We need some rights as chronic pain patients.. but what can we do???

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Hello all..
New Member


Date Joined Jan 2008
Total Posts : 4
   Posted 1/6/2008 3:01 AM (GMT -7)   
Hello all..

I'm in my mid 20's and have have Fibromyalgia all my life. When i was young I was told they were "Growing Pains" and that it was normal. I have also suffered from Irritable bowel syndrome which i have had as long as i can remember, as well as all the other goodies that come along with Fibro ; depression, anxiety, restless leg syndrome, chronic fatigue syndrome, etc. So I feel for all chronic pain sufferers. During the years of shrinks, Dr's, specialists, therapy .. I felt like a lab rat... paxil , elavil , wellbutrin , prozac , effexor , zoloft, haloperidol, depakote, lithium, zyprexa, xanax, valium , klonapin , vioxx , seroquel, risperdal , neurontin, lyrica, topamax, cymbalta .... those are from memory and i am sure that i am leaving a few out... After blood test after blood test nothing .. never any help ..
 
what was wrong with me???
i was told that it was all "In my head" from so many people i wanted to kill myself...
 
with no help ever in sight i sank further and further into the catacombs of depression... when college came is when the pain started to become intolerable and had taken front to all my other problems.. classes became a nightmare and i had bitten off too much to chew. Pulling a double major in engineering physics and philsosophy, i eventually started self medicating with alcohol marijuana. Although i did notice some relief from the irritable bowel syndrome from the marijuana, I used it mainly to help take my mind off the pain, but alcohol became a problem..
 
it was the only thing that getting me to sleep and that did horrible things to my body, my liver will never be the same. When alcohol stopped working, i was distraught, tired, unhealthy overall in just horrible shape was forced to leave college and a great job working in a lab. For the next 3-4 years as fibro slowly began taking over my whole body and eventually leaving me with extremely limited mobility, I tried my best to hold down a job, or go to school, but there was no escaping it every though consumed by it. I began to think i was going insane and was contemplating suicide for years. When it got so bad i was basically bed ridden i went through a litany of tests.
 
Only about three years ago my life changed and i was able to start begging to get my life back and it all started when a Dr. told me to see a rheumatologist. after months of weeks of testing and seeing other specialists I was finally diagnosed with Fibromyalgia, something i hadn't heard of prior. shortly after I was introduced to a pain specialist where my education of the struggle of pain control began. First Ultram ER 200 mgs (nothing) methadone (did help 10-15%, but was allergic,) and then i found my miracle drug that would give me my life back but hinder my pursuit of happiness as well. The education into the plight of the chronic pain sufferers and medication was quick and shocking.
 
I had read post after post online, horror stories of stolen pills, lost pills, abuse.... the addict.. this being the main focus of this post. Who is to blame for the monthly struggle chronic pain sufferers like us go through?
 
It all started with the drug seekers
.. junkies..
Death 
armed robbery
hospital raids
pharmacy raids
Dr's busted
 
Dr's became afraid to prescribe any opiate.
 
OxyContin gave me my life back and changed it as well. Over the years i realized there was not a soul that i could trust. I have had them stolen many times by many different people that called themselves my friends and even one girlfriend that told me she loved me. First a few here and there i would see that were missing, but i would lie to myself and say i lost them. Then it became worse and worse I would split them up and hide them in weird places... hide them outside.. at a unknowing friends house.. eventually i had to sleep with them between the box springs and mattress. the final straw is when she broke down to waiting till i was asleep at her house stealing the keys to my house to get in and search for the meds that i had hidden. When i noticed the keys were gone i called someone to go over and catch her in the act.. sure enough her and her sister were digging through everything to find them. That was the last i ever talked to her. luckily she didnt get the medication.
 
This is the curse.
 
Well half of it.
 
The other half is now once you lost them had them stolen, misplaced them .. whatever.. as we all know trying to survive it is the problem. The withdraws, the scrutiny. The worst thing that you can do is call your Dr. and tell him what happened. In California ,for example, you have to wait until a police case is opened to get a schedule II drug refill which can take weeks... with all the violence and abuse related to pain-killers the bureaucrats stepped in and made everything worse for the chronic pain sufferer.
 
When something happens what can you do???
 
