((( Elsa...re: my req for advice )))

Discussion in 'Fibromyalgia Main Forum' started by orachel, Oct 12, 2005.

  1. orachel

    orachel New Member

    Hi again!

    First off, I wanted to apologize for my last post! I know it wasn't mean, but boy oh boy was it frantic! LOL

    It literally is the pain. Usually I get like that at the end of a hard day, week, month....almost always when my levels have been in 8-9 range for a week or more...just makes me totally wonky and desperate. Understandable, I suppose, but totally unacceptable to me and pretty dang weird! LOL

    The last few (BLESSED) days have been a Godsend...I don't know what changed, but I've had about 3 "6" days in a row. 6 isn't great, but I can handle it, I can focus thru it...and it certainly doesn't turn me into a raving looney.

    I literally feel like I can BREATHE for the 1st time in months. The only other "relief" i had from pain for more than an hour or two of less intense pain in last 4 mos was (coincidentially?) exactly the same time as my neurological condition got out of control. We figured out (you all here did...not the er, or any of my docs) that it was a drug interaction. However, unfortunately the same drug that must have been making my pain levels a bit lower also made me virtually unable to read or write or speak at all. NOT an ok trade in my book.

    Pain is driving me bonkers, but my mental faculties are MUCH more important to me, especially long term. So, those drugs were cut out of my schedule for good.

    In the last few days when my pain has been a little better, I've taken a bit of "relaxation time" for myself...sounds pretty darn funny considering I've been mostly on my bum at home for 4 mos when not at docs appts, but there is no "relaxing" with pain at that level. I've actually finished a book (not fm...just good old fashioned fun schtuff!) that I've been dying to get my teeth into.

    Today I managed to get to the natural foods store to do a bit more in the way of supplemenation etc. The women at my store are so amazing and knowledgable....like free nutritionists and wellness experts! I got some emu oil (I know, I know...a long shot. But oil is oil...even if it doesn't work it will be good for massage. And I could justify trying it bc it was only $5!...oddly enough, dang stuff seems to be working pretty well, but that's only since this afternoon of course.), and some natural castor oil and organic wool. My godmother is a big supporter of castor oil therapy, and one of our members experienced bigtime success with it...so will give that a whirl also. Picked up some b complex lozenges, as those are supposedly lacking in a good portion of us...and whatever my body doesn't need it will dispose of.

    Again, none of this stuff is invasive or dangerous, but it gives me something to "hold onto" by way of pain assistance in the future, even while I'm in this whole "dr holding pattern" right now.

    I did see my pain mgmt PhD today...she is just AMAZING. Honestly, after my recent dr experiences, I think she and my new sleep dr are the only ones keeping me from total dr phobia. I know amazing docs are out there, I just haven't found great luck with the ones I was hoping on....frustrating in light of the "screening" process I attempted to make sure my care was as strong and informed and understanding as possible. I told my PhD that even though she feels like pain levels are my biggest "mental issue" right now, I'd really like to also see a psychiatrist, as my anxiety levels seem to rise in proportion to my pain (duh! LOL). I'd rather not end up on xanax or anything overly "altering", but hey, I do need something simply to force my body to relax when so tensed with pain..and then my mind follows suit. So she recommended 2 wonderful women, and I'll give them a call tomorrow.

    PLUS, she agreed to go totally against the grain for me and speak to the director of the practice about direct referring me for pain clinic to get adequate pain control! I'm not getting too excited yet, because who knows what will come of it. But I gave her the reports of my physical therapist who "measures" my pain levels pretty darn accurately, and I think she (phd) understands that my concern arrives from a "quality of life" issue, as opposed to a "drug seeking" issue.

    Obviously, I'd like to be total natural eventually, but this is a perty durn crucial time for me. Diagnosis was just so recent, and so much of my "anxiety" is difficulty getting in to see specialists who are supposed to further "diagnose" me to make sure nothing else going on...neurologist, neuropsychologist, etc. I really do still have some concerns in that area, but that is more a "ruling out" bad options than "sure I've got something awful going on in brain", so that's certainly an improvement! LOL

    I guess overall I've just been feeling much more together and in control the last few days...because my pain levels have been a bit more manageable. WHEW! I sure needed a little break from it, as I'm sure you could tell! Poor thing, having to read my ranting...

