Alyssa’s RSD Story

Today is a low pain day and we are thankful for that. Physical Therapy is helping more and more as are the exercises and homeschooling. But it’s taken four years of doctors, specialists, emergency room visits, ambulances, narcotics and physical therapists to even get a diagnosis for why days are no longer days. They are pain days. ”Alyssa, how’s your day going?” “Only a 7 today, mom. It’s a low pain day.” Seven is a low pain day for my 17 year old daughter. Seven. For four years my beautiful teenage daughter has slowly had to give up high school dances, vocal training, softball (the girl can catch any ball to left!) babysitting, or working any other part-time teenage job. She is worried about driving with pain, she is worried about going away to college and forget about going to new doctors. She doesn’t have too much trust in medical providers period. This is her story and how she got to where she is. Please tweet, retweet, leave a copy of the pdf with your doctors, anything to raise awareness for this under diagnosed and under treated pain condition.

Pain in children is a tough thing to judge. You’re baking cookies on a Saturday afternoon and  a kid comes running in crying and screaming “MOOOOM I’M DIEING! I’M BLEEDING HELP ME!” you drop everything and begin to look the child over yet can only find this tiny red mark that’s barely a scratch. Nothing to even bandage! You spray some antiseptic spray on it and give a little kiss and they are suddenly healed by mom’s loving hands! You’re a hero, cookies are almost done, crisis averted!  So it’s hard to tell sometimes when that pain is real and how bad it really is.

My daughter, Alyssa, is from my first marriage. When she was about eight or nine, she was in a car accident with her aunt while she was visiting her father. It was nothing too serious, everything checked out fine after the accident and we didn’t worry any further about it. After pouring over and over medical notes years later, we think now that because females in puberty produce an unbalanced surge of hormones in their joints, this caused her some problems with her temperomandibular joint (TMJ). She had maybe damaged her disc or bone structure in that joint that went untreated until it was too late. The influx of hormones tends to make girls joints looser which promotes injuries. You’ll see joint injuries are greater among young female athletes than their male counterparts. She initially just had some tightness and it made a funny popping sound but we didn’t think anything about it. The old “antiseptic and a kiss” attitude.

This went on over the next several months and we continued to dismiss it as growing pains or stress. When she complained that her jaw or head hurt, some ibuprofen would do the trick. So when Alyssa had the opportunity to be a cheerleader with our local youth football club, we were all for it. Because of her height, the coach thought it best she serve as a stunt base. Unfortunately, being the tallest girl means you are the one who always gets it in the face when the flyer comes down. This is what aggravated what would later be diagnosed as severe chronic TMJ. Though the benefit was limited, it was so severe that our medical insurance covered it in lieu of the dental plan. After about a year, the pain in her jaw gradually got worse. Several times over that year, we went to our primary care clinic to find out what was wrong. It was always the same thing. Ibuprofen, ice and rest. No gum, hard candy, chewy or crunchy things until the joint settles down. She then injured a muscle on the inside of her leg that connects to her knee cap. We are talking about a young, athletic girl who cheered about 12 hours a week, played softball the following season for 6 or so hours a week and was always outside exploring, walking, biking, etc. This muscle in her knee had atrophied and was no longer holding her knee together properly. We aren’t real sure how a muscle could atrophy like that in such an active person. After six weeks of physical therapy three times a week, her knee was doing much better and her PT discharged her from care. Again, antiseptic and a kiss – we’re good!

