Discussions By Condition: Pain

No One Knows What to Do

Posted In: Pain 5 Replies
  • Posted By: whyus?
  • February 18, 2009
  • 09:41 PM

Environmental/Background Info: I am a 16 year old female living in the suburban Chicago area with my two parents and 14-year-old sister. I am around young kids (3 and 7 yrs) and animals (hamsters, guinea pigs, dogs, cats, birds, etc.) a lot. I am a sophomore at the local public high school with aprox. 2,100 students. I am smart and take "highly intensive courses" like AP calculus (senior level) and accelerated chemistry (junior level). I don't have many friends, and it's hard for me to get close to people, but that's just my personality, and I've been like this my entire life.
Symptoms/Complaints: Since I was young--and I mean "Rock-a-Bye Baby" young--my knees have always been hurting me, even though that didn't stop me from being an extremely adventurous child. My mom told me that sometimes I would wake up in the middle of the night screaming and clawing at my knees, and other times I would climb out of my crib to curl up with our dogs (There have been studies showing that dogs can calm people down and even make people feel pain less.) for help. In February of 2004, and I believe it was February 24, I was climbing on some icy snowhills and hurt my knees. I went to a pediatric orthopedist who diagnosed me with Osgood-Schlatter Disease. I couldn't run, or play, or do anything, and I eventually became overweight.The point is, my knees were killing me and they kept telling me the pain was going to go away when I stopped growing.
It's five years later, I stopped growing, and I still have chronic knee pain. What's worse is that it's not just in my knees anymore. In December 2008, the pain started spreading. I now have severe pain in both my knees, left hip, and both elbows and both wrists at times. In the last three months alone, the pain has gotten worse than in the previous four and a half years!!!! That scares me so much. If it's that bad now, and if it's escalating that quickly, will I be able to stand it in 50 years? Will I be able to stand it in two weeks? And I've never had suicidal thoughts before. Ever. That also makes this so scary.

But besides my joints, I also have secondary health concerns that bother me and haven't really been answered. For at least three years my insulin levels have been near diabetic levels, but no one did anything until this past September. I have chronic headaches that might be classified as "migranes." These headaches come in all forms and shapes and sizes and I've been getting them since about half a year before the knee pain (So that means the headaches started in the middle of fourth grade.). The only thing that helps my headaches is extreme cold combined with extreme pressure--Sometimes I've bruised my forehead. Also, my neck and chest cavity/ribcage/mid spine hurt constantly, and I'm on enough muscle relaxants to concern me. I can always crack them on command, but there seems to be a pressure that won't let up no matter what I do. Another thing that concerns me is my primary amenorrhea. I went to Dr. Berhe, one of THE BEST endochrinologists in the country, who said there was nothing he could do. He said that there was definitely something, but for all he knew it was "Carissa Syndrome." Besides those, I have nasty TMJ; well, that's what they're calling it. Recently, like everything else, it has gotten so bad, that I scared both my dentist and orthodontist! My orthodontist says it's probably not TMJ and has nothing to do with the muscles, but is completely joint related and I probably do have a new "Carissa's Disease."
Doctors and Their Diagnoses: (correct as far as known = italicized)
General/Pediatrician: Osgood changed to psychosomatic changed to JRA changed to psychosomatic changed to Lupus changed to JRA changed to psychosomatic changed to Fibromyalgia to psychosomatic to "Carissa's Disease"
Gastroenterologist: stress-induced esophageal, stomach, and duodenum ulcers
Pain Management (x2), both: depression changed to psychosomatic changed to depression
Sleep Doctor: Sleep apnea/hypopnea and something causing SEVERE pain
Rheumatologist:depression and psychosomatic
Orthopedist:Osgood
Acupuncturist:depression/natural causes
Chiropractic:depression/natural causes
Hollist:depression/natural causes
Therapist: depression and psychosomatic
Psychiatrist: depression
Physical Therapist: Osgood
Dentist: "Carissa's Disease" and/or RA (rheumatoid arthritis)
Orthodontist: "Carissa's Disease"
Endochrinologist: PCOS (polycystic ovarian syndrome) and "Carissa's Disease"
Treatment(s): I have been taking ibuprofen tablets for years now, and a lot of it. I generally take 4 or 5 pills (standard 200 mg. ea) for 2,400 to 3,000 mg or even 4,000 mg a day. Also, my general/pediatrician has given me some acetaminophen #3 with codeine for SPARATIC use when I get the really bad pain attacks. She also wants to see if gabapentin (600 mg 3x day) would help. The endochrine gave me metformin (850 mg) which I take twice a day and daily birth control pills. I also take an antidepressant, currently 60mg Cymbalta, and 3 mg Lunesta which were prescribed by the psychiatrist. Instead of the ibuprofen recently, my pediatrician wants me to try Celexa (200 mg 2x day), but I still needed to take the ibuprofen. For about a week, I was happier, felt better, and was probably losing weight, but everything just stopped working... Again... Like it always does.
I also use a LOT of topical analgesics. I use IcyHot, BenGay, homemade remedies, ice, ice massages, heating pads, and everything else under the sun. This is a question in and of itself: I also go through probably three to four ounces of Capzasin brand capsaicin a month. I feel absolutely nothing when I put capsaicin on my knees. I put it all the way up and down my legs and arms and put on sweats ( DO NOT DO THIS!!!). I feel some heat from my elbows when the sleeves are down, but it's not uncomfortable. I smell all the bottles and I lick all the bottles (NEVER DO THIS!:eek:); yeah, it's spicy, and yeah, it tastes like hot peppers... but it's not uncomfortable. I give it to other people and they're all yelling bloddy murder and bawling their eyes out. Why is that?
I have an incredibly odd immune system. Once I've been taking a medication for a week of two, I'm immune to it. So I take a higher dose. And a higher dose. And a higher dose. Then I wait for a couple months to use that med again.
Unexplainable Things: My chronic pain that is not being helped by "ordinary" doses of NSAIDS
No capsaicin reaction--at all
ALL tests come back normal
If I'm depressed, why have I been like "this" my ENTIRE life
No allergies to anything (including food, etc.)
Questions to You: How can this possibly be psychosomatic if I've been having horrible pain for five frickin' years?! Maybe I'm too close, but what would lead all these doctors to believe whatever I have is a psychosomatic disorder? Why do I not have any strong reaction to the capsaicin? Am I completely crazy? Do any of you have any idea as to why the doctors refuse to give me anything stronger than prescription NSAIDs?

All of the pain escalations happened BEFORE I was on one and a half million medications per day.

I know this is long, but I really appreciate your time, effort, and comments. Thank you,
Carissa

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