day as an AIDS patient feels two months before death; the only difference is that the symptoms can go on for never-ending decades.”

According to Health Rising: a 2008 analysis of several dozen studies found that “like ME/CFS, Fibromyalgia is more functionally impairing than ANY disease it’s been tested against”.

In a study by Frederick Wofe, Brian T. Walitt and Robert S. Katz, in 2014, 34.8% of Fibromyalgia patients are on Social Security Disability Insurance.

According to the Dubbo and Taylor Studies: only 5% of adult Chronic Fatigue patients ever recover, with 2/3 continuing to be symptomatic after ten years. Patients diagnosed at an older age have even lower recovery rate of only about 2%.

The suicide risk among Fibro patients is TEN TIMES that of the general population ***in people with no medical history of depression or other psychiatric illness***, according to Psychology Today.

So when I write, I refuse to sugar coat this life or cheerily discuss how I cured myself with Ginger Tea (insert eye rolls here). That only makes things worse and introduces the destructive, invalidating thoughts of “why can’t I make myself better”. This Hell is real, it’s awful and it’s scary. I wish I had someone here to tell me all that would happen seven years ago. I wish I had had a clear, genuine and honest perspective of what to expect-especially mentally. That’s why I write. I don’t write to whine, complain or elicit “poor me’s”, I do it to discuss the goods (They DO exist), the bads and the uglies of living a Chronic Life and hope that my experiences may somehow help someone else. Because we aren’t alone. We are strong. And this fight is real. Never undermine how difficult this fight is or all that comes with it.

~Stace

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Fighting with Fibro and Living With Purpose. Mom, Wife, Blogger and animal lover. Fighting with Chronic Illness on a minute by minute basis; sometimes winning.

24 thoughts on “The Ugly Reality of Living With Fibro and CFS/ME

    1. Thanks so much for reading and commenting. I’m so happy you liked it. I felt it was important to write about what we’re *really* up against in this fight and to let some people know that the fight *really* is as hard as it feels. It gets so old constantly seeing how people “win” by doing crazy simple things. That just isn’t true and that only makes us feel more inadequate. I’m with you Delene!!!

      Liked by 1 person

    1. Kim, WOW! What a compliment. Thank you so much for reading and taking the time to comment. I really appreciate it. I had really hoped to write this as exactly that, “real”, in the hopes that I could help others that way. Like you, I hadn’t really had any luck finding the truth when I was diagnosed in 2012-it would have made it a just a little easier, I think. I’m happy to have gotten your feedback. ~ Stacey

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  1. I agree about the meds. I’ve tried several things that caused other problems and did not help the fibro at all. I am currently, after resisting for a very long time, trying cymbalta. It works, somewhat. Less pain. Unfortunately, I am so zoned out that I probably wouldn’t notice pain anyway. After taking it for four days in a row, I slept or was zoned out (staring at the wall) for three and a half days. Two of those after I quit taking it. I tried one yesterday, after a few days without, and spent the afternoon on the couch with my eyes closed, not sleeping, but in some sort of la la land. Is this trade-off worth a bit less pain? I don’t think so.

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    1. Hi Jean. Thanks for reading and commenting!
      I’m sorry about the Cymbalta making you so sleepy.
      It didn’t help my Fibro when I took it-it didn’t make me sleepy though. The fatigue is bad enough on it’s own, right??
      If you can last through the side effects, I believe it’s supposed to start working 4-6 weeks in. I wish you luck, whatever you choose.
      I agree, it’s a huge conundrum!!! Pain or side effects…..hmmmmm
      For now, I’m on less medicine (not sure how long I’ll stay that way). The side effects just didn’t make it worth it for me.
      Stay strong, Jean. Great to meet you!

      Liked by 1 person

      1. I switched to the lowest dose of gabapentin, 100 mg, and upped it to twice a day. Helps a bit with the pain, and so far no side effects, but it’s only been a week. The only thing I’ve found that helps with fibro, and I’ve had it for twenty years, is accepting. I don’t plan ahead, I don’t commit in advance. I just do what I can today and live in the moment. It doesn’t fix anything, or give me less pain, but it is very freeing and I am not under stress to be what others think/want me to be. This is my life. If you can’t deal, you don’t have to keep me in yours. It took me awhile to convince people that you may plan visits or appointments or whatever for the morning, but don’t plan on me actually being there or answering the door. I do not do mornings. It’s kind of funny until people get it, which they do eventually. I guess I have kind of made peace with it, after years of thinking ‘I used to’ whatever, and now I can’t and that’s so frustrating. So I don’t think that anymore. Today is all there is, and I just have to get through it the best I can. What else can we do, really, until they figure this thing out. Not holding my breath.

        Liked by 1 person

      2. I completely understand…..I used to plan absolutely everything, now I can’t plan anything; even Doctors appointments! If Fibro has taught me anything, like you, it is to live in the moment-because in five more minutes, I may be in agony again. Acceptance of the person I have become is finally beginning to set in after seven years and I’m finally not thinking about who and what I was before. Being sick is now just another part of me. I really hope you find some relief with the Gabapentin. Great comments. Thanks so much!

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      3. Don’t know if I replied already. :). Anyway, gabapentin was a disaster. Dr upped Prednisone to 3 mg, and much better. Prednisone withdrawal never goes away, she told me. Yay.

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      4. May I ask why Gabapentin was a disaster? It’s always good to know. Sorry it was a disaster for you. It can be so frustrating to go through that cycle.
        Prednisone helps me quite a bit too. I’m currently on a blast to break my migraines and I had forgotten how much better I feel on it. One of my previous Rheumatologists said that taking 5mg every other day eliminates all of the dangers and side effects from taking it long term. I am considering asking my awesome PCP about doing that again. I wasn’t aware that withdrawals from it never go away. I went through a hell of a withdrawal when they didn’t taper once, but haven’t had any issues since. I assume, however, that my circumstances were pretty different than yours.