Her jaw pain increased to neck pain, her neck pain increased to head pain – different from a headache. At this point we are visiting the primary care a few times per month for migraines, neck pain, head pain, facial and jaw pain. The providers all said that it stemmed from the TMJ which is getting worse. The oral surgeon wouldn’t do surgery because she is too young and its often unsuccessful in young adults. He gave her Flexeril, which helped her rest but only worked a day on the pain. He switched her to Skelaxin and she reacted the same way. He ordered her an MRI that showed wearing on the joint and that the disc was actually slipping out-of-place. The popping comes from the disc being forced by the bone back into its place. He prescribed a course of  800mg of ibuprofen three times a day for 3 months and fitted her for an occlusal mouth guard that she used for 3 months. The ibuprofen didn’t help and the mouth guard only increased her permanent pain. There was nothing more he could do for us. This was a crushing blow to my daughter’s hope & I was paralyzed with an emptiness of what to do next. The primary care providers weren’t helping her, the oral surgeon couldn’t help her, the medicines weren’t helping anymore and they were dangerous to be on for any extended length of time. Over the past 4 years, my daughter has been on Flexeril, Skelaxin, Vicodin, Percocet, Dilaudid, Valium, Ibuprofen, Fioricet, Prednisone and the list goes on.

She started her first course of physical therapy for the TMJ because our PCM (primary care manager) couldn’t find anything else wrong with her. Her PT worked  on balance, core strength, range of movement & posture correction over the course of three months with little improvement. Her PT notes indicated  that she made progress, but neither Alyssa nor I could see it. Every session ended with Alyssa in tears and in twice as much pain.

In September of 2008, Alyssa was spending the night at her friend, Olivia’s, house. They made an evening of baking, listening to music and just being girls. They decided to go to sleep and slept about an hour when Alyssa awoke with an earth shattering pain in her jaw. Her pain was the worst it had ever been and she was scared. She was crying and her jaw was locking open and closed quicker and quicker as the stabbing, shooting pains stormed through her face, head and neck and continued to increase out of control. Olivia’s dad, Dwayne, gave her ibuprofen to see if he could help ease her pain but her facial muscles took over and her jaw was in a full dystonic storm of contracting wide open and slamming closed over and over rapidly. Dwayne had no choice but to call me at 1am to let me know that I needed to come get her. I flew out of bed and was there in about ten minutes. When I arrived, she looked like she was in a full seizure. Her whole body was flush red, she was sweating , crying and seizing uncontrollably. Her…..Whole…Body. I didn’t panic, cleared the area, got her out into the opening and talked to her. We called 911 while she continued to seize for a minute or two and then go limp for a minute or too and then began seizing again. This went on for almost an hour before the ambulance was ready to take her to the hospital. There they gave her Benadryl and Valium, did a CT scan and brain MRI and watched her for the next four hours. She was calmer and cooler after the medications but she would still jolt awake from time to time with small limb or torso tremors.

Alyssa had been pretty healthy her whole childhood up until the TMJ started. I had never seen anything like this and when this happened to her, I was paralyzed with fear and utter shock. I couldn’t stop the thoughts of guilt and depression in my own head. They played over and over in my mind keeping me up at night “What is happening to my daughter? What did I do wrong? Why can’t they stop her pain? Where are the people who can help her? Why couldn’t it be me that suffered and not her? She is too young to have such a limited life! God please help her! God please help me!” So many of us are unaffected by any kind of condition or disorder that it’s a catastrophic event when something appears with our loved ones or even ourselves. It’s especially catastrophic when there is nothing I, as a mother, can do to help my suffering child. My heart would break over and over and I think I had to go through a bit of mourning for our pain-free Alyssa and then go through an acceptance period of “What’s can I do next?”

Our experiences of disappointment and frustration over this unexplainable pain with doctors became common place. All of the medical providers we encountered would say the same thing. They all say things like: “It’s stress. Your daughter puts a lot of pressure on herself. It’s all in her mind, try self-hypnosis. I can’t find anything wrong with you. You don’t look like you’re sick. Your vitals don’t show that you’re in pain or sick. I can’t just give you medication without knowing what’s wrong with you and all your tests are normal. I think you must have experienced a major trauma in your life, have you ever been raped? Well what do YOU think is wrong with you? What do YOU want me to do for you? If nothing has worked in the past there’s nothing I can do” We heard these things over and over again. Some comments were delivered in sarcastic tones. Others were delivered with a brushing off. It’s ridiculous that it took F O U R   Y E A R S of watching my daughter suffer this way without NOT ONE medical doctor, nurse practitioner, physical therapist, neurologist or pain management specialist being able to diagnose her.

