Elizabeth Weiss & RSD - PART 2

[jemcay]

How about an update? It seems that this video is over three years old. Is she better now? Has there been any improvements? My heart just goes out to her, poor thing.

[IceQn]

How is Elizabeth today?

[COOKIES4RENEA]

I have had RSDS since 1898 keep up the good fight liz. I wish there was more information for our families your meds sound just like mine but I dont trust the patch so I use the Azanzia 120 mg. I know this will sound sick girl but eat corn it was the only thing that helped me. Good Luck and God bless

[1thethe]

im not so alone now thankyou !sounds stupid i know but you have helped me for 7mins i did not think of my pain i felt for yours!

[Meganmose]

what cause RSD?

[IntheBlinkofanEye1]

It breaks my heart to see you suffering so bad. I, too, have RSD and know the reality of such pain. I will pray for you to have some sort of relief, if not a cure. Thank you for doing the videos which will make people aware of RSD. God bless you, truly!

[dbboi33]

It breaks my heart to see you suffering with this debilitating disease; I too have RSD and have suffered with it since 1984. A very dear friend introduced me to Mona Vie; It has controlled my pain by 90%. I made God a promise that if he would deliver me from this unspeakable pain that I would share his gift with All that suffer from RSD. Mona Vie is not a cure for RSD but the 19 fruits, omega 3 fatty acids, and liquid glucosamine are amazing; please go to monavie.com to learn more; God bless

[dbboi33]

It breaks my heart to see you suffering with this debilitating disease; I too have RSD and have suffered with it since 1984. A very dear friend introduced me to Mona Vie; It has controlled my pain by 90%. I made God a promise that if he would deliver me from this unspeakable pain that I would share his gift with All that suffer from RSD. Mona Vie is not a cure for RSD but the 19 fruits, omega 3 fatty acids, and liquid glucosamine are amazing; please go to monavie.com to learn more; God bless

[havenhust]

Hi,I had RSD changed CRPD to call from car accident 8years ago in Japan. that was not so seriously injury but I have been pained a lot of my left legs toes.

Many doctors did not believe me , they thought I needed money to ask from car accident, I do not use stick to walk anymore lately but still have pain. You know ,many people could not think or understand what CRPS is and could not think our minds that is so sad .Elizabeth..Keeps mind to another things .Cheer up please.

[unliya]

Wow, it makes me wanna cry! 

[TheConnie72]

Thanks for your strength for sharing what we go thru with this horrible disease. You are so strong to do this for all of us RSD'ers. God Bess you!

[eyedea81]

a difficult disorder to understand. most neurologist will dismiss this disease as a pseudoneuropathy of psychogenic orgin. too many studies with no clear evidence of medical understanding. same can be said of posttraumatic dystonia.

[truckinbaby]

My heart goes out to you sweetie. If I had the money I would give you all of it to go to germany and get that treatment. I will be praying for you and that things start coming together to get you relief. *hugs* Hang in there kiddo, a lot of people are praying for you!

[truckinbaby]

Amatriptalyne (sp) is actually an antidepressant but a lot of RSD patients are given it, its supposed to help them sleep but it did nothing for my husband. Lyrica also did nothing, Now he is on 2 types of morphine, oxycontin, Cymbalta, he also has the narcotic bowel syndrome and takes the same meds for the constipation. He has it only in one foot and ankle, for the last 2 yrs, going on 2 1/2 yrs now. He is about to have an SCS Implant to try to help.

[mychallauren]

Once again, thank you for putting yourself thru the pain to show people this disease that has distroyed so many lives. it has mines and has drastrically altered the lives of my two small kids (4 and 1) I have my rsd in the same place and it also started in my right foot from a break! May God Bless you & I hope you are doing better these days? I know how hard this is physically and mentally, just try and keep hope & I know sometimes easier said than done! Your are in my prayers!

[greeneyez59]

I was diagnosed with RSD after a failed back (spinal) surgery in 2001. The nerves to my left leg were damaged during the surgery. Most of themeds are mentioned are the same ones that I take. I am recovering from yet another spinal surgery now. This time to remove the DCS that I had implanted in 2004.Stay strong! I've lived with RSD since the summer of 2001. There is no way to describe the unbelieveable pain to some people.

[waddleduckie1]

I am very curious, is the pain like a burning sensation that radiates throughout the body, around the nerve area? And what type of medication do you take? And what about the numbness other than the spasm do you have?

[dp6224]

WOW!!!! Thanks for posting. I never heard of this before. I'm so sorry for you. May I please say that I have been healed of many things, and may have your answer. I know you have probably heard this and not want to hear it even one more time, but I know you can be healed. Ive seen MANY healed. I'd like to let you know how the lord has healed me and others I know. If you can, please give him one more chance.

[deanykc]

diagnosed with rsds.i thought i was going insane! mine is in my arm, i had a nerve injury at work over 13 months ago. i have seen many doctors!! i noticed you are on alot of meds too. i just wondered if you have heard of a dorsal nerve stimulator? i am going to get the surgery. if this doesn't work i am getting my sympathetic nerve cut! i too turn blue red and mottled! my temperature is freezing although i am buring up inside, even the slightist wrinkle on a sheet will bother my arm.

