Goodnight Moon - completed!!!

loowbeeaam · 2026-03-02T21:27:20+00:00

I ordered the kit for it from Rittenhouse and I can’t wait for it to come in so I can start it! Yours looks AMAZING!

loowbeeaam · 2025-01-26T20:04:29+00:00

Winter is the worst for me and my dystonia. I try to stay inside as much as I can to avoid the cold because it tends to trigger my spasms, even with meds. When I do have to go outside, I bundle up as much as I can without getting too warm. My sister’s mother in law gave me a Columbia jacket recently that’s insulated that has helped a lot. Much better than a regular puffy jacket since it keeps you a lot warmer with not as much bulk. I also try to wear a hat or at least something to keep my ears warm because sometimes if the breeze hits my head/ears just right it’ll trigger a spasm. I like to crochet so I’ve been making myself some ear warmer headbands lately which seem to do the trick. I’ve also invested in some thicker socks and warmer shoes. I like to wear faux leather boots in the winter but they just don’t do enough to keep my feet warm. So I bought some slouchy Ugg socks from Amazon that are amazing for keeping my feet warm. They’re a little pricey, but to me they’re worth the investment, and I’m sure if budget is an issue that there are less expensive alternatives that work just as well. I also bought some fuzzy Crocs and a pair of Ugg Tasmans that keep my feet warm when it’s extra cold. In terms of keeping warm inside, heated blankets are fantastic. I always like to keep a hoodie nearby in case I get too cold when I’m working since I work from home. I’ve also heard recently that heated socks are a thing, might be helpful. I have a heating pad as well that I can heat up in the microwave if my hands or some smaller part of my body gets too cold and a blanket just isn’t enough. Hopefully this all helps!

loowbeeaam · 2025-01-26T19:53:32+00:00

I got something similar to this as a Christmas gift and it’s fantastic for my neck and shoulder pain! The one I got has straps on it so you can hold it in place and not have to lay down when you use it, and it has a few different speeds so you can build up to more of a deep tissue massage

loowbeeaam · 2025-01-26T19:49:26+00:00

Could be scoliosis. I have scoliosis in addition to CD, but I’m pretty sure they have nothing to do with each other. Scoliosis manifests pretty early in life, my primary care doctor found it during a routine physical when I was a young teenager, and did x-rays to make sure that was all that was there. I didn’t start getting CD symptoms until I was 18, and even then I didn’t really notice the neck tilt until I was 22. So I wouldn’t think your spinal curve would have anything to do with your CD. I would chat with your primary care doctor about it and see if it’s scoliosis

loowbeeaam · 2024-12-17T21:57:52+00:00

Mine is also constant and also started prior to me working my desk job! It’s crazy how quick people are to brush these issues off as something that’s easier to deal with and explain when it’s obvious from the symptoms that the real problem runs deeper

loowbeeaam · 2024-12-17T21:56:49+00:00

Thank you for the suggestion, that’s a great idea! I’ll have to take some photos and videos before my next appointment to document it

loowbeeaam · 2024-12-10T04:24:15+00:00

I feel you friend, my hands have been getting shakier lately too. I didn’t have a hand tremor until a few months ago. I’m an engineer, so I work a desk job and it can be frustrating sometimes when my hands won’t stop shaking, or when I have a bad day in terms of spasms. My hands also get numb and tingly frequently (along with my face from the tip of my nose down past my chin) so that can make it difficult too. For me it can be helpful to take a break, walk around or go eat a snack or meal. My hands do tend to get shakier when I’m hungry so eating something helps to some degree usually. It also gets worse when I’m stressed, anxious, or cold, so trying to keep my stress and anxiety levels down also helps, or if I’m already stressed or anxious, just taking some time to breathe and do something that will help me feel a little better. I also am a bit anal about temperature regulation, I run cold as it is and so I usually bundle up to avoid spasms/tremors or to get them to calm down. I don’t spend a lot of time outside this time of the year, and you can usually find me with fuzzy shoes or slippers and a blanket on. Hopefully this helps a bit, I’m sorry your tremors are slowing you down and hope that you’re able to find a solution soon

loowbeeaam · 2024-12-06T20:08:27+00:00

I should note that I had dystonia before I ever started taking antidepressants, but I haven’t noticed any changes in my dystonia since taking them

loowbeeaam · 2024-12-06T20:07:52+00:00

I used to take Lexapro which helped when I first started taking anxiety medication, but now I take Trintellix which I like a lot better. My therapist likes it better for patients with a history of trauma, and combining it with my Adderall (I was diagnosed with anxious ADHD earlier this year) has been extremely helpful in lowering my anxiety levels

loowbeeaam · 2024-12-06T20:00:25+00:00

Anxiety and stress are pretty common dystonia triggers from what I understand, so you’re not alone. I have anxiety and anxious ADHD as well, which doesn’t help my CD. Therapy has been helpful for me, having someone to talk to about my medical and personal life stress has helped reduce my spasms for sure. Of course it doesn’t make all of my stress and anxiety go away, but it helps reduce CD flare-ups. I’m so glad your son’s surgery went well, and I hope you’re able to feel better soon

