My introduction :)

Hello everyone,

          I have been getting info and advice from you all for quite a while now by reading & reading.    My name is Dawn, new here, in '87 I was hit by a pickup truck I was 17, 6yrs later I was diagnosed w/Spondylelothesis (pars fraction), Herniated disc, osteophytes on my vertabrae (arthritic bone spurs), DDD,

I was ttc & started the long journey w/surgeries 4 that, I was obese after yrs of losing & gaining.  
                After 12yrs, 5 IVFs, a m/c, I was pg w/twins.  Sadly I lost one of the babies very early on.  But by some miracle my son Cory was born healthy, strong & beautiful in 2002.  In 2003 I had Roux n y gastric bypass with the thought that it would end or at least calm down my awful back pain.  Of course throughout the years I tried all the meds, beginning w/the lowest non-narcitic to the higher dosed opiods.  I did the physical therapy, steriod injections, pain patches~ tried it all.

I lost 165lbs but the pain only intensified.  By then everything in my back had progressed and moved up to my neck.  At 34 I was told that I had the back of a 90yr old.  The last orthopedic surgeon advised me that eventually I would have to have surgury but because of all the possible pain causes in my back, I should delay it as long as I could.   I was sent to a pain specialist for pain management  Unforgently, I hadn't done my research and accepted the doctor's advice and was prescribed Methadone for my pain.

   After 9yrs I was at an extremely high dose of 260mgs a day (again I had no idea), I lost my doctor to what I think was some sort of DEA problem or something because he was a family doc & he suddenly  just shut down shop & said find a new doctor 4 pain management.  Because of by then we lost our health insurance (& a lot of other things because of Michigan's horrid economy) topped w/the Heroin stigma associated w/Methadone,  I couldn't find another pain management doctor and had no other choice but to come off of Methadone.

  Thank God that I am now thru the worst of the long painful (both mentally & physically) withdrawals from the Methadone.  I honestly would have ended my life if I had had the means & opportunity to do so~ that's how intense the wd's were.  I will never ever go in blind on anything I do again.  I research on every aspect.   And I will NEVER take another Methadone no matter the dose.  If I could have I would still be on it because of the crazy weeks of restlest arms & legs & I mean NONSTOP for 2 weeks! Not a minutes rest or a second of sleep. 

I lost 30lbs ~I was already too thin but the Methadone improved my appetite so I had been able to maintain my weight for many years.  I can't even begin to really put it into words how bad it was. But now that I am on the other side of it, I am so so happy that I am off the med.  It helped my pain immensely but it also numbed my soul.  I don't know what the next step for me is...I hurt so much.

 
          I am so very fortunate that my husband, Mom, and son love me so much.  They literally waited on me hand & foot~ sometimes even dressing me as I was so weak.  I was treated like I was a worthless junky at both Port Huron Hospital and ESPECIALLY St. Joeseph Mercy Hospital.  I had followed my doctors advice and followed my pain contact to the T.  Never doctor shopping, not even filling scripts for pain meds when I had a tooth infection & then had it pulled. 

I'm not a "have a pity party for me" type of person.  But the way those "Health  Professionals" spoke to my husband, my 11yr old son, and myself after they took me to the ER~ per the instructions of a local specialist ~cemented in my heart how cold and heartless our Health Care system really is.  It's all about money, if you have it you are a "good" person.  If not then oh well. 

I worked hard since I was 15 paying my taxes, doing the "right" thing as my husband did too.  Then I get to stand in my doctor office watching nonenglish speaking immigrants getting all the tests, pg care, child care and medical care for FREE.  And I have to fork over the cash to pay for my appointment.   We aren't living the "American Dream" THEY are.  We are just paying for it in more ways than one.    
                    ~Dawn

Post Edited By Moderator (Screaming Eagle) : 4/2/2013 3:21:17 PM (GMT-6)

Hello Dawn and welcome to HW. Sorry you had to suffer with W/Ds and yes methadone is a wonderful med for pain but it takes a really long time to get off of it and cold turkey is very dangerous and no Drs should have done that. There were of course options I guess no one told you about such as the clinic as even that would have been perferrable to going flat out with nothing.

In many states primary care Drs are not allowed to prescribe methadone for anyone without a special certificate to do so. Many more states wont allow prescribing methadone for addiction by anyone that is not certified to do so. This may have happened there.

I have been on methadone for CP now for 10 years and luckily have not had any problems other then what normally is happening here in FL with all narcotics.

Dont blame the drug as it has saved the lives of many,it is the system that failed you. It would not have mattered what narcotic you had been on with that high of a dose you were going to have alot of problems going cold turkey. It was an extremely high dose of med that you were on for pain and those doses are generally reserved for heroin addiction,so again I say the Dr and the system failed you in the first place by allowing your dose to get to that level.

