Paula Abdul reveals battle with reflex sympathetic dystrophy (RSD)
Friday April 29, 2005
In the May 2, 2005, issue of People magazine, singer, choreographer, and American Idol judge Paula Abdul discusses living with reflex sympathetic dystrophy (RSD), also known as complex regional pain syndrome (CRPS). Abdul says the chronic pain of the syndrome began with a cheerleading accident at age 17, but it was not until November 2004 that RSD was identified. She states that after 12 surgeries and heavy medications that she says made her chronically nauseous, sleep-deprived and confused, treatment with the medication Enbrel (etanercept) has given her relief.
Comments
Wow, no wonder she has been accused of being “drugged”. I also have RSD, and find that when my arm or leg hurts that I move about like someone on meth. Constantly rubbing my leg or my arm and being a little jittery. The pain uncomfortable to say the very least. Honestly, it’s a wonder she can even show up for many of her appearances - and smile! My hat is off to her for hanging in there and working!
I have chronic regional pain syndrom but am a cheerleader should i quit because my mum and Family want me too?
I wish that Paula would do a Special on her battle with RSD ( Maybe then people would stop accusing her of being drunk) RSD is a terribly painful disease!! Often times the pain is so severe that you just want to Die!! Those of us who suffer with it KNOW only to well how excruciating it can be and how much it can interfere with your daily life.
I am so impressed that Paula has overcome her RSD
Myself as well as all of the other RSD sufferers would certainly benefit from having her speak out about it! It helps us to know that she is living a “normal Life ” in spite of the pain she had to endure We sometimes lose all hope…… Paula is a sourse of HOPE!!
In regard to the “cheerleader” IF you can do it ………..Don’t quit!!
RSD (Reflex Sympathetic Dystrophy) which is also known as the new name of Complex Regional Pain Syndrome (CRPS), is and can be one of the most debilitating things one can attain. RSD/CRPS can take on a life of its own acting differently in each person it affects.
I attained RSD/CRPS approximately 16 months ago as a result of a laterally herniated disc crushing a nerve in my back. This traumatic event has left the area of my left leg between the top of my knee to the top of my foot in a constant state of chaning pain. My knee feels as though it is about to blow up, while at the same time, feels as though it might be broken amongst many other pains. The area below my knee to the top of my foot is so sensative, that I describe it as sunburn times a 1000. I have a gone months without anything touching that area at all. That means it is almost imposible to sleep, because I cannot have any sheets touch my leg.
To date I have gone through a multitude of procedures including having a implant of a spinal cord stimulator. I will be trying out an intrathrecal pump after September 1, 2007 to see if I can gain the relief needed to return some sense of normallcy to my life. One doctor has already told me that some people just aren’t lucky, but I’m not ready to give in yet. That’s what RSD/CRPS tries to do to you.
Having to change my life, not work in over a year now has been a shock. I can only imagine how hard it must be for someone like Paula who is still suffering to be in the spotlight with such an active and unpredictable disease.
I am currently in the process of developing my own website that will soon be available at www.crpsrsd.com.
Please stay tuned for more information on this site.
crpsrsd.com is the correct site from my previous note.
Here you go,
http://partnerpage.google.com/crpsrsd.com
I definitely agree with having Paula Abdul doing some kind of special showing how she gets through the pain and still continues to live a great life!
I’m 17 years old and have had RSD for 11 months. I just twisted my ankle and now I have RSD in my right leg. I just want to know how she got through it and moved on with her life and living the great life that she is!! I ADMIRE her!!
I haved excruciatig Pain from Failed Backsurgery due to scar tissue on my nerves resuting in severe sciatica would Enbrel help my nerve damage?
My husband has full body spread of RSD and believe me it is awful!!!! The further the disease spreads the more we find is unknown about RSD. He has multisystem problems now and no one seems to be able to help or even say what happens next. It is scary to have your heart beating irregular, having to tell yourself to breathe because sometimes it does not automatically happen, having to hold your head up because your neck seems not to want to and many other problems that no one can explain or even try to study to see what is happening.
