RSD/CRPS , Pain and Living with Invisible Disabilities

This is a video to educate people regarding RSD/CRPS and chronic pain, invisible disabilities. It is for the facebook group "RSD/CRPS and Educating people about Invisible disabilities "

Category:

Education

Tags:

• RSD
• CRPS
• chronic pain
• Invisible disabilities

[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 ;)

[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

[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.

[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 :)

[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

[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

[sherryschmidt39]

@Suzydukettes

[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