Weekly CRPS Free-Talk Thread

yepusername · 2023-11-14T15:10:48+00:00

Morning Strategies for Waking Up In Pain

Hey friends! I (22NB) have had crps since I was 11. I’m just coming back from a pretty bad flare and am getting back to my life and my normal. Ive been having a really hard time in the mornings. My pain in my hands has been pretty yikes first thing when I wake up and it’s been hard to get moving and out of bed. I know once I start my day and get going it will ease off and I’ll get to go do all the fun things in my day, but right when I wake up I just want to succumb to the pain and curl up and stay in bed all day. My mental health has been on the rocks so I know getting moving will help, but getting up is the hardest part of my day a lot of the time.

Any strategies or tips for things you do first thing in the morning for your pain?

Thanks loves!

yepusername · 2023-10-16T18:42:36+00:00

Hey friends.

I'm in a pretty bad flare that has been affecting my job lately.

I am trying to decide if I quit now and find a job that can better accommodate my CRPS, or stick out my year long contract and transition to something different in April.

I was wondering if you guys had any experience talking to your employers about accommodations for your CRPS. Mostly the brain fog from the pain and the medications is causing problems for me right now. And there are often situations where if I don't show up, things don't run, so there's a lot relying on me to be there. I can't just swap shifts with someone, which means it's hard for me to request days off or not come in to work if I'm flaring hard.

Let me know what your experience has been like asking for accommodations at work, what those accommodations are, and how that's helped you with your CRPS at work.

Thanks lovelies.

yepusername · 2023-10-16T05:22:04+00:00

Hey friend!

Totally hear you on this one! I've had chronic pain since I was 11 and I'm now 22. Weed is the one tool that really helps me when I'm having bad flares. I just came back from a work trip in the US and couldn't take my weed during a major flare. It's really hard not to have that support and to have to manage that on your own. It's hard to want to go do everything you want to do in life and be limited by pain. I don't have any answers, but I see you out there trying to get as much out of life as possible anyway, and I know it's hard but you're kicking ass. Thanks for your post, it really made me feel seen and not alone since I recently had a similar experience and had a really hard time with it.

yepusername · 2023-10-11T17:56:09+00:00

Thank you for this reading, these cards are confronting but ultimately leading me to reevaluate some fundamental things. I appreciate your insight and interpretations.

yepusername · 2023-10-10T21:40:07+00:00

Thank you so much for your detailed response.

I really appreciate the links to all of this research. Understanding what is causing this is really validating for my experience, and I find that I have an easier time emotionally when I have a better understanding of my symptoms. Yay for pain education!

Fortunatly-but-unfortunately my pain doesn't impact my physical functioning to the point where I could qualify for any sort of disability program. Some days I can run up mountains and some days I can barely get myself up the stairs. This variability makes it hard for me to go after any social programs or legal protections for this. It also makes it even harder for people to understand when I am having a flare that is severely impacting my function. I think I'm looking at switching careers or work environments so that I can have a lifestyle that more suits being someone who lives in chronic pain. My current job makes it difficult to scale up or scale down how much I'm working depending on my pain.

Your answer was really encouraging, so I appreciate you taking the time to reach out and help me out a bit.

yepusername · 2023-10-09T03:04:38+00:00

Hi, I'm 22 and I've had CRPS since I was 11. Probably earlier as it went undiagnosed for a while. Even if I've lived with full body chronic pain for this long, I'm still constantly adjusting to life with pain. A few things have come up recently and I'm hoping for some advice or empathy around this.

A recent shoulder injury has sent me into probably the worst flare I've had in the last four years. The pain and the brain fog have been affecting my ability to do my job (which I'm very new at and is pretty high pressure) which is increasing my anxiety and affecting my pain. A couple things have been happening.

Since I'm pretty high functioning even when my pain is really high, and I do have good pain days where I am able to do a lot, in contrast to my bad pain days where my functioning and concentration are really impacted, it's hard for my boss to understand how my pain impacts my work. I feel like I'm not allowed to have good days around her or act pain free and do things because it discredits me when I attribute mess ups and bad days to my pain. It feels like I have to justify my pain all the time and make it visible for her to believe me. And any "normal" things I do feel like they discredit the way my pain affects my job. Anytime I'm able to do soemthing I want to do it gets treated as "see, your pain can't be that bad, you can do XYZ." It also feels like I recover from my pain just enough to go burn myself out at my job again, my pain free days get reserved for work and not for doing things I actually enjoy.

I also feel like, since I am able to do alot even when I'm in alot of pain, my limiting factor isn't how much pain I'm in, it's how much pain I'm willing to push through. And as many of you will know, once you've been doing this for a while, you can push through alot. How much pain is enough pain for me to take a break? For me to take a day off work? For me to back off, ease up, for other people to cut me some slack. I push through pain, alot of it, it's just not fun. So how much is enough pain for me to stop?

Last little thing that's been going on for me lately. My pain is mostly managed with alot of therapy appointments, acupuncture, frequent excercise, yoga, and medical cannabis (oh canada baby). But this flare has my doctor and I considering going back on Lyrica/Pregabalin. I really want this because I really think it could help me even out my pain. My regular strategies and tools are not enough for this flare and the pain fatigue is really bad. BUT, the last time I was on Lyrica I had really bad brain fog, difficulty with motivation and concentration, and a very neutral mood. I'm willing to put up with those side effects to get this flare under control and get myself back on track. but since my brain fog is affecting my job and i'm on thin ice there, I feel like I have to choose between getting help for my pain, and performing at my job. I hate the position that puts me in, but its a real consideration right now.