    Was actually quite proud of myself today because in addition to doc appt and natural food market, I also managed to pick out a ridiculous teeny tiny set of nicklaus golf clubs....for my step son's 7 year old birthday! LOL...he's such a little yuppie, but that's what he wanted. He's a carbon copy of my husband, so that child stole my heart the minute he came into my life (of course so did his brother and sister!).

    So....things are a bit better now.

    But hey...seriously....when I ask for advice, I'm totally open to it. There's nothing more effective than constructive criticism....if all we walked around hearing was what we wanted to hear, there would be very little in the way of "self improvment" in this world. That would be a shame.

    I'm such a dang novice...I know. But man....not with a whimper but with a BANG this thing hit me! Seemingly out of the blue, but now that I'm more knowledgable about it, very clear that this has been in my life for a long long time...it just never reared its ugly head before. I am totally open to any advice. And I know you're going to say too much research can be a hinderance...I understand that I'm shooting myself in the foot (figuratively, of course) with all of this fm reading. But the only way to describe it is that I've always felt somewhat "powerful" in my career (not that I was anyone important, or anything...I just mean that I knew that I went out of my way to try to help my clients in any way possible). That is obviously not an option for me in the "here and now"....and I'm also just a knowledge freak. Give me a book and I'm happy for a day.

    But then, with the neuro issues and probs reading and writing, I did get a bit frantic with it...When I could read and write effectively, I felt like I HAD to, because who knew when I'd be able to do it again, you know?

    AAARRRGGGH! This is just a bizarre turn of events for me. But oddly enough (and I hope this doesn't offend you...it does some people), I do really see the "silver cloud" with this horrific awful thang that's come into my life.

    I've found myself wanting to write articles and even a novel about the day to day issues that something like this brings...not only for those who suffer, but hopefully (if i get my semifunny cap on), it would appeal to those with no experience with these things. This whole problem is ENTIRELY too widespread to have such limited understanding in the public at large. I'd love to do something, even in a small way, to help combat the lack of info (and worse! misinformation!) that's the status quo now.

    I was always "everyones little most likely to succeed", you see...and have felt like a great large ball of unrealized potential for a number of years. Just knew I wasn't fullfilling my "place" in this world as I was intended to...and wildly enough, I think working to assist others with these types of illnesses might be what I'm being led to do. Problem is I've gotta get my own strength up first!!

    Esp as my atty has advised me to file ssd tomorrow. Soooo not looking forward to that battle! LOL

    So yeah, elsa...I am 100% totally open to hear whatever suggestions you have for me. I really seem to have exhaused all of my local resources (and some of the less local ones!), and have yet to find a dr to help me with some medicine to give me "bursts" of relief...even if its just for a few hrs a day. That gives me the time I need to breathe deep and recharge my batteries a bit, you know what I mean? Don't know what to do about that, but I'm pretty determined when I put my mind to it...just don't quite know what to "put my mind to" if you savvy.

    Thanks for any assistance you can offer. I'd be glad to help you in any way possible, and I really appreciate the offer of "honest" advice. If I wanted someone to blow smoke up me...I'd get the hoover!

    Straight shoot it, girl! LOL

    Hugs, and enormous thanks!

  2. orachel

    orachel New Member

    Please keep bumped for elsa if possible...Thank you!

  3. orachel

    orachel New Member

    for elsa.
  4. orachel

    orachel New Member

    Thanks all!
  5. orachel

    orachel New Member

    bump for elsa.
  6. elsa

    elsa New Member

    Sorry it took me so long to get back to you. I wasn't able to read or post anything earlier today .... not my computer but something with the board. Anyway, just now got the chance to respond.

    I'm glad you had a pretty good day yesterday. Nothing like doing "normal" things that make you happy to shake loose some of the "I can't believe I have this junk funk"! I pictured those clubs .... little preppy ... diggin it.

