Messages By: profderien

I am glad that Stephanie has this venue to air her addiction problem, to get help, and to serve as a symbol of hope to others in her position -- there are many, many leading lives of quiet desperation.     

Still, I am tired of the show concentrating on abusers of prescription medications -- as a person with legitimate need of those drugs due to severe chronic pain, I notice that my pain management doctors have become more and more afraid of being accused of over-prescribing, of being noticed by some oversight entity.  Their hesitency only results in me having days wherein the pain is so intense I pray to die.   

I take 20 mg. of methadone three times a day, and I am allowed up to 25 mg. of oxycodone per day for what is called breakthrough pain -- pain that has "escaped" the coverage of the methadone.  

Since March, and the complete collapse of the bones in my shoulder, I have been nearly begging for an increase in dosage -- temporarily  -- until the joint is replaced [Sept 19].  The doctors are afraid... which is ludicrous.  Their fear comes from "the war on drugs," as well as the groundswell of real abuse ongoing with medications like hydrocodone, oxycodone.  

These broad brushstrokes are painting innocent people.  I have been at the above-cited dosages, or LOWER, for about nine years.   

Unbeknownst to my doctors, I even make myself take "drug holidays" at least once a month.  Why and what does it entail?  First the "why." Because of the impact of shows like this one!  I get down on myself and wonder about the possibility of addiction.  How it is done:  I taper off of the pain meds, more rapidly than is probably good, and I do an inventory of where the pains are, and their various intensities.  I don't have withdrawal symptoms, at least none that I am aware of... What I am aware of is incredible pain. I am in a wheelchair normally... but during the drug holiday, I am usually in bed!  

The value of my drug holidays is that they seem to "reset" my system.  For awhile, at least, I need less breakthrough medication... and I don't need to rely so much on, say, lying down, covered with ice packs, and some stupid imagery tape strapped on my head!     

I am so very glad that Stephanie will be afforded the help she needs and I wish her the best in her recovery.   

Just please, please, please -- consider balancing such guest stories with stories of those who have real [severe] chronic pain.  My pain comes from the co-mingling antics of lupus, CRPS/RSD, and osteonecrosis [AVN] -- and a partridge in a pear tree!    

The drugs are not the *best* treatment for pain, of course!  Attitude is everything; Love is so powerful... and the complete Marx Brothers collection can almost be curative!   

gallbrq -- 

i hope that your case of sarcoidosis spontaneously resolves itself -- to my understanding, it sometimes does that within a few years.  maybe, if your wife has a chance to read up on it and talk with your doctor about it, she'll have more understanding and patience. 

it can also, as you well know, become a chronic disease that flares up periodically...  

the worse case scenario is probably what has you and your family ready to break... people do die of it -- but fewer and fewer [and FEWER!] as science progresses. 

are the medications helping with the inflammation/granulomas in your lung and heart?  there is no way that what you're going through right now can be anything but very scary!  so have faith... because odds are that it will get better and even resolve completely. 

it is an adventure, this life, isn't it?! 

as great as i think dr. phil's web site is, and computer communication in general -- i have found that when i have been really ill -- sometimes the computer is NOT the place for me to go.  real people, real sunshine, flowers, food... they might be better. [don't everyone pounce on me at once] be sure to get your information from a trustworthy source... 

and have a gentle talk with your wife... is it about your disease or about something else?  maybe seeing your pastor or a counselor would be helpful. 

i'll keep you in my thoughts -- 

i am glad someone spoke up for methadone as an effective pain management tool.  all too often, people assume that it is only used for heroin addicts in their effort to go clean.  

the methadone used for medically supervised pain management is the exact same formula -- but usually is prescribed in pill form.  it is very effective and very inexpensive.  more and more pain management doctors are prescribing it fot both of those reasons.  extended release forms of drugs, like oxycontin, are being widely abused.  methadone, because of its long half-life, stays in your system just as long but lacks the abuse potential.  

i have been on the same dose for about two years -- for help with avascular necrosis [hips, shoulders, knees, ankles] and RSD/CRPS.  to be honest, it doesn't help much with the bone pain but it is fairly effective against the RSD/CRPS pain... and that's saying something positive!  

everyone is so different when it comes to pain and how to relieve it -- as hard as it is to believe, pain is a subjective reaction.  [and tonight, for instance, i find that exceptionally difficult to believe!] if you have chronic pain, a pain specialist is really necessary.  

although i must say i am ticked off by my new one -- still wet behind the ears.  i have recently suffered new fractures in my left foot and knee.  he doesn't get the concept of acute pain on chronic pain.  my internist just rolled his eyes... and i didn't find that especially helpful either!  

so a word of advice to all those with chronic pain -- ASK  now how acute pain is handled, should that occur! 

music is a wonderful help for me [just to talk about something besides drugs...] as well as critters.  any work that i can undertake is helpful...  but god save me from daytime t.v. -- dr. phil's show excepted. 

be well, everyone, g'night! 

it's wonderful how you fought the fibromyalgia, and won! 

how long did you stay in rehab and what sort of things did you do while there? 

take care! -- profderien 

the question of whether to work or not to work seems to be a pretty common concern.  i bounced around from part-time volunteer work to a fulltime [+++] volunteer position, and then [having a teaching background] worked as a substitute teacher.  my pain management doctor gave me enough medication that i was able to teach full time for a couple of years -- until my body just collapsed for good. 

what i wanted to share is the substitute teaching opportunity.  many school districts don't require a teaching certificate -- some don't require more than a high school education.  it varies but it's worth checking out, eh?  the classroom teacher leaves instructions that normally don't require active teaching so don't worry if the subject isn't your major or interest.  i teach foreign languages so i tended to luck out and get classes in my field -- but i also did english, math, history... and still got the same pay! 