In September of 2009, Alyssa came down with mononucleosis. She wasn’t very ill and was only down for about 3 days. Just when we didn’t think that her pain could intensify, the mono caused a permanent increase in her pain by January, 2010.  We still were without a diagnosis at that point so these two events weren’t linked until later.

In April of 2010, our family moved from Groton, CT to Menifee, CA. My husband, Tim, had just retired from the Navy and we were finally going to be able to put down roots. It took us a while to complete the move and during this time, we stayed at a hotel while we were waiting to close the purchase of our new home. There was a pool and the kids spent several hours laying in the sun and enjoying the water. The hot tub was especially helpful for Alyssa’s pain. One day I think she was pain-free for maybe three hours! Every time her pain would spike, she would go sit in the hot tub for about ten or twenty minutes and feel some relief. One afternoon, the kids were doing crazy jumps off the side of the pool. It was Alyssa’s turn and she leapt up into the air, for once, not considering her pain or the chance of further injury. She turned a bit in the air and ended up entering the water on her left side “smashing” the left side of her face, her left shoulder and left arm. And again, just when we thought her pain couldn’t get worse, it increased its intensity times two. This was the night they gave her two doses of Vicodin and a shot of Dilaudid in the emergency room. If you don’t already know, pain medication shots are delivered directly into the muscle. That’s why they usually give it to you in your rear-end, because it hurts less! The ER was pretty busy that night and it was a small ER. The treatment areas were each separated by a curtain and arranged in a square around the nurses station. They didn’t have a bed for Alyssa so they gave her a chair to sit in and I stood. She had absolutely no privacy. Because of this, she asked to get the shot in her arm.  We were completely unaware that this was a painful shot at the time. The male nurse gave her no warning, didn’t tell her what to expect, just plunked in deep into her left arm (the most painful one). She released a primal scream and cry that no mother should ever have to hear. I thought to myself,  ”You asshole! You could have warned her and been more gentle with her!” I cried along with her and I was sick to my stomach having to watch her endure this. I was now past the mourning stage of pain-free Alyssa. Now I was mad! Damn these people for not caring for this human being! The medicine went right into effect and she glared hard at the male nurse who gave her the shot. This sweet, lovely young teenage girl gave him the death look! She wouldn’t break her glare and then she managed to slur out  ”Alysssssaaaa doesssssn’t likkkke youuuu anymorrrrre. You’re meannnnn!”  What ever happened to treating patients with dignity? She continued crying uncontrollably all the time sitting in her chair in the middle of the ER because they didn’t have a bed for her.No one’s curtains were closed and every patient in the ER witnessed the torture she just suffered through. Everyone was staring.   I could see that even though she was still going to be in pain, she was at least at a lower level and could perhaps rest for the first time in two months. I held her and we cried together as they wrote her release papers. At this point, we were willing to try anything from chiropractors to accupuncturists to herbal remedies with very little relief.

Once settled in our new home, I took Alyssa to her new PCM. I chose a Doctor of Osteopathic Medicine (DO) instead of an MD. The DO will treat the body as a whole with an illness or an injury. An MD treats each symptom, illness or injury as separate things. We loved the new PCM! She was compassionate, she didn’t rush Alyssa, she took time with Alyssa, she was very thorough and ordered a new battery of tests. When she didn’t know what to do next, she took responsibility for that and followed it up with a “I may not know, but someone does and we’re going to find out” attitude. She immediately referred Alyssa to another neurologist which turned out to be like all the rest. He didn’t listen to what Alyssa had to say. He said he did, but his way of reassuring her was a man-clap on the knee and an announcement of  “Don’t worry! You’ll be just fine!” Yes because that is how you treat a pain patient…..you slap their knee. Thanks doc! After a few times of seeing him, he threw his hands up in confusion. He said nothing was neurologically wrong with her. I urged him to do nerve conduction testing as prescribed by her PCM and he refused. Instead, he washed his hands of her and sent her to a rheumatologist. Now….this is a neurological condition, and this was the second neurologist that couldn’t diagnose it.