    I liked your thought of a silver lining. I'm not even remotely offended by it. If we don't look real hard and find a positive side, a silver lining or at least a positive lesson in everything that occurs in our life, then we're in for some seriously sad and dark times.

    If you have already latched onto the idea of writing a book for other's with fibro and adding your warmth and humor throughout it, then I think it was probably meant to be.

    You have a gift with words, writing makes you happy and feel productive and you'll be returning the "favor" of the gift by helping others. Can't ask for more then that. You can use to prospect of writing your book as the "prize" for gaining remission.

    I understand about the love of knowledge ... I'm that way too. The internet is the most wonderful thing. You have a question about why the sky is blue and the internet is going to spit out five different theories/reasons for it being blue instead of green.

    What you do with those theories is important too. Especially with something as broad as the sky ... or understanding CFS/FM.

    Research is great. With have to be our own best support because this illness has so many unknowns. But like that sky color analogy, once you get your hands on those five theories/reasons, you have to rely on your own critical thinking.

    Very few things in this world are absolute from beginning to end. There are going to be things in those research papers that make perfectly clear and logical sense.

    There are also going to be some thoughts that are alittle too respresentitve of the author's opinion. (I don't mean this badly ... even CFS/FM researchers that I have the highest regard for are going to have their pet theories, and through the power of arguement, make some of those theories look darn strong.)

    I guess I'm saying to look for things that fall away from the research and start leaning towards passionate opinion and take those with the "interesting ... possible ... but I'm going to hold off on agreeing for the moment" approach.

    I'm afraid you are going to implode from too much "fact" . LOL. I also worry you're going to burn yourself out if you keep up this pace ... you've got time. Go easy on .

    I have all kinds of things to say, hang with me, o.k.? Bet I made you nervous with that one huh?!?

    It looks like you had a good week in the progress department. I'll show you what I mean in a second.

    Most people would agree with some basic premises in treating CFS/FM. I worked it out in my head in a certain way that seemed manageable ... 1. get symptoms somewhat stable. 2. fix the sleep disorder. 3. treat any viral infection(s)/strengthen immune system. 4. Balance the hormones that are thrown for a loop... HPA Axis.

    Some add more, some less ... but these are some very basic areas that need to be addressed for a better quality of life.

    As for the causes of Chronic Fatigue Syndrome and Fibromyaligia ... well, who cares. Didn't expect that one did you?! At this juncture I don't have the physical resources to comtemplate causation. I can't be bothered .. LOL

    It is what it is and I have it. I want to feel better, so that is the direction I'm going in and taking my resources with me. I will always have time to figure out the "why's" ... know what I mean?

    I had to break things down into little segments that I could handle or I would eventually crack up. My very first decision was ... what is the outcome I want? What do I realistically see myself doing? What am I working towards?

    Easy as pie, that one. I want to be back in the show ring. I showed quite intensely right before I was diagnosed. I survived it and was very successful. I also nearly killed myself! LOL I had a real strong feeling what was wrong with me .. sure enough a few skinny months later my oh so cool doc said CFS/FM. That was two years ago.

    O.K. ... I have a outcome to work for. I know what four areas to work on. Took the first one ... get stable. Keeping in mind my target outcome, what drugs where going to work to accomplish it? Opioids wweren't for me. AD's weren't for me. Anti-seizure meds weren't for me. None of it for the reasons you probably think.

    I cannot risk my neck jumping horses over complex courses with my brain wrapped in cotton from rx'es. Opioids would deminish my pain, but if I never reached my outcome with them, then it would defeat the purpose.

    My medications work well within my planned outcome. Fixing the sleep disorder is fairly easy. Not much for me to do but show up at the sleep clinic and let the experts do their thing.

    15% to 20% alpha intrusion with no REM sleep. Now I know what to work with ... no drugs that suppress REM.(You would be amazed how many drugs due just that.) Alpha intrusion was not that bad comparatively speaking, so I didn't worry about it. Have a script for lunesta ... problem solved ... moving on.

    3. Viral infections and immune strengthening. Rachel, this is not as complicated as you might think. I quite worrying about how many thousands of pathogens may or may not be floating around in me. Taking anti-virals is not a risky venture for most. So, that is exactly what I did.