it was perfect for me because i could take jobs when feeling well and could also pick or choose what schools in which to work.  the money wasn't great but it certainly was better than nothing -- and i felt like a useful citizen.  at the time, i was receiving SSI and social security worked with me as i tried to get well enough to teach fulltime. 

the suggestion made about using volunteer work as a stepping stone to "real" [grrr!] work is great!  watch out that you don't overdo -- in an effort to be SuperWoman, i wrecked my immune system.  still, it felt great to help someone else. 

i'm kind of spacey... i hope this makes some sort of sense.  ciao... 

dear jackie, 

i can't respond to you in a thorough manner but feel compelled to say something.  in may 2002, as i recovered from a shoulder replacement and some unfortunate subsequent events, i was in the i.c.u.  as luck would have it, i fell and broke my leg -- messing up the plantar and peroneal nerves.  i also whacked my left hand, injuring the ulnar nerve. 

i knew how broken bones felt -- i have avascular necrosis pretty much all over [have bone, will travel!].  so i couldn't understand the horrible, horrible pain.  nurses and doctors looked at me like i was hysterical when i screamed at the slightest touch -- even a breath of air. 

like you, i'd never heard of crps.  i went through essentially the same crap as you -- as everyone, almost -- before being diagnosed 19 months later.  it is said that crps easily treatable if diagnosed within the first 3-6 months. 

i was bitter.  i was angry.  i was eventually hell on wheels, because i also ended up totally dependent on a wheelchair... by the way, why on heck don't you have a power chair?  all you need is one finger to drive it! 

every fiber of my being wants me to tell you to calm down and take a deep breath.  breathe.  breathe.  breathe.  and i also know that that sounds condescending.  i may share the disease but i am not you. 

so... many blessings in your journey.  there are other doctors doing wonderful work beyond hooshmand but that's your call. 

have you ever tried working with a pain counselor?  i could afford to see one for three sessions and it really helped alot.  we tweaked my biofeedback skills and i learned how i was manipulating my sweet man's emotions... just because he was there and i was frustrated!   

again, many blessings -- get some sleep -- 

profderien 

hi --  

i went to see my pain mgt doctor on tuesday.  we clocked him at 3 minutes 30 seconds... setting a new record for a doctor freaked out by crps/rsd.  in the last 2 weeks, i have watched it spread from my right leg to my left.  so i showed up very nicely dressed, earrings, make-up, perfume... but with both legs shoeless, one blue, one red, both edematous and freezing cold!  he was diving for the door knob when i asked him about spread and he said:  "i know it's real because i've read about it."   

wow.  that is reassuring!  i shouldn't say any bad things about him though -- he forced me to see a pain counselor, with the threat that he wouldn't treat me unless that happened.  the therapist helped me very much -- it is a shame that bcbs wouldn't cover it because i could only spring for 3 visits.  if the stock market is kind, that's what i'll do with any windfall -- after fixing the roof, taking down two huge oak trees that are ready to fall, and so on and so on.  we have a private joke, my partner and i.  when it all becomes too much and someone or something is trying to pile on more... we crow: ETCETERA, ETCETERA, ETCETERA!  [from the king and i]  

3 minutes, 30 seconds.   

zoom zoom zoom!    

be well...  

happy saturday, all -- 

i very much enjoy the final weekend of the u.s. open.  i keep telling folks: *if* i were into guided meditation, i would want to meditate to the sounds of two base-liners going at it [sans television commentary!].  as it is now, i do biofeedback to the sounds of jimi hendrix or eric clapton [unplugged].  i know, they're odd choices, normally not soothing -- but to me they are.  like popeye, i yam what i yam. 

i want to recommend another book:  A Whole New Life by reynolds price.  prof. price was diagnosed with cancer of the spine and lived with terrible, terrible pain and a depressian as equally terrible.  This isn't reynolds price at his best -- he's maybe at his worst as a writer... but he went through many of the same drug regimes or cocktails that i read about here... and he found "a whole new life" through hypnosis and biofeedback. 

take care... 

hi -- 

i am sorry to read about the pain you have due to fibromyalgia and arthritis.  if you agree with your doctor's recommendation about disability, it is a long process.  if you are working, check with your human resources rep and find out what sort of coverage is offered there.  or you can apply through social security, in which case you need to become familiar with some confusing alternatives -- basically SSI, SSDI -- MEDICAID, MEDICARE. 

here's the address for the ssa: 

http://ssa.gov/ 

as for the medication messing up with your stomach -- i can relate!  be sure and tell your doctor because it could be important to treat.  i take yet another medication to help with that symptom... on and on it goes, where it stops... 

it is *almost* funny, what we had to go through to just get our diagnoses... and then to find out that treatment pays off best if done within THREE TO SIX MONTHS!  i guess that's why people with CRPS/RSD are so keen on educating everyone, especially medical personnel, about the disease.  it took almost 2 years for me to be diagnosed -- because the doctors involved were practicing "defensive medicine" -- a sorry excuse for abandoning patients to a world and lifetime of suffering.  

i am not without hope.  well, that's a lie!  a small lie.  i am without hope right this very small minute -- but that will change.  i had to spend most of yesterday dealing with pre-op stuff, getting ready for a shoulder replacement next monday.  as you well know, there is a rhythm to the pain, edema, stiffness, etcetera... i tend to pay at least two days for every one day "out."  we refer to them as my "slug days" -- not terribly poetic but accurate...  

i am running on at the mouth, sorry.    

just wanted to say that zippie's story is so common -- relief at being diagnosed after seeing one doctor after another, and frustration that treatment has been delayed.  

well... i am going back to slugging.  be well!