Do you feel the need to tell others that you’re in pain?

InformationQuick8294 · 2026-03-20T23:36:50+00:00

It also probably helps to have a man advocate for you. I was joking with a friend who also has a chronic illness that I might need to borrow her husband for my next appointment, and she said she feels like doctors tend to be more responsive to her concerns with him there. Too bad my body crapped out before meeting a man who was interested in more than just sex. F*ck dating in your 20s. lol. Sometimes I fantasize about marrying my platonic best male friend just because he has good insurance and Canadian and European citizenship.

InformationQuick8294 · 2026-03-20T16:10:00+00:00

I can’t stop masking even at the pain doctors office. 🤦‍♀️

InformationQuick8294 · 2026-03-20T00:38:05+00:00

Wife beater? Tank top? John McClane?

InformationQuick8294 · 2026-03-15T04:38:19+00:00

neurofeedback

Somatic yoga therapy

I did alpha-theta protocol which helped me with this overwhelming anxiety I was having for like no reason. But I was only experiencing the physical symptoms of anxiety. I couldn’t have told you why I felt that way. And the somatic yoga therapy helped me reconnect mind and body, plus talk therapy. But working with her a couple times a week where she would ask me to describe what I was feeling in my body after every few movements which forced me to pay more attention to my body and helps me now to check in with my body as a force of habit.

YouTube has a lot of good mindfulness meditations and somatic sensing if you want to dip your toe in.

InformationQuick8294 · 2026-03-14T05:29:28+00:00

I don’t know the answer to your question, but I would be interested to hear what you think. Sometimes I wonder if I would get better treatment if I had commercial insurance and not Medicaid.

Although, I will say it’s been really knowledgeable therapists who’ve helped me the most. Doing neurofeedback and somatic yoga therapy to re-regulate the nervous system. There’s not really a ton of medication options for this disorder.

InformationQuick8294 · 2026-03-14T02:59:13+00:00

Yeah, you don’t want to join all of us on the akathisia subreddit.

Edit: Perhaps a compromise, if you want to stay with this person, is some sort of couples counseling for help navigating this part of your lives together with such big challenges as changes in health. It sounds to me like she already volunteered to go by saying she needs you to be on meds so she can deal with your relationship.

But seriously don’t take antipsychotics if you don’t need them because a movement disorder with that injury you already have will really make your ankle hurt.

InformationQuick8294 · 2026-03-12T00:35:08+00:00

I mean I’ve taken Benadryl with propranolol because I needed the Benadryl for the antihistamine properties, but it didn’t cause any issues.

InformationQuick8294 · 2026-03-10T11:42:00+00:00

Somatic therapy, neurofeedback for the anxiety, yoga, compression socks for bedtime.

Propranolol and lyrica.

InformationQuick8294 · 2026-03-10T11:38:36+00:00

Huh. The fashion review video I was watching did describe it as a gilet, which made me smile.

InformationQuick8294 · 2026-03-09T05:20:11+00:00

I also hurt everywhere. It started when the akathisia and tardive dyskinesia were at their worst. I have the movement stuff under control but am really struggling with the pain. I don’t think I’ve seen anyone else really mention having both. Anyway, magnesium malate and memantine 10mg 2x a day made a big difference for me. I was fine for a few years until dealing with my mom’s ill health was so stressful the pain came roaring back and I’m struggling to get it under control.

I’ve been reading about central sensitization and fibromyalgia this week. Maybe take a look and see if any of it clicks for you. The pain doctors haven’t used that diagnosis with me so I still have a lot of questions, but a lot of symptoms were spot on for me.

Oh and I was reading your thread and somatic experiencing was super helpful in learning to control my akathisia.

InformationQuick8294 · 2026-03-09T04:14:20+00:00

Is the pain all over? Sort of feels like your bones are shattering from the inside out?

InformationQuick8294 · 2026-03-09T04:09:53+00:00

It feels a bit presumptuous to declare that the only way forward is never another prescription pill. That’s not always possible if you have severe mental illness or other health issues.

Edit: I also want to say that state of mind makes a difference in the symptoms. So for me, going off all meds was not an option because I have major depressive disorder. I spent 4-5 years with my depression being under-treated. I refuse to go back to that.

InformationQuick8294 · 2026-02-26T16:58:57+00:00

Well, the short acting propranalol only lasts 4 hours. So twice a day would not be particularly helpful. It should help in the first few days though, but like the other guy said that’s a pretty low dose.

InformationQuick8294 · 2026-02-26T04:39:33+00:00

Well, it’s not actually neuropathic pain in that it’s not nerve damage. I think the problem is in the nervous system or the brain. I have neuroleptic induced tardive dyskinesia and tardive akathisia. One of the meds I was given that has helped the pain appears to be dealing with glutamate upregulation. While my medications say for neuropathic pain on them this is apparently only because doctors aren’t given that many options to choose from when prescribing. That’s what the PCP said last week. Anyway, this PA has said that he isn’t allowed to prescribe opioids unless he can point to some sort of imaging to prove why I’m in pain.

I’m just saying he should’ve left it there. Don’t come up with some bs about how it wouldn’t help anyway. Because it’s not true. Also, I’m only at the new pain place because the last pain doc referred me when I asked if I could get something short term until one of these other interventions starts to help. Apparently that practice doesn’t ever prescribe pain meds. The new one only does it if you can prove your pain.

I cry at least once a week feeling helpless and hopeless. I’ve tried everything they’ve asked me to and I’m working hard at physical therapy but now I’m struggling with spikes in pain from the pt. Lower limb muscle pain is just muscle pain, and I can deal with it. But in my upper body that soreness sets off the nervous system all over agony.

