Chronic pain and dissociation

[squishpunk]

I've always had dissociative issues (depersonalization and derealization) but attributed them to anxiety and depression because once I got medicated and in therapy for those, I stopped having dissociative episodes. But it seems like the chronic pain from fibro has set me not just back to the start, but into the negatives with regard to my dissociative episodes. There are times I spend the greater part of a day barely tethered to my body. Fibro fog and usual symptoms from my pre-existing mental health issues are just compounding it. My mom, who has her own chronic pain issues, assured me that it's normal, but it doesn't feel normal. I fear I'm losing my grip on reality itself sometimes. It's scary. Has anyone else gone through this? How do you draw a line between "normal" dissociation to cope with pain, and disorder?

 

[Jemima]

I've always had dissociative issues (depersonalization and derealization) but attributed them to anxiety and depression because once I got medicated and in therapy for those, I stopped having dissociative episodes. But it seems like the chronic pain from fibro has set me not just back to the start, but into the negatives with regard to my dissociative episodes. There are times I spend the greater part of a day barely tethered to my body. Fibro fog and usual symptoms from my pre-existing mental health issues are just compounding it. My mom, who has her own chronic pain issues, assured me that it's normal, but it doesn't feel normal. I fear I'm losing my grip on reality itself sometimes. It's scary. Has anyone else gone through this? How do you draw a line between "normal" dissociation to cope with pain, and disorder?

Hi Squishy,

Welcome here!

I read your other post a little earlier, but got sucked back into work so didn't manage to reply. I just wanted to say that you've found a great place here - lots of wonderful and supportive people who have figured out how to navigate fibromyalgia with impressive levels of grace and humour! Sunkacola's so right that you can and will get a handle on this - it won't be perfect and things are going to look a little different, but it's not going to feel nearly as scary as you find your way.

I also had a bit of a blur between symptoms caused by long-term depression and those which were related to my emerging fibromyalgia. Don't fear that you're loosing your grip on reality - I went through something very similar in the beginning, and figured out how to minimize it over time.

In the earlier stages of my fibro battle, once the condition had fully manifested (which took years, looking back), I had real trouble with dissociative episodes. This went from experiencing depersonalization and derealization as you describe, through to full-on blackouts that scared the hell out of me. At that point all of my symptoms were flaring in a big way - all kinds of pain, fog, fatigue, memory issues, speech issues, insomnia etc. As I gradually got a handle on how to self-manage and got really kick-ass at self-care, everything got much calmer. I still have flares, but almost never to that extent, and the dissociative experiences are a rarity now. If I could say something to myself back then, I guess it'd be "trust that you're going to come out the other side of this," so that's probably the best thing I can say to you!

That said, it's always a good idea to pay attention to new symptoms in case they indicate that something else is going on. For example, you didn't mention taking any medications, but if you are, keep in mind that side effects can be sneaky as we often take a while to tease them apart from fibro symptoms.

With Sunkacola's advice list, I really recommend working through, idea by idea, doing a bit of research, and figuring out how to make it part of your routine. For me at least, going in and out of the right habits just doesn't cut it - I had to learn to get reallllly consistent about managing stress, eating right and moving a little every day, upping my sleep-hygiene game, and mastering pacing (spoon theory 🥄). To begin with, I wasn't sure if it was working; then I started to notice right away if I didn't stay on track, but still kept overdoing it; and finally I started to develop some good instincts so that I could stay ahead of those flares more often. We can't control every trigger, and sometimes we can't even figure out what the trigger was, but we can certainly do some good work in turning down the dial at least some of the time.

If you have a dig through the forum here you'll find lots of ideas of other things you can try, like certain supplements, treatments, or dietary changes. You can also read about people's experiences with medications and physical therapies. We all seem to need a range of different solutions, so it helps to take a long-game approach, take your time, and experiment until you find a stack of tactics that makes a real difference. The forum's search function is also pretty handy if you want to read about anything in particular. Ask away if you have questions, and vent at will! 🌻

 

[squishpunk]

Yes, love spoon theory! Have been using it for a while wrt mental health stuff, and it works so well for fibro-related issues too (actually ran out of emotional spoons after writing the initial post, and thats why it took me so long to get back to you. Sorry about that!)

I'm sorry to hear you had to go through the same thing, but I'm really glad to know that it'll get better over time and with better management. I've been working hard on changing my diet and staying active. My main problem with exercise/activity is that I tend to overdo it the second I feel even slightly better than usual, and set myself back again :/ but I'm sure that'll get better with time, too. I was always one of those go go go go type of people. Learning to take it slow without having to hit a wall first is... more difficult than I ever thought it could be. But I'm hoping that once I figure out how to be active without straining myself I'll experience fewer dissociative episodes too.

I only take a low dose gabapentin (my rheumatologist actually just raised the dosage a little, but still very low) and ibuprofen for fibro. My other meds have been stable for years, so I think (🤞) it's not those. I may end up switching to pregabalin or something if I don't start seeing results with the gabapentin in the next few months in addition to the lifestyle changes I'm making.

Thank you for responding. It's so nice to have a place like these forums and know that I'm not alone in any of my symptoms, even the scarier ones 🖤

 

[sunkacola]

I also had a bit of a blur between symptoms caused by long-term depression and those which were related to my emerging fibromyalgia. Don't fear that you're loosing your grip on reality - I went through something very similar in the beginning, and figured out how to minimize it over time.

@squishpunk ,

Just want to say that I had this experience as well. It doesn't mean you are crazy or going there.

