Fibromyalgia

Being Sick is Scary… For a Lot of Reasons

scared.jpg“Just so you know, Dan, I read that quitting Gabapentin can be rough. Withdrawal symptoms include suicidal thoughts. So, keep an eye on me.” He paused in the doorway on his way to the kitchen.

“Okay, I got your back,” Dan said. “Need anything while I’m up?”

“Yeah, could you bring me a knife?”

***

The number of nights I’ve had bad dreams in the last nine days is exactly equal to the number of times I’ve taken Gabapentin before bed. At first, the bad dreams were pretty typical. But in the wee hours on Saturday morning, I woke up from a bad dream and couldn’t move anything. Not my arms, not my legs, not my fingers, not my toes.

The paralysis only lasted a few short seconds, but that didn’t really minimize how scary it was for me. Much scarier than the bad dream I’d just had. (My parents were throwing me a birthday party, but no one came and my parents had looks of pity on their faces. I know, but trust me: It was brutal for someone who wants to be honest about her struggles but also not be pitied.)

***

Sleep does not come naturally to me anymore, probably because fibromyalgia is characterized by an always-on stress response. If something I do or some medicine I take further impedes my body’s ability to get restorative rest, I drop it fast.

While Dan was helping me walk down the hallway that afternoon, I announced, “I’m not taking Gabapentin anymore.” I didn’t take it before bed Saturday evening.

***

Sunday morning, about 2 am, I had what I’m calling a night terror. I’m assuming as a result of Gabapentin withdrawal.

I dreamed that I was awaking from sleep in the guest room because inanimate objects in my home were attacking me. A lamp. The shower head. A paper towel.

I screamed and screamed and screamed for Dan to come help me. But it was a nightmare, so naturally I couldn’t scream loud enough.

I kicked and flailed and screamed some more, until Dan finally came into the room to comfort me.

Only he wasn’t actually there; I had begun another dream. The Inception-level dream within a dream shit was already a few layers deep at that point, and the more I tried to wake myself up, the further down the rabbit hole I fell.

I did finally wake up for real, sweating and clenching my chest. I was breathing, but it felt like I was suffocating.

I closed my eyes; I had only been asleep for two hours and was physically exhausted. Two hours was no where near enough rest for the night. But as soon as my eyelids fell, the panic swallowed me again. I opened my eyes, and reminded myself that it was just a bad dream. My eyelids got heavy again; the panic swallowed me again.

That’s about enough of that.

***

I got up and went to the master bedroom to find Boomer snoring soundly on my side of the bed.

“Something wrong?” Dan asked. My stumbling into walls had apparently roused him from sleep.

“Just another bad dream. It was so…”

But before I could complete the sentence Dan was snoring again. I curled up in the top left corner of the bed and closed my eyes…only to be swallowed by the panic. Again.

I got up and went to the living room, turned on an accent lamp, played Farm Heroes Saga to keep myself awake, and vowed to wait it out.

***

Being chronically sick is scary. Of all the ways I react in response to fibromyalgia, fear is the thing that takes up the most space in my brain and the thing I talk about the least.

When a flare begins, I fear it won’t end this time.

I fear falling because I know I can’t get up on my own.

I am terrified of addiction to drugs like Gabapentin (even after taking it for just nine days!) and am scared of the inevitable withdrawal symptoms I will face when I decide to quit taking it.

I am scared of drug side effects.

I get scared that my fibro fog will lead to big mistakes with severe consequences.

I worry that I’ll collect more symptoms. I worry that those symptoms are a sign that something else is wrong. I worry that my health care providers will miss it—or worse, won’t care. I worry that I’m misdiagnosed. I’m scared that a misdiagnosis would mean I’m not treating something bad, and that the longer I go without treating the real thing the less treatable I become.

I fear that spending to much time being afraid will make me sicker.

***

Dan handed me the knife, and I started cutting a gummy into quarters. I’m off of Gabapentin and using small doses of medical cannabis to keep the proverbial elephant off my chest and sleep without being terrorized while my body adjusts.

