Discovery Health's "Mystery Diagnosis": RSD (Part 2 of 2)

[amber12345678999]

I'm so glad that she didn't commit suicide. Everyone would've been so sad especially her husband. there is always something better around the corner I would hope.

[lexcreed1]

this is super bad btw @mabith i will pray 4 u

[AmethystAnna]

I was diagnosed with RSD, but I don't believe I ever had it. My pain was terrible but it most likely was all in my head; it took some incredible will power but I decided that I couldn't hurt anymore and I had to live again after 2 years in bed. Eventually it worked and today I'm 16 and can function almost normally. But from what I hear RSD can't be treated so easily as that (it wasn't easy, but I didn't have to have PT or medication or anything) I guess I'll never know for sure.

[luvyourpets08]

I have not been diagnosed yet with RSD, but I know now that I have it. I have studied many medical websites and now I'm looking at some videos. This may just keep me alive. The burning pain is hideous, but I'm lucky it is localized to my right foot though I have freezing cold legs up to mid-calf and severe edema. Thank god there are answers and when I see my doctor I will mention this. Thanks so much for uploading these videos. Vicki

[Blankname101]

Poor girl had this on going pain for 13 years.Happy it's behind her now

[randomestperson121]

Im 16 with rsd...this video does show awareness...but it misleads that there is a cure. There is no cure. Everyone is different, and intense pt doesnt always help. In fact, it can make a person worse. We need a cure.

[avticotin]

i am 13 and i have RSD ... this woman is very strong and her husband is amazing thank god she got her life back

[imalittlechicky]

i want a husband like him! sooo carering

[springchickn]

@subarkts :did you see the facebook page "Oprah Stole My Favorite Channel, Discovery Health"? We have inspired Discovery Communications to merge Discovery Health with Fit TV, the facebook page was mentioned in The New York Times and you can find a link on the page for the video I made on TY of the same name, Oprah Stole My favorite Channel, Discovery Health! Discovery Health was and will remain the best!!!

[anabell4848]

awww, what a good husband. I want someone like that in the future.

[ZProGamer]

you know i was thinking if you are driving and speeding because you robbed a store you would get chased by cops but then if you speed at times of death cops dont come

[isthisthecure4rsds]

I think I can help others get rid of their RSDS pain. Search for my username and find my blog and you can make up your mind. I'm not making a penny (yet, but maybe if others agree I'm right I can) on this, but I think I can help others....It's a w o r d p r e s s blog.

[xSimplyAmusedx]

You should not take antibiotics they are like poison to someones immune system! natural green medicine made without any drugs and a good diet has helped me a lot I have arthritis (try computer diagnostic)

[isthisthecure4rsds]

@xSimplyAmusedx

You're right. Check out my blog on wordpress, searching for my user name, to find out how I'm treating RSDS without drugs, taking away ALL the pain, and may be curing the disease.

[papatoony]

So what were the drugs she took!?!?!?

[odcs2010]

i know a girl who has this disease, and she looks miserable, but im always there for her support, shes doing better now, but she is still in pain. shes a trooper

[kkingcobra2155]

this is terrible belive me i know im in alot of pain too

[UNSEENPATRIOT]

I have RSD, you'll notice they didn't say what she was taking that helped...What was it, Neurontin? This video is good but it gives those of us which have this false hope....there is no cure and everyone is different. I am glad to have found this video as it it brings about further awareness of RSD/CRPS..

[ESVM59]

This video is misleading. It make is sound like there is a cure for RSD. Hard work won't make it go away.

I have had RSD since 2002. I am in pain every moment of my life. I get very little sleep. I have had every treatment except hyperbaric and induced coma. My family doesn't get it. I'm lucky to have a husband who is an angel. Most doctors don't believe RSD exists or even know what it is. There needs to be more research done. RSD has been around a long time; it is just now being acknowledged.

[carolanivey]

I have rheumatoid arthritis but look pretty normal so I know what it's like for people to look at you and believe nothing is wrong with you, that you're just "lazy" or "looking for attention." But I've never experienced anything like this so my heart goes out to you all and I'm glad there is hope for successful treatment!

Has this been classified as an autoimmune disorder, like RA where one of the body's systems attacks itself, or is it strictly neurological?

