Hello I am new to the forums however have occasionally browsed through it over the past few months. I have a lengthy story but I will be concise yet thorough in order to provide as much information as possible. I have been seeking pain relief for over a year now and have yet to find a promising method.
For those who do not wish to read it all, dont worry I understand how precious time is. I put a concise story at the bottom. If you do however read the entire story I give you my deepest appreciation. I am sorry for grammer and spelling I wrote this being sleep deprived and while doing calc homework.
16 months ago I was a healthy young male of age 17. I was the captain of the Mens Varsity Swim Team and led our team to states. I was in the top shape of my life (always had been healthy and active), 3.95/4.0 GPA, ranked 2 in my class, things were looking well. Two weeks following the end of my swim season I began to notice a slight pain in my back. Nothing too serious, I ignored it and moved on. I would also like to say that during this period I had no injuries or strenuous activity other thank surfing/skim boarding. The pain started to build and grew slowly. I began seeing a physical therapist and did therapy every day for a few months. I then coupled this with chiropractic care for 4 months with physical therapy and multiple doctors. Nothing seemed to help. The Chiropractor noticed minimal sculiosis and with months of therapy and treatment it was almost unnoticeable yet I still had pain.
Confused I tried to think of all explanations and then remembered a diagnosis I had at a young age. When I was little I had chronic headaches and was sick all the time. At age 8 I was diagnosed with an arachnoid cycst in the back right hemisphere of my brain. Doctor said surgery wasn't necessary and it explained my sinus and headaches. He said the headaches should go away just as pain does when you hold a pinch and it did. To this day I rarely get headaches or atleast I dont notice them as much. I trace this to my high pain tolerance as it takes alot to make me go into extreme pain.
I continued treatment up until we moved from Florida to Raleigh NC. Ruling out chiropractic care as months of treatment with pain levels rising, we looked elsewhere. Not knowing doctors we found a pediatrician who pointed us in multiple directions. I went to a back specialist where I was put on Zanaflex and told to work out (which I have done 5-7x a week 1-2mile run/500-750m swim). She ran blood tests and nothing too special. I then went to another specialist who put me on Etodolac for pain. I could have sworn she gave me sugar pills as they tasted sweet and had 0 pain relief. Upon our visit I asked if she did and she was offended and told me to go to a chiropractor. Needless to say I ignored her advice having already told her my history and decided to just ignore it for awhile. If I can live with a cyst I can live with pain.
Needless to say I was wrong. about
a month later the pain went from a 5-7 to a constant 6-8. I began having trouble sleeping and would sleep on average 5-6 hours. I went to a doctor a friend recommended and they ran more blood tests. I told her about
my pain and she told my stretching and therapy would help. I had already been doing daily stretched before every workout, every morning and before I went to bed (as instructed by physical therapist from months earlier). Upon the checkup she noticed things were worse. Pain had risen and I constantly was awaken from pain shock and muscle spasms giving me about
4 hours of sleep a night. I assume she viewed this as depression having moved my senior year of highschool. I have never been one to be depressed yet they somehow saw something and she sent me to a psychiatrist.
I couldn’t get an appt with a psychiatrist for 2 months so for 2 months I did nothing yet again. Things got unbearable and pain was now a constant 8-9. I begged my doctor for another appt because I couldnt live like this and instead of helping me, she called the psychiatrist and got me a appt 4 weeks earlier. I guess she did help but I still had weeks till my appt. In the meantime, I had abnormal joint pain in my jaw which soon elevated to the point I couldnt eat or talk. This was the first time I went without sleep for more than 2 days. I went to a dentist and they assumed it was wisdom teeth from all my pain however upon xrays found something else. I have an unidentified calcified object in my jaw and was sent to a surgen who prescribed me lorotab to cope with my sleep. This did wonders for helping me fall asleep however he only gave me 8. I was instructed to take 2 before bed and 1 every few hours as needed to get me through the weekend until I saw my psychiatrist.
My psychiatrist was very quick an brief and put me on Cymbalta and 5mg of ambien for sleep. My refering doctor mentioned fibromyalgia which I correlated with the cymbalta. Ambien did wonders for a few days with getting me to sleep however I soon had to take multiple ones to fall asleep, then redose every few hours to fall back asleep. Needless to say it wasn’t working. He then switched me to lunesta which worked for a few days and the same thing. During these few months I would get on average 1-2 hours of sleep and lasted 7-8 weeks. This was absolute hell and pain only rose. Over this course he continued to raise my cymbalta dosage from 30 to 60 to 90 to 120. I never felt depressed and told him that and continued to feel no relief. My insurance dropped my coverage of cymbalta due to my high dosage and for the next 6 days I have never been in so much pain in my life. I didn’t sleep for a week, nausea, vomiting, hallucinations, shaking, 11/10 pain scale, anxiety attacks. MISERABLE withdraw. I received prozac to cope with withdraw due to its abnormally long half life as an SSRI. Due to Cymbalta I never want to take an antidepressant ever again. I dont want medication to control my wellbeing. Following this I took my healthy lifestyle a step further to the point it began to scare me. It seemed to be an OCD type symptom with frequently eating healthy, obsessivly cleaning my room, going to be super early, stretching, planned meals and drinks, scheduling activities, I could keep going but it began to take up hours of my day and I had little time for anything else. I still have these symptoms, none of which I had before the SSRI. My psychiatrist finally got me into a rheumatologist after removing the word fibromyalgia from all my notes (6/6 rheumatolgist denied me soley due to fibromyalgia related symptoms). I forgot to mention I was also put on 50mg seroquel the same time I was put on prozac for sleep and it is as of now, the only working medication.
