It’s been almost a year since I shared Elizabeth’s video on my Facebook page and asked if anyone else had had similar experiences with Fibromyalgia.
I didn’t know what had happened with her, so I was really thankful when she reached out to me a few weeks back and shared how far she’s come in the last few months. As she said,
“It was a long 6-8 months but in the grand scheme of things, such a short amount of time compared to how long I have been dealing with Fibro.
Below is her story. I hope, as she does, that it may help others avoid going through the same things.
Things have been a bit of a mess since I last emailed you but I am on the mend. So the details of what happened:
I was in Nicaragua doing some volunteer clinics in which we provided free spay/neuter procedures and veterinary services to communities that barely had running water. I became extremely ill suddenly with vomiting, shivering/ shaking, excessive sweating, headache and minor diarrhea (which was odd because I was battling constipation at the time). I was laid up in bed for a day and after much consideration decided to fly home to California and cut my trip short. I landed on a Saturday night and went to the Emergency Room Sunday morning because we were concerned it may have been malaria (signs/symptoms and timing lined up perfectly). I went to ER simply for a blood test but the nurse could not get any blood from me, due to severe dehydration. So I then proceeded to wait for over 4 hours in the waiting room slowly deteriorating. I began to suddenly fall asleep, fading in and out of consciousness and then the jerking started. After both my mom and aunt had several arguments with the triage nurse, I was taken back and given fluids. I immediately started feeling better but the jerking did not subside. After IV diazepam, the jerking continued which was concerning to me. All of the sudden my body started spasming and producing those seizure like movements (as seen in the video). I was given IV ativan and that got the movements to begin to subside. I was admitted into the hospital and from the moment I left the ER, every doctor began searching for a neurological issue. These extremely painful spasms continued every 4-6 hours for literally 25 days. I spent one week in my local hospital, they moved by ambulance to the next biggest city’s hospital where I was for almost 2 weeks and then finally moved 4 hours away to Cedars Sinai in Los Angeles. I spent 4 days in Cedars neurology department, even though by this point every possible neurological issue had been ruled out. These doctors took me off of ALL my medications for 48 hours (the pain was unbearable and even breathing hurt) and after one long 2 hour session of spasming, the major sessions stopped. I was released and sent home with no diagnosis, no plan of action if they came back and only told to make a follow up appointment with my neurologist. Their only potential explanation was stress. Stress. Are you kidding me?
I was released on a Thursday and had no major sessions of spasming until Monday night. I was able to take large amounts of xanax and clozapam in order to get them to subside enough for me to sleep. I did not have another session like this until Thursday night. It was Friday morning that I finally saw the pattern. Both Monday night and Thursday night I was in alot of pain and took 8mg of Zofran, 50mg of Ultram, 5mg of Percocet (over a 2-3 hour period) and my normal night time medications which included 20 mg of Lexapro. It was serotonin toxicity and was 100% sure. As soon as my general practitioner’s office opened that morning I was sitting in his office barely able to walk without being held up and jerking continuously. He agreed with my suspected diagnosis and advised that that I immediately stop taking the Zofran and Ultram and proceed to ween myself off of the Lexapro over the following two weeks. The major sessions of spasming subsided but walking unassisted was still problematic as I was extremely unsteady and I still had minor spasms. Once completely off of the Lexapro I did see an improvement in my over all health. The major headaches stopped, the blurry vision cleared up, the constant diarrhea stopped, and the general feeling of awfulness improved. I decided I needed physical therapy so I looked up the best physical therapist I could find locally and got a referral to him, but again this was my idea and my decision and was never suggested by any of my doctors.
As I sat in the waiting room to see the physical therapist, my anxiety was starting to peak. What was I supposed to tell this guy? I have Fibromyalgia and had a month of spasming (undiagnosed) and now I am here to see because I can barely walk? That seemed so ridiculous. It’s not like a I had an ACL tear or specific injury that need rehab. The physical therapist sat me down, took my blood pressure, heart rate and did a basic physical exam, which was already more than most of the doctors had done. After noting my elevated heart rate, he calmed me down and took a complete and full history. As he started to assess how bad the damage was, I started spasming and violently thrashing on his exam table. He calmy assessed the situation tried a few things and after applying hard pressure to a muscle in back, got the spasming to STOP! I literally started crying. He let me know that he had seen a similar issue before but not as severe, and he was confident that he could help. I left his office with a new found hope and completely in shock that a physical therapist, not the 10 plus doctors I saw, was able to figure out how to help. I immediately began seeing him 3 times a week and he determined that I most likely had an injury at T11 or T12. I went back to my GP and asked for a CT scan and X-Rays of the thoracic spine. It turns out he was correct and I had anterior disc bugles at T11 and T12. These injuries along with my hips and SI joints being severely misaligned for what we determined was over a year, caused my psoas muscle on the left side to begin to contract and spasm once the serotonin levels reached an inappropriate level. I worked with him for over 4 months and slowly began to recover.