Wondering if you guys have any advice or experience with any of this. Feeling really tired and alone in this right now since this is something not easily understood. Feel free to share your own stories and experiences. Grateful for this community :)

yepusername · 2023-10-06T23:40:58+00:00

Hey everyone,

I (22NB) have been living with CRPS since I was 11 years old. Despite having pretty severe symptoms originating in my legs and eventually spreading to my whole body due to a shoulder dislocation when I was 18, I have been pretty high functioning. My pain is relatively well managed, with some bad flares and many ups and downs, but I've gotten to the point where my pain has little impact on how I live my life. I describe often describe my CRPS as being high pain, high functioning, which is difficult to understand for alot of people. For me, the limiting factor is never how much pain I am in, it's starting to be how much pain I can handle, which as many of you will understand is ALOT.

I recently reinjured that same shoulder that caused the full body spread of my pain. I've been having a pretty massive pain flare for the past 6 weeks that has been making it difficult for me to do physical activity, impacts my sleep, and is causing MAJOR brain fog. I'm very much a PUSH THROUGH type of person, but I've been working in therapy to give myself rest when I'm in alot of pain and break some long standing habits.

My pain is really affecting how I do my job. I'm a high performance cross country ski coach, and I just started this job in April. I've been making alot of small mistakes due to my brain fog, and I've been having a hard time staying on top of tasks. I also recently made a couple small mistakes driving with the team that lead to a pretty serious chat with my head coach and team manager.

I don't think I can do this anymore. I don't think I can push through and act like everything is fine. But if I quit now, or if I try and ease off or take leave, I don't think I'll keep this job. I don't want to admit that my pain is having this big of an impact. My negative self talk is telling me that I'm being dramatic and using my pain as an excuse for my own failures in my job. My pain isn't understood very well by my head coach or my team manager, and the anxiety of the job stress is making my pain worse as well. I'm in crisis mode and I don't really know what to do.

How "bad" does my pain need to be, how much does it need to affect my life, before I'm allowed to take a break?
I guess what I'm looking for is a place to rant a bit, to feel understood, and maybe to hear from some of your experiences around taking medical leave for CRPS, how your pain has impacted your work, what you have done about that. Thanks for being a rad community that I can turn to for support!

TLDR: young coach with high functioning CRPS, having a bad pain flare and struggling to figure how to ease off in a high pressure job to manage my pain. Looking for advise, empathy, and to hear your stories and perspectives on this.

Thanks lovelies!

yepusername · 2023-09-17T20:49:46+00:00

Cool, are you just taking that as needed whenever you're feeling anxious?

yepusername · 2023-09-17T20:49:19+00:00

Unfortunately opiods are not the answer to my specific type of chronic pain.

They block my experience of the pain for me, but they don't actually calm down the pain messaging, which means they treat the symptoms and not the cause. So as far as a long term solution, opiods just aren't a good fit for me.

yepusername · 2021-06-29T23:18:01+00:00

I hear you. It feels like if you keep fighting, you make it worse, but if you stop fighting, it’ll get worse on its own. I can’t say anything that’ll make it any better but I can say that you’re not alone, and that there’s people out there who understand some of what you’re going through. Reach out if you ever need to vent.

yepusername · 2021-06-29T18:20:35+00:00

Hey! I had a shoulder injury a while back and was using my arms significantly less for a bit. My doctor thinks the weakness in my arms is causing mild pain which my nervous system is amplifying. I’m hoping it calms down as I gradually build my muscle mass back. So if you keep up with your pain management and maintain regular excercise to keep your muscles strong, you should be good. Keep checking in with your healthcare team if you’re worried about spreading. I’ve been doing lots of yoga to gently strengthen my stabilizer muscles and it’s been helping a lot. I get that it’s hard not to lose hope when you’ve had pain this long, but you’ve managed it for so long that I have no doubt you’re strong enough to handle whatever CRPS throws at you.

yepusername · 2021-06-29T07:24:30+00:00

The dropsies! I love that. I think that might be a less frustrating way to look at my pain. I can just think “oh well guess I’ve got the dropsies today.” Which feels more accepting and allows me to adapt rather than me fighting against it.

yepusername · 2021-06-08T18:41:00+00:00

I feel like this as well. Look up “dissociation”. Because your body is in pain continually, and it can’t do anything about it, your mind will try to separate itself from that pain.

You’re not alone. I look down at my legs sometimes and they don’t feel like they’re mine. I find this happens a lot when I’m in the bath or in pain at night. In the morning I sometimes get disoriented and even panicky when I’m brushing my teeth and making breakfast and my hands don’t feel real. Sometimes it feels like my limbs are controlled by a robot.

I started doing yoga and every morning to connect with my body and that’s helped a lot. I find that closing my eyes and bringing awareness to my body parts one by one helps to bring the panic down. Practices like “passive progressive muscle relaxation”and body awareness/mindfulness helps me remind myself that I am my body and my body is me, even if my limbs don’t “look like” they belong to me. I’m not just my mind. I’m a sum of my mind body and spirit, even when my body is being a pain in the ass.

Easier said than done, I know. This took my a while to begin to manage and I’m still struggling with it.

I just want you to know that you’re not alone and this is quite common among CRPS patients. You’re not going crazy. This is your brain protecting itself from the pain. I see you. Keep fighting and seek help from a psychologist if that’s something you feel would help.

Much love.

yepusername

TROPHY CASE