    My testing showed elevated EBV beyond the point of recording actual number. (Should see test results ... just says "greater than __".) Six months on valtrex. Easy as pie, didn't bother me at all. 6 months on famvir ... same thing. The plan was to take both to get it all.

    After I finished the rx antivirals, I started one at a time, supplements to train my immune system to "fight it's own battles". (I give Mikie ... here all the credit for this.)

    I started with colostrum first .. added whey concentrate protein shake and lastly, Transfer Factor Essentials. I did finally herx with the natural immune supplements, but it was a small herx reaction. Now, I pulse TF every now and then and take antioxidents to hold the line.

    I'm on my last leg of my protocol.... 4. Hormones. You can look at my post to Manwithfibro to read my thoughts on this whole area. In my case, I believe the out of control hormones are my worst system dysfunction in CFS/FM. (It is different for everyone.) Second came the sleep disorder with immune being the least destructive.

    Where am I in my journey? Much, much better then I was. Going to the store, doing my hair, living life is not nearly as tough as it once was.

    I ride around on my horse ... but I'm not "training" yet ... big distinction. My work is high energy and work days can be anywhere between 9-12 hours. I don't and never have, worked 5 days a week with those hours, but I do manage 2-3 days per week.

    One of my doctors is seven hours away ... drove myself for a Sept.26th appt. and heading back again this Sunday ... on my own.

    My house looks pretty good ... but not pristine. LOL I pulled weeds and re-painted my patio furniture a couple of weeks ago.

    Am I almost well? No ... never will be. The normal me is long gone. I have to pace. I have learned not to sweat things I can't change and to go with the flow. I can't do my work and groom my horse on the same day and my husband and I have to make "dates" several days in advance so I can be sure to have the juice for it.

    My point is remission is possible. It is an enjoyable experience, but the Elsa prior to CFS/FM is gone. And... that is totally cool. I never set any timetables in accomplishing my outcome ... just put one foot in front of the other working to get it done.

    I probably will never be able to do the number of shows I did prior to CFS/FM and that's o.k. too. To try would make life very tough and it would no longer be something fun for me, but something horrid. Got to be happy!

    I will no longer set the world on fire finacially either, but I do work I am proud of and I feel productive. That ain't bad all thing considered.

    From what you accomplished this week in your healthcare is great. You are on your way to stablizing yourself. Just remember one thing ... what you might take now is not necessarily a "life sentence". Very few things have forever attached to them.

    Sleep specialist is on your payroll now too. Fabulous! Has he scheduled a sleep study? It really is a good thing ... had we not, we never would have known that the majority of CFS/FM rx'ed sleep meds would actually have made me worse.

    You have quite a level head where adding a psyc. specialist is concerned. I didn't go the therapy route, but my situation is different then yours.

    I really and truly did have a life threatening illness prior to this. Very life threatening ... Treatment worked, I'm healthier then normals where that is concerned now.

    When I got the news I had CFS/FM I could of danced naked in the street. It wasn't GOING TO KILL ME! Yippy ... so it's chronic ... big woo. Let's fix what we can and go around what we can't.

    So, Miss Rachel. There you have it. The absolutely longest post known to message boards is proudly addressed to you. I did kinda warn you ... "are you sure you want my help". LOL

    I hope I haven't turned preachy or acted like a know-it-all 'cause I surely don't. I did, however, manage to break this all encompassing illness into little bite size pieces that I could handle.

    1. Set an outcome. 2. get stable. 3. fix sleep. 4. treat viral & boost immune. 5. fix the hormones. Keep your sense of humor. Don't be super woman (tough one for you I'm thinking, LOL) and give yourself a chance. Life is still pretty good ... or will be in the near future!

    I'm sure I left stuff out ... like.. you are the one who has to swallow those pills and feel the effects. If you don't want to take something look 'em dead in the eye and say " thank you, no".

    All kinds of other things are useful.. massage, acupuncture, supplements, amino acid therapy. But ... why don't you start on the other steps first and when you start to feel human again then look into ancillary things.

