Me, alwaysinpain, jennareimer (I think) also, you can search the posts for CRPS or RSD Yeah, it's a rare (ish) disease, but sometimes it might not be diagnosed because of being a differential diagnosis
It was really hard to watch me writhing in pain. We had to get therapy for them. I was passionate about gardening. My 13 yr old took over and even built a 275gal aquaponics. My 11 does 80% of the cooking. We meal plan and keep pantry inventory together and daddy shops. He even makes pancakes and oatmeal like I use to on certain day. My baby is amazingly well adjusted and rolls w it all helping where ever I ask. My husband remarkably hasn't wanted to leave me instead on my bday reminded me, friends and fam I am the love of his life. I am so thankful but I still hate this disease and long for the mom, wife, friend ect I use to be.
I am so glad that your husband and children are so helpful though! And wow! I'm impressed with your 13 year old! That's amazing haha. At 13 I was just sitting in my room coloring or something. Good job haha. Did the therapy help? I'm happy that you have such an amazing support system :) hopefully doctors will get you into remission and you can start gardening again. Maybe even make a small garden in your living room or bedroom that you can tend to. It might help relax :)
Well you must know he is a 4h kid with 20 chickens and 2 rabbits. I may have created conservationists. We used to camp twice a month (still have pop up and hiking tent gear in hopes) we also loved to take the boat out. Haven't done it as a family in 4 yrs. they hate going cuz the know mom is bummed even if happy you know? We r all pretty close. Therapy was good. One grew up w Juvinile RA and one that came here's mother has Crps. They really helped the kids ubderstand I wasn't just going to get better and to somewhat understand. They are very compassionate kids. They and I hate that I can't go to school or other performances bec the vibration throws me to 10. I feel like I have tried it all wo remission but I just started OMM manual manipulation by a DO here. It's not like Chiro and has helped others get more function and out of the bed. Now my heart is to embrace that each piece is a building block vs healing. Not that I give up but I am trying to be content and do the most possible.
I think my CRPS went internal, because I couldn't eat, sight of food made me nauseous, lost a bunch of weight, got constant chest and abdomen pain. I'm doing better now, probably partially because my injury is (possibly) less severe than surgeries as a cause.
I don't know know the cause, I doubt I ever will, but it had something to do with wrist pain, triggered by pencils. I got off most prescription meds, except inhalers and allergy meds, took DMSO, did PT, and walked, eventually morning caused less pain than being on the couch.
I have crpsi in my lower leg. it happened after shortly after an accident. I don't get as many flare ups as I use to but it has been doing it lately. I am sorry that you have to go through this. I know it is painful but I also know mine is so minor compared to everyone elses. So my heart goes out to people with this diagnosis. By the way, welcome to the community. I am sure you will like it here. I have seen some of your input and it has been kind and helpful. Take care and I hope you are feeling the best that you can today. Best wishes.
Welcome Crps! I don't have it, but I have fibro. I hear others talk about it, and sometimes wonder if the pain developing on my arms and legs isn't it. It hurts to be poked, scratched or squeezed. Of course I bruise badly from anemia. I wish you the best, and you'll meet lots of people here with CRPS experience. 🙏🌼
Winters are pretty hard on me just because its icey out (living in Cleveland and its usually pretty harsh winters as well) I never have experienced "more" or "less" pain during different seasons, it's just harder getting around from the snow and ice
I sadly had to drop out of school at 18. I hate admitting it, but it had to be done (getting my GED asap though) I had spent most of my high school and middle school life in the hospital. And was always missing school. They tried everything to get my credits up but I was just too sick to even move my arms. When I went to a meeting at the school at 18 they told me that at my age I should be considered an 11th grader. But I only had enough credits to be considered a first semester 9th grader. For me get all the credits I needed it would take at least 2 years. And I did not want to be 19/20 and still trying to pass highachool. So they gave me to option to drop put and get my GED. Sadly that's the path I chose. Considering I still spend most times in the hospital (like right now I am in the hospital) it was the smart thing to do. Sorry for such a long reply lol
That's what I was probably going to do. Just need to wait for the right time to sign up. And I honestly want to go into something art related. If you know what fx makeup is that's what I love (and pretty badass at doing it. Sorry for bad language I just feel that way about it haha) you don't "need" a degree to have that career either but I just want to get some classes in. The problem is most schools only have "cosmetology" which is not fx makeup but I've been searching online. Hopefully I'll find something soon :p
JennaReimer, I had to do the same thing! I couldn't take gym glasses, and then ended up having to be tutored for almost a whole school year. When I tried to go back the school told me that not only would I have to take 2 gym glasses for a year, that I would have to do remedial swim classes to make up all the gym I missed. I couldn't go into the pool due to my skin condition and my congenital medical condition, which can they knew. I couldn't deal with one gym glass let alone two. They tried to force the issue and my parents told them off then pulled me out of school. I missed 11th and 12th grade. I tried homeschool, but the just ended up getting my GED. Then, despite my conditions, and helped by the sporadic nature of college classes, I went to college and got a degree.