We had often said if a well known celebrity had this awful, unknown disease maybe then some physicians would research further on the problems. Well, we were hoping Paula might be that person. Paula - please help us and all the other RSD sufferers. My husband was in law enforcement for over 20 years and his RSD came from a work related injury. It has been a nightmare since his injury in 2000 and continues. It is enough to have to deal with the RSD but worse having physicians say “what did you come to me for?” and workers comp saying no, no, no on everything ordered!!
I could go on and on but will stop with - Just try to imagine being in these persons shoes for 5 minutes. You feel as though someone poured gas on you and set you on fire, your limbs have atrophy and start to show physicial damage, you can not eat, sleep or have a few minutes of peace. You might can only imagine but I bet you imagine it to be bad….
HELP!!! I have a very good friend who is suffering with RSD. I need to know how to raise money quickly to help him endure an expensive surgery in another country. Any ideas?
I was diagnosed with RSD in March 2007. My Drs. diagnosed me right away and i was put on 300mgs of Lyrica a day.Right now I’m doing well. Pain but I can live with it. Are any of you on Lyrica?
My daughter is now 20 years old and had suffered for many years with RSD. We spent several years going from doctor to doctor with many misdiagnosis. After suffering from the age of 11 to 17 we were blessed to find a wonderful knowledgeable doctor in Philadelphia Pa. His name is Doctor Robert Schwartzman and thanks to him and Lyticane treatment my daughter is a very functional college sophmore. He is associated with the Hahnemann University Hospital and he is a true genious. If you type in his name all the information is available on line. Good luck and God bless anyone suffering with this disorder.
My 15 year old daughter developed rsd in both feet and both hands in February 2008. After seeing about 9 doctors, I kept researching the web, until I found a family in CA whose daughter was helped by a Corpus Christi dr. We made the journey there, and as of yesterday, my daughter is 100% pain free. This doctor is a miracle worker! His website is www.paindefeat.com. He has helped so many people with rsd. If you or someone you love is suffering with rsd pain, this is definitely worth your time and money.
I’ve was diagnosed with RSD at eight-years-old - my childhood was mostly spent in horrendous pain. It spread upwards, and now ten-years later I still deal with it and am heavily medicated. She should try and gain some publicity for the foundation.
I was just diagnosed two months ago with CRPS its spread from right hand to left then both feet and legs I’m using 50% medical grade DMSO and it is helping with the pain,go to rsdcanada.org/parc/english for wonderful information dutch doctors are working on and promoting awareness to western doctors.
Please! if someone out there can tell me where I can find help here in Canada Ontario for neuropathic pain. I am so desperate right now. I can’t get anybody to help me. There must be some kind of help for me. Everyone (doctors) I have seen all think this pain is all in my head and don’t think it’s all that bad. Believe me it is very painful and can not believe any human can live with this kind of pain. Animals would not suffer like this I’m sure. Any help would be most appreciated.
Thanks
Desperate in Canada
two years ago I fractured & dislocated my ankle in 3 places had a plate & 3 screws inserted.Pain would not leave me Doctors & everyone else did not believe me,finally after a year I was sent to a pain Specialist & diagnosed with RSD I could,nt work so I was sent to a Pyschologist.Now I,m on Disability.When I do too much I can,t walk,medication makes me a zombie
I have been diagnose with RSD last year due to a car accident and fractured and mashed my right foot. I have been living with this for a year now and i find it really hard being a single mom with 2 kids, i have to work everyday and I do miss a lot of work due to treatments that i get every 3 weeks and sometimes not sleeping for 4 days in a row due to pain. My doctor didn’t explain a lot to me about this disease, i have lerned a lot from reading on the web. Its really appreciated that people do discuss this disease because it really helps me understand what i’m going threw.
