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
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,

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5 Replies:

  • WOW !My thoughts are :-Your system is actually very good ! YES, I did say good.BUT it has to deal wih too much, so gets things wrong (like we all do when we have too much to handle).Your body has been under intense stress for over a decade (pain is a stress on the body).I have a similar problem to your "odd immune system", mine is with all soaps (face/hair/clothes), my way round it is that I always have at least 5 on the go, use one for a week, then the next, and repeat.You knees may be to do with "knobbly knees", I do not understand it completeley, but a lacking of bulk muscles / tendons / etc. which means they can come out of joint and move round causing lots of minor damage (nothing major and easy to find), also because of the lack of "covering" they get too cold and the joint can not work properley, where makes things even worse.QUESTION - If you need a dental filling, does the dentist's standard anesthetics work properley ?I also find that I identify what is wrong, and ask my body to repair it. I do not tell my body what needs to be done as it nearly always goes worse. e.g. I have an infected cut, I ask my system to repair the infected cut on my wrist that is hot, swollen and painfull. I do not tell it to heal the infection and repair the skin, I just make sure it knows where the attention is needed and let it work out the correct balance (strange I agree - but it works !)ALSO there is a line of thought, that perhaps it is hereditary, with intellegence and health problems. Basically, the "thing" that makes you faster and better, also applies itself on the rest of the body (when it is not needed - hence causing problems).QUESTIONS :-How good are your English grades ?How good is your colour detection ?How good is your hearing quality (fequency range / perception) ? Are you musical ?Do you sometimes tend to talk to fast ?How easy would it be to hold 2 conversions at the same time ?How sensative to other people plight are you ?Do you ever get colds and if so are they "BAD" or "only light" ?You may well be depressed, lets face it, you have had major levels of pain since being a baby, that is enough to get anyone down. An athelete would feel down if they were not well and it would "take them time to get back in form". Everyone gets depressed, it is both a state of mind (as in missing a loved one, or feeling very ill) and also an illness as in "Clinical Depression ?". So you may be depresed, but only in the sense that you have had so much pain and for such a long period (QED - take all the pain away and you will instantly feel wonderfull !). BUT the Doctors find it hard to differenciate between "sustained momentary state" and a clincial illness.I have seen medical documetaion about pain travelling. They were studies, one said about tbhe pain following blood vessels (and recommended topical applications along the line of the pain) and another about the bodies responce to sustained pain. Bascially on sustained pain I have seen a few, the idea is that there are 2 causes, the nerves themselves are getting swollen and hence they pass the message to the brain that the area of pain is increasing and the other is that the brain senses no cure to the pain and so hightens it's responce to get you to do more. But as I said, these were conclusions from studies, so effectively they are the "thoughts of qualified medical peole", but they have not been proven in "proper trials", so are "not proven medical facts".You ARE NOT crazy !You will know more than your Doctors about your health condition and you can be very thankfull that you are growing up now rather than 20 years ago. This is becasue of the internet. There is a lot of JUNK out there (so be carefull and wise), but also there is a lot of good stuff. For exampple you can get information from New Zealand, which you would never otherwise have heard about.You said "immune to it", drug intolerance is becoming regular, there are many thoughts, but changing medication types regualry is a wise move, if one becomes "no longer available", you have no problems. Also if you keep topping the body up witht he same chemicals, there is a greater chance of residue build up.There are so many thoughts and arguments on all the subjects.This web page is not directly related to your problem, but you may get some help from the principle behind the problem (I hope that makes sense) :-http://www.drlam.com/articles/adrenal_fatigue.aspBasically this is about excsive use of the adrenal gland and the resultant chemical imbalance and the associated cycle (do not worry too much about all the technical stuff, just get the basic idea, and let your mind do the rest).Remember to think logically - the more hot curries you eat, the more you become used to them, the hotter you can take them - QED the peppers no longer effect you - do you see the analogy ?Perhaps you are "too close" but equally the Doctors are "too distant" and also it is possible that you not sending out the "right signals" when you talk to them, so they are judging accordingly.You need to take responcibility for your health (for a few reasons). The Doctors have good cause to not give you stronger pain killers, amongst the reasons; which they should have explained, is that when you have gone to the highest level medication (in perhaps 8 years or less) and are "off your head" becasue of the level of drugs flowing in your blood, also probably in delerium but also still in intense pain, how will you cope ? BUT more importantly ! the level of pain killeers you are having are very high and should be controlling the pain. If they are not, perhaps a different way is required.If I were you, I would try swopping my pain killers on a cyclic bassis (say 3 weeks of one type, then using another type, repeat ...) also after perhaps 3 to 6 months, you may be able to cut back the doseage by 10 to 25%. If it is'nt working, don't use it.Also ask your body to help with your problems, so ask it to help with X pain in X part of your body (remeber, do not command it or tell it how to do the job - e.g. you do not tell a tradesman how to use a screw driver).Because your body is not used to helping, it will "take time to get the hang of it", but if you do some reasearch in to finding out how much the body can "self heal", I think you might be amazed.I have asked you 9 questions, when you reply, I will give you the additional information. I am on a bad patch currently, so I may not check for a few days.Good luck with your future healthTerry