[mistyblueshores]

I was diagonosed september 1990. I met  prof. dr. VASEY.. I challenged and also got angry with him for two years. many doctors and tests were done.. no doctors find any cure.. I was in denial and but meet one of his former student and now is orthopedic doctor which he advised me to go back.. I did and I am so lucky and blessed that he did treated me for RSD for years. I owe my life to his retired great doctor. Thank you dr. vasey and many doctors around the world to help rsd patients...

[armi555mw]

My pain came after a crushed elbow. Same story. Many med schools and Doctors. Studies shows nerve damage, but told PN. My skin feels ice cold to others, but on fire to me. Muscle twitches, dizzy, ect. Mayo said possible RSD, but couldn't stay for months. Have begged my Neuro, even strong meds don't help. She says Neuropathy, but ignores all my symptoms. Have lost family and just sitting in my foreclosed home waiting to be kicked out..then I'll just have to finish it.

[adunkin2014]

I too have RSD/RND im only 14...living with the pain is now a part of my life ive been through the program in PA and its helped. i used to just have it in my lower body but now its spread through out my whole body. all i can say for other patients for RSD/RND exercise daily!!!!!!!!!!!!!

[TashaRichardsonFan]

It must be horrible and torturing to be in pain. :O

[usecori]

I hurt like he**, but there is no medicine that will work effectively for stage III RSD/CRPS. I'm on everything, get shots in my back, even am a legal medical marijuana patient (doesn't help the nerve pain, but the spasms, yup). It's amazing, one diagnosed, they throw every drug in the book at you. But, before THEY get the diagnosis right (10+ years for me), I'm S*** out of luck. I've lost everything to this disease, even my family, except my wonderful, 82 yr. old dad. That and my son.

[2plainjane]

you have god

[usecori]

I most likely will die of this. I have smooth muscle spasms and this has created a heart attack, and 5 coronary (heart) spasms. The physiological wind-up is incredible. I am kicking out 1/3 more than normal adrenalin. My legs are gone, use-wise, but still extremely painful. After the last trip to the ER (a few days ago) where they (again) averted a heart attack.

[usecori]

My hands shock me every time I touch a keyboard. I can't drive, walk, go down stairs, losing the feeling in my hands..My head feels like it's going to blow off from bouncing blood pressure. It's very high right now, but I'm SICK of going to the ER. I about freaked when the nurse started slapping leads on my legs. I explained my issue, asked her if she was familiar with how to approach a patient with full body RSD, she bites my head off. When the Dr. came in, she was dismissed.

[YaTuMaMaTaBieN]

My advise for RSD patience:

Breath exercise in the morning for 15 minutes(6 sec taking breath,7 sec

breath out by slowly)

give 8 month for relax your all muscle

(no more heavy activity)

went for massage theraphy (full body)(light not too heavy)

give a try,don't you just sit there and do nothing..

to cure this you have to do it yourself

[ViaLeigh92]

I have to talk to my mom. she couldn't raise me due to this disease so i have wanted desperately to find a cure.

[DarkSilverYoshi]

I can not imagine anything like this...its amazing what our body can do with a simple signal that was read wrong. I'm glad they figured this out though. God bless anybody who has this and who can not find a treatment.

[hollyzone]

I'm so happy for cynthia and john. what a horrible disease!

[pokealong1227]

after a while...

if u get it everywhere in ur body like me

meds dont help and you just have to deal with it and wait for it to pass or try doing therapy on yourself

[marilynmansonfreak93]

thats basically wat i do i did therapy last summer and they did shit 4 me when i had a friend who went to the same place and she did way better things there then me so i quit it and did it at home i was on cruthces 4 like 7 months and now im walking with a cane :) lol

[pokealong1227]

im not walking at all, im in minnessota

mayo clinic is trying to help me

[marilynmansonfreak93]

im sure the weather doesnt help either cuz i know when it gets cold here it hurts way more

[xennondiablos]

Dr. Edward Carden is great I hope some doctors here in Philippines are like him, doctors here in Philippines are thinking only money

[usecori]

I am on Neurontin (antiseizure drug), tizanidine (muscle relaxant-this really helps with the spasms), morphine, and Ambien (for sleep-which happens after several days and then only for 1 1/2--2 1/2 hrs). I need what I'm on, but I feel like a human pharmacy. I also get sympathetic blocks in my back-the neurologist wants me to do at least 10 more. At some point I'm going to run out of money and insurance. I'd rather die than be homeless in a wheelchair.