I have had RSD since 1992 after being beaten by my spouse. I went through doctors in Indiana and Florida. I too went through the ritual of every doctor thinking I was either putting on or thinking I was crazy. I don’t wish this on anyone. Paula could be such a boost in regards to public awareness. Mine started from a broken nose and it preceded down my right side and is in both sides of my body. I went to Mayo Clinic in Jacksonville, Florida in 1995 and finally in 1997 they pinpointed the problem. They diagnosed mine by profuse sweating in the right side. I too was so frustrated with everyone thinking this was just a gimick. Believe me it is very real and I struggle each day with this. This burning stinging pain and difficulty with being mobile at times is totally frustrating. I have also developed very low B-12 and was admitted to the hospital because I lost my gait. I am tired all the time and have to take B-12 shots. I thought I was the only one that had to tell myself to do things. I was shocked to read that this is another similarity from this disease. I hope the people that accuse Paula of being drunk and wacked out would spend one day in her body. They would be hollering for some pain medication within the first 10 minutes. I take pain medication all day long and I try to work. My eldest son like many other people doesn’t seem to reconize that this is real. People look at us and see a person that looks totally normal but never see past the living hell we experience each day. I pray that Paula will bring awareness to the world that this disease is real and I will keep all of you who answered this blog in my thoughts and prayers. Believe me we are not few in numbers. Keep the faith and don’t quit moving or this disease will win.
I had just turned twelve when I was diagnosed with RSD, after a simple sprained ankle turned into a mess. I had never heard of it before and the last thing I wanted to hear from yet another doctor was I may never be able to walk again, never mind ever dance again. My heart sunk as those terrifying words came out. After about a year of the ongoing symptoms, Paula Abdul’s headlining article came out. My pain management doctor read it after many supportive friends of my mom gave her a copy of the article. Her treatment led to a brilliant conclusion for my doctor. She came up with the idea of using remicaid to stop the nerve portion symptoms. Then I received a few sessions with a physiologists to make sure the symptoms were “not in my head” Fortunately he truly believed a thirteen year old. I was not making any of the pain up. I did not enjoy going into the hospital after several treatments did not work. The epideral blocks did not last long and about a month later i would once again be in so much pain that I could not walk. Medications were increasing in dosages and my weight fluctuated constantly. Some made me sleepy and others made me forget facts easily. They led me to feel very uncomfortable in school. At times I was taking 30 pills three times a day for the RSD and other complications that later resulted in another disease. Acupuncture worked for a little while, but after a simple infection from one of the needles the treatment never worked again. One treatment i suggest for anyone going through this is reiki because it relaxes you and can bring you to a place and forget about the pain for a short period of time. Finally after a year and a half i was able to get surgery to correct an abnormal bone development problem. When I was growing my bones in my foot never properly separated and that was triggering some of the pain in my ankle and foot. Since my surgery three years ago the pain has drastically reduced. Only occasionally the pain is very severe. Under most conditions it is very mild and i an withstand it.
For anyone suffering with RSD or other chronic pain, it is not a life sentence if you can bear through it. It may seem like the end of the world at first, but once it is managed, it truly will get better. Don’t give up on dreams and passions because they are what bring you through the experience. Everything happens for a reason and the pain you bear will make you a stronger person. It may sound like a cliche, but it is a reality. I know dancing was the only thing I had to cling to make me better. I had to sacrifice a competition and a recital as well as many rehearsals in order to get better, but it was worth it, to defy the odds the doctors set forth and go back to what I loved. Not only did I go back, but by the time a whole four years after my diagnosis, I was truly back stronger than ever on my feet. This disease may have postponed some of my achievements, but it did not deter them. I ended up winning the junior modern world cup and I keep reaching to surpass that accomplishment. My struggles have led me to appreciate everything i life and I would not be the person I am today without having taken this life experience. So if you’re experiencing anything that is postponing your dreams, (not stopping) take time to realize the good in such a difficult situation. DOn’t quit and give up on everything because without something to do , you’ll lose a reason to get better. The people around you can be support, even if it means listening to their advice and taking things easy for a little while. Being on a team is important, but making sure your health is back on track is more important. If you have to sit out, but being present is key and will lead you to strive to get much better.
Ive found a lotion made in Isreal it called Day Spa it at TGMax Department Store. One day was in so much pain thought Ill try this put the pain in reverse to the point it comes form its low level like at a distance you could use it on the area of pain yet direction states use all over after shower for best results. Like all of you have RSD was injured prolong medical treatment then to rapid medical treatment caused me RSD. Yet truly this lotion works.
