Complex Regional Pain Syndrome

Hi, my name is slothyspoonie. I've been diagnosed with
Complex Regional Pain Syndrome at 14 thru CHOP and Fibromyalgia at 11- I'm currently 24, and have known nothing but pain all my life for the past two decades (I can remember a time before all the pain I think I was 2 and 1/2 in a high chair eating Cheerios watching "jojo's circus" -I've only had two remissions in my lifetime (first around 7yrsold for a year and then at 15 for my first two years of highschool), but the heavy trauma did not help- however after I escaped my toxic household at 13- I was able to focus more on navigating healthcare for myself and with my mom -who's been sick my whole life(autoimmune and had a severe car accident at 19) so getting diagnoses and fighting and advocating for myself has been a lifelong journey with us both, and I want to never stop learning and sharing. To trade knowledge if you will, because my growth I owe entirely to my compassion and comprehension that has cultivated via patience I learned through pain and experiences I have the preverling- I love meeting new people and hearing new stories swapping what I learned with another's experiences, we're all here for a reason and deserve to be here whether to learn from another's actions+ that were horrible , or to spread the kindness instilled in some, because I learned that my favorite people are usually the ones that suffer the most... stay safe out here and nice to meet you guys!!
#MightyTogether #Anxiety #Depression #Migraine #Fibromyalgia #PTSD #crps #childhoodtrauma #spoonie #chronicillness #fi

I'm autistic and tend to sub-consensually stim a lot. Today, while in health class, we did a meditation practice thing. We had the choice to lay or sit down on the blue mats we were given, and just sit still and listen to the audio. Our health teacher turned up the volume on the computer, so it was loud. There is also this really loud fan in the room, which is also relevant to this story. [Side note: at school, I make sure to carry headphones in case I need them for my Chromebook or if I get overstimulated.] It felt like both the fan and audio were fighting for my brain's equal attention, so I put my headphones on. I also started stimming to calm myself down.

Then, on the second audio, the health teacher came up to me as he saw me stimming soundlessly to myself and proceeded to say, "Do you know the whole point of this lesson?"

I nodded my head. "The whole point of this is to listen and sit still. Take off those headphones, and just sit still." He said this in a very harsh tone. Later in class, he said some people need to learn not to fidget. Now, something you need to know is I experience RSD [Rejection Sensitive Dysphoria] which makes me extremely sensitive to criticism. So, I took off my headphones, faced the cabinets, and silently cried to myself for the rest of the class. This teacher also causes me so much anxiety during class, it's not even funny.

Now, I do not completely blame this teacher because he isn't aware that I'm autistic. But just assuming a student is "fidgeting" because of stress when it could be a bunch of other factors is just not okay [in my opinion]. Thank you for taking the time to read this post, I appreciate it!

-Keith

He/him

Hi, my name is MaryLouiseWebb. I'm here because I want to engage in conversations about my conditions, find support and explore life.

#MightyTogether #Anxiety #Depression #PTSD #ComplexRegionalPainSyndrome #PolycysticOvarySyndromePCOS #FunctionalNeurologicalDisorder

I was wondering if anybody knows of an article that talks about heart issues and RSD/CRPS. My cardiologist is sending me to an Electrophysiologist. No one can figure out what is going on with my heart and I think it’s the RSD/CRPS related, I had found an article about a year ago and now I can’t find it. Just don’t know if this Dr. knows much about RSD and I want to bring as much information as I can find to possibly help her. Thanks everyone.

I see a therapist to help me with chronic pain management related to erythromelalgia, peripheral neuropathy, and crps. My latest "assignment" is to keep track of how I feel by putting a number to it. (I know, I know.) But then track what I can and can't do with pain at that level. Then, I log my physical and emotional response.

The idea is to get my body accustomed to the idea that I can do things, and it will be safe. Also, it lets me see what I can do and when. It's like exposure therapy. The more you expose your mind and body to certain activities, you won't be too afraid to try. Yes, exposure therapy has plenty of its own issues.

I've been doing a form of this record keeping on my own for years. But in the past few days, I've pushed myself just to see. The verdict?

