CRPS/RSD Under Diagnosed!

[tgafa92]

hi there,

i myself at age 18 have been diagnosed with crps and share the same story. it took too long to get treatment and answers causing the condition to become permanant. my case however id on in a billion, starting in my left arm, spreading through to the other, then my legs, soon followed by my face now its building up in my spine. thoughts are with you.

[RNDakaCRPSakaRSD]

My sister has RND. Anyways can you go check out my channel?(:

[starkiss0708]

My mom has RSD, she has had it since I was eight years old and I am to turn 21 in a few months. Its really annoys me how many doctors don't know or understand what RSD is. I hate having to go with her to the hospital because of the pain is so bad and the doctors tell her it is all in her head. When I ask them if they know what RSD is the say they have heard of it but no and I explain it to them. Doctors should not say they can't help when they don't know what they are doing. They need to learn.

[johnnylightning11889]

im 21 just got diagnosed, my pcp literally looked at me and blatantly ignored my symptoms, he said "it will burn out, you'll be okay, just take ibprofen." i wanted to smack him, dont take n o for an answer. dont let them make you sufer, i live north of dallas, ya'll wanna set up an awareness rally? lets do it and prevent other people from suffering like this thank god i only stage 2.

[whirleygal]

Completely frustrating to read even more stories of symptoms being ignored & being viewed as a head case. I was diagnosed in 07 w/ RSD. Prior to my seeking a specialist I spent months trying to figure out why I was in so much pain from just a sprained ankle. Several doctors ignored my tears. Stage 3. Right lower limb & foot real bad, left foot. both hands now. Gentle Hugs to all.

[temt11]

i'm not sure if it fits my mother's issues...

if someone could help me out here...

she had a back surgery 3 years ago and since then has had multiple problems that seem related but unrelated at the same time. she's gained a ton of water weight from horrible edema and has terrible pain that seems to be spreading. they said she had cellulitus because her legs were turning red and getting hot...

no amount of pain meds seem to help...

does this sound like CRPS?

[melgus99]

Hi,

Could be, but she needs to see a pain medicine specialist, rheumatologist or neurologist for a diagnosis. See that she gets a referral ASAP incase it is CRPS.

[itisoktobeme]

Nice video.

[JOSYMOL]

I suffer from CRPS/RSD for the past 2 years & 10 months. I am a 30 years old male and my problems started at 28 from an incident at work in my foot & ankle. Now is affecting both sides. Look at my video in my channel under the videos link. My Long Term Disability stoped paying disability benefits because they claim I can work at my last work as a truck loader in a warehouse loading by hand 7,200 pounds of freight inside trucks and they claim that I dont have anything medically wrong.

[clinge01]

@JOSYMOL I am currently going through the same process. soon i will be on the streets if they are successfull in cutting me off. I saw the Gov. Dr. yesturday, who was a total henchman. Can you give any advise. Good spee.

[4frogy]

I was diagnosed by my hand therapist after my cast was removed with CRPS 18 months ago. I thankfully started treatment straight away. I still have regular block anesthetics & feel better. It might have gone to my back. I need to have surgery to that wrist and have been told of danger. Keeping the pain of CRPS + damage with ltd writing and typing, or tempt major reconstructive surgery with either the prospect of recovery and work or possibly be much worse? Like to risk it. Anyone same situation?

[flowerchimp]

Thank you again for making onther wonderful video to inform those who thing we are imagining this.

catherine :)X

[dancerfromtheheart12]

now i am fighting this disease in my left arm. i will be going to seattle childrens hospital to go there for at least 3 weeks.

[dancerfromtheheart12]

hey guys. im 12 and i have crps. i was diagnosed when i was 10. it started out in my foot then whent to lucile pacard childrens hospital at stanford. a special thanks to my doctor (dr krane) for getting through the pain and i was going without pain for a couple months. but... it hit my leg again. i went back up there and it took 2 weeks then i was out

[melgus99]

Hi there,

I am so sorry to hear of your ordeal with CRPS. Gosh I was told I was too young to be suffering this much pain when I was 24 years old. I can only imagine what it is like to have this pain from the age of 10! I really hope you can beat this thing and get some of your childhood and your pending teenage years back! take care, Mel x

[Naanad]

I'm so sorry dear. Don't give up. There is life after diagnosis. Just requires a change in some plans. I was diagnosed at 30 and my mother has it too. Just keep your head up and remember.. The body might be hurting you the YOU is stronger than it.

[sarahbaro]

Thanks for posting this. I am 15 years old, and have a"pain syndrome"--not CRPS, but not pleasant, either. Fortunately, doctors believed I was in pain, but it still took 8 months to get a diagnosis. I have been in horrible pain for almost 11 months now, and just got my first pair of crutches. Anyway, kudos to you for raising awareness!

[melgus99]

Hi there,

Pain in general and all pain syndromes have a tendancy to be under treated!! So raising awareness of any pain syndrome does help in a way. Sorry your so young and battling with pain! Mel

[Naanad]

I'm glad you holding on. It's not easy to hurt. And I'm very glad the doctors listened to you. Too many adults are addicted to pain meds and lie to get them. So they can't listen to us as much. Keep your head up and if you ever have a chance to run again. Please do a lap for me.

[melgus99]

Hi Naanad,

Thank you. Do I know you? Did you know I used to be a runner? or Divine intervention? Had a lot of that lately! Would most certainly run a lap of honour for you!! Mel

[Naanad]

I guess you could say it felt right to say it. So maybe we'll find out later. *winks* Nope don't know you but I'm wishing you the best.

[scaredbutstrong]

I have recently been diagnosed with RSD. It took such a long time to diagnose. I have it in my feet ankles both legs and my forearms. People really think it is all in your head because they cannot see the pain, but since my dx I have had anyone who questions or doubts to go online and see for themselves that the feelings I have are not all in my head. Thank you for this video and spreading awareness.

[slayerchic3]

i feel ur pain

[melgus99]

Hi Gerry,

Thanks for dropping by, catch you around.

Mel xx

[motoryachtkarilla]

Hi, Mel. Our paths have crossed on Natalie's forum, I believe, and the one Sandra ran. I hope you're bearing up, and having more good days than bad. Kudos for your work in raising awareness. Gerry.

[jabbwolf]

Mel, Awesome job you have done here.  Thanks for spreading the awareness, and helping others to learn of CRPS/RSD. I'll see you around the coffee house! Ang

[melgus99]

Ahhhhh, That's you Ang! LOL Thanks for dropping by and leaving those lovely comments :) Yep see you around Coffee House!

Mel

[kriemy]

I am excited to see that someone had courage to put the video out there for people to see and hear. I have been "newly" diagnoised with CRPS/RSD exactly 6months today and still I cannot come to the realization that this is my "new" life. I'm 26, HAD a great career, benifits, great pay, married only 4years and then the monster came after a Morton's Neuroma foot surgery on my right foot. I will be a subscriber to your video's. Thanks again.

[melgus99]

Thank you Kriemy. I'm 27 but have had this for about 4 1/2 years. I hope you get the right treatment and achieve remission. The courage came from my own experiences and I know others out there are in the same boat. I just want awareness and change. Thanks

[DrowningYourDreams]

Thank you for posting this. I've been living every day with this syndrome affecting the majority of my back post-surgery 5 years ago, and one of the worst parts is feeling alone or crazy about it all. So thanks for putting yourself out there, and I'm so sorry you're going through this too.

[melgus99]

Thank you. There are a few good support group forums for people with CRPS. I have found them helpful in not feeling alone or crazy!

take care