I am 15 Years old I was 6 or 7 when I cracked my growth bone in my arm a year later on the same day I got these stabbing pains in my feet and went to the hospital they admitted me straight in when they checked my blood pressure it was higher than an adults high blood pressure I was put on 19 meds a day and 15 days later and many tests later in the hospital I was diagnosed with rsds I was weened off all my meds except for kepra and neruotin I now go to a nerve docter and he says I have only 50% rsds and the meds I take for the pain make me fall asleep and Its harder for me in the cold weather and to go to school like that so I get a teacher to come out and give me my work and help also I get over heated easly and that cause me to have pains also I don’t know what to do but I can’t live like this all I do is work sleep and hurt like crazy all over and not only that but all that medicine gave me acid reflux and now I have a crooked spine and I need some kind of treatment to get rid of the pain also I have tried a biofeed back doctor helped a bit but not much and I know I do not have fabry plus I exercise and have a well balanced diet.
I have had rsd, beginning in 1994 from a work place accident. I fought workers comp for years. Their motto is the 3 “D’s”, DELAY, DENY, DISTRACT. You have to get a doctor to start sending in weekly or bi-weekly reports to them confirming your husbands RSD. Don’t give in to the workers comp employee robots. They are not human as far as I’m concerned. They also believe everyone is a liar until you force it down their throats that this disease is real. God I wish every one of them could get rsd. I’m sorry I was never a vengful person, but this is what they made me.
To Stella;
I take 175mg’s of Lyrica twice a day. I was doing Morphene and got off of it. I find the Lyrica no worse or better except that it isn’t adicttive. I have no side effects, Ive just gained some weight from lack of excersice. I still have pain. My doctor said we could increase the dosage if I want. I find that if I don’t do much on my feet, then I’m ok, but if I’m out and can’t sit and take my shoes and socks off, then I’m in trouble, with a lot of pain. To me Lyrica has been good.
I was diagnosed with RSD in 1991. I had went to 6 different local doctors to find out why I was in so much pain in my feet. Finally my company insisted I go to Cleveland Clinic. They knew what was wrong with me as soon as I walked into the office. they told me that 95% of people never get any better from this condition and if they do get better you will never fully recover from RSD. Well I was one of the lucky 5%. I did get better but have never fully recovered. I am about 95% better and I never expect to fully recover. For anyone who thinks this is “all in your head” needs their head examined. Maybe you have heard that kidney stones is worse than having a baby. Well since I am a male I don’t have a clue about the amount of pain having a baby. But I can tell you the pain from the kidney stone attack I had paled in comparison to the pain from RSD. I remember if I just touched the skin on my feet lightly it felt like someone stuck a knife in my foot. Truly unbelievable pain. I had to crawl on my knees to get around the house. I remember in 92-93 time range of mowing my lawn on my knees. That must have been a sight.
Surprising enough the only thing that would slightly help the pain was 1800 to 2400 MG of Ibuprofen a day. No other drug would help. If you read this please take heed and if sometime in the future you find someone that is in a great deal of pain from an accident have them find a doctor that knows about RSD. It took a year to diagnose my RSD. I was told if a diagnoses is made within 6 months of the first symphons it can be treated successfully. That is what I was told at Cleveland Clinic. I have been to quite a few doctors over the last 18 years who have never heard of RSD. It is a rare condition. Doctors don’t know everything.
I’m glad to hear Paula Abdul found a drug that worked for her. If she had this in her feet I can’t believe she can walk in the high heels you always see her in. I’ve hear she has worked in unreal pain during her career. Hats off to her. I wish she would do some public service announcements for RSD. God help anyone who has the condition.
another great resourse is….
http://www.rsdhope.org/
I totally agree w Andrew as he feels. It has been months since I have been able to have anything touch my skin, if a feather slide across it I would probably scream.