[gravisbh111]

i think healthcare in usa is very expensive, why dont u try to go to other country...sounds really freaky, i just want to help, it would be good for you maybe goin to cuba. I live in mexico and here you can have a way cheaper health treatment, and mexican doctors are great. Fight for you.

[usecori]

That's cool of you to try to find a way to help, don't ever change. Unfortunately, I'm having a hard time even getting my prescriptions filled, as I'm relying on family for everything. I can't cook, shop, do laundry (can't go down stairs). Full body RSD affects every organ. Right now, my diaphragm (breathing) is very difficult. I've come to accept my fate, but it's going to be a scary ride. I have so much pain that I can go up to 9 days without sleeping. I'm just worn out.

[MChell87]

have you tried acupuncture? sometimes they do amazing things. also, what kind of support systems do you have? whatever you do have, maybe they can help you cope. and what kinds of things help you cope? pain must be so difficult both physically and emotionally. did you say the antiseizure medication does not help you? try yourself looking into other neurological medications that can perhaps inhibit the pain and talk to your doctor about that since RSD seems to be so new, and also research RSD

[aonoodle11]

im so sorry :(

[usecori]

I have this and I cannot walk. My husband couldn't handle it, and is now with someone else-after 31 years together. I wish there were more men around that would go to the mat for their partner. I've seen so many women do this. I read a study that measured that the hormone oxytocin (a bonding hormone) rises in women when their partner is in distress. They measured men, and not one of theirs had risen. Too bad John wasn't in the study. I've sen too many men leave their wives in the dust.

[bananaduckproduction]

why would your husband do that to you?

i hate men like that, because it seems to me that he doesn't care about you. you should go tell him that if he doesn't care about you, fine, but you bet he will care for you again someday.

[lostindreams3]

What a jerk. Men like that should be banned from dating again.

[snakelover400]

Will you have to be on the meds forever?

[bff4ever1234]

I think till the pains go away

[macaholzapfel]

I have rsd for almost 8 years, some of US doctors treatme like a drogadict that was looking for drogs. I lost everithing I had, even my husband, I had to move to Chile with my family. Here, I foud the support I need from a group of doctors that wokr together. I go every day to phisical therapy for 4 hours, If I miss 2 days, my pain gets really bad. Write know I dont have a normal life, but I can plan my day, smile and help others with pain.

[zahirig]

cont'd

anesthesiologists, neurologists, paliative care, and physiatrists are specialists who have an intimate understanding of the physiology of pain.

[truemirror]

Her Mom and husband are amazing people, not many will stick around when there is sickness.

[adarkenedmind]

Anti-seizure medications are used for a wide variety of things. I'm glad that it works for RSD patients.

[sciencealwayswins]

I hate it when doctors jump to the "mental illness" conclusion. Sure, there are people out there who fake illnesses for attention, but is it really worth to risk someone's life just because you don't want to feel like an idiot for having indulged a patient's longing for attention? Blood ridiculous.

[conseler]

When I doubt anyone would make up pain, why is that notion one that Doctor's assume about anyone!!!

I hve had a similar experience, and was "fixed" by a doctor who didn't cop out just blaming me for "making it up", which I would not have wished the pain on anyone, especially myself!

[adarkenedmind]

I would like that doctor, too. He's really smart and effective. I think that they should stop with the every problem is psychological attitude.

[MaryJamesMurdoch]

I am so sympathetic for Cynthia! Her story is incredibly sad and ironic!

A dancer suddenly bound to a wheelchair who is in so much pain she can't stand the breeze on her skin, and the whole time her doctors and friends think she's faking everything!

[kileenmarie]

Thank you for a great explanation of this disease. What a brave couple. I liked the doc's analogy of the chicken and the egg. So many docs give up and blame the vistim. Thank God for this doc and thank God for this couple's persistence. I wish them years of happiness.

[dontlistentomeimmute]

poor woman.. im happy her husband stood by her.

[tiredmeadow]

Her husband is amazing...

[MetalChick1982]

very stong...

