ED Muscle pain & Eating - restricted calorie intake

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Gs172003

MyPTSD Pro
True, but negligible. A banana and an apple each day is 2 served of fruit, which is the RDI here. It’s when you start blending up multiple serves of fruit into a smoothie that the fructose levels become a problem.

I’ll talk to my pdoc about it, but I don’t think she’s gonna go so far as saying it’s an ED beyond the types of disordered eating that I think she regularly sees in her trauma patients(?). Maybe that’s stigma in my head or minimising or something.

Definitely if I was diagnosed with an ED I think I’d be prepared to prioritise it differently (possibly above) to my other issues that are currently making life pretty impossible atm. But disordered eating, as far as I can currently tell, is part of the bigger complex trauma/depression thing I’ve got going on.

I’m not sure if that makes sense. Like, when I got diagnosed with DID, it became a thing of its own that I had to manage differently, prioritise differently. It wasn’t just part and parcel of my PTSD anymore, and it had its own treatment modalities that I took on, rather than seeing my dissociation and memory issues as typical of complex trauma (in which case treating the complex trauma itself would have been adequate).

So, disordered eating I think maybe I can manage if I can stabilise my current issues. Hopefully. Without needing to pathologise it... Hopefully.

There is now both bananas and apples in the fridge! Which is progress. The concept of ‘safe foods’ which someone mentioned earlier got me thinking that the salt reduced baked beans are also a ‘safe food’ in my head (and I’m really not sure there’s logic to what my head considers ‘safe’), and I’m thinking I might try and get them in the mix a couple of times a week just to diversify my diet a bit better. Certainly my gut would probably appreciate that.

I’ve swapped over to a better quality shake. One that a dietician I saw in hospital once recommended. Hopefully that will shift things with the muscle pain.

I was in the garden at someone else’s place. Gardening has pulled me out of active suicidal behaviour in the past and is super for both grounding and my mood, so I was back in the garden today at my place. Taking things a bit easier - swinging the crow bar around will have to be set aside for a while, but I’m happy enough with a pair of secateurs and something to prune or a patch of weeds to attend to.

Baby steps. Apples + better quality shakes + bananas rates as a good start I think. If it’s going okay I’ll add BB’s to the mix later in the week and see if I can maintain that.
What about frozen berries? They have very little in the way of sugar and great in a smoothie/ shake.

I make smoothies alot. Almond milk ( unsweetened), kale, mixed berries, sometimes peanut butter or avocado ( sometimes both) , yogurt ( also unsweetened) and Stevia to taste. I like it

It tastes better than it sounds lol
 

Sideways

Moderator
It tastes better than it sounds lol
I should hope so!!!!

It’s at this point where the degree of depression becomes a factor. Knocking up shakes like that shouldn’t be a problem. But it is. The motivation required for something like that, for someone like me? Is absolutely mammoth. It’s one thing to scoop a single serve can of BB’s into a microwave dish and nuke it for a couple of minutes. It’s another thing entirely to be...


Prepping healthy meals is one of those items on my function meter that I aspire to. But I celebrated just brushing my teeth twice yesterday. Chopping up avocado and (eek) pulling off bits if kale and blending it all up? It spins very quickly into “this is all becoming impossible” territory and I end up feeling very defeated.

It was one of the reasons my pdoc sent the dietician in to see me that time - because she was very used to helping people with depression find shortcuts to get their nutrition better while dealing with a mood disorder.

Which is why I tend to think this is more an issue of depression than an ED.

ETA When my mood was slightly better, I was prepping a fairly complex, healthy breakfast for a while. My best time of day mood wise. That has long since collapsed into shakes for breakfast as well.
 
When I can't eat, I do shakes, too. Drinking my nutrition is easier than chomping it.

Turns out soup is about the same amount of effort as a shake, especially if you don't care if it is heated up and if you are buying it canned or boxed or whatever. (cold tomato soup reminds me of being in Spain and drinking gazpacho ...). So when I'm in a bad place, I like to try to add soups into the mix to diversify my nutrition and not increase the anxiety I have over chewing. Maybe an easy thing to add while you work on the thought processes that are driving this?

Edited to add: there are so many healthy soups out there. I also know that when the grocery store is too much, I can order them online and have them amazon-ed to me in very little time. Many of them, like a butternut squash soup or a tomato soup are essentially pureed produce, as well, which helps in the fiber department. So when it is bad, I do a fruit-based smoothie for breakfast and some soup (sometimes cold and straight from the package, drunk like a smoothie) for dinner. Not ideal, but manageable. And it sounds like that combo might get you more nutrition and more calories than what you are at right now while still being relatively low-impact in the shopping / preparing department.
 
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Rosebud

MyPTSD Pro
I have had really bad eating (no eating) habits for almost all of my life, sometimes required and now just routine. But you can also only go with what your guts can (now) tolerate. I like shakes, and adding high calorie things like peanut butter to yogurt etc.