I have had severe rsd for 3 years as a result of 2 failed back surgeries, totally compressed sciatic nerve. Am 100% disabled. The rsd itself is from my knees down, skin is all black/red, also have peripheral neuropathy in feet. They have swollen so badly at times the skin splits open, they leak and ooze, don’t heal and then turn into open ulcers which then require weekly wound care. I also have it on one arm and inside my nose, talk about a horrible place! Did anyone know it can actually hit your organs? It is classified a rare disease because anthing under 7,000 in the world is, there r appx. 5,000+ cases known. There r many Dr.’s that believe it is not a disease, that it is a mental condition, I love those, we have had some interesting arguments. Paula should definately speak out about this, and possibly be the poster person for it, I know we can certainly use someone to get it out in the open more, to educate people more. Andrew said he is starting a site, well if anyone is interested I have a site w another woman. There r only 6 of us so far, as it is hard to reach people, but a place to be able to go and vent, share your day, ask for help, is really needed. Id anyone is interested it is
http://rsdwordstolisten,wordstoshare.ning.com/
it comes up with or without the www., so please, drop by and check it out, tho we r small, everyone there is at a serious level, one man is 62 and his entire body is covered, he has had it over 15 years.U get your own page, there is a blog, discussion,QandA. I searched for months and the 2 I found I did not like at all, I do not want people who love to spam, that is not wanted, and these other sites had that.
One thing I di not understand is the embrell thing w Paula, I was on that for Rh. Arth., got very ill from it so I cannot take, but was told that has 0 effect for rsd, I guess it depends on the person, God bless her if it helps, because they have found nothing yet for me, what I have in my intrathecal pump helps a little, but I am allergic to just about everyrthing in the world as far as meds go, so it is very difficult to find something that helps.
Andrew, will check out your site, and again everyone, please come and visit our small group. The last comment made by Alan I have to dissagree w , but again I guess it depends on the person. I had a sudden, violent hit w it, I was diagnosed at 2 weeks and at that time I was told already it was one of the worst cases they had ever seen. If anyone got hit suddenly like that, did u lose your teeth? 85% of all people that get a quick violent attack lose their teeth within 3 months, and that is exactly what happened, I would be eating a bagle and there would be 1/2 my tooth in the bagel, not very pleasant or attractive. Also very fast hair growth, I am 59 and have not shaved my legs more than once a mth. for years, now it is so long it is hidious, but since I never heal there is no way of getting rid of it. So no one will ever see my legs again, I don’t even like my husband to see them!!!
Wishing u all as pain free a night as u can possibly have.
Anna Daley
Thank for sharing your comments - this is serious matters - my brother was wrongfully diagnosed until Doctors did not know what else to do and around 2004 he was finally diagnose with RSD - we found out that therapy was enemy #1 to RSD patients. He ends up in a wheelchair. Thank to pain Management, he is walking again and improving day by day. Well, now, after many Doctors appointment and many tests, my daughter was also diagnosed with RSD. Thank to the advances (special thank to people like my brother who have to endure the past treatment to the unknown illness - so we could now have a better treatment and a better understanding of the disease) she is being treated with pain killer and a follow up of tests and not necessary (at least for now) any physical therapy. But here is what I like to share and hopefully get some information. Both my brother and my daughter were Epileptic and her and my brother used the same medication such as “Tegretol”… is there a connection? Please swan me with your responses - you can even email me on the subject at “vcarabal@yahoo.com” - but importantly that we continue sharing any findings with the rest of us all who may be interested in this research. Hope to hear from many soon…
Valentín
To Valentin;
I to have epilepsy and had it before my rsd ever showed up. I can’t tell you if it was the medication or my epilepsy, but I don’t think it was what brought on my rsd. I broke a bone in my foot and it was swollen so bad, that the doctors couldn’t see the break in the x-rays so it didn’t heal properly. That is what led me to getting rsd. They say some people work their way out of this illness in years. I hope your daughter and brother will be able to do this. I’ve had it since 1994 and it isn’t getting any better but I still have to wear sandals in the winter because I can’t have socks or shoes touching my feet.
Gerzy - thank for responding - it may not be the main reason for your RSD, but it could be part of it - that s what I am trying to paste together here - and if there a connection, to have someone look into to address the issue accordingly and to possibly help in the research for who knows, better treatment… but really thank and please - all out there, let me hear from you..