My main problem with exercise/activity is that I tend to overdo it the second I feel even slightly better than usual, and set myself back again :/

I did that too. Big time!! It is completely normal and understandable. Again, this is something you will get a handle on eventually. The important thing here is to learn acceptance. Now, acceptance doesn't mean acquiescence, apathy, or giving up. I just means that you are not wasting your energy fighting something that you cannot change. Accept what is in this moment, this day. By doing this you learn your limits. If your limits are that you cannot do something at all, accept that and find some other thing that will fill the gap left by the thing you cannot do. It's a harsh thing at times, but it really does get easier! And be aware that many, many people with fibro are or were the go, go, go type of person. I certainly was! Wow, has it been hard for me to adapt to the new me. But I focus a lot on how happy I am that I ever had that kind of energy, because many people never have, and I also am thankful that I still have a lot of internal energy and can still do many if not all of the things that I love even if in a different way.

You are not alone at all. Sadly, we cannot all be in a room together and talk and hug each other but at least we have this. We are always here to support each other.

 

[squishpunk]

Yes, I think I'm still in a bit of denial if I'm being honest with myself 😅 Getting a diagnosis was a huge relief, yet I still resist doing (or more often, not doing!) things that would be better for me at this point than just trying to push through as I always have. I'm too stubborn for my own good XD

Feeling so out of it so often has, funnily enough, been a sort of wake up call for me. So here's hoping I learn how to be gentler with myself sooner rather than later!

I'm sorry to hear you also experienced these things, but I'm glad that you've clearly found yourself in a much better place since then! Thanks for your reply, and for all the help you've put out there

 

[JayCS]

still in a bit of denial

Depending upon which bits of you are still in denial and which are already in acceptance, ready to move on, you might be able to self-motivate the latter parts to do things using little tricks (tokens).
Instead of putting time aside for doing a breathing exercise which usually helps me, I'm at the moment doing it more whilst "working", also sitting on the floor in various stretching positions (one leg cocked sideways, then both, then sitting cross-legged - ouch!): for this I'm "earning" myself 11-13' for the stretches, 11-13' for the breathing, plus at least 1️⃣ "trophy" 🏆, depending upon how long I manage to hold my breath. Publishing it on my blog like a teacher might for a kid at school. Similarly short stretches whenever I'm waiting for something etc. Silly me. 🤪

 

[squishpunk]

Ahhh, making it a game might help! I've seen ads for self care apps that I might be able to tailor for this, so my fibro foggy ass doesn't have to worry about keeping score XD Thanks so much for the idea!

 

[DGN]

Hi squishpunk, welcome. I’ve definitely disassociated when the pain was too much. Like you, I largely had past disassociative coping mechanisms largely diminished. But then two total knee replacements with pre-existing fibro blew my mind in terms of persistent intense pain. Gradually (very gradually), I was able to drop back into my body. I was told that at times of significant physical distress (including pain), trying to sit in it, or get in touch with the pain can be destabilizing. Disassociation can be a protective response when the conscious mind cannot cope with the present pain. So, when the pain was at times more than I could bear, I let myself be distracted, to be taken elsewhere - a stupid Netflix, a pretty sunset. Knowing it’s temporary can be a relief. As time passes, I’ve gradually become acquainted again with my pain & my over activated autonomic nervous system. I can be in meditation now & be in and of my body. It takes time. Perhaps pushing to be in touch is setting off other reactions. Trust in your body. If it feels too much, do, think or feel something else & come back to it. There’s no playbook. Everyone’s journey is uniquely theirs & yet all too similar to the rest of us. Generous heaps of self compassion together with practical optimization of sleep, nutrition, gentle movement, aggressive pacing living in your own & always chancing energy envelope. Thanks for sharing. I for one appreciate you telling us & reminding us of what it’s like - some of the time. You’re not alone!

 

[Jemima]

Yes, love spoon theory! Have been using it for a while wrt mental health stuff, and it works so well for fibro-related issues too (actually ran out of emotional spoons after writing the initial post, and thats why it took me so long to get back to you. Sorry about that!)

I'm sorry to hear you had to go through the same thing, but I'm really glad to know that it'll get better over time and with better management. I've been working hard on changing my diet and staying active. My main problem with exercise/activity is that I tend to overdo it the second I feel even slightly better than usual, and set myself back again :/ but I'm sure that'll get better with time, too. I was always one of those go go go go type of people. Learning to take it slow without having to hit a wall first is... more difficult than I ever thought it could be. But I'm hoping that once I figure out how to be active without straining myself I'll experience fewer dissociative episodes too.

I only take a low dose gabapentin (my rheumatologist actually just raised the dosage a little, but still very low) and ibuprofen for fibro. My other meds have been stable for years, so I think (🤞) it's not those. I may end up switching to pregabalin or something if I don't start seeing results with the gabapentin in the next few months in addition to the lifestyle changes I'm making.

Thank you for responding. It's so nice to have a place like these forums and know that I'm not alone in any of my symptoms, even the scarier ones 🖤

Hi Squishy,

No need to apologise for being slow to respond. We're all in the same boat with the fog and the limited resources, so everyone will always understand! Thank you for your kind words

Do be careful of Ibuprofen and check in with your doctor if they haven't advised on how long to take it! I always thought of it as a really inert drug with no side effects at all, but apparently if it's taken for extended periods of time it can cause dizziness and drowsiness as well as damage to the digestive system. I can't be sure whether it was a factor, but I was taking it daily at the point when I blacked out while driving and crashed my car. When I learned it might have contributed, I started to steer clear!

So glad to welcome you here. It helps to know we're all in this together ⚡