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Nov 01, 2015 1:19 PM

I just joined. Anyone with Crps? It is a rare disease see rsdhope.org

Nov 01, 2015 2:57 PM

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

Nov 01, 2015 2:58 PM

Yes I do have CRPS. For 7 years now. Started in my right foot, and now full bodt

Nov 01, 2015 3:00 PM

Started in my right wrist, went full body, now mostly back pain and numbness, can't feel the floor moray days

Nov 01, 2015 3:13 PM

Jenna do you have internal? I started bilateral feet and through surgery and accident move to both hips but not internal. It started June 2010 and diagnosed 2014. I am in Arizona where are you guys?

Nov 01, 2015 3:14 PM

Ferret so you are internal? I have a few in our support group true full w internal and it's unreal. One friend only lungs but effects mouth, esophagus, and vocal as well.

Nov 01, 2015 3:16 PM

Mine is internal due to surgery. Mine started 7 years ago when I was 11. I live in ohio. :) not sure about ferretbandit. I just know that she is 15.

Nov 01, 2015 3:17 PM

I am 45. I have three kids 13,11,8. You guys can help me be cool from my bed ;) my kids will be like wow our mom is not just wise but hip! Lol

Nov 01, 2015 3:19 PM

Yes haha! I am 18 I know all the hip things that are going on :p. How are your kids handling your CRPS? Just curious. I hope they understand. :)

Nov 01, 2015 3:24 PM

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.

Nov 01, 2015 3:28 PM

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 :)

Nov 01, 2015 4:28 PM

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.

Are your winters hard on you?

Nov 01, 2015 7:15 PM

I'm in Oregon.

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.

Nov 01, 2015 7:24 PM

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.

Nov 01, 2015 9:25 PM

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. 🙏🌼

Nov 01, 2015 10:16 PM

Thank guys for the warm welcome. Ferrett explain pls what is dmso and are you saying you have Crps but got off all medications by walking?

Nov 01, 2015 10:18 PM

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

Nov 01, 2015 10:24 PM

Wow that is unique! I miss home (Overland Park, Kansas) but I don't think I could do the weather anymore. Arizona monsoon kills me tho. Have you girls been able to finish school at school?

Nov 01, 2015 10:30 PM

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

Nov 01, 2015 10:32 PM

No, I appreciate you sharing and I think it's courage that you got your GED. You took the fastest best route for you. Have you thought about online classes for college?

Nov 01, 2015 10:35 PM

I have! I just have no idea what I want to go into haha I am torn between degrees :p

Nov 01, 2015 10:36 PM

What are your interests? Just start w the basic core stuff

Nov 01, 2015 10:43 PM

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

Nov 01, 2015 10:51 PM

That is really cool. Maybe volunteer make up for a few youth theatre productions to start a resume.

Nov 01, 2015 10:52 PM

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 😊.

Nov 01, 2015 10:54 PM

Oy, glasses = classes lol

Nov 01, 2015 11:02 PM

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 ^.^

Nov 01, 2015 11:03 PM

Very cool

Nov 01, 2015 11:21 PM

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.

Nov 02, 2015 7:24 AM

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! 🙏🌼

Nov 02, 2015 7:34 AM

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.🌻🙏🏻

Nov 02, 2015 8:13 AM

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

Nov 02, 2015 7:58 PM

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.

Nov 02, 2015 8:46 PM

Pain scales are not real for us w Crps - livable is a good word! Ignorant step mom would suck. I am so sorry

Nov 03, 2015 10:04 AM

I can't even wear socks or shoes :/ I have been trying to wear fuzzy sucks but it is soooo painfu .

Nov 03, 2015 10:26 AM

Jenna, I was the same way, but my circulation is a bit better now. I remember having bare feet, and people commenting "whys your foot all red and shriveled? Did you burn it or something..."

Nov 03, 2015 10:41 AM

I usually get the "does it look like that because its cold outside and you don't have shoes on"

Im in Ohio. Its usually cold lol

Nov 03, 2015 2:43 PM

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.

Nov 04, 2015 7:43 AM

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!

Nov 04, 2015 10:24 AM

A couple things to try: horny goat weed supplement (increases circulation) and DMSO

Nov 04, 2015 3:24 PM

It used to be called RSD and I've had it for 30 years
It's not that rare but it is horrible especially on top of fibro.

Nov 04, 2015 3:27 PM

I have CRPS along with fibro and everything else...CRPS is a pain in the rear when it shows its ugly head :(... Good luck!

Nov 04, 2015 6:50 PM

I have Crps feet to hips. Find a pain specialist and have them refer to neurology then you have created a team to help you. Find a new dr tho and maybe a new perspective

Nov 05, 2015 4:16 AM

Thx guys appreciate the feedback

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