Welcome and I hope you find a Dr that can help you.

Vickie

Vicky,

I completely agree with you~ Methadone was honestly a life changing medicine for me. It allowed me to have a life with my family, my child, I could even roller-blade & take my beautiful dogs for walks. I was able to keep weight on~ something I had been unable to do since the gastric bypass. I finally felt as though I could live. It only helped me to numb myself over the last couple of years...I'm sure my high dose had played a part in that & my past was something I wanted to numb.

I also agree that it was the system that failed me...not the med. Had I been helped by a knowledgeable physician I am quite sure that my dose would have never gotten that high. Maybe then I would have been able to get help from another physician when I needed it. My dose freaked everyone out and I hadn't a clue it was extreme until I went through this. I tried each and every avenue to get help way before I even ran out of my Methadone. Called every pain management doctor within 100 miles. The word Methadone shut every door I tried to open~including the walk in clinics and the pain clinics. I ended up in the psych ward of our local hospital~they gave me 1 tablet of acetaminophen/hydrocodone 500 mg-5 mg when I could make it down to the nurses station to ask for it or 1 tab of .05 of Ativan q 12hrs. No clonidine which I learned here afterwards could help with the restless legs and arms. I was so weak that I couldn't even dress myself as I lost weight quickly. I could not even fathom walking all the way to the nurses station or the dining room. I could have died and not one person on that floor would have had a clue~not once did they check on me or ask me if I was okay. Although I couldn't get up I couldn't sleep either~ for at least 10 days~I lost track after that. I shared a room with two others, one was mentally unstable and the other had attempted suicide by jumping in the ice cold St Clair river. She actually was so so sweet and so young. Anyway, I ended up there out of my Mom's & husband's desperation to help me. They sent me home with 5 days of the meds that I described above. Of course after being on 260mgs of Methadone they had zero effect on me.

In a perfect world I would have found that one doctor who cared and that person would have gradually lowered my Methadone dose to a therapeutic level and I would not have had to go through what I did. My grandpa passed away during all this~I was close with him all of my life and I couldn't even make it to his funeral. I wouldn't be ready to cry trying not to think about the pain I am in right now just sitting here. I would still be able to physically do the things a Mom and a wife are supposed to do like walk down and up the stairs to do laundry or get bread out of the freezer. I can't even get down there to feed my dogs or take them outside. My fingers are numb, my balance is way off, I can't hold onto things~yesterday I attempted to clip my fingernails, it took me an hour because I dropped the clippers so many times. And when I did hold onto them I couldn't control them to do what I wanted them to do. So yeah, Methadone was my saving grace.

Even if I were to now find a pain management doctor willing to put me back on a therapeutic dose I'm not sure what I would do. The stigma of the Methadone in my ignorant community scares me. Even my family~ my own mother thought I was on Crystal Meth even though I explained everything to everyone. My family has begged me not to go back on it including my son. I have a hard time understanding why...I was so much better in every way~mood, appetite, physical abilities. My only explanation is the word "Methadone". My husband told me that when he mentioned that I was on Methadone for chronic pain to any of the health professionals in St. Clair County where I live, their total demeanor changed. The ignorance in this area is astonishing, they didn't hear chronic pain~they heard Heroin addict.

Thank you so much for your letter. It helps me to talk to others who actually understand what I am going through. I think my family thinks I have the pain of a small bruise or something. If only hah? Thanks again I wish you well. ~Dawn[/3

I understand far more then you would ever know Dawn. I too lived in a little country town in KY and like you said the stigma was crazy. My family responded pretty much the same way yours did until finally I just stoped telling them anything about anything. They couldnt understand my pain therefore they couldnt understand my treatments and believe me when I say there are many here that experience the same from family and friends.

When I came here way back when I then realized the stigma was not the methadone itself it was chronic pain and all opiates used to treat us. If folks cant "see" the pain or some reason for it then it isnt there. Most everyone here has had experiences with Pharmacy's or their employess,hospitals,Drs that are not the prescribing one,etc,and their weird looks and or rude comments. Its just the way the media and all the "war on drugs" folks wanted it to be when they started all this way back with Oxy-c and Pharma=Purdue and the Drs that jumped on that bad wagon. That war is still raging and we as CPers are still paying.

I would like to say that your story astounds me but I and others here have heard it before. Go to the top and do a search on w/d and I imagine you will find those very stories where we have helped those like you get through those horrible days and weeks after they have lost their meds for whatever reasons and some by the very Drs that got them on them.