The hardest part about eating is considering yourself (myself) to be worth it, because I would never think of that being 'normal' or healthy to serve as food for others (or that they shouldn't eat). It isn't big on my radar for thinking of, or timing, or well-rounded choices. But I do tell others it's a form of medicine, and I do know 24 hours without it leads to brain damage, of which I have enough problems. So even say apple juice, cheese, a milkshake, meet or nuts, +/or pb and yogurt spread out throughout the day (I actually love salad- salads and cookies), or Diabetic-friendly supplement shakes can help (the others will cause your teeth to fall out fast if you don't use a straw, fwiw).

Good luck! You deserve to eat :hug:
 

Gs172003

MyPTSD Pro
I should hope so!!!!

It’s at this point where the degree of depression becomes a factor. Knocking up shakes like that shouldn’t be a problem. But it is. The motivation required for something like that, for someone like me? Is absolutely mammoth. It’s one thing to scoop a single serve can of BB’s into a microwave dish and nuke it for a couple of minutes. It’s another thing entirely to be...


Prepping healthy meals is one of those items on my function meter that I aspire to. But I celebrated just brushing my teeth twice yesterday. Chopping up avocado and (eek) pulling off bits if kale and blending it all up? It spins very quickly into “this is all becoming impossible” territory and I end up feeling very defeated.

It was one of the reasons my pdoc sent the dietician in to see me that time - because she was very used to helping people with depression find shortcuts to get their nutrition better while dealing with a mood disorder.

Which is why I tend to think this is more an issue of depression than an ED.

ETA When my mood was slightly better, I was prepping a fairly complex, healthy breakfast for a while. My best time of day mood wise. That has long since collapsed into shakes for breakfast as well.
I don't do all that lol I cut the avocado in half, scoop it in. I tear pieces of kale off, throw it in. It takes me maybe five minutes to do the whole thing. It looks worse than it is.
But I hear you. For me eating like this is a habit. Even with low energy I have no choice but to eat or I get to have the oh so fun migraines.

I wish I could come up with something better for you. I'm sorry.
 
@Sideways I'm responding from the direction of your medication, Seroquel and what I see as a fairly urgent need for you to see your psydoc.

In the past, I too have used it for long term and in big doses. So from personal experience, I do feel qualified to say.... it's most likely contributing if not causing your lack of appetite, absence of hunger pangs, somnolence, depression and yes muscle pain.

I too resorted to diet and meal replacements for a really long time whilst on Seroquel.

I'm not saying you should cease taking Seroquel (that's a different topic) but I do think you should be seeing your psydoc and discussing the issues you have raised here and focusing on whether or not continuing on Seroquel is worth it. There are other remedies that may be useful for you aside from Seroquel so it's worthwhile exploring those. I did.

Whilst on Seroquel and particularly when I reached high doses, I too was on a severely restricted diet, had no hunger pains, did a load of exercise and still inexplicably was overweight. I had muscle spasms and generally presented as quite flat in terms of mood and believe it, resistant to changing away from using Seroquel.

Seroquel was supposed to help me and maybe, to be fair, there was a point when it did. But you really do need to review it's use with your psydoc. It's definitely not a set and forget type of med. Though I'm sure you and your psycdoc are not deliberately doing this.

When I slowly and I do emphasise the word slowly... came off Seroquel I lost weight but was eating much more!. I became more interested in food, less depressed, more anxious and of course the symptoms I had been put on Seroquel for returned... But...now years later... my liver is recovering despite being a lot older. Yay!

So please do see your psydoc and look at all of the possible side-effects and implications of this drug. :hug:
 

Sideways

Moderator
@blackemerald1 - the seroquel is something I don’t think my pdoc would take me off without an admission (dang), but you’re probably right.

It’s more likely the desvenlafaxine I’m taking that’s causing lack of appetite (if that’s what’s happening - I can’t tell). Definitely when I was on an impossibly high dose of seroquel (1.2 grams a day) I ended up having to supplement that with dex, and even then I was a complete zombie: energy, brain functioning, metabolism, emotionally, the whole lot (and at the time? That was probably the safest option available).

I’ve come down a lot since then (300mg slow release as my prescribed daily dose), but because of my SI, this year I’ve been using my prn dose a lot more, which up to an additional 200mg a day (and my prn dose is instant release, which causes a lot of side effects for me).

I doubt there’s pharmaceutical options still available. Apart from ketamine, I’ve got a scary long list of different types of medications I’ve tried. And that’s pretty scary. Because I don’t have a good track record of keeping myself safe off the seroquel, and I definitely have a much harder time with switching and parts doing weird, unsafe and all round outrageous things off the seroquel.

Seroquel has been around long enough now that there should be some longitudinal studies around if anyone knows of any????