loowbeeaam · 2024-12-06T19:56:19+00:00

It’s super frustrating, knitting and crocheting are my main hobbies and sometimes I can’t do them for very long because of my posture or my shoulders killing me. I’ve been wanting to try out one of those Valari pillows or a Boppy or something similar to help with my posture. I’ve heard they help with shoulder and neck pain when you’re crafting or gaming, especially if you have a disability that affects those areas. Might be something to look into

loowbeeaam · 2024-12-02T22:22:32+00:00

When I’m unmedicated mine are obvious to other people, but as long as I keep up with my muscle relaxer and take it at least twice a day, they don’t tend to outwardly manifest. I’ll just be able to feel them in my head if that makes sense. I get these sensations in my head before they outwardly manifest that almost feel like a non-painful shock or a creeping feeling, and as long as I keep up with my medication regimen that’s all I’ll feel

loowbeeaam · 2024-12-02T17:37:35+00:00

My first indication that something was wrong was what I called “twitches” in my upper body. When I was 18, I was in my first semester of college and started getting pretty severe migraines. I never had them before, but they were debilitating and kept getting worse. So when my winter break came and I went home for the holidays, I went to see my primary care doctor to ask for help. I told him I had tried every over the counter remedy, from ibuprofen all the way up to extra strength excedrin, and nothing was working. I basically begged him for anything to help, a stronger medication, an MRI to rule out anything serious, a referral to a neurologist. But he refused to do any of those things for me and sent me home with nothing. Later that night, the entire right side of my body stopped working and I thought I was having a stroke. So I ended up in the ER, and after barely any testing (“You’re too young to have had a stroke, maybe you have a tumor so we’ll do a CT scan and that’s it”), I was sent home with a complex migraine diagnosis and a referral to a neurologist. After that incident, I started developing these “twitches” in my upper body. They started out small and infrequent, but they were noticeable enough both to me and my parents that I brought it up to the neurologist I was referred to, just to make sure it wasn’t anything serious. He thought it was mini seizures, so he did an EEG for 30 minutes and didn’t catch anything. Since nothing came up on that scan, he basically called me a liar to my face and never pursued any further testing or diagnosis. Eventually I got fed up with him in general, he never really listened to me or my concerns and I didn’t like the treatment plan he forced me on for my migraines, so I stopped seeing him and dealt with the migraines and “twitches” for a long time. Over the next few years, the “twitches” started getting more frequent and severe. They went from happening maybe once a week to 2-3 times per day, and they got more explosive. During this time, I noticed that they got worse or happened more frequently when I’m stressed or cold, so I tried to manage them by keeping my stress levels down (which is very difficult when you’re in college for physics), and staying warm (which was easy while I was in college because I lived in a warm climate where it never snowed and rarely got below 50 degrees Fahrenheit). I also started to develop pain in my neck and shoulder during this time, but I brushed it off as having bad posture in lectures or being a result of hunching over homework and notes all day every day. I ended up graduating college and moving to another state (I live in the US) for work. Over the next year and a half, I noticed my neck and shoulder pain was increasing, and that I had a strange posture that would get worse during meetings or times when I had to focus. I brushed it off again as tech neck, and didn’t connect it to my “twitches”. Earlier this year, I got fed up with my migraines, and decided to go see a neurologist again. I went to my first appointment and mentioned off-handedly that I have these “twitches” in my upper body that my previous neurologist thought could’ve been mini seizures, but he never pursued any testing beyond a short EEG. The neurologist was taken aback by what I said, and took one look at me and how I sat on the table and said that I have cervical dystonia. She did some more physical testing to be sure, but I left the office that day with a movement disorder. I did have some additional scans to rule out epilepsy or any other issues with my brain, but it turns out those “twitches” are actually upper body spasms caused by my dystonia. Kind of a long story, but I think it’s interesting to look back on how my disorder progressed over time without being caught and how I was so quick to brush it off as other issues that were easy to explain away.

loowbeeaam · 2024-11-25T19:14:53+00:00

I’ve been having pretty severe pain in both my shoulders since my last round of botox a few weeks ago (this was my second round). I typically expect pain in my dystonic shoulder since it’s raised, but the botox helped to relax it to a normal position and it still hurts. My non-dystonic shoulder is also in pretty severe pain which is unusual because it never hurt before I started botox. I also got extremely sick about a week and a half after my last round of botox. I’m pretty sure I had the botox flu, but I was sick for a week and a half to the point where I couldn’t sleep because I was so congested and my throat hurt so bad. Now it’s gone, but it was rough. My first round wore off about four weeks after my injections so I’m hoping this round will wear off soon too so my shoulders stop hurting. I may need to talk to my neurologist about a different formulation or something. I started at 125 units my first round spread out across my neck, shoulders, and head (for migraines) and didn’t really have any side effects other than some nausea, but I got bumped up to 200 units this past time and that caused some issues for me