    Anonymous 42789 Replies Flag this Response
  • Terry,I have three things to say. Firstly, to answer your questions:1) I have never used novoccaine for a filling. I was given novoccaine once for another reason; I felt it, but it didn't hurt.2) My English grades are ok... I had straight A's since this year though, because of missing so much school.And if it matters, I have a wonderful time with languages. My German teacher is trying to get me moved up a level. But even though I won't, I will still be going to AP German later.3) I have no color blindness at all; my color detection is absolutely fine.4) I have acute hearing. I can hear a lot more than most people.5) I am musical, I think. I play the oboe and flute in school and have been asked to join the recorders for Madrigals. Outside of school, I play the acoustic guitar, I sing in the church choir, and I am taking up piano.6) I actually never talk fast. I always talk slowly because I want to find the right words and make sure they come out ok. But my mind is always at Mach speeds it seems.7) I can hold many conversations with many people, and I do it quite often.8) I am fairly good at reading body language and wording, so I can tell if someone's had a good/bad circumstance, even if they try not to show it. I'm good at showing sympathy and understanding, as well as giving my thoughts, opinions, and advice. 9) It seems like I can't go three weeks without getting a cold, but whatever I have is very, very, very often very mild. Secondly, comments:-I highly doubt I have knobbly knees. I went to physical therapy to strengthen my knees, and the "pretest" showed that I have very strong joints, muscles, tendons, etc. I went from an 8 out of 10 (on their scale) to a 10 out of 10 after the first month, when it takes people 3-4 months to get from a 3 out of 10 to a five out of 10 the vast majority of the time.-And I suppose I could be depressed, but I have always had this manner, and my "clinical depression" doesn't interfere with my daily life and I can pull myself together. According to the University of Health Services Tang Center at Berkeley, that means if it is depression, it would have to be dysthymia, and I've seen two more phychiatrists and and 3 therapists who do not think it is clinical.-I have come across the notion that this might be hereditary, but even if it is depression, the symptoms would be exaggerated, and no one in my family (either side) has had anything similar to this.-I have also been approached with the idea of traveling pain. However, my white count has ALWAYS been normal (if I don't have strep or the flu or something), even when I went off of all the NSAIDs for a short time recently.-I have had both cortisol and DHEA tests several times. I guess I forgot to mention that in my original post. That was what the endochrine thought I might have, but he decided that I don't have that.-I do get the analogy. And I have tried cyclic drug regimes. But, again, my system gets used to it after about the third cycle.-I have tried talking myself into getting better and have been using it since the beginning; my GP is very much into the mind being able to will the body as a "medicine" option. And third, new information:-About three weeks ago I began to feel extremely dizzy. While in school, I had vertigo and auditory and visual hallucinations. It wasn't anything evil or sinister, just very odd and seemingly random. There are no specific times when these happen, although the vertigo gets worse when I change my position from sitting to standing, etc.I hae been "kicked out" of school by the administration until further notice. I am on a homebound program, so I am not completely off of school.-I saw/talked to all of my doctors and told them, again, what all I was taking, in case it might have been a drug interaction.I also saw a neurologist from Children's Memorial Hospital. He as well couldn't find anything wrong. He gave me amitryptiline, and wants me to have an LP, CT, x-ray, and MRI, just in case they might find something.-I still have the vertigo and hallucinations. They are less often, but still very noticeable. Thank you for listening,Carissa
    whyus? 1 Replies Flag this Response
  • Do you notice that you build up a tolerance to all medications or is this specific to NSAIDs? Have you tried any prescription strength NSAIDs other than Celexa, if so which ones? If the Celexa is not working you need to contact the doctor and see if you can try a different medication, there are many out there and sometimes it takes trying several before you find one that works for you. Also are you aware that taking more than 2400mg of ibuprofen per day often can cause damage to your kidneys? Have you ever tried any kind of water therapy?
    SpineGirl 64 Replies Flag this Response
  • I just realized I had the wrong drug in mind when I was writing my previous post, Celexa is not an NSAID it's an antidepressant although it can be used off label for pain. This is probably why you have still been needing to take ibuprofen.
    SpineGirl 64 Replies Flag this Response
  • You mentioned an acupuncturist in your initial post - has it helped at all with your pain? Have you been prescribed herbs? How many treatments have you had? Were you breast or bottle fed? What do you drink on a daily basis? Do you have any food cravings? How is your digestion? How frequent are your stools? Best wishesDOM
    acuann 3080 Replies Flag this Response
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