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Looking to connect with others who have RSD/CRPS

Feb 06, 2016 12:38 AM

Hello, I'm new here :) I would love to talk with others who have RSD. I've never met anyone else with it during the 12 yrs I've had it. As many of you know, it's hard for people who don't have it to understand.
I recently had surgery and the nurses pre and post op were TERRIBLE to me!! My family agreed it was terrible, but they don't understand why I am so upset about what happened. It was 2 weeks ago and they don't understand why I can't just "move on". But it really upset me to be treated so badly! It is hard to let go when I don't feel they understand.
I'd love to chat with people who do understand- both just about bad stuff but hopefully good stuff too!

Thanks!

Feb 06, 2016 2:45 AM

I know what it's like to be treated badly by those who are supposed to be healers. It's harmful and unfair. You deserve understanding and the best treatment available. Hang in there, utilize any support available to you and know that you are not alone.

Feb 06, 2016 2:49 AM

Hey there gardener! I also have CRPS I've had it for 7 years now. And i have had MANY nurses/doctors treat me very badly. So if you ever want to talk I'm here for you :)

Feb 06, 2016 6:47 AM

Gardener, I've had CRPS for almost three years now! I'll be having my third surgery next month for another spinal cord stimulator. I know it's not easy when doctors and nurses do not treat you with respect! I'm glad you know that people should not be treated that way you deserve better! I hope you like it here, I've found some relief talking to others with similar problems :)

Feb 06, 2016 2:28 PM

It makes me nauseated just thinking about your pre and post op experience. I am / was a nurse..ICC/CCU....it sickens me when I hear about awful nurses! Please know that we are all not like that. I would beg you to call and to file written reports about your experience... Send them to the administration and threaten lawsuit....you will be heard and they will discipline the nursing staff and units involved. Write it all down, copy it, send it in.I am so sorry you had a horrible experience. Much love and blessings, Terri

Feb 06, 2016 6:45 PM

Thank you all for responding. It was truly miserable to have the nurses be so inappropriate. I usually expect it (too many years of having RSD) but the pre-op appointment staff was so nice, I thought the rest would be too.

The Preop nurse in the day of had a fit re not putting the I'd tags on my left arm (the one affected by RSD). Then she had a full on temper tantrum about putting the IV in the crook of my elbow. I know all about starting IVs low but if they put it in my Right hand it a) hurts which can trigger the left to flare and b) I now can't use either hand, my left is damaged and the right has an IV... So I ask for the elbow where I have a lovely cooperative vein. The nurse was so rude I told her to get someone else if she couldn't handle it. She called down but was still rude.

The nurse anesthiesologist was worse! He ignored the orders for a spinal and told me he didn't care what the doc said, he liked doing general! He wouldn't listen to me at all! I had asked for a spinal hoping that killing the feeling to the nerves would help me recover better and lessen the chances of RSD developing in a new area. Luckily the Doctor anesthesiologist (I've never had a doc and a nurse anesthesiologist...) was fine with the spinal.

BUT the spinal to 10hrs to wear off instead of 2!! So I was stuck in recovery forever. I had a viscous headache which the nurse ignored (...spinal headache ignored!!). She was nice enough at first. But then she was angry that I kept saying I couldn't feel my legs. She acted like I was lying. I was there long enough the surgery meds wore off and I needed my regular meds. She got them but was a little fussy. Then later I heard her tell another nurse "she's in no rush to leave. She's just here for free meds!"

I was seriously crushed. I Really wanted to go home!! But I couldn't feel my legs! I couldn't urinate because I couldn't feel my abdomen either! I had only asked for my regular meds- nothing stronger. Why would she say that??? I wanted to cry and scream... But what would that do? She'd sent it and I'd look even worse...

I tried to get up to use the bathroom. I knew I just had to leave! I still couldn't feel but I pushed and pushed until I urinated. I was sweaty, nauseous, and my head wanted to crack open but I was done with this hospital!

I puked on the way home- 1st time in 6 surgeries. My head way killing me as was my back. ...those didn't stop. I eventually ended up in the ER for a spinal leak- I believe caused by forcing myself to urinate when I couldn't feel- because of the nurse's nasty comment. My back still hurts...that is likely from the FIVE sticks the inept nurse anesthesiologist tried. The doctor had to put the spinal in.