Medical marijuana might be the only thing I don’t fear right now. I want to hug it.

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13 thoughts on “Being Sick is Scary… For a Lot of Reasons

  1. I have been on and off SSRI’s for almost 18 years. I had never had any depression so I started out taking Serafem for PMS symptoms in my late 20’s. What I didn’t realize though is that I had never dealt with the internal effects and trauma from an abusive and very difficult childhood which resulted in a complete disconnect from my parents and brother who couldn’t handle me being honest about the abuse I endured. I started having bad anxiety issues at that time which was about 16 years ago. At the time my dr. put me on Lexapro which worked ok but after a few years I started seeing many side effects so I went off the Lexapro and tried Cymbalta for a while, discontinued for a few months and then went back on Cymbalta in 2013 while going through a bad divorce…while on the medication, I never really felt all myself, just a disconnected version of myself. Several months ago, divorce way behind me and in a very good place in my life, I decided I was going off of this stuff no matter what. I tapered down and tried to count beads even at the 20 mg level which was hard and eventually I got down to 10 or 15 mg and stopped. I was ok at first but then the withdrawal symptoms set in. I was not prepared for the symptoms I would encounter and have continued to struggle with for the last 3 months now. I quit taking Cymbalta in mid-December and in the last 60 days I have encountered depression, sadness, hopelessness, the symptoms go on and on. Never having depression this was a very scary feeling and I often wonder when and if I will get better. I go online to reassure myself I am not crazy and see that many others have or are unfortunately struggling with the same withdrawal effects. I am determined to stay off of this medication, I lived the first 28 years of my life without anything and hope that there is a light at the end of the tunnel. Right now I am really struggling to focus and see anything in a positive and happy light. I need to find a way to stay strong to get through this…..

  2. Hi Emily, my name is Heather and I came across your blog from searching the Internet for gabapentin withdrawals myself I unexpectedly knocked myself into withdrawals at the end of October and started having suicidal thoughts. You are not alone I have gone through every single hellish withdrawal symptom that comes with gabapentin from hallucinations to the ongoing nausea and stomach problems and I have only been off the gabapentin since November 14, which has been 37 days today. I am wondering how you were doing? I’m doing OK as well as to be expected. I will never try that or Larricha again I had a failed back fusion from August of last year that didn’t take and I was also having neuropathic pain with fibromyalgia as well so I understand where you’re coming from. I am now just trying to deal with the pain by walking every day building course stability and strength for my muscles sense the gabapentin screwed me up so bad it also took all of my water weight and a lot of calories with it. Hope you’re doing well please let me know your progress and if you’re almost back to normal. By the way how much gabapentin did you take? I was on 3600 mg for about nine months then got down to 1800 mg when I tried to go lower, then that’s when all hell broke loose and I accidentally threw myself into withdrawal by taking magnesium and calcium vitamins which absorbs the gabapentin. I was also on the gabapentin for a total of 1 1/2 years since May of last year. Are you still going to the psychological and physical symptoms? Please let me Know.. My email is heatherimorris@live.com thanks!!

    1. I was only on 100 mg for a few weeks, so I was over the withdrawal symptoms relatively quickly. I had a bad experience coming off Cymbalta several months ago, so I wasn’t willing to be on gabapentin for too long. I knew from that Cymbalta experience how horrifying it could be to come off of some drugs. I hope it helps you to know that the withdrawal does end…eventually. Wishing you lots of luck.