[menaugely]

Thank you so much for showing the world what living with RSD/CRPS really means. You are so brave. Keep fighting that fight. Many of us, suffering like you do, support you.

[Warlock0622]

Took 3 years to find a doctor that knew what RSD was and finally diagnose me. By then it was too late, I went from a very active workaholic and athlete to a wheelchair sitting on the sidelines watching my kids grow up without a normal daddy. You are a trooper and as much as this eats away our lives, you are lucky to have support as him. My wife is my rock, and i know how much it means to have that person there. Hope someday the world will come to know this monster we live with every day.

[clowe8339]

Elizabeth and partner: Thank you for documenting the pain and the situations involved regarding meds and other subsequent medical conditions that are created by RSDS (CRPS)...I have had MANY Doctors tell me that the color changes/unsteadiness/burning/c­old/EVERYTHING was NOT distinctive to RSD. I sleep the same way, jerk the same way while I sleep as you,my leg, etc. turn colors like yours! Thank you for making others aware, and the condition we can end up in if not diagnosed soon enough.

[Imaginaryflower]

I am so sorry to see Elizabeth's pain, my heart goes out to her. This is just devastating to witness. She is extremely courageous and generous. I really hope for a breakthrough for her and all sufferers of RSD

[IceQn]

thank you for showing the rest of the world what it's like. please, can you tell us where you got the foam leg pillow? i've been looking for a good one like that for my rsd-striken leg and the one you have looks perfect.

thanks.

[kover1963]

I was diagnosed back in 2000. I have been through the gammet of drugs. I am allergic to many so no luck there. I finally have found a little relief with percocet, oxycontin and topomax. I aslo use Flector patches. I have to take care of my parents, so I have to force myself to get up everyday. I thank the Lord for my husband because I would not get through this without him. I cry myself to sleep on a regular basis. When I can fall asleep its only for a couple of hours.

[Angelformehere]

I have RSD - many complications like bent tail-bone and vascular problems from past DVT. Also afflicted with severe arthritis, much of it from not being able to lean on my left side. When I could get to sleep it made a big difference but that was difficult. The Right formula for me was Neurontin 300 mg Norvasc 2.5mg, Lorazapam 1 mg, Ambien 10 mg. Now I sleep much better and can bath and dress myself in the morning. But it doesn't last long. Fentanyl PoPs help me travel and deal with social.

[Angelformehere]

Thank you Elizabeth. Great job and an important subject. I would like to hear more about how people suffer socially with this disease. I have it but those close to me suffer just for caring for me. How do I say anything that would make them sound less than angelic? There are still far too many people, including doctors, who try to make it a disease of character. Too bad people are so obsessively concerned with the drugs you take and not your pain. Damn weird.

[rebafanatic16]

What kind of meds would your recommend. I have problems with of course RSD, constipation, bladder pain, naseau. I couldn't take the neurontin because I had an allergic reaction to it. What about braces? I need them, but I haven't found one that doesn't hurt me more to wear.

[HOLLYWOODCURE]

Great job - from another RSD patient

[xxCrystalxLuvxx]

Elizabeth shouldn't be taking all those pain medications. Most of them can do alot of harm to the liver and sometimes even make septoms worse. There is a great doctor (Dr. Rhodes) in corpus christie that I believe can really help her. He deals with RSD and has cured many people. My brother being one. Elizabeth really needs help or this diese may kill her and for RSD pain medications are NOT the way to go. I strongly suggest that Elizabeth goes to see Dr. Rhodes in Corpus Christie.

[trudythomas777]

It is a very realistic video on a medium day for most of us with RSD. This is not even a "bad" day. If it was, you wouldn't have been able to film it. It must be hard for untouched people to imagine the depths of our suffering. Yet, we deal with it 24 hours a day. Because we usually only get catnaps. No thing such as a full nights sleep either. Even sleep would be a blessing. Keep these type of videos coming. Maybe someone will do more to help us find a cure or treatment that works.

[scooterlady1]

have rsd in left foot , iam from lou ,ky

[emsprincess11]

This just takes my breath away. Thank you 2 both of u 4 showing the world real pain. I have FMS, osteo arthrtis, several sugeries and my heart goes out 2 elizabeth and anyone suffering w/ any type of chronic pain..

[MsZulaCalifornia]

All those meds, all those side effects, all that money...have you tried ten dollars worth of cannabis? Marijuana? Many patients have have very good results from a natural, non-toxic plant. I use it daily, I have MS and never take pain pills now. Synthetic heroins and the like tear you up after a while. This was a hard video to watch. We all have to decide what we're comfortable using though as far as medication and side effects.