There are many ways to get an education, and sometimes regular school isn't the best. Especially for those of us with disabilities. You'll be ok 😊.
I actually was lucky about gym. My doctor that I had for my CRPS threw the age 17 basically wrote a note every year to my school since I was 11 saying I was not aloud to be in gym class and that I should be pit into a different class so I usually just got an extra art class ^.^
So did my doctor lol. The staff - principal, vice principal, gym teacher, etc were all jerks. For some reason, in my school, sports and gym classes were more important then anything else. So no matter what my doctors said, somehow I was still required to do some form of gym. It was ridiculous. I'm glad yours wasn't like that.
JennaR, that's great that you are focusing on what you like. I was 39 when I returned to college. My kids were half grown and no longer needed or wanted mommy around all the time. I was bored sitting at home. While attending college, for Registered Health Information Technology, I did volunteer work in our local hospital's record room. It helped place me in a job, doing volunteer work.
But the funny part is, to graduate college we also had to take PE! I signed up for the non-traditional walking coarse (older students). About halfway through I was hospitalized for a status asthmaticus episode (1st ever asthma attack, allergy to blooming Bradford pear trees). Needless to say my doc wrote a letter to the college that I c"ould not participate walking, due to exercise insuced & allergy enhanced stigma attacks. ". I took the written final and passed with an A. The other students thought I was lucky. Ha! 🙏🌼
crps, I do have it as well. It's on most of my back, my left arm, my neck, back of my head, left leg and feet. I hope that you are able to figure out how to get through your days without aggregating the condition or having such horrible pain. I wish you the best and you will be in my prayers.🌻🙏🏻
Just a question do some people have such sensitivity with their CRPS that even a strong wind or someone blowing onto your skin causes pain? Any time I wind hits me it feels like I am on fire. (Usually do ) but it gets worse with that
Jenna, yes. I think it's called allodynia. My right side still can't take the cold, I can only wear fuzzy socks, so most days I end up wearing fuzzy socks and sandals to avoid the numbness. Crps, no, I didn't walk to get off meds, that sounds ridiculous, sorry didn't mean to say that. My pain meds increased my pain, caused swelling, and extra stress because I couldn't defend myself against my step mom's guilt trips, and blaming me for my illness. DMSO is dimethylsulfoxide, an industrial solvent used in horses to treat arthritis. It smells weird, but has made my pain mostly bearable. I don't know, my pain isn't that bad now, usually it's a 3-6, and livable.
I live in fuzzy socks and my ugh slippers. My epidural nerve blocks helped my skin from hurting. At times takes it all away. I can't do sympathetic blocks wo screaming for hours but these help. Circulation sucks! I am unsure how to help but try to move.
Hi guys, i too have CRPS in my left foot its been nearly 18 months now, have tried medications,rehab ketamin infusions but nothing seems to help my specialist says he has hit a wall and is referring me to someone else.
Does anyone have any other suggestions as what to do try? I had to give up my full-time job because of it, but feel in doin so i have made it worse.
Any info would be greatly appreciated hope you are all having good days!