During this period, my GP recommended that I try to get myself into see a pain management specialist at Sansum Clinic in Santa Barbara since any referrals would take months to go through. So I got into see an Internist at Sansum Clinic (4 hours away from my home town) so she could give me a referral to a Pain Management specialist which was the closest thing they had to a Fibromyalgia doctor since their Rheumatologist only diagnosed Fibromyalgia. While I was in the front office of the Internist, frustrated that no one seemed to want to help me get my life back, a secretary approached me and confided that she too had Fibro. She insisted that I needed to see her Rheumatologist at UCLA Dr. Mihaela Taylor. So I started down the road of trying to get into see Dr. Taylor and finally was able to get an appointment with her in the beginning of August (this was still in July). In the meantime went to the Sansum Clinic Pain Management specialist and started receiving injections for my back. We did various trigger point injections into the psoas, steroid injections into my facet joints at L5 and into my SI joints, all of the course of the next few months.
I was both anxious and nervous to see Dr. Taylor. Her office in Los Angeles was again 4 hours from my hometown, so I was lucky to have the support of my parents and boyfriend to drive me to these places since I still wasn’t stable enough to drive. Dr. Taylor spent over 2 hours with me during our initial consultation, gathering a thorough history that dated back to when my chronic pain started at 15 years old, and doing a thorough exam. I walked out of her office with lab slips, appointments for various scans and yet another referral. She was eager to help but recognized that my case was a difficult one that required things she wasn’t allowed to do at UCLA so she referred to her colleague Dr. Stuart Silverman, whom she said only worked with rheumatoid arthritis patients and Fibromyalgia patients. After leaving her office my mom began crying and admitted that she had done research 4 years ago and found out that he was the best doctor to see for Fibromyalgia and she had tried to get me into his office but it was almost impossible to get into see him. I set up my appointment with him for 2 weeks later and also booked my plane tickets to fly back to the Caribbean where I attend veterinary school. The school only allowed me to take off one semester so I was having to go back and start up again, even though I wasn’t sure I was really healthy enough to do so.
I saw Dr. Silverman for an initial appointment on a Thursday and my plane left back to the Caribbean the following Monday. I wasn’t sure if the appointment was going to even be beneficial with such a short time period before I had to leave the country again. The appointment concluded with Dr. Silverman encouraging me to take one more semester off, insisting that I wasn’t ready to go back. He promised to give me my life back and make it better than what I was dealing with before things had gotten so bad. I made the very difficult decision to follow his advice and stay home one more semester deferring my return date to January. I began to drive to Beverly Hills, where his office is located, once a week to work with him. He suggested I try to get off of the opioids and stay off of them for one week so that we could try Low Dose Naltrexone. He introduced me to CBD oil for pain control and put me in touch with a retired Veterinarian whom he had worked with to get his Fibro symptoms completely under control and was no living pain free. I had a lot of hope and started the difficult/ painful road of stopping the opioids. It took me almost 3 weeks but I was able to completely stop taking them. I wasn’t taking large doses of opioids but the pain was so severe that I was at least taking a Percocet a day, which wasn’t normal for me. Once I started the LDN, we had to adjust the dose a few times until I began to notice a difference but I finally did start to feel better. I was put into the Cedars Sinai Fibromyalgia Program for a few months where I saw a Neuropsychologist, Physical Therapist and Occupational Therapist once a week. My life started to return to normal, in fact better than normal because I was taking half the amount of medication that I had previously been on.
I was able to return back to school in January and start back into my third year of vet school. Things are going really well!! Yes I still have days where I am incredibly exhausted and yes stress still makes my body ache and yes I still have days where I can’t get out of bed at all, but overall those days are so much fewer in number. I barely have to use CBD oil for break through pain and I have my life back. I have made some lifestyle changes and no longer drink any alcohol and eat very little sugar because I noticed both made my pain worse. I have been gluten free for over 5 years so now my diet is a little more “paleo” based but at the same time I still eat french fries. I try to exercise small amounts a few times each week and stretch everyday, it really does help. I just want people to know that getting back to a normal life IS possible, but you have to be your own advocate and speak up for your health.