    Again, I hope I didn't just make an enemy for life with this. I was worried about you. I saw a bit of myself in you... back in the day when I was spinning my wheels and close to blowing sky high ... trying to understand and fix all this in about a week. All I accomplished was making myself more ill ...

    If you have any questions on life according to Elsa, just ask. That is if your not affraid you'll get another diatribe. Please take care of yourself. Things will get better ... I promise you.

    Take care,


  7. orachel

    orachel New Member

    your precious time and energy giving me the low down on your own valuable experience, and you're worrying about me being upset with you! LOL Heck no...I'm thrilled.

    So much of your stages are what I'm working toward....

    I've dealt with the acceptance (that was the 1st for me...hubby is still dealing with it, but will come along in time)

    I seem to be stuck at the "Stabilize" part....my pain is just too great for anything theyve given me (ultram 400 mgs...doesn't even touch it.) I am so not a fan of DRUGS with a capital D...but I'm also not a fan of being O productive with a ridiculously low quality of life. If I look at the avg functional abilities chart.....I can hardly ever do any of the things listed....dressing in sweats and brushing my teeth is a daily accomplishment. Don't know why my pain is so bad....but it is regardless of all non medical pain relief strategies...so I really do need to find a doc who is willing to prescribe something stronger. I'm not a drug seeker...I've just never had that behavior. And I do know the importance of medicating "to your pain level" and not beyond it...last thing I want is to be altered. But at this point I'm so filled with anxiety and tight because I'm holding in all this pain...I fear for me, some narcotics are necessary at least until I can get some of these symptoms under control. Sad, but true.

    As for your viral issues/ hormones...where did you get this detailed testing done? FFC? I'm hoping to start there in January...I just had an EXCELLENT conversation with my health care provider. Great chance they'll reimburse me 60%, and possible they'll reimburse me 90%!!! I guess they figure if I've accrued over 10k in medical bills for them in less than 4 mos, reimbursing me for a clinic that might actually make a big difference in my health makes sense from a fiscal point of view! LOL...plus, I got my reps name and number, and she's a medical billing wiz, and we got all chatty, so I think she is a great asset for me on my side.

    She also managed to get the neuropsychologist my doc wanted me to see approved (on providers list) when I was flat out told no last week.

    Sleep study set today...I think its November 2nd ish...they want me from 6pm one night, to 5pm the following evening. Want to view me sleeping at night, and napping during the day. I told the doc that I can barely sleep,let alone NAP even when exhausted, but he's the big guy, so I'm willing to go with his gut.

    I strongly believe in antiviral therapy. A few yrs ago I went to a wellness clinic in Florida (too bad there's not one here!) and they diagnosed me with a number of dormant viruses (kinesiology) and I was treated with antiviral infusion therapy....worked great...never in better health.

    Basically, I know what I'm working toward, and I know what I have to do to get there....I'm just sort of stymied as to how to get symptoms under control here.

    Pain is so bad my pain mgmt phd is talking to her managing partner to see if they can direct refer me to a pain clinic...they do NOT normally do that. She's really terrific.

    And got appt with psychiatrist today who specializes in dealing with anxiety of chronic pain (whoohoo!), and she happens to run a support group of chronic pain sufferers...many of whom have fm! I've been looking for a local group for ages.

    Thank you so so very much for all of your advice and guidance. I know you're a super busy lady...but any advice you have in the future is welcome also! I just can't thank you enough.

    I know I was driving myself a bit wonky with all the intense research...now limiting myself to 2 hours a day while on heating pad with castor oil poultices....but at the time, esp after had that horrible scare with not being able to read and write (which still happens quite a bit, but not as severe), I just wanted to absorb as much as humanly possible before i had permanant "brain fry"! LOL

    Oh, also made friends with neurologists scheduler...that is a very good thing, as she's moved me to the top of the cancellation list. She also poo poo-ed my doc who was so dang casual about getting me into a neurologist in the first place. She says the vast majority of degenerative neuro issues are missed with fibro/cfs patients because everything is just written off as "no biggie...fibro fog". Said that's the most dangerous thing they see in their practice, and esp tragic when the condition has been degenerating neurologically when it could have been caught much sooner. So, all in all a terrific day. Though i have been getting chronic migranes last 2 weeks...this is new. Used to have about 1 bad 2 day migrane per year...have had 3 in 2 weeks...Just another thing to put on the list to deal with! LOL

