RSD/CRPS , Pain and Living with Invisible Disabilities

[patsed3]

Thank You for sharing your story of CRSD (RSD), it baffles me how others can be so cruel, if they had only known how much you really do suffer they would have never put that hate note on your car. It angers me to hear that but, I am so proud of you for calling the paper and telling your story. I suffer from CRSD and a host of other pain issues stemming from an incident that occured on the job when I was working as a Nurse. Like you I am invisably disabled. Thank You for your courage.

[zoeyjusko]

My God woman. It's a miracle you're able to function at all. I admire you very much for making this video. It's so important to spread awareness. Don't let the haters get you down. People like that are miserable and empty inside and that's why they hate other people so easily. I'm in the healthcare field and I'm just now learning about RSD. Thank you for uploading this video. You are a tremendous inspiration for so many. You will be in my thoughts.

[yaahme]

Yup, Ive been dealing with RSD for over 10 years now and it is just indescribable.

On the parking: Twice now where I forgot to set up my placard I actually had my car scratched. I know my head gets in a cloud sometimes with this and I lose myself at times, but yes, people can be horrible, judgemental etc. One time someone stated to me that he didn't think I "looked" disabled and I just thanked him and went on my way. How nice huh?

Keep the faith.

[emmazoey2]

Thanks for making this video. I have RSD and also use a handicap placard. I don't 'look' handicapped most days. No one has left a note yet, but I've had a few looks. I'm so sorry that happened to you! How mean-spirited. I'm sending loving positive thoughts your way- hope it cancels out the negative. Take loving care of yourself, and stay in charge of your own healthcare. It's what I am striving to do right now; it isn't easy when you face condescending doctors. Holding onto hope! Love, Cindy

[slayerchic3]

i feel yuah on that one i have rsd and fibro and several other "handy caps" and im going on 28 and i have a permin placard on my car and i feel the stares and looks and judgement too 0_o soft hug

[Suzydukettes]

@slayerchic3 thank you for all that you said , it is sad to know how many others suffer too. I send you soft /gentle hugs too and you are soo young, I'm so so sorry ... if you ever need a friend, Im here and on facebook too ;)

[sherryschmidt39]

@Suzydukettes

[iceteabeingstirred]

Thank you. Watching this video has helped me realise that I'm not alone. I've had CRPS for 5 and a half years now, and every day it's a struggle to get up and try to live. I am so sorry to hear about everything that you are going through. This pain is awful, and nobody should ever have to feel the pain that you do. I, too, have been judged about parking in a disability spot, even though I was on crutches. It breaks my heart every time someone doesn't believe in this pain. xx

[Suzydukettes]

@iceteabeingstirred thank you so much for your kind note a;nd I'm so very sorry you have had CRPS for 5 yrs and half thats awful...I've had it just since 2007 but since 2002 have had horrible chronic pain from car accident,surgeries, screws in shoulder, long thoracic nerve damage in other shoulder, bone on bone knees, herniated and bulging discs in back and just so much pain...now i've just found out that i have "agammaglobulinemia" a blood immune disease and im scared and sad to have more...xo

[Khepri666]

Bless you Suzanne! Nobody should have to deal and suffer with so many physical problems. You have all my blessings and wishes. You're such a strong willed person to keep your head up after all those things.

[Suzydukettes]

thank you so much for your heartfelt empathy...you are very kind..I do feel like a strong person and I will keep my head held high...thank you again :)

[TheChromeStallion]

Ohh and thank you for making this video and letting people know of this syndrome/condition. I hope you feel better and God bless you. Nice meeting you. Bye.

P.S.

I will make a video of my condition soon. Take care....

[TheChromeStallion]

I have to use a power-wheelchair now because of the CRPS combined w DJD/Post Traumatic Degenerative Arthosis/Osteoarthritis, etc & not even Methadone has helped me w the terrible pain. I try to distract myself from the pain & spent most of the day here in youtube & the internet, but its hard, not an easy thing dealing w the constant pain/swelling.

Sorry you had to go thru that idiot who wrote that paper. You are honest & you know what your going thru & that's enough. I hope you feel better;)

[TheChromeStallion]

Hi Suzanne. I'm sorry you are going thru all this pain. I know that feeling when someone is looking at you funny cause either they dont think you deserve a handicap tag or that you are really disabled. It's a horrible feeling. Same thing with some doctors too, that they look at you like if you just want attention or if you are exagerating, etc. I'm 31 now but I had CRPS since I was 28 & I have not been able to work ever since. I've heard it all; the pain is mental, is not real, is in your head..

[jomalby]

Thank you for sharing this. My heart goes out to you. I've had RSD for 10 years now and fibromyalgia since 2004. Sending healing blessings, Jo x

[Suzydukettes]

thank you so much for your kindness. your notes are very very nice and appreciated. you never know if ppl will make fun of you or like it? so thanks so much...xo ,suzanne

[jomalby]

Thank you for posting this.. My heart goes out to you x I've had RSD 10 years now and fibromyalgia. Sending healing blessings, Love Jo x

[ratprincess]

Good luck to you and thanks for sharing!

[Suzydukettes]

aww thank you so much for writing a sweet kind note to me re; my video..that was reallynice of you..thank yoiu again...you never know if ppl are going to think you are a goofball or like it...lol..thanks..suzanne

[vladandlilith13]

I have had RSD in my arms/hands for 2 1/2 years with no hope of remission now. I am glad to see someone post a video about RSD as it is poorly understood and often unbelieved by friends and co-workers. I was a fairly famous hairdresser for TIGI when I was diagnosed. I have tried everything to help, but nothing seems to help. I take enough narcotic painkillers that would kill most people everyday of my life that result in only 'Taking the edge off".God bless yeveryone with this horrific disease.

[Suzydukettes]

thank you so much...i was kind of scared to post a video with me in it...but i did think ppl should know a real person who has RSD...thanks again and im very sorry that you have it also!! love,suzanne

[sherryschmidt39]

@vladandlilith13 I just got the Spinal Stimulator installed because I was in the same situation as you . I would go ahead and try the Stimulator and get yourself off these drugs. Susanne , thankyou for posting!! We all need a support groung and I believe that is what we should start. Keep the faith, Sherry from Rocky River, Ohio

[Suzydukettes]

@sherryschmidt39 Hi & thank you for your response to my video...luckily I have a pain dr that is working with my GP together. they've told me "not to worry because at least I have a life off of the couch now" . Meds are helping, they said they will worry about it.The reg ins won't pay for it bc it was an auto accident that started everything.I am adminfor a support group with over 700 ppl in it on fb .  *I have RA,DDD,OA,& more

[Suzydukettes]

@sherryschmidt39 thank you for posting you are so kind. The scs will not work for me. I have a pain Dr working with my GP and they told me they would "worry" for me and for me NOT to worry...LOL..I was on the couch for 3 yrs and the meds are helping me have a life at least. I almost had a morphine pain pump but ins wouldnt pay bc it was from MVA and auto won't pay for it...I do run a support grp on facebook "invisible diseases especially chronic pain and RSD/CRPS" if you can find plz join :)