So, coming off it might be physically necessary at this point, but it’s a hella scary option. I hate to do this, but I’m going to tag @joeylittle because I’m fairly sure you’ve used seroquel to manage SI and chronic depression as well for quite a long time and may know a bit more about long-term side effects?

Reducing the seroquel could have some other positive spin-offs: it may reduce my hypersomnolence issues, which could be good (more energy = potentially better mood). But it’s still a very scary option.

I definitely need to at least see about a comprehensive blood test, because everything hurts. My arse, my legs, my shoulders, my arms. I’m noticing that because it’s waking me up at night.

@Tinyflame - I wanted to say that there’s a couple of things there that I wanted to touch on. The “I’m not worth it” thing I definitely relate to, and that sucks the motivation right out of sustaining any major health kicks for me. Add in spending part of each day contemplating whether or not to bother keeping yourself alive for the next 24 hours? Because it doesn’t seem worth it? And I’m not worth it? And yeah, the psych component makes it so incredibly hard.

For anyone following this thread for their own similar issues, I also wanted to second your advice about teeth. There are a lot of really crappy (often ‘sciency sounding’) diet shakes out there that frighteningly high in sugar. One that is available from my grocery store (and it’s all “science-based” if you believe the packaging) has more sugar in one single serve (never mind 3 per day) than your entire day’s worth of sugar (based on the WHO’s RDI).

I was fed fluoride tablets as a young child (don’t ask!), so I could probably soak my teeth in pepsi for a year and they wouldn’t rot (even my adult teeth - it’s crazy the long term effects but even in surgery they had a hard time getting my wisdom teeth out, and I spent 5 years with various forms of braces and retainers trying to make them straighter and eventually gave up because they simply wouldn’t budge!), but for the average person? Your teeth simply aren’t going to survive that.

I’m slightly obsessive when it comes to things like my daily sugar intake (my mum has banned me from reading nutrition labels on food packaging at her house!), so I’m not concerned about the shakes I’ve been using. But definitely anyone needs to get their nose into the sugar levels before starting any of these shakes - some of them are really quite insidious with the amount of sugar they’re putting into what is marketed as a nutrition and diet product.

There’s a lot of layers to this, obviously, and I think that’s probably true for everyone experiencing disordered eating. It’s helpful to pull it apart. It will probably be a case of dot pointing the key issues for my pdoc, because I don’t see her again for about 4 weeks, and she’s going to want to address safety issues (some new SHing issues have come up since I moved) probably before she considers reducing seroquel...
 
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joeylittle

Administrator
So, coming off it might be physically necessary at this point, but it’s a hella scary option. I hate to do this, but I’m going to tag @joeylittle because I’m fairly sure you’ve used seroquel to manage SI and chronic depression as well for quite a long time and may know a bit more about long-term side effects?
Tagging's no problem :)

I was on seroquel awhile, but primarily to manage sleep - and at the low end of the dose for adjunctive depression treatment. I am aware of it having potential negative long-term side effects for people taking it for schizophrenia and bipolar disorder.

When you were at your highest seroquel dose - 1200mg - that was indeed super-duper high. I'm glad you're not at that anymore, and can absolutely believe you felt like a zombie. Your current daily dose is only at the top end for depression adjunctive, and none of the longitudinal studies would suggest that you'd be having major long-term side effects develop from that; however, your additional PRN dose is going to make it very difficult to track.

because of my SI, this year I’ve been using my prn dose a lot more, which up to an additional 200mg a day (and my prn dose is instant release, which causes a lot of side effects for me).
Two things to consider - one, can you try something different for prn suicidal ideation management? I'm guessing you're not taking 200 at once - but 200 is high for regular IR use. If it's something that you're using more often than not (say, 4+ days/week) you might consider taking just 50mg IR once daily, at whenever you know your worst time of day to be. (This would be in addition to your 300mg xr dose).

I agree, the desvenlafaxine is well-known for reducing appetite, and that can lead to food aversion. I'm NOT a chemist - so all standard disclaimers apply - but if the seroquel and pristiq are working together as they should, then you're very possibly bumping up or changing your absorption/metabolization rates for the pristiq, when you use the IR seroquel. These things are adjunctive, which generally means that they have a slightly different effect when combined. By using the seroquel for a daily med and a prn, you're (in essence) jacking the med interaction around, and consistency of both amount and timing would be much better, at least in order to suss out what might be going on.

You could also just think about tweaking your dosing times, if you haven't already considered that...you mentioned being a little better in the mornings. I am too - and because of that, I usually push my "morning" meds to 11am or noon, which ends up lining up their release points in a way that can help me manage the evening suicidality.

Dunno if you can feel when the seroquel xr does its second release - happy to chat more about that, if it would be helpful.