Off to the rheumatologist we go. This rheumatologist came to meet us in the waiting room and walk us back to the examination room. We chatted during the short walk back and this doctor was so immediately in-tuned with Alyssa, that she had the diagnosis before I had a chance to put my purse down. Immediately we had an answer. After four long years of tests, doctors, x-rays, scans, blood work, ill-informed providers, we FINALLY had an answer! Thank you Jesus! We talked a little bit more in-depth and the doctor examined Alyssa very carefully. She informed Alyssa exactly where she was going to touch her before she even raised her hand. Not only was she respecting my daughter and showing earnest compassion, she asked Alyssa for permission before doing anything. This is the way MY DAUGHTER should have been treated from the very beginning! As the moment of the diagnosis I was immediately elated and eagerly watied for her to give us the magical cure-all and the treatment. Then the doctor explained RSD and what it means for my daughter. The elation quickly subsided as I became more and more aware that this will be a long road for my daughter and I to walk. At that point, I was just grateful for a diagnosis. Alyssa had her first session with her new PT that afternoon.

Since then, Alyssa hasn’t been able to attend traditional school regularly so she is now homeschooled. Her new PT took a good two months before we started seeing significant relief. She is now at a manageable pain level that hovers from a 2 to a 7 on a daily basis. But now she has tools she can use to relieve this pain naturally. Alyssa refuses to take anymore of the narcotics and is managing her pain with exercises and electrical stimulation. It will take many more sessions of PT to get her into remission, but it’s really starting to look hopeful for her. She still has to manage her fears and anxiety that this pain has spawned.

If RSD/CRPS is diagnosed early enough, it can be treated right away and has a higher chance of remission. Early diagnosis and intervention is key! Please share my website and the websites I’ve listed with everyone you know. We need to raise awareness among our medical communities in order for early diagnosis to become a reality instead of a fluke. Imagine if someone’s cancer went undetected for four years? What condition would they be in physically and mentally after suffering in limbo for years?

I love you, Alyssa. I will never stop searching for ways you can get closer to being the pain-free Alyssa once again.

11 thoughts on “Alyssa’s RSD Story

  1. Someone asked “What are the things that cause her pain?”

    1. The gentlest of breezes no matter the temperature outside. Alyssa usually carries a scarf in case she feels a draft.

    2. The heat off someone’s hand.

    3. Cold water – including beach and pool water.

    4. A whisper in the ear.

    5. A loud voice or a loud noise.

    6. Vibration

    7. Altitude changes – even just a few hundred feet higher than what she’s used to can hurt.

    8. Hugs and kisses

    9. Crying

    10. Sitting for too long or laying for too long.

    11. Carrying a bag or purse.

    12. Singing

    13. Opening her mouth more than an inch to eat.

    14. Eating anything too chewy, crunchy, hard or bulky. So cheeseburgers have to be smashed and cheeseburgers are Alyssa’s favorite thing to eat!

    15. Clothing that’s too heavy (like a coat) or too wispy. Can’t have things that don’t move enough nor things that move too much.

    16. She’s unable to use her left arm completely at times.

    The list just gets harsher from there…but hopefully this gives you an idea that the simplest of things cause her intense pain.

  2. Someone else asked “What are some of things that give her relief?”

    1. The first and most important thing Alyssa can do to relieve her pain is to rest, eat well, rest, and rest.

    2. Very low impact excercises. We just bought her a stationary bike that sits looking out a window. She loves it and since her RSD is in her upper body, there’s no aggravation to her pain areas!