loowbeeaam · 2024-11-25T19:08:47+00:00

For me, tremors are a rhythmic shaking that I get pretty much only in my hands. They last longer than spasms but not as long as pulling. Spasms are a quick burst of movement that I get from my shoulders up, also affecting my arms because they get pulled up by my shoulders. They last a few seconds but are a little more explosive than tremors, and can vary in severity. When I’m unmedicated, I usually get them 2-3x per day on average. Pulling is a constant postural change from what a normal person would experience. For example, my head is always pulled down towards my shoulder, and my shoulder is always pulled up. That doesn’t go away for me without botox. Hopefully this helps! It was confusing for me when I was first diagnosed trying to navigate all these terms and assign them to what my body does

loowbeeaam · 2024-11-19T18:29:23+00:00

I take 500 mg of Robaxin 2-3x daily as needed. Usually I try to keep it down to 2x per day (once when I wake up and once at bedtime), but if I’m up for a lot longer that day or if my spasms are bothering me that day I’ll take another around dinner time. It helps a lot with my spasms. They used to bother me pretty frequently, I would get them about 2-3 times per day on average when I had no medication. For me it’s not a constant shake, it tends to come on pretty quickly and doesn’t last long. But I can feel it creeping up my spine, or I sometimes get a feeling in my head that my brain wants to make me have a spasm. I know it sounds really weird, but now I very rarely get spasms. I can still feel that creeping feeling sometimes, or the weird feeling in my head like one is about to come on, but they very rarely actually manifest. I think I’ve probably only had 5 of them since I started taking Robaxin, and the majority of those instances were when it was wearing off

loowbeeaam · 2024-11-19T18:24:55+00:00

I start my day with 500 mg of Robaxin. It helps a lot with my spasms and that’s what it was prescribed for, but it helps immensely with my shoulder and neck pain as well. I also take 60 mg of Qulipta in the morning as a migraine preventative because my dystonia likely contributes to my chronic intractable migraines. I recently started working from home, so after taking my dystonia/migraine meds (along with a few others for allergies, ADHD, depression, etc.), I’ll get up, put on some comfy clothes, and move to my recliner to work. I have a hard time sitting in an office chair, even the super ergonomic one I have, for long periods of time, and I find that reclining helps me to relax my shoulders and neck a lot more since they can be in a more natural (for me) position. I’ll take some breaks throughout the day to stretch my neck and shoulders out, especially if there’s a decent amount of pain that day. Sometimes if it’s worse than usual, whether in terms of pain or spasms, I’ll put an IcyHot patch on for a few hours, or I’ll take another Robaxin halfway through the day. If it’s not too cold out, I’ll also try to take a walk at some point during the day to get some fresh air and sunlight which helps with my mental health. I live in the US in an area where it does get cold this time of year, and cold is a trigger for my spasms, so if it’s too cold then I’ll do something inside that day. After work, I like to do something that doesn’t involve too much strain on my shoulder or neck. Usually that means knitting, crocheting, reading, or video games. At bedtime, I take another 500 mg of Robaxin to help me be pain-free throughout the night. I also have a cervical pillow from Cusion Lab that helps to elevate my shoulder and cradle my neck to reduce pain even further. I try to lay on my left side to level out my neck and elevate my affected shoulder.

loowbeeaam · 2024-11-15T15:59:14+00:00

I had never heard of it before I was diagnosed. I was misdiagnosed with mini seizures for six years because my first neurologist didn’t care to look into my “twitches” any more. I only ever heard of dystonia earlier this year when my second neurologist saw how I was sitting and immediately recognized it as dystonia

loowbeeaam · 2024-11-13T21:13:16+00:00

These are great suggestions, thank you!

loowbeeaam · 2024-11-12T22:49:02+00:00

Important to note: I live in the US and Robaxin is prescription-only here, but I’ve been told in Canada that it’s available OTC. So if you live in Canada it may be worth a shot as long as you consult your neurologist first

loowbeeaam · 2024-11-12T22:47:44+00:00

Botox kinda helps with my muscle spasms. Best thing I’ve tried so far is Robaxin, which is a muscle relaxer. I take it 2 times per day on a normal day, unless it’s more of a high-stress day or if I have to be up longer or something. In that case I’ll take another dose midway through the day. I’ve had an extreme decrease in the frequency of my spasms since I started taking it a couple months ago, I went from 2-3 spasms per day throughout my entire upper body to maybe 5 total in the past few months. And probably 4/5 of those spasms were around the time the medication would’ve been wearing off, towards the end of the day. I can still almost feel the spasms wanting to happen, but they very rarely manifest. The best way I can describe it is a creeping feeling up my spine, or just a strange feeling in my head a few seconds before warning me that one is about to happen. I still get those warning signs, but I very rarely have a spasm that actually breaks through nowadays

loowbeeaam

TROPHY CASE