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      5. Out of the blue, with no known cause, I suddenly had pleurisy. Prednisone 20 mg was prescribed. Got better, had to slowly get off pred. When I got down to 5 mg, dr said to stop. Big mistake. I was so sick for six months I only left the apartment to see whatever doctor I needed to see. Since then (six years) it’s been up and down. Try to cut down, get worse, go back up, rinse and repeat. Finally that doctor left and his PA told me that once you have prednisone withdrawal, it does not go away and you will always need some amount of prednisone, because you’re body doesn’t kick back in with what it needs. He’d been demanding that I get off it for all those years. Thank you, stupid doctor. I am on 3 mg, which is low enough not to have side effects, but helps tremendously with the pain.

        And here’s what I wrote in my blog about gabapentin:

        ***Gabapentin. Ah, Yes.
        Posted on March 27, 2019
        I mean NO! What a disaster. I took the last 200 mg Wednesday the 20th, and it wasn’t until Monday, the 25, that I was back to anywhere near usual pain levels. I was in seriously debilitating pain for days. I could barely move, could barely hobble to the bathroom with my cane to hold me up. It was miserable. My joints all felt swollen and painful, my hands felt like clown hands, you know fat fingers with no joints, and were very painful throughout.

        I was losing my words, losing my place in space, my asthma went from barely there to using my proair two or three times a day and allergy pills every four hours. It was not a good thing, so thank you again doctors, and stupid Jean for letting them convince me yet again to try something that I didn’t want to try. I tell them every time: if there is a one in a million chance of side effects, I will be the one. I took one pill that was meant to help me sleep and instead made me so hyper I could not be still or shut up. That was fun. I called the pharmacist that time (always ask the pharmacist, not the doctor. They only know what the drug reps tell them, is my take) and she said I need to stop that particular pill immediately because it was doing the exact opposite of what it was meant to do. Chronic illness is a blast, people. One fun experience after another. Modern medicine contributes a lot of that fun. A lot.

        I just want something that will ease the pain without killing me as a side effect. How hard is that, modern medicine?***
        Here’s my blog, btw. https://strangelypeculiar.com/

        Virtually everything I have tried has caused worse symptoms that what it was meant to help did. Tramadol gave me hallucinations. That was fun. Cymbalta, I slept or was in a trance-like state for three and a half days. Things that make you sleep wake me up. I recently tried a tiny dose of Zoloft, which I was on for years at one point, and I realized that when I went off it, my pain levels went up. I had other issues at the time and didn’t really pay attention. Anyway, tried it now, after only two doses, I became lethargic and depressed. Sorry, it’s supposed to make you NOT depressed? Well, it used to, anyway. My body chemistry seems to be completely screwed up for some reason. I think it’s genetic. My dad, when he got sick, his temp would go down instead of up. I blame him. 🙂 Or maybe it’s another lovely fibromyalgia thing. I don’t know. 🙂

        Liked by 1 person

      6. I have alot of the same issues with medication sensitivity…..I often wonder if that’s the CFS overlap…..It’s awful, because you finally break down and try something, desperate for relief and knowing how sensitive your body is and it always seemingly makes things worse. I’m sorry.

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      7. Thanks. It all got better as soon as I stopped taking the stuff. Not letting them talk me in to anything else, although the PA is much more reasonable than the doctor was. She actually listens, too. 🙂
        I have learned to just go with whatever is going on. If it’s a bad day, I just wait it out til a good one comes along. I am fortunate that I am not as ill as you are, and I also live alone, so don’t have to accommodate anyone else’s needs. I used to stress over having to cancel or back out of things, but friends and others I deal with know my limitations by now, so it’s not that much of an issue. I used to wish I’d get my life back, but then I realized that this IS my life, so I try to make the best of it I can. What else can you do?

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      8. Agreed. For the most part, I do what you do. I don’t take anything (other than pain meds) until it becomes too bad to cope. Then I relent. Eventually medical technology will catch up for us.

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      9. I wish! They are not in any hurry to figure things out for us, it seems. I am so over pain, but pain is never over me. It’s like a bad boyfriend who just will not get the message. That’s what I always say, anyway. 🙂

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      10. LOL. Very, very true! That’s certainly a great perspective!!
        It’s crazy, too. The financial implications are gargantuan! It’s estimated that it costs the US $12-$14 billion dollars a year and 1-2% of the overall productivity. Don’t those numbers alone, quantify a need to find reasonable treatments? Research is sorely lacking-pun intended.
        Maybe someday. We would certainly help the Pharmaceutical industry!

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      11. No one really knows the cause, so it’s hard to come up with valid treatments. It’s just try things til something works. If they could figure out what triggers it, we’d be on the road to at least easing the symptoms. Not everything can be cured, which sucks, but what can you do?
        You’re in Mass, right? Are you as frozen as I am? I refuse to close the windows, so turning blue R us. 🙂

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      12. Oh my gawd!!!! I am in socks, long sleeves and a blanket! Three days ago it was 80!! The crazy weather here makes me nuts! Where in Mass are you again? Very small world! Stay warm 🤗❤️

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      13. Oh wow! Okay you’re way down…..I grew up in Stoneham 😉 Now we live in Ashburnham. I am grateful we miss out on a lot of the terrible weather like tornadoes and hurricanes. I just wish it didn’t rain so much. That’s all.

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      14. I, on the other hand, love rain. I grew up in very dry Colorado. Rain is a treat for me. We seem to miss a lot of the really bad weather where I am. Not sure why, but it seems to go around us. Not complaining, mind. 🙂 I think I’ve been thru or near Ashburnam, along time ago.

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