    I'm so thrilled you are able to particpate in showing! Its clear how much you love it and how accomplished a rider you must be! My neice is 13...just a dollface. Been a "horsey" girl since she was 5 or 6...now has 2 horses, and is regularly showing (and winning!!!). This isn't a wealthy family...her dad has a bit of farm land with a barn, so its really great to see her excel even out of her "box" socially...excellent for her! Plus, this little wonder is so amazing, she used photoshop and a few other print programs to create a 20 page glossy magazine about horses...complete with her own adds for horse products, stories, etc...really really amazing and proud of her! I see a future writer for horse and hound in our midst! LOL

    Again...I just cannot thank you enough, for your time and your effort. Nothing you said was in the slightest possible way insulting. Believe me, I can be "sensitive" about things, and certainly have a tendency to see "persecution" from some not so nice members of the medical community....

    But I also know that noone in my FMily would ever set out to hurt me, so no worries whatsoever there!

    Hugs! big ones!

    Oh...and are you a computer guru techie woman, or do you know any others who are on this board? We could really use some "tech support" helping us figure out some issues with Kate's Baby shower....

    If you know of anyone or can offer any assitance, we'd sure appreciate it!

  8. orachel

    orachel New Member

  9. elsa

    elsa New Member

    Thanks for the bump .... Lost track of time again today with trying to get organized for my trip.

    You do look like you have a good plan coming together. That's great! Speaking of great things ... How about the week you had this week ?! You really broke through and made progress with the appointments, etc..

    Cool about being moved up on the neuro list. I really think you won't find any problems, but I know it will be a load off your mind (no pun intended, LOL) to find out for sure.

    I'm sorry you're struggling with the "stablize" step. It's tough for everyone and very few protocols are "perfect". For me, it was more important not to be made dopey, ( riding safety and all that..), but that isn't a worry for alot of people.

    I know you are a little jumpy/concerned about addiction possiblities. I came accross some excellent papers on just this topic today. I'll post it's own thread soon.

    You're just going to trust me on this ... chances of that happening are very insignificant. Besides, pain pills or pills for EDS (like adderall) don't make you feel "great". They do their job,(hopefully, LOL), but you know you are on medication. It's just not an escapist, partying, feel good kind of buzz.

    You know ... Since you are a card carrying member of Research Anonymous ... LOL, ... ( As am I )... Why don't you make a list of what drugs you want to try and then talk them over with your doctor? That's what I did for the majority of the maintainance rx'es I am on.

    This board is like a pharmacy reference book, only better. Look over what everyone is taking ... ask yourself if it fits in your plan and then go from there.

    I cannot stand AD's ... they don't like me either ... No way was I going to take them in the treatment of CFS/FM. Do you like being on elavil? Is it really helping with sleep and pain? I just think alot of doctors are hoping AD's will cut it so they don't have to face the prospect of rx'ing pain and sleep meds. Just my theory though.

    Once you get the right rx to stop the pain cycle I'm sure you'll be able to back down to a milder one. It's true you know ... the stopping the pain cycle theory.

    The only rx I have that I am not crazy about is flexeril. Not because it doesn't work, but because of the groofy feeling that can go with it. My doctor insisted that I keep it on hand. When any pain from over-doing or flare spasms come on, I add flexeril to the mix for about 36 hours and then I'm good to go.... No more flare spasms.

    Maybe a mild anti-anxiety med would be helpful until your chronic pain therapist can have a chance to help you?!

    Just some thoughts ... getting the maintainance drugs together is a time consuming step ... but oh,so worth it.

    Way to go on the sleep study appointment. Looks like they want to rule out narcolepsy by having you stay all the next day. I bet you don't have narco., just excessive daytime sleepiness related to a sleep disorder. Either way, I'm glad you'll have answers soon.

    You asked about how I got all my indepth testing done. For starters, I was one of the lucky ones in the primary care doc department. He pulled so many vials of bloods, it's a wonder I didn't fall out. Tested for all the pathogens.