    3. Hot soaks in a bathtub with 20 drops of Lavender essential oils, 10 drops of Rosemary essential oil, and 1 or 2 drops of Clary Sage essential oil. Sometimes we use 5 or so drops of Cinnamon essential oil since cinnamon is very good for the nervous system.

    4. Stretching and again…..R E S T!

    5. Laughing

    I continue to search to make this list longer.

  3. 1/20/2011
    Alyssa saw her PT today (Mary) and let me start by saying that this woman is incredible. What she has done with Alyssa’s condition and how she has helped Alyssa have lower pain is just amazing. Now they have the RSD down to a pain level range of 2-6 (sometimes 7) but that’s as high as it’s gone since Alyssa increased her PT to two times a week instead of just once.

    Now that Alyssa’s pain is somewhat under control, now they are going to start work on the TMJ. Mary explained to me today that her jaw is completely out of alignment and that the ligaments on the left side are “very loose” and the ones on the right side are very tight. Mary taught Alyssa how to realign her jaw today to be able to get it to open and close without popping and sending the nerve pain out of control! Things are looking really good for recovery, but I’m scared of getting my hopes up too high!

    I’m ever grateful to Mary the PT. I need to get her a present to thank her for giving my daughter relief and some of her life back.

  4. Hey Alyssa, we just became friends on facebook and I am sorry you have RSD. I have it, too, and it took forever to get a diagnosis! I saw the things the cause you more pain…that list is so true! My RSD is in my upper bosy and the temp really affects it. Even in the summer, I’ll sometimes wear a glove on my hand…no one gets it! I am glad that the PT exercises seem to be working. PT has been unsuccessful with me, but OT has definitely helped! I also find that laughing, unfortunately, can make my RSD worse–sucks b/c I find everything funny! I think it’s because part of where my RSD is, is where my ribcage is…so maybe it has something to do with the change in my inhalation. Hmm. Warm baths are the best ever…I also found that heat (NEVER EVER ICE) helps.
    Stay strong, girl! Here’s to low-pain forever!

  5. I find it hard to go to websites relating to rsd/crps because I know the saddness, the hurt, the anger, the disbelief that a persons life could spiral out of control so fast and without any warning whatsoever! I believe in God, but yet I question why or how a just God could do this to people,, and then I read about a child, a child….. I KNOW what I feel, I am 37 years old, I have 3 children of my own and I could NEVER imagine having to stand helplessly by and watch one of them endure what I have gone through, and continue to go through… I am DISGUSTED at a society that could allow a child to suffer needlessly for 4 long agonizing years simply because they won’t admit that they’re NOT God and don’t have all the answers… I thank you deeply for sharing this story, and for having the love and the courage to fight an unknown demon that the rest the world cannot and hopefully will not ever have to see.. I would battle this demon for the rest of my life willingly if it would just leave the children be….

  6. Cheryl,
    Thank you for your comments! I hope that all victims of this rare condition keep up their bravery while research continues to diagnose and treat this awful disease. I just went through Alyssa’s medical records from Connecticut and from 7/21/2008 through April 28, 2010 she was seen 16 times for TMJ pain. I found several errors in the transcribed medical notes noting pain. Often times where she has reported a 9 and 10 in the patient complaints secion, the doctor documented it as mild pain.These 16 visits were only for her PCM (Primary Care Manager). This doesn’t include her visits to the ER, to the Ear, Nose & Throat, Nuerology, nor the Oral Surgeon. I still have to order those medical records to see if I can see the pattern of pain and not just the pattern of providers continually discounting her condition and passing her around like a deck of cards.
    It wasn’t documented as a possible disease with severe pain until she saw the ENT on 10/08/08. I never actually saw his report until today. Had I seen this and had a copy of it, maybe I could’ve gotten my daughter treatment faster. Even from there, it was misdocumented by her PCM as mild pain and left untreated. Maybe if I would’ve been more aggressive, more controlling, more educated then I could’ve gotten her treatment faster and she would’ve never had to go through this horrific pain. Once it was even documented that the provider didn’t have her medical record present during examination. Another time it was noted that the provider didn’t review her medical history prior to her physical for softball. That was the season she couldn’t finish and made less than 50% of the practices and even a less number of games.
    This is why we need to raise awareness. RSD/CRPS patients don’t have to wait this long for a diagnosis. They don’t deserve to be treated as junkies in the emergency room just because providers can’t see their injury or just because they don’t look sick! Raising awareness equals research for treatment. Treatment means relief for the afflicted. Relief equals a better emotional state, which in turn, offers even more pain relief for patients and their caretakers. People in general need to be aware that a simple hug or touch, no matter how innocent or gentle, hurts.
    Think of a woman in the last stage of labor giving birth while standing in a puddle of water with a live wire in your hand. This is the pain level chronic pain patients experience – on a 24 hour day, seven day a week, 52 weeks out of the year, over years and years of their lives.