Dr's are now too quick to label someone a "seeker" if you need replacement. Many here know this and am sure have been cut off by their Dr's for it. I live in constant fear of my meds being stolen moved many times tried not to let anyone know what i had or what medication i was taking but eventually someone finds an empty pill jar or sees you taking something. I now have to short myself on my meds just to build up a back-up just encase. Life for me is now a constant battle of secrecy and withdrawl. I know others are going through the same things..
I fear the plight of the chronic-pain sufferer will never be over..
 
addicts will never go away and there will never be peace for us....
 
Fibrodude

razzle51
Veteran Member


Date Joined Jan 2005
Total Posts : 763
   Posted 1/6/2008 5:22 AM (GMT -7)   
you are 20 years old and have Fibro . That is unusal . I would search further for another diax . What are all your symptoms?

Syringomyelia T4-T10
Chiari Malformation
Decompression Surgery 1999
 
"Remember That Life Is Short!!!" Life is short, break the rules, Forgive quickly, Love truly, laugh uncontrolably, And never regret anything that made you smile. <!-- / sig -->
 

 
 
 



PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 1/6/2008 12:23 PM (GMT -7)   
I'm just most if not all of us can relate to the struggle to find pain relief; I've not yet found answers for myself. But I wonder about the friends you're surrounding yourself with - sounds like a lot of people who ARE addicts. Maybe you need to take a look at that aspect, and try to build a support system of people who have no interest or desire in your pain meds. I'm not trying to be critical of you, but couldn't help making the observation.

cyndilphs
Regular Member


Date Joined Nov 2006
Total Posts : 26
   Posted 1/7/2008 5:57 PM (GMT -7)   
 
FIBRODUDE,
 
What a great post!! You were really able to speak the truth of
the troubles that FIBRO suffers go through along with many
chronic pain sufferers too.  
I am sorry that you had to go down the long hard road to the
diagnosis of fibro and to experience the deepest darkest parts
of finding help with the disease. The constant pain when you are
young and not knowing why you hurt and are so different than
the average healthy person at this age is very detramental!!
 
I also know the depths that the people that you do not even
expect will go to when they know that you have something they
want or are able to make a buck on.  I am sorry that this was
such a hard lesson to learn, however, it makes you realize that
you must protect yourself and your meds from everyone..
The best thing to proceed with now is accepting the diagnosis,
learning to live life differently, and finding the best medical
personnel that understands your diagnosis and are willing to
provide proper care and meds for FIBRO!!
 
Welcome to the forum and please feel free to vent here
when the pain and days seem to much. There are many other
FIBRO'S here besides you and me.
 
cyndi

Kiera
Regular Member


Date Joined Dec 2007
Total Posts : 364
   Posted 1/8/2008 6:28 AM (GMT -7)   
Fibrodude,

I can so relate. I could of surrounded myself with people that didn't seek my meds but then I wouldn't have a family. Unfortunately they aren't all addicts. As cyndi mentioned some are just after the buck.

When i allow my brother to visit i have to watch him at all times. Taking my meds with me in the car can be bad as when i park and even if i lock my car, it seems they can find a way into it. Also if i leave them at home it appears they somehow watch for the days my car isnt here and try to search. The problem is that at sometime we let the cat out of the bag and once the cat's out, you can't put it back in. Or at least it appears that way.

When my son, brother, daughter, and others visit this is when they love to do it. This way Im not keen to which one did it. Makes them in a safer position to help themselves. Hiding our own meds is a crazy life. I suggest a few things from experience.

1. purchase a safe and only you hold the key. Bolt the safe to the floor (as they will take the safe and all) , also make this safe to where they cannot recognize it as one. Whether that is to put a picture on it, a tablecloth over it, whatever you can do to diguise what it is.

2. Tell all of your friends that you've been changed in medication and now recieve shots at the dr's office instead. They will not think you have anything at home if you say this convincingly enough (its a lie, which i dont like to lie, but theres got to be a break in this).

3. The people that arent ones that you cant get rid of , such as family (and some would get rid of them too lol), you need to stay away from. Break ties with all who enjoy getting high. Surround yourself with friends that do not take drugs PERIOD. Much like PAlady stated.

4. permanent marker used on bottle each time u remove a tablet will let you know if YOU lost any or if any were taken by someone else.

