Cast Anxiety for SPD

[Sdel]

I broke my hand a couple of weeks ago.  Lived in a crappy splint for a week and a half then had surgery and received 6 pins.  I’m still in my post surgery splint and I’m going insane.  The claustrophobia has a sensory element to it and it’s pretty bad.  I’ve already pulled one stitch just from involuntarily clenching against the cast.  I can control it when I’m awake but I do it in my sleep as well.  I do it normally in my sleep against my blankets and will actually wake up in an arched position from trying to push away from the bed itself.

I’m currently taking about 1,000 mg of Mg and an anxiety med at night.  It’s letting me sleep but not helping with the other things....

Honestly I’m so overwhelmed right now between the cast and the multiple layers of clothes/blankets needed to stay warm this week.   I took the wrap off and just left it laying over my incision and practically started crying over the relief of it being away from my skin.

I’m supposed to get a cast for three weeks.  Does anyone have any experience with this or know of any possible alternatives I can discuss with my doctor?

[PeterPan]

Oh my, I'm sorry. I can imagine. I mean, I can't. I hurt my hand this past summer and was in a custom splint. I had these sensations of wanting to gnaw my hand off, but then I sort of dissociated from it and let my hand mentally die. It doesn't sound like that's happening for you. Ugh.

Can they get you a better anxiety med? I think that's where I'd start. I mean, you have some other tools, sure. Like you could body scan and get a little bit of a bump. You could do some breathing, trying to feel your heart while watching a pulse oximeter. But honestly just get a stronger anxiety med. 

Total aside, but there is a rare occasional explanation for anxiety with pyroluria and the NBPF3 gene. https://forums.welltrainedmind.com/topic/704749-anybody-up-on-pyrrolespyroluria/  Now I take P5P (a form of b6) and it tamps it down. So if you have your genetics, you could see if by chance anything like that would help.

So I think if you tolerate it, you might consider trying some *chamomile* before bed. It might just calm and zonk you down a bit more. Or stronger still would be benadryl. It's a methyl donor, so that makes some people grouchy. As long as it doesn't do that to you, it could be on the table. Better would be prescription hydroxyzine. I haven't taken it personally but I've used it with my ds. It's an old school antihistamine that is also anxiolytic and going to make you sleepy. So not ideal during the day unless you're ok with zombie but great for at night. Again, methyl donor and could make you grouchy. But it's stupid cheap, an easy ask. Buspar and hydroxyzine are both easy asks, things a doctor could do for you that are short acting that might help.

Obviously they have stronger meds too, and if you were in my house or my loved one I'd be having the "it's ok to use meds, that's what they're made for" chat, kwim? THAT'S WHAT THEY'RE MADE FOR. And sometimes an anxiety med can calm down some of that sensory and the angst. There's also a med that kinda crosses over for fibromyalgia and pain plus anxiety. My dd is using it these days and says it's the bomb for sensory. But even just an SSRI can help tamp down. So if you're open to it, an SSRI for a month might be the thing. I'm just saying really pragmatically, unless you have known risk factors (genes for suicidal ideation, previous history, etc.), maybe strongly consider it.

Can you find someone to do hypnosis for it? Again, I'm just thinking really pragmatically. Someone cut my hair a couple months ago and butchered it, really cut it in a way I didn't like. I kept pulling on it, flipping out, took the anxiety meds. Fortunately hair I can kind of stop paying attention to as I can't see it, lol. But your hand you can't. I think your plan to talk with the doc is good. I think tell him your anxiety is very high and you need something to calm it down. Buspar is short acting, so you can take it as needed and find an amount and balance that works for you. So maybe something low level all day long and a booster at night with some chamomile. 

Have you tried *weight*? Walmart is probably still selling online their 12 or 20 pound weighted blankets. Maybe try the 12 because you can fold it. Of course I'm saying that and it turns out my pile of blankets I use nightly weighs 15 pounds, hahah. No wonder it was too much when I added a 20 pound blanket on top! LOL But yeah, I'd be outta my skin if I tried to sleep without weight. Maybe that's why you have so much movement? We were going through genes recently, and I think maybe I have a restless sleep gene. 23andme identifies one. So there may be some genetics there and maybe trying weight to calm it down. If you get the 12 pound, you could fold it in half to get it heavier. Maybe play around with it. But weight and meds were my first two thoughts.

Another thing you can do is try to HUM when you body scan. So you scan all over (focusing progressively on each part, naming how it feels, really paying attention to each part of your body). Then pick a target part that is painful or driving you crazy and HUM, really putting your focus to that part as you HUM. There's actually evidence of humming as "toning the vagal nerve" and the vagus nerve (blah blah, I have no clue what I'm talking about) is involved in the interoception, how you feel, etc. The counselor had me doing it for pain, but it's something free you can try. Like scan all over and then go back to that hand and HUM and focus your energy on the hand. Do that several times, like 3-5 times. Good long resonating hums. And repeat 3-4 times a day. It may help decrease the irritation slightly, and it may just put your system in a better place. Humming may be calming to your system.