It was just terrible!! I cried when they said I had to go to the ER...I knew if would be another round of waiting and skepticism. I wanted to feel better but I didn't want to be subjected to the ER. Every ER visit since my diagnosis has been TERRIBLE.
I cannot stand to be treated like a crazy drug user. I got RSD preventing a child from getting hurt!! The bookshelf fell on me, not them! I didn't ask for this. Even though I have RSD, all I want is to have as much normal as possible- and be treated respectfully. Before this I never took meds. Now I do - so I can work full time, be a wife, finish grad school. I use as little as possible to function. I'm still in significant pain... I don't need nurses treating me like a druggie!!

I did write a letter to the hospital. I am still edifying it. But I will send it. I hope it helps others. I'm scared for life, again. The words "surgery" and "ER" bring tears and panic attacks now... Too many terrible experiences...even just thinking about it. That is so WRONG!!!

Thank you for listening!

Feb 06, 2016 7:07 PM

Reading this brought back so many memories of people treating me like I was druggie and only wanted pain meds....when I was 12!! Like what 12 year old goes to the er because they want pain meds. A lot of Dr's and nurses dont understand rsd most have never even heard of it!! So many people have it And it goes treated like its just a cold or something minor. So I totally understand your frustration and anxiety. I get panic attacks any time I even have to go to the doctor because of how badly i have been treated all these years. Your not alone. And i think it is definitely a great idea of sending a letter. Of you are able to try to find a CRPS specalist. There aren't many but since I got mine, any time I go to the doctors, to the ER, any where that involves my CRPS I tell him so that way of any thing comes up with a doctor not understanding i have them page him so he can basically tell them that I NEED a special type of care and usually it helps.

Feb 06, 2016 10:33 PM

Thanks JennaReimer!! I like my PM doc but am in a weird place. He treats me under Workers Comp...so he is reluctant to enter into any non WC issues. He will talk to other docs absolutely necessary but it's exactly easy. Part of my frustration is that my RSD is WC, fibro- not WC...getting treated for both when the PM doc technically only treats WC issues and the rheum won't treat me because I have a PM doc. I'd really like someone who understood all of this and could see me as person, not a body part. And maybe answer a few more questions here and there...

Feb 06, 2016 11:04 PM

If you ever want to talk to me like not on the forum my number is 2167032632
You can text me any time you want. I might not reply super fast because of tiredness, But i will always get back to you. We might not have the same experiences but I understand what you are going through.

Feb 07, 2016 10:54 AM

I was diagnosed 2010 and pain intensity has increased this last year by two fold. CRPS/RSD has caused me to be house bound, no socialization, family thinks I am lazy. I have begone to have tremors, cramping, etc., but with all the symptoms when you have a invisible disease I have found people do not believe what is going on inside. Insomnia is very bad, which causes marital difficulties.
I have looked, research in my current location support groups and have found none. Sometimes I wonder how can I deal with this for the of my life. I was a therapist/social worker and for 25 years I was oncall, access individuals for med, therapy, etc.. My clientele was always juvenile delinquent, youth with severe behavior or mental issues. But in June of 2009 all change when I was attacked at work, mind you I have numerous black eyes, bruises, etc. I never thought that an assault would end my career and send me in a downward spiral to a house bound, PTSD, tremors, high chance of falling, etc.. For those who have been diagnosised with this condition unfortunately I have the work, education experience now I am experiencing the client side.

Feb 07, 2016 7:04 PM

Thanks JennaReimer!! That is so kind of you!! I've been looking for a place to find others to talk to- who understand! Wish I had found this *before* the last surgery, but I am very glad I found it now!!

Khloe2013, I'm so sorry to hear your RSD is so bad! I am so lucky I can still work. I live in fear that could change any time! I hope you can find a doctor that can help. I've never found a support group (until here). But finding a good doctor and the right meds made a world of difference!! It took about 5 years to be diagnosed and then go through some HORRENDOUS meds.
I, too, was hurt at work. Its beyond hard to be in pain everyday and then be treated as a faker or drug seeker on top of everything... I want to scream at people- "I saved a child from serious injury damnit!! I put myself in front of them so they would be safe!! Give me a break! I never asked to be hurt! I just tried to help someone!!" Telling that story sometimes helps, but there isn't always opportunity...or people have already judged. I hope you find someone who can help you get more of your life back!

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