I have a pretty solid understanding of my body pretty well, and I know what I can do and when. Even so, it's only been a few days. Maybe it'll be more effective with time. I'm committed to giving this a fair and open-minded effort. We'll see how it turns out. Not every form of therapy is right for every person, and no therapy works magic.

#Erythromelalgia #ChronicPain #ChronicIllness #Therapy #PeripheralNeuropathy #SmallFiberNeuropathy #ComplexRegionalPainSyndrome #MightyTogether #CheerMeOn

Hi all. I’m currently completing a qualification whilst on the job. In this qualification you only have a specified amount of time to complete it and if you go over this amount of time then you won’t be allowed to qualify. I have been doing it for 2 years already mainly because I was put on a break for 8 months due to awaiting my assistive technology for my dyslexia to arrive. Once it came they said that I would have to be put on “pause” to embed my usage of it. I only have dragon and read/ write.

I Friday was an awful day for me they have said they are going to pause me again for a further 4.5 months and place me on a performance improvement plan. This is because we have to complete these detailed reports that have to be written in a certain way. I was given two opportunities to complete a higher level report which I failed abysmally the first time (despite seeking help from a qualified colleague who checked it over for me) and the last one I missed some important details but the changes that I needed to make took me around an hour (the whole thing is given a 10 day turn around window)

I’m feeling a lot of RSD about this and can’t stop crying about it. It’s making me anxious to even try to attempt it again. I feel like the next time I complete this I will ace it I just need another attempt and I really don’t want to pause or go on this improvement plan. There are no other issues with my work with clients (this has been praised) or with my work around supporting them and completing other requirements it’s only this one detailed report.

They did suggest going back to occupational health to see what other adjustments could be given to me but i don’t see what else could be provided. I have a mentor but she’s so overworked and overwhelmed with her own job I hesitate to ask her about things. Another colleague has offered to support me by quality assessing my work before it goes to my boss for final assessment. I have been given a detailed check list and I tried to QA my own work but still missed out some pretty important details last time. I’m just devastated this is happening again and I won’t be able to qualify on December. I was originally meant to qualify in March but that was when I rejoined the program after my first pause.

I’m just lost and frustrated

Hi, my name is vollbravo. I'm here because my wife has just been diagnosed with CRPS & want to know what to expect.

#MightyTogether

Last year on May 19, 2022 I went in for my routine Remicade infusion and bloodwork. I had been told my liver enzymes were a little elevated but nothing that they felt I needed special medication or a new specialist added to my team. The day after my infusion I felt really bad, but I thought it was because I was a having a really stressful time at work. I woke up on Saturday morning with pain at the bottom of my sternum. I thought it was heartburn so I took some medicine, it didn’t work. I started having trouble breathing so I used my inhaler which helped with my breathing. Later in the evening I had to use my heartburn meds again. I started checking myself for heart attack symptoms-none, but the pain increased. I eventually got to the point of tears I was in so much pain. My fiancé (now husband) was cooking supper when he came in the living room and saw me crying he dropped everything and took me to the hospital. I was in liver failure with enzymes near 1,000. (If you’re unfamiliar with what’s normal it’s 50-55.) The next week I was in the hospital but don’t remember a lot. Over the next couple months I had tons of blood draws, scans, and a biopsy. I was told if I didn’t have a transplant I was going to die. I was diagnosed with Autoimmune Hepatitis. It was an emotionally and physically draining summer and then I started back to teaching the best I could with enzymes that started going down for no reason. I stopped Remicade and started Rituxan in November. This coming Thursday I have my next Rituxan infusion which will exactly one year from when the nightmare started. I start crying when I think about going for my infusion. I’m so scared about getting it. I know my enzymes are ok but I can’t stop feeling anxious about it.
I know I’m going to be ok. I just needed to vent about it. Thank you for reading this far. #AutoimmuneHepatitis #RheumatoidArthritis #Lupus #ComplexRegionalPainSyndrome #chronicmigraine #remicade #rituxan #Fibromyalgia #ChronicIllness #ChronicPain #Anxiety