5. You girlfriend doesn't love you, she loves your medicine. If needed, get a restraining order against her

6. purchase No tresspassing signs and have them registered at the courthouse.

7. Get a watch dog

8. Never , ever tell anyone ever again what meds you are on.

It's truly sad what has become of this. I have MS and a second condition that they suspect. I'm waiting on the labs to come back. Fibro is something that a few of my doctor's also believe that I have. Oxy does help. It does not kill all the pain. Nothing does. It's more of a combination or compliment of meds that do a better job. I gave back fetanyl 100 (end of life med), its supposed to be 20 times stronger than morphine, i felt absolutely no relief at all. It might as well of been a baby aspirin. This might of been because most of my pain was neuropathic. I dont know. I just know it did nothing for me. While a man with bone cancer in his arms and legs says it makes him feel like a teenager again (crazy).

Best of wishes to you. At your young age I would still recheck the dx with a different doctor just to be sure something else isnt going on. Sometimes tests will show negative in the beginning but later on , they show the truth. I know your relieved to have a dx, Im just hoping that you have the full one. That fibro is the main one, and not an autoimmune disease.

best of wishes,

kiera
Every day brings us closer to what we reach for .........in all things.
 
Kiera


stenoman
Regular Member


Date Joined Jan 2008
Total Posts : 20
   Posted 1/9/2008 12:16 PM (GMT -7)   
I'm such a Rookie at this....I don't know if I'm responding to Hello all...or Fibrodude? regardless......spot on message. I was going through the monthly withdrawal symptoms I must endure when I found this site. I've responded to a couple messages where I thought I might have helpful info but man did your message hit home. I am a 50 year old guy that despite a lifetime of spine problems would consider myself more of an athelete than a patient...problem is my body disagrees. My point is I want to improve my health. I want my spine to not only support my skeleton but allow me to return to an active lifestyle. I'd give anything to be able to take care of my wife, play with my kids, ski, play ball, camp, hike, and do all the things that were such a big part of my life before my back got so bad i couldn't count on it even on my "good back days". I don't want to get too graphic or melodramatic but I'm to the extreem where I fear loosing my wife because I physically can't live up to my most welcomed obligations as a husband....the role of provider. lover and best friend. I'm just a broken down hinderance that prevents her from living a full life. That said I want to go postal when every time I attempt to get a perscription I'm treated as a drug abuser, drug dealer or worse. The medical community that can't seem to help me with my back problems but can take every dime I've ever made or hope to make, looks at me with distain and disgust as if i'm a weakling for needed relief from the pain so I can have any hope of functioning that day. Then it gets better when I drag myself to the phamacy....more often that not those folks wear their predjudices on their sleeves even more and make filling a perscription a nightmare. My doctor doesn't account for any delay in his system so each month these same  folks that tell me there is nothing they can do for me to work on the cause of my pain, leave me with a 2 to 3 day lag in meds. I take the medicine exactly as perscribed and have for years...then when they are booked and can't see me I wait. And then when I get the written perscription the pharmacy is usually out or doesn't have a month's supply and won't issue a partial so I wait...all the while, going through the toughest first three days of withdrawals. Many times I just give up and do without but reality sets in and after a week or two unable to get up and go to work so I give in and recommit to getting help. I fill the perscription and go to work committed to seeking a compasionate doctor that is willing to commit to helping....I've come close over the years but no cigar. Right now I earn a very substantial living and I'm less than broke. After years of this you get to be well known with the insurance carriers so everything is "preexisting conditions". I can't tell you the hundreds of thousands I've paid and still no relief in sight. Most recent example is I had a golf ball or larger size growth on my wrist. my doctor sent me to a specialist that upon reading my history of back problems mapped the nerves in my hand and arm. Of course he found nerve damage...I have a spine problem for crap sake but that doesn'r explain the ball on my hand! He sent me to a surgeon but I declined surgery because the knot and pain went away. BCBS said the knot on my wrist wasn't covered due to preexisting spine problems!!!! A few thousand more. My own doctors didn't even tell me what they thought it was or what they told BCBS it was. Regardless I can tell you a growth on my wrist has nothing to do with spine injuries due to a rear end collision...unreal! But the real kicker is being treated as a leper by the people that say there's nothing they can do for you except manage the pain....your message is so similar to what I've experienced. Wow! I hope things get better for you very soon.
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