I'm glad you added banannas - potassium is usually decently high in meal-replacement shakes, but another poster mentioned that they think magnesium when there's muscle pain; I'd add potassium to that, especially for larger muscle groups. And FWIW - I understand about meal prep being hard. If drinking things from bottles is what feels easiest, you could consider adding milk, if that's a thing you can drink. Also, just gonna echo eggs, because they are nutritionally pretty great. I find hard-boiled to be the least time-intensive.
 

Sideways

Moderator
Dunno if you can feel when the seroquel xr does its second release - happy to chat more about that, if it would be helpful.
I’m thinking that the seroquel potentially just isn’t as effective for me now as it was. I’ve been resistant to adding in a regular dose of IR, even at 50mg, because if I don’t need it, the side effects just aren’t worth it.

When I do need the prn, I need 100mg to have an effect, and I take a second dose a fee hours later if I’m still feeling unsafe.

My other prn is valium, so apart from being nervous about using that as an alternative prn, my pdoc won’t let me have substantial amounts at home (obvious safety issue), and I’m with her on that.

I have scope to increase the desvenlafaxine, because my current dose is 200mg, and I do typically need high doses.

I’m currently taking my prescription seroquel around 2pm, closer to midday if it’s a bad day. It was initially prescribed at 8pm, but that was shifted to 5pm because the morning hangover was wiping out my morning, and not giving me a lift in the afternoon.

I didn’t realise it had a second high in the system (the first one is at 6 hours I think?), potentially that’s what’s hitting my afternoon. Definitely my evenings are the worst time - my mood tracks down across the course of the day.

My current pdoc hasn’t been keen to make changes to my meds in the past without an admission. I can understand that given my history of attempts. But it’s frustrating, and there’s a real itch to taper off my seroquel completely atm, just to retest how I am now without it in my system.

It’s a juggling act. I do honestly think an admission would drive my mood down. But the issues that may be linked to my meds and their side effects do seem to be starting to reaching a threshold where it may be necessary.

Blah. Hate this. I’m not sure that ketamine is on the PBS so it’s probably impossibly expensive. I know there’s a clinic where they’ve got approval to use it for research purposes, but the pdoc that you have to consult I’ve tried to work with twice and both times he just...no. Not gonna work.

The shakes I’ve switched to use milk instead of water, which is unusual. It’s too soon to tell but my fingers are crossed that it will at least help.
 

joeylittle

Administrator
As usual, you're on top of your meds :tup:
It was initially prescribed at 8pm, but that was shifted to 5pm because the morning hangover was wiping out my morning, and not giving me a lift in the afternoon.
This was eventually why I couldn't work with it - that hangover is a real PITA. Tho, I'm also thinking this might be why the PRN IR is problematic, esp. if evenings are primarily your bad time.
I didn’t realise it had a second high in the system (the first one is at 6 hours I think?), potentially that’s what’s hitting my afternoon.
Yes - generally, extended release formulations will 'peak' twice in a cycle. It's not that easy to notice, if you're on a lower dose of something.

It sounds like you're a (might be a?) rapid metabolizer...a weird little experiment you could try would be to cycle your xr seroquel dose timing, to see if you can improve the plasma concentration for your waking (evening) hours. That would be doing something like 6pm, 5pm, 4pm, 3pm, then back to 6pm. You'd basically be 'scheduling' a gap every fourth day, and could try seeing how your mood does. The thinking is: if you're not metabolizing the drug within the rates determined to be "average", then you will end up with difficulty maintaining the steady-state plasma concentration that the drug was meant to sit at. If you're a rapid metabolizer, this can lead to a window of time where the med drops below your therapeutic threshold. One way to counteract that is to stagger your dosing so you're on a 23 or 22-hour cycle (instead of 24). With something like seroquel, that has a longer release period, nudging it earlier by an hour for a few days gives you a better chance of not getting that morning hangover problem.

I do think that pushing the pristiq up, to see if that helps alleviate the need for the seroquel IR PRN, is also a good idea. You're in a tricky spot with having a good prn tool, but the doubled-up xr/ir seroquel isn't the best long-term solution...that's in my totally non-MD, just a person who takes a lot of drugs opinion. If you could get your daily meds working in a way that decreased your need for the prn - that'd be ideal.
It’s a juggling act. I do honestly think an admission would drive my mood down. But the issues that may be linked to my meds and their side effects do seem to be starting to reaching a threshold where it may be necessary.
This is a tough choice. Feeling for you.
 

Lumos

MyPTSD Pro
The pains could be caused from lack of calcium/magnesium/sodium/potassium/vitamin E. All of these are best obtained from foods like green leafy veg (kale is great). Bananas don't provide anywhere near as much potassium as green leafy veg does. I would suggest juicing it but sounds like you struggle so I don't know what else there is. I've lived on 'nutrition' shakes before and became deficient in a lot of things because they are usually just full of synthetic 'vitamins'.
 
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