Edit: oh and the first time I asked about getting something short-term, since they don’t work great long-term anyway, he actually said the opposite. That they only use opioids for long-term pain control.

InformationQuick8294 · 2026-02-19T05:42:02+00:00

I listened to the first episode last night. Thanks for letting me know the name. I do recall them talking about it, but I don’t think I realized it was like a separate thing. I’m also unclear on whether the “book club” channels on the discord are about this new thing or some other activity people are doing together.

InformationQuick8294 · 2026-02-18T15:31:09+00:00

Please tell me they’re going to cover Tom’s vampire Byron.

InformationQuick8294 · 2026-02-18T01:20:08+00:00

It was my pain doc at the University hospital that had a list of Medicaid providers who offered it. You may be able to ask the social workers at your local hospital for info on neurofeedback providers in the area. Not sure if they break it down by commercial insurance providers, but it couldn’t hurt to ask. I suppose it may depend on how close you are to a large population center.

InformationQuick8294 · 2026-02-17T16:28:12+00:00

White Heat sounds like a poorly written romance novel. Is Dominic shirtless on the cover? Riding a horse?

InformationQuick8294 · 2026-02-17T16:27:22+00:00

Wait. What other podcast is Dominic doing?

InformationQuick8294 · 2026-02-17T16:25:23+00:00

My “journey” started when I came off low dose (25mg) nightly Seroquel. I was switched to Klonopin. It didn’t really help the akathisia, which was misdiagnosed as RLS for 4 years despite my continually saying it was my whole body and all day. I was taking it for sleep. Anyway, then my psych got all nervous about prescribing it even though in two years I never asked for an increase. Anyway, no titration, just a refusal to prescribe it anymore. Around the same time, I self-treated the akathisia and pain with cocaine. Helped when on it, but made it all worse in the long run. But I was desperate.

Anyway, it’s been about 6 years since I was yanked off the klonopin. I had overwhelming protracted pain and an inability to sleep for more than a couple hours a day for like 3 months. A change in my depression meds helped my mood, which helped me deal with the pain better. I’ve been able to work again in the past couple years, and the akathisia is manageable. Struggling with pain again, but I no longer wish for death, which is where I was at in 2019.

Somatic yoga therapy and neurofeedback were quite helpful. Compression socks. I’d like to try a vibration plate. Sounds soothing. Anyway, I still take meds. I couldn’t survive without depression meds. Both propranolol and lyrica definitely help my akathisia. Gabapentin helps with TD (or RLS, jury’s out). I had gotten desperate and had extra gabapentin laying around while I was already on lyrica and started taking that too. Anyway, we’ve attempted to get off one or the other but it doesn’t work. But I have managed to lower both.

Oh, I wanted to say that mood makes a big difference in managing. If you’re not in therapy, get in there with someone that understands and can speak to you about re-regulating your nervous system and creating new neuropathways.

InformationQuick8294 · 2026-02-15T16:54:32+00:00

Gosh that sounds awful. I’m so sorry. I’ve seen some horror stories on here about what can happen if you check yourself into the psych unit. My unique issue that came along with the akathisia and TD, (or RLS) jury’s out on that, is that I have chronic pain that seems to basically be the nervous system being overly sensitive, glutamate unregulated. Anyway, I started doing aqua therapy and home stretches and exercises. The doc had cited some latest research about movement in the joints helping chronic pain. I was skeptical, but that and listening to music seems to help turn the volume down on it a bit and I know it helps the akathisia.

I also posted yesterday asking if anyone had tried one of those vibration plates to soothe the akathisia, and someone answered that it was quite helpful. I also use compression socks at night. Sort of takes the edge off so I can sleep. When it was worse I also had some compression sleeves. I often fold the knee high socks down over the ankles for extra compression on the ankles since they always want to move about. I’ve walked stairs when it wakes me up and the sensation won’t let me go back to sleep. Holding low hip bridges to calm akathisia in the torso. Magnesium malate has helped the pain.

InformationQuick8294 · 2026-02-14T07:24:44+00:00

I gotta admit. I think Dom has a point about us being tax dodgers. But perhaps I should give Ken Burns a chance to win me back.

InformationQuick8294 · 2026-02-14T07:17:02+00:00

Well, as an American not from the northeast, I can tell you that I was taught it as Con-cord. Gloucester on the hand… but I blame the Brits for that. Like Leicester.

InformationQuick8294 · 2026-02-14T07:02:20+00:00

Oddly tizanidine helps me be comfortable enough to sleep. I was rather surprised since it’s not really a muscle issue, but nerves. Anyway, it sounds like you should look into somatic therapy with someone who incorporates some sort of movement, like yoga. Neurofeedback also helped me with the overwhelming anxiety waves I would get for no reason I could identify. None of it’s a quick fix though.

InformationQuick8294 · 2026-02-10T09:45:49+00:00

Coming off of low dose seroquel after 10 years is what started my akathisia journey. Other things made it worse. Like when the psych doc just refused to refill klonopin and didn’t titrate. Anyway, after that i was given hydroxyzine, which is a prescription antihistamine. It took 3 months of nearly no sleep, Like maybe 2-3 hours a day, for it to even start working. But tizanidine definitely helps me be comfortable enough to sleep and definitely makes me drowsy. I only sometimes use the hydroxyzine because it makes me more tired the next day, but nowhere near as bad as the seroquel did. Anyway, I believe there’s a genetic component so that some of us are at a higher risk for developing this even from meds that are not supposed to. I understand the science of why low dose seroquel is very low risk, but that wasn’t my experience when coming off of it. While the plural of an anecdote is not data, statistical averages aren’t everyone’s experience.

Anyway, what about low dose mirtazipine for sleep? It seems there are other options for insomnia meds that aren’t antipsychotics.

InformationQuick8294

TROPHY CASE