      1. Thank you so much for responding to me Emily. Not to be nosy but with the Cymbalta were you on that for a long time and were a lot of your symptoms like this gabapentin? I was on 1800 mg for several months of the gabapentin, at first I was on the highest dose of 3600 but managed to titrate myself down to the 1800 before doctors took me off completely down to zero in four days due to suicidal ideation sand severe depression.My symptoms are still there even though I don’t have the brains zaps, hallucinations etc. but I’m still dealing with the stomach pain G.I. issues, headache a little bit of dizziness here in there and a lot of the restless leg and restless feeling with some muscle pain. Just wanting to know about your Cymbalta experience because I hear it’s similar to the gabapentin and this will reassure me that like you said this WILL pass and I am only six weeks out from this and even though it’s only getting a tad bit better every week it is hard for me to see past every day because for me I don’t know when the symptoms are going to end …please update me I appreciate your getting in touch with me so much. Have a great day

      2. I was on Cymbalta for about 6 months, and it took me about as long to be completely free of the withdrawal symptoms. I was in touch with others during that time who were on higher doses for longer, and it took them even longer to get over it all. But they did eventually stop having the symptoms. I’ve been “brain zap” free for about a year now. That, dizziness, and nausea were the most horrific problems I had while quitting Cymbalta. I do believe you will eventually get over the withdrawal from gabapentin, but it sounds like at such a high dose you might still have a way to go. Fingers are crossed for you!

      3. Thank you SO much Emily for your kind response! Ya I’m sure I have quite a ways to go.. If I can see small windows of improvement than I can hang in there and be hopeful.. I’m praying that the worst will be over with within about a year.. I am 6 weeks free today of this evil drug! How did you hang in there and keep going? Wasn’t this ever terrifying for you? My family nor husband isn’t much support for me as no one knows how to help me though I’ve told them what I need and how to help.. I’m sure that it’s been hard on them too watching me go through this but still.. I feel so alone in most of this. I do get out( force myself to) to either walk a lot or drive and try to keep myself busy so I don’t think about it buts it’s hard.. Any pointers on how to keep a sane mind while going through the withdrawals and waiting on recovery? Thank you 😊

      4. One of the things that helped me with the crazy nausea was that I happened to have Zofran around from a previous ER visit. Also, I read lots and lots of forums of people telling their stories. Every one of them mentioned how hard it was, but people who had been down that road came in to assure patients that were scared that their withdrawal did eventually end. Every time I got anxious about my circumstances, I’d remind myself that no one so far had been unable to get to the other side.

      5. Thank you for that.. My only question is.. Do your withdrawal symptoms stay at the same intensity for the whole time you are going through this? Or does every week ease up a little so we can not be so scared and notice improvement? So when you say it took 6 months off the cymbalta for you to feel good again does that mean that the symptoms went away all at once at the six months or did the symptoms ease often and it was 6 months for you to notice no more symptoms…

      6. Not all at once. There was progress over time, but it wasn’t always steady day-to-day. Like, the general trend for me overall was getting better, but one day might be a little worse than the one before. Seeing things get worse, even for a little bit, was kind of scary. But, again, the big picture was me feeling better and better.

      7. Oh ok… I understand… ☺️ I’m wondering if by 90 days clear of your cymbalta if you were significantly better? I m asking because my sister says that the first 90 days are the hardest.. Would you agree? And did you see significant improvement within 90 days off the cymbalta? Sorry for all these questions, you are really helping me by telling me all of this because it is helping me just learn to accept that it’s my body healing instead of worrying that I may not get better…

      8. I did see welcome changes after about 90 days, but I don’t know if everyone can expect the same thing. People who took it longer than I did or were on a higher dose might have not had the same kinds of improvements in that amount of time. I just wouldn’t want to get your hopes up to expect too much too soon. These drugs are very difficult to come off of.

  3. You don’t need pity, pity will not heal you. But in my experience, lots of love and positive support does help us find the strength to put one foot in front of the other, on our own, every day to finally reach that place of physical and emotional contentment and peace. The struggle IS very scary and real (and seems like its never going to end) yet the sense of relief and the great value for life one feels is so strong when the suffocating cloud cover breaks and the warm, healing sun shines again. That day is coming, Em. And we’re all here, with embracing arms, with each and every step you take. All of your personal experimentation, research and experience documented here may very well help so many others understand and recover from their own experiences too. Proud of you, my friend. 🙂

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