    The intergrated doctor who specializes in bio-identical hormone replacement checked all the hormone levels .. "every hormone in my body" was my request. He's familiar with the bazaare endocrine problems with CFS/FM so I'm good to go.

    That's great about your Jan. FFC appointment. If you wanted to get started sooner, you could just go the hormone patient route first. ... 299.00 for that package. You could be working on these while waiting til January to start with the rest of the testing/treatment.

    Looks like you got tons accomplished this week. That's always a sure way to lower stress ... by finally getting somewhere in the answer seeking/problem solving department. You Go Girl !!!!


  10. orachel

    orachel New Member

    No, I haven't taken elavil since my provigil/elavil scare...won't touch either one again.

    I have already done the "taking the list of meds with me" thing to the doctor. Printed out a list of commonly used fm meds from AFSA website with all uses, side effects, dosages, etc...he wasn't interested. Yeah, I'm looking for a new doctor!

    I made GREAT friends with scheduler in my neurologist office..they moved me up to the 31st of this month! That's great news!

    I agree about the addiction thing...there is a very big distinction between tolerance and addiction. As far as I'm concerned, addiction involves drug seeking behavior. There;s been a truckload of studies recently that a person with a high level of chronic pain who "medicates" to their pain level (never takes too much) and keeps solid records will not often become an "addict" with drug seeking behavior. The medicine, like you said, does its job. From what I understand, based on my current pain levels, meds (strong ones...I'm thinking like methadone at a low dosage just for the horrific pain. I know pain in the 8-10 ranges so frequently is causing me to hold myself so "taut" that its a whole nasty cycle! LOL) will probably not even make me overly drowsy assuming the dosage is correct for my pain level. Quite frankly, I just need some dang relief! Just a little! LOL...but Tolerance and dependence, on the other hand, those are inevitable with long term use of many meds. That's why god invented pill cutters, for crying out loud! LOL So we can taper down the dosage as our need becomes less! Our need becomes less as we begin to find our natural protocol that works for us, and we're able to better condition our bodies because pain levels are more bearable.

    Sheesh. How is it that we get this stuff but so many doctors don't?! LOL

    It really just seems like common sense to me. But unfortunately there are a ton of "junkies" out there who make it so very hard for those of us with real need to be properly medicated. I'm just a bit "over" being treated like a crack addict jonesin for a fix when I ask for medication to treat my very real pain. For crying out loud, I've been a responsible professional person for my entire adult life. As soon as you mention meds to some docs they automatically view you as a "drug seeker". Working on finding the right doc...but also don't want one who will toss narcotic scripts at me like candy...

    I really would like to find someone who understands the situation well enough to medicate me properly to enable me to focus on my health...with his or her help, of course!

    That seems pretty simple, but apparently much more difficult in my area. Having great luck with the specialists, though...so will just be grateful for that and hope for the best on the rheumy/physiatrist/internist front...That's all I can do really.

    Thanks so much again for all of your help! I know there were more things in your msg I wanted to respond to, but with being unable to see all subsequent posts and my fog, I flat out cannot remember! LOL

    Have a wonderful weekend!!!

    Ok..just reread your response....I didn't like flexeril either. They had me on it with vicodin when I initially presented with back pain only 4 mos ago...of course they yanked away that vicodin when they figured out it was fm....it wasn't strong enough to do much anyway! lol

    And yes, I have my first psychiatrist appt halloween as well, so between neurologist and shrink, that's a big day for me! lOL....My phd in pain mgmt referred me to a psychiatrist who focuses primarily on the issues arising from chronic pain..and she has a support group! Yes, we did talk about fact that while I don't seem to have any great depression, I definitely need some assistance with my anxiety. I've always been a bit of a drama queen (a big bit!), and combine that with whole world gone wonky in last 4 mos...you bet your bippy I'm anxious! But thanks for the concern, definitely. I'm hoping that once pain levels are under control, need for anxiety meds will fade also, as the major pain seems to be the biggest contributer to the anxiety. Big surprise, right? LOL
    [This Message was Edited on 10/14/2005]