[dlgoldens]

Great job! - from another RSD patient

[julesrulesny]

its always good to hear what treatments everyone is trying. altho, most are known and most RSD patients have already tried...

my RSD was diagnosed 5 years ago now when i was 25. the medications which work extremely well for me are: Methadone, Fentora/Actiq (pill disolves in mouth - fentanyl based), Duragesic, neurontin/effexor

Some attention has been brough to "HyperBaric Oxygen Therapy"

i'm now looking into Deep Brain Stimulation and/or Spinal Cord Stimulator and/or Morphine Pump

[ivory311]

If Neurontin doesn't work for you, you should try Lyrica because it is similar but my fiance says it works better. Some doctors prescribe Cymbalta for pain relief, and it is also a great anti-depressant, so you are killing 2 birds with one stone.

[ivory311]

The 2 most effective pain medications my fiance has found is Methadone and Fentanyl Patches. He also takes Ambien CR, Xanax, and Valium to help him get some sleep and it also helps with his anxiety and depression. Some other good pain medications are Oxycontin, Percocet, Percodan, Morphine ER, and Morphine IR.

[ivory311]

I'm sure most of you have probably tried sympathetic nerve blocks without much success. I actually read that they only work in 5% of CRPS sufferers because most of a CRPS patient's problems are in the Peripheral Nervous System, not the Sympathetic Nervous System.

[ivory311]

Another treatment I just learned about through youtube is a girl who traveled to Germany and was put into a medically induced coma using a cocktail of medications. She had to travel to Germany because this treatment is not performed in the US because it is not approved by the FDA. Since the coma, she is now back to her normal life and has very little pain.

[melgus99]

Not anymore she is now back to square one going down the stairs on her butt etc Her mum has a website and blogs about how Lindsay is doing. It gave her life back for at least 12 months then she started getting the flare ups again.

[ivory311]

Another treatment that could work for some of you CRPS sufferers includes a trial of Thalidomide which is only prescribed by a few doctors throughout the US. Dr. Bengston at the Mayo Clinic is one of these doctors.

[melgus99]

From someone at the end of the road for all treatment, not everything works for everyone and every treatment has mixed results with CRPS/RSD patients.

[ivory311]

Some treatments that may be beneficial to other CRPS patients out there includes epideral catheters of Fentanyl, Bupivicane, Prialt, and Ketamine. Out of all these, the Fentanyl and Ketamine seemed to work the best. Ketamine is like a horse tranquilizer and can be infused through an IV in an ICU unit or it also comes in a transdermal gel and tablets.

[ivory311]

These are also some of the best docs in this field. My fiance's CRPS is from his waist down and is said to be one of the worst cases ever seen. He hasn't walked in over a year and some months.

[ivory311]

My fiance is 26 and has CRPS since March 4, 2005. He has been to the Cleveland Clinic in Cleveland, Ohio to see Dr. Stanton Hicks who is considered to be one of the best CRPS doctors in the US. He has also been to the Mayo Clinic in Rochester, Minnesota where he saw Dr. Locketz, Dr. Weingarten, and Dr. Hooten. Continued...

[slayerchic3]

why did u make her stand up so long:(

[tinapeer]

Hi Liesl,

it is great that you have this homepage. this way we can show friends in Germany what is really going on. Many people are interested in donating and helping. Even my physical therapist will check out your homepage. Shari - it is a wonderful thing you started.

Pls never give up - we will find a way to get you back on your feed. Kisses from Germany and a big hug.

Tina, Peer, Dagmar, Uly and all the girls...

[johnnyhardwick]

My heart goes out to y'all, my wife has had RSD for two years now. She is still able to get around okay physically though painfully for at least a few hours most days, but her pain is off the scale most of the time. She was on heavy doses of Oxycontin and Valium for over a year. Now, she is two months out of hospitalized detox

(the Oxy started to increased her pain) and ... managing pain thru gritted teeth, ibuprofen, and amazing good humor. She's a real hero, just like Elizabeth. Thanks.

[NikoBustos]

thank you very much for this, im a physiotherapy student and ive never seen a case of RSD before, so this has been very helpfull to me, with your permission i would like to show this footage to my classmates so your message of awareness will get to as many people as you had wished. (plus i live in chile, south america)

[gwald79]

That would be really great if you could show it to your classmates. The more awareness, the better; and it would be great to be able to help others with this condition. Please let us know what their response is, and if they or you have any questions. Thanks.

[deborahannnah]

I was diagnosed in04 &also lost my life (5-10yrLife expectancy)cant at all,need a walker or i crawl. But today i found this xternal to avoid the spinal stimulator installed in my brain stem to stop the autonomic responses such as the seizures low pulse/sugar/bp. Here is a link to that device, its external so im trying this one first. Ok luv here ya go. Deb Just google ReBuilder RSD

[beefree1]

Thank you for doing this. My life practically mirrors this. Feels good not to feel so alone with this nightmare. Thx for sharing pain med info. my Dr.'s have no idea what is going on! I have to do all the research. This is giving me a big step up thx ! Can you do another video on the med's, Elizabeth is taking, and what works and not works. Information of side effects of meds would be terrific. Also if Elizabeth could talk about what works for her and doesn't work for her in her CRPS world.