Seroquel the first night knocked me out for 8 hours aka my first full night sleep in months. Next night was the same and I didn’t take it over the weekends as I tend to develop tolerance to medication very quickly from experience. Sleeping was terrible that weekend and would remain in bed 12 hours of which I was asleep maybe 4-5. I took it every night during the school week with less and less sleep each night until now its remained constant (its been 9 days). I take it every night at 9:35 sharp (like I said everything is set right on time). I dont fall asleep till 11ish and wake up everyday anywhere from 4-420am. The strange thing is how exact the time I wake up is, its in that range no joke everytime. My psychiatrist trusts and understands I know how to correctly dose myself and said to increase the dose as needed. At first I didn’t want to because even though I woke up I still felt like a zombie which I didn’t like but eventually did. The result was me being an emotionless zombie till around 12pm the next day and since then I have never done 75mg. My bedtime ritual as of now is 3mg of Melatonin along with 40mg of Valerian Root which is inside a Night Time tea blend. Followed by a glass of grapefruit juice which slows the metabolism of the seroquel thus is in my system longer. This helped for a bit but am still waking up now at random intervals in the night. Its all due to pain as I often spasm and wake up mid spasm or a shot of pain down my back will do the trick. I often have to use ambien to fall back asleep but only do so if I wake up before 3am or else I will be a zombie for school. If I wake up after 3, I am awake for good.
Rheumatologist was of no help and I hope she can give me some answers on my next visit (4 weeks). She has “no idea” what to do. One thing that troubles her is my past injuries. I have broken my wrist and my ankle however I never knew I did. I found out I broke them both during a MRI at the back specialist who asked when I broke it. The bone in my wrist had healed incorrectly and they had to rebreak and fix it. My ankle is still messed up and constantly pops and cracks with EVERY tiny movement of it. I always ignored the cracking as every joint in my body is in pain and cracks with movement. When realigning my wrist, the doctor said not to sedate me to see how I reacted. I felt pain of course but the pain in my joints and back that I have 24/7 was 7-8x worse...probably why I never noticed the bones were broken.
I know I am rambling but its been over a year and a half and I can’t live with this pain anymore. I stopped taking prozac as I feel no depression symptoms at all, never have and doubt I will. It doesn’t help with pain or anything. The only medication that helps is the seroquel with sleep.
I am now 18 year old male. 5’9 145ibs. I am about
to go to UNC Chapel Hill, have a beautiful girlfriend and have made hundreds of friends since I have moved. I am not sad, I have anxiety attacks due to the pain and lack of sleep but thats it.
From the months and hundreds of hours of research I have spent, I can self diagnose myself with 90% accuracy that I have fibromyalgia. My psychiatrist and multiple doctors agree but due to my rheumatologist we are keeping it on the downlow.
I just want to be pain free and sleeping again.
Quick Info: 18 year old male with 15 months of chronic pain (specifically back neck shoulder along spine and lower back however tends to flare out). I eat extremely heathy, workout daily, stretch, and try to do everything right. I have visited chiropracters, back specialist, pyschiatrists, you name it.
Current Medications: as of 2/3/11 -50mg seroquel at night, 3mg ambien, 40mg valerian root. Etodolac or other OTC pain meds for pain as needed (absolutely no relief, I take one pill every 4-5 weeks praying it will somehow work). I still have prozac in my system and took 10mg 3 days ago.
Past Medications: 5-10-15-20mg ambien, 3mg lunesta, 30-60-90-120 cymbata, 10-20 prozac, 5mg tizidine hcl (generic zanaflex), etodolac.
Related (or so I feel) symptoms: Dry Mouth, Constant Dehydration (drink a glass of water every 15-20 mins), Frequent Urination, chronic fatigue, joint pain, restless legs, muscle spasms, shaking, extremities prone to cold, sensitivity to temperature, multiple adhd symptoms such as concentration, terrible short term memory (esp with names, I can only name on average 5/30 people in my class whom I see and hear there names everyday), hands chronicly shake (despite influence of stimulant such as caffeine), "red skin" around lungs and back (had it since pain started, looks identical to sunburn without pain and has never left). Will update once I restore my ipad aka my medical journal.
Other medical diagnoses: arachnoid cyst in back right hemisphere, keratokonis in the right eye, athsma and allergies (since young).
Thank you for reading, I know its long I just want pain relief just like all of you!
Post Edited (zabumafu) : 2/3/2011 6:59:23 PM (GMT-7)