Its scary to think about but all of us have at one time or another and most especially with all the ever changing narcotic laws of late. Any one of us could find ourselves in your shoes.

I dont have any answers about how to change the minds and attitudes of those small minded people who believe all that they hear and those that preach the evils of the very meds that allow us to live with some measure of dignity and quality to our lives. We didnt chose this road but we have made the best of it and no more then all of them would do if given any of our lives filled with pain one day.

Im glad your here and hope you one day find a compassionate Dr and many of us here have those,the search for some of us was long and curvy but eventually most of us got lucky. Yes we live by contracts and yes we have to keep trying all that we are offered to add to or enhance the benefits of our meds and yes we are stigmatized for just that but we carry on and come here to help others who are new or have questions and need advice and answers from our experiences.

You have alot you can offer many as well and this road isnt as bumpy with someone who knows and understands those pot holes.

Looking forward to sharing more with you and hearing more about your journey.

Vickie

Hi and welcome. I'm happy you are here to joi us, but sad you are in pain.

I cannot say I am off of meds, but I did have a SCS (spinal cord stimulator) implanted. It is an option you may want to consider (with insurance though) because it is quite expensive. Anyway, it helps with the pain without the need of meds and strangely, having one implanted has changed the doctor's perceptions of my pain (at least it seems so to me).

Perception is such a relative thing when it comes to pain. I had one sister who didn't judge too much (like everyone else did) and. Ow the poor thing is following in my footsteps (w/some additional things too). She's still resistant to many meds, but has started with the esi's and things like that.

Anyway, I hope today will be a better day for you in you pain journey.

All my best!

Vicky,


Your last reply to me felt like I had just been relieved of my silence...I just cried and cried because you understood how I felt about everything. I'm crying now & really I've always tried to tuck my emotions behind a locked door. I've always felt like my family and friends thought I was full of shi*t~that I was lying about how much pain I was in. It's been proven to me that I was 100% correct about their thoughts and feelings regarding my pain. I am trying so hard to ignore it. I am trying so hard to not get angry at everyone. I am trying not to be resentful towards them for begging me to stay off of my pain meds. My husband handed me two chew-able multi-vitamins today and told me that they would replace the opiods that I had been on. He believed what he was saying!! I looked at him shocked and thought am I crazy? Did he really just say that?

I've laid in this bed for so long it is now my prison. I'd rather be dead than to live like this. No exaggeration. Out of whatever~desperation, hope~ I take the tylenol, even the motrin that I'm not supposed to because of the gastric bypass. I know I shouldn't take as much of it that I do but I just want to live my life in a normal way. I can't step out of the bathtub w/out my spine feeling as though it had been just used as an accordion.

I'm sorry for complaining so much. I really just wanted to thank you. I feel like at least you all know...I just wish the people who claim to LOVE me could really believe me and understand. I've never given them any reason to think I am a dishonest person about anything. Thanks again Vicky~ I hate the thought that you have been in my shoes like a lot of other wonderful people on this board. ~Dawn

You are never alone here. We do understand and we have almost all been treated poorly by some idiot doctor due to our chronic pain or weight (either too much or too little). My "second opinion PM visit" went so poorly that I came home in tears and having a panic attack. He was awful and told me I was fat (needed to loose so much weight that I would have literally been left weighing less than 50 lbs) and assured me that I was never a candidate for an SCS (which I have successfully had installed and am proud to say is doing a great job)' & then told me I was on way too much medicine, but suggested upping my mscontin to 8 hour coverage instead of the 12 I was on and implanting a pain pump in the future (for what meds I have no idea). I even had to do a comprehensive urine drug screen to see him after I told him he was only for second opinion with the approval of my PM, who had just done a comprehensive drug screen one week prior. He was never even going to give me meds in the first place. He was to send a report to my PM, which he did, containing the same junk I just

Welcome and I am sorry you have been through so much. Unfornunately our health care system does have some holes in it. There has been so much negative publicity about Pain care until it has a bad name. There are some Drs who will write any and everything and some people will get hooked. There are abusers out there, and it makes it tough for us that need it.

I had someone tell me early on that if you needed the pain meds they did not make you high. In your case your body was still dependent and you had the withdrawals. I take ms contin and get looks from people because of it. I tell very few people anything about my condition or my meds because they do not understand. Someone must walk in our shoes to know how things are.

There are many things we can do to help ourselves. A good attitude is a must in dealing with our pain, however some days its hard to have one. Low impact exercise, heat, otc supplements, massage, and other things help as well as the pain meds.


Hopefully, you can find a Dr. who can and will help you before long. In the meantime, hang in there and I truely hope things get better for you.

Don't let anyone make you feel bad about needing meds for your condition.