    Oh, and to the pain management doctor who asked my daughter if she had ever been raped, I hope the medical board and insurance company replies to my testimony soon and may my daughter’s name forever remain carved in your mind. THAT – is THE BUTT UGLY TRUTH

  7. **UPDATE**
    Since Alyssa is seeing her physical therapist twice a week, her pain is MUCH more manageable. It’s hard for me to grasp that the more pain she is in, the more she needs to excercise. She’s lost some weight over the last few months – not a significant amount – but enough to raise some question.

    Her RSD has spread to her right foot after she bumped it a few weeks ago. Her skin has had some color changes and it’s painful for her. I can hear her pacing through the night trying to ease the pain. Her new Neurologist is FANTASTIC! She gave Alyssa two new prescriptions (NON-NARCOTIC!)to manage her pain and to help her sleep through the night which further interrupts the pain cycle. The new doc is also putting in a new referral to pain management. Turns out the pain management doc is the Neurologists husband! So I have high hopes on his treatment as well.

    Alyssa’s mood is better because the pain is more manageable and since she’s had a few nights of good rest in a row. It will take a few weeks before the pain meds kick in fully, so pray for her.

    Today is a good day though. Her pain is between a 2-5! That’s good news! God is good!

    Love,
    Crystal

  8. Alyssa is starting her own business! She is feeling better but still has permanent pain that never completely goes away. But her quality of life has improved and she is enjoying being able to do more things! Please support her business by going to http://www.isisartandgems.com Her stock is limited so get your orders in!

  9. Alyssa is a legend!! And you are just and angel for not giving up!! I hope she is continuing to do well. My daughter has just been diagnosed recently and is going through a terrible time. She is unable to eat properly and has lost a lot of weight, they’ve just put her onto a supplement to help her maintain weight. We live in NZ and not a lot is known about this condition, many people think she is just a head case and have no idea what she is going through. She has constant pains shooting up her spine and limbs also with numbness and pain in her limbs to add to it and has had a constant headache for 5 weeks. We have had several recent admissions to hospital and many visits to the emergency department. How do I stay sane and keep her going?? Kind regards and best wishes, Robyn.

  10. Dearest Robyn,
    First of all, I’m sorry to hear that your daughter is suffering. Alyssa has also lost quite a bit of weight over the last year. She is maintaining right now, though still in an intense amount of constant pain.

    It’s been very helpful to me to keep very detailed medical records and notes of my own regarding Alyssa’s specific symptoms to include what has helped and what hasn’t helped. I carry a copy of it in my car at all times as i never know when shw will have a bad flare up that requires and emergency room visit. This also helps because Alyssa has a team of different specialists she sees and they don’t always communicate with each other. If I have detailed notes and copies of each visit’s reports, it helps everyone to be on the same page.

    I encourage you to seek any kind of chronic pain support groups in your area. As a mother, it’s incredibly difficult to manage the emotional upheaval these invisible disorders can cause.

    I apologize for taking so long to get back to you 🙂 peace be with you

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