[allThebestHits]

@tiredmeadow he has a small d ick. that's his secret

[crazzioveru23]

poor woman!

poor poor poor lady.

it must've been horrible.

the pain..

for so long.

:(

[zahirig]

It's really unfortunate for her to have taken so long to be diagnosed. I'm a second yr med student and I figured out that it was a neuropathic etiology after the first part. I haven't heard of RSD but I do know that severe pain that lasts this long is probably not nociceptive. After a few months I would've started her on tricyclic antidepressants. It's actually quite shameful that the neurologist didn't pick up on this. She should've seen a Canadian MD.

[zahirig]

BTW, research shows that tricylic antidepressants are currently considered the best treatment for neuropathic pain. 30% of people w/ this issue improve w/ TCA - which is really quite good.

[leighInSJ]

The fact that you're a 2nd year med student (at the time of post) and you hadn't been taught about RSD (CRPS) is part of the problem. This shouldn't be something that just pain management doctors know about. Cynthia's story demonstrates that all too well; this still happens to patients now, especially women. I was in the hospital for an epidural, and was amazed at how many nurses had never heard of it. Luckily, all but one was willing to be educated by a patient. It makes a big difference in my

[leighInSJ]

care for them to know certain facts about it, so I'm grateful to those who listened and learned.

There are way too many doctors who are all too willing to dismiss this. I'm very lucky to have found a good one on my first try. I wouldn't trade him for anyone. Unless they had a cure, because although I've accepted it, I still sometimes get extremely distressed at the idea that the rest of my life will be spent in this much constant, intense pain. I'm 36, so that's a long time.

[zahirig]

This must be very difficult for you. I'm very glad that you've found a sympathetic doctor - that's very KEY in any doctor-patient partenership.

I'd just like to mention for anyone else who is reading this is that the reason why not all doctors know about this syndrome. It's very rare. Most family doctors probably don't know about this but they should know enough to make referrals to different specialists who probably have some experience with it. To name a few:

[marilynmansonfreak93]

luckily my doctor delt with rsd so hes the one who helped me lol

[juliesgirl]

I have RSD too and I was lucky to be diagnosed after only 8 months. The orthopedist I found happened to have seen another case of RSD and recognized it. Luckily I am in remission right now, and I still have the ability to walk. I have limited movement of my left foot, but for the most part I am able to get around.

[leighInSJ]

I was diagnosed after a month, but my treatment was delayed by California Workers Comp system (ESIS in particular.) which is why it spread to my whole body. They still deny the diagnosis. Fortunately, I have a great doctor who told me the most important thing: keep using the affected limbs despite the unbearable pain, despite it getting worse. That's the only reason I haven't lost the use of my limbs. They're affected severely, but I can use them.

[fifisimp]

I had exactly the same problem, nobody believed me, they said i was crazy and i was making it up. But i found a pain clinic who believed my pain and prescribed me a lot of medication which is helping to control my pain. More needs to be done towards awareness of this disease. xx

[Wivanunu]

It's a terrible disease!!!

[ChgoChef]

I was taking 100 aleve's every five or six days before the SSD disagnosed me with RSD. We had lost our business and house prior to that. My pain started in my hands after surgery and worked its way down into my torso and leggs.

I'm also on gabopentin, oxycoten, darvocets, etc. I have cancer now so RSD is on the back burner. I had a tumor removed from my spine that left me with neoropathy(?). Pain is my friend!

[baby1995]

i feel bad for u

[chubbycubbie14]

I to have RSD and have gone through the same tests, Medicines, Nobody believing me, telling me its all in my head, that Im lazy, I dont want to feel better. I had to find my own Doctor that knew about RSD and how to treat it, Mine is now spreading, Ive been in and out of remission a few times, thank you for telling us your information,

[cataclysmic325]

dang..13 years of pain...

[mabith]

It probably wasn't just 13 years. She is most likely still in some pain. Remission can come occasionally but it doesn't usually last and drugs can only help so much.

I have RSD. It took me a year and a half to get a diagnosis. I had the support of my family, but all of my friends left me. They couldn't handle it and felt they were making me worse by telling me their small problems (not true at all). Mine has spread to my entire body.

[neobattle2]

good good just what i need

[dillzman]

very interesting, very very good!!