What other things do you do that make you feel better? Sometimes in sensory we talk about (my brain is dropping terms) compensatory sensory. Sorry the term is so gone. Ah, sensory defensiveness. To me, I call it matching intensity. So that intense pain I would match with other intense things, because intense stuff gets through to me and makes me feel better. So I would eat hot sauce straight out of the bottle, turn up the music really loud, get a really vigorous foot massage, lift weights (adapted for what you can do, maybe squat or stept up onto a chair?). 

Actually, maybe that's your biggest issue? Maybe you're severely sensory deficient right now because your routines in how you kept yourself feeling good are so altered? What makes you feel good? What have you stopped doing that you need to do?

Like for me, I am into WIND. It's silly, but wind is a big deal for me and I never realized how often it's a factor in a place (the beach, the lake, a cruise, whatever) making me feel good. But someone could turn on a FAN for you and blow WIND on you, kwim? And if you crave sensory input for calming but can't use your hand, you can't lift things you were probably naturally toting around to get that input. So you're input deficient. Are you allowed to use other body parts? When my hand was injured and in the splint, I would have ds (90 pounds) jump on my back like piggy back and I would squat. I needed that input and I couldn't hold weight.

Well I'm sorry you're in this position. Tell us more about what you can and can't do, what previously worked for you, whatever, and we'll brainstorm with you.

[PeterPan]

Is it possible you need to buy some looser clothing? Or cut the sleeve off some shirts. Keep warm with a vest and let that arm have less on it. Or have only a thin layer or nothing over the cast/splint/whatever and then use a fluffy but insulating blanket. So then you're down to one thing. Like me, when my system is irritated, I'm going to want to be at 0+1, kwim? Like not 1+1+1+1. I have a primaloft blanket I made, so that's one layer but all the way to warm. You could be nekked under the thing and be warm. A down sleeping bag that you unzip and open up could work. 

Another way to have less on it but stay warm would be a hot water bottle. Have you ever tried a hot water bottle? LOVE them, oh my. Better than dog and they don't jump like your spouse, haha. If you put a hot water bottle on your lap and put a throw on top, it will keep your core warm enough that you can tolerate less clothing. Like I have this fleece lined flannel short that is oversized and baggy. So I would wear that with maybe just a thin tight fitting tshirt underneath. Then leave the injured arm out with the fleecy shirt draped over you. 

My dd wears camisoles for the compression effect. You could even buy a compression shirt. You can't wear it all the time, but maybe do it for 3-4 hours a day in the afternoon to give yourself a break. I just don't know how you'd get it on and off. But yeah, camisoles wouldn't be so tight but could be just tight enough to help. 

Are you doing your cognitive strategies? Do you have enough mental energy to take up a hobby, research a new topic, plan a trip for when this plus covid is over, or something? For me, research is very distracting and calming. If not, how about a new tv series? I recommend Young Dracula because it's completely ridiculous and engrossing.

[Sdel]

I’m sure what has set me over the edge has been the last week without power and having to wear so many layers but the cast thing has been getting progressively more frustrating too.
 

My normal routine was unavailable.  I manage well with horseback riding, yoga before bed, and super firm mattresses/pillows to minimize the sinking in feeling, double blankets and a strict sleeping posture designed to counter the “push” from certain areas on my body.  And nothing extra is allowed to touch me.  
 

As for anxiety meds I have access to 15 year old Xanax, Ativan, and my daughter has some hydroxyzine left over from a trial we did a couple of years ago.  I have Mg, and found some methyl-cobalamin, and methyl folate, and SAM-e from a few years ago too.  I won’t touch SSRIs unless it’s life or death.

[PeterPan]

52 minutes ago, Sdel said:

I’m sure what has set me over the edge has been the last week without power

I think you should write Ted Cruz and ask him to take you to Cancun.

What a horrible situation! Are they saying when it will end? Is your power back on yet? 

Edited February 20, 2021 by PeterPan

[PeterPan]

53 minutes ago, Sdel said:

found some methyl-cobalamin, and methyl folate, and SAM-e from a few years ago too.  

Maybe the SAM-e? I can't take it, actually had out of body experiences with it. But my dd really likes it. 

[Sdel]

We are perfectly fine now.  The grid is back completely.  Now the damage is fires that can’t be put out because of no water and people who left space heaters plugged in and on while fleeing the cold and water damage from burst pipes.

We camped in the living room with the fireplace.  The longest we were out was 8 hours and then our power company we found it’s groove and kept us in a routine rolling cycle since we have a lot of the counties water facilities within a half mile of us (the power plant is only probably a half mile away too).  We got the well back once we could get enough hot water to thaw the hose from the pump to the pressure tank.  None of our pipes burst because the tank/pipes completely drained when the hose froze.  The birds were all kept in warm water while the well was spewing all the water everywhere.

[Sdel]

Update:  I’ve been taking methylcobalmin, methylfolate, magnesium and occasionally SAM-e since surgery....and I’m starting to tolerate the splint during the day.  The doctor opted to give me a removable splint over a fixed cast...so if I wind up taking it off I can at least put it back on when I calm down.  So far I’ve only had to loosen tightened ace bandages and I can reach in and massage some of my hand and forearm muscles.  He also gave me a Valium script for if I need it and ordered B vitamins and Vit C.

Still can’t sleep in the thing without help.  Just can’t relax enough to get more than a hour of sleep in it unless I’m drugged.  Some light yoga is helping the muscle cramping.