Valentin
I was diagnosed with RSD only 6 days ago. I had rotator cuff surgery on March 17th of this year and have been trying to recover from that horrendous pain when I started having worse pain in the rest of my arm. Fortunately my surgeon knew exactly what it was (well it took two weeks),and sent me to a pain management doctor. So far I’ve been given more pills than I know what to do with and reading the side effects of Lyrica, Cymbalta and other meds are really frightening. My dr. ordered a topical cream from Richies pharmacy near Houston (one of only 5 specialy compound pharmacist in the natioin) and they have mixed together Lidocaine,flexeril, piroxicam,and gabapentin,that treats the areas that are painful. I use it three times a day and it really helps dull the pain. You can find out exactly what is in the medication by calling their pharmacy. The website is www.richiespharmacy.com My pain management dr also gave me Cymbalta, Norco,and Amrix. He has also told me to start the desentization process which means I basically “try” to touch the area of my arm that feels like I’ve been burned. I am praying for pain relief for myself and for all of you that I just read messages you’ve written. I know that God is holding me through this painful situation and He is the only reason that I have hope and feel I can make it through this, no matter how long it takes.
Also, someone mentioned taking Epilepsy meds. I don’t have epilepsy, but my mother does and am wondering if this causes a predisposition to this illness? Who knows… I also want to say that so far…I’m not taking the Lyrica or the Cymbalta. The sides effects listed were enough to make me want to use that as a last resort. I too wish Paula Abdul would be more upfront about her condition. I know that she could drum up interest in the medical research arena if she were to become the “poster child” for this disease. Oh..last thing.. I found the website of the national association for rsd sufferers and it has a lot of information for newbies like me and has links to research that is being done. www.rsds.org
I can’t wait to read about others experiences with this debilitating illness. I would’nt wish this on anyone, but is does help to know we’re not alone. I know that people like you who are willing to talk about their experiences will help put together alot of helpful information that will lead to a cure some day. Please don’t give up.
God bless all of you!
My mother was diagnosed with RSD back in 2006. She has always has worked with her hands. The thing that is unique about her situation is that she had no injury. She had a shingles outbreak and an incredible amount of stress. Perhaps this is what caused it. It has moved from just a small part of her arm to the whole arm. She has been afraid that it would spread to other limbs. Insurance would not approve Lyrica because she doesn’t have epilepsy. Spinal blocks did not work. She is on heavy doses of other pain medication. We were in the process of trying to get a test done for a spinal cord stimulator when the insurance company said that they would not approve it. This crushed out families hopes for my mother to return to a somewhat normal life. It has gotten so bad where it is very difficult to travel in a car due to the rocks and bumps that you feel during a car ride.
Thankfully, the insurance company HAD to approve her test because it said that they covered the device in the policy. My Dad fought back and forth. She was able to have the test, and it worked!!! She said she had a 90 to 100% pain reduction. I understand that this doesn’t work forever one, but it is a miracle that it did work for her. I thank God every day that the test worked. Now we are waiting for her device to be installed.
Don’t give up hope. I pray that everyone that has this disease finds something that can make life more comfortable.
The only thing is that I do wish Paula Abdul would use her “star power” to speak up about this disease and make this well known so funding and research could be done for the sufferers of this horrible disease.
There are so many people who don’t have the strength to try and fight the insurance company, or that have no insurance at all.
I was in a automobile accident and underwent 4 surgerys on my leg and knee. I was diagnosed with RSD in 1998. I was in massive pain and would have to go to the hospital and be admitted, so they could give me a blocker to numb me from the waist down. In 2000 I was handed a prescription for a wheelchair and was told I would be in it the rest of my life.
2 weeks later I was asked to go to a Women’s Conference with my church. I did not want to go because of the pain, but my friend would not let me get out of it. I went to the meeting and that night, my faith was built up. I had been prayed for several times, but for once I really believed God would heal me. We went back to the hotel and my Pastor’s wife said come to my room were going to pray for another lady, so we went. I was sitting on the couch, while they prayed for the lady and I was praying, afte they were done. I was thinking I wish they would pray for me again, but I did not want to ask, but my faith was built up and God will work where there is faith. Well my Pastor’s wife said let’s pray for Karen and when they did the power of God hit me and I was shaking and heat ran through me and I kept saying God I am not leaving until you heal me. His anointing just poured through me and every bit of pain was gone. I am a walking miracle and I am so greatful for what God did in me and he is not respector of people and he will do the same for you. My heart goes out to people with RSD for 2 years I went through pain like no other. I even tried to commit suicide, it was so bad. I just want you to know there is hope and God can and will heal you.