~~~~~This post is long! I'm so sorry, but I needed to vent big time~~~~~
(There are several questions at the bottom of the post that I need some answers for....please!!)
I'm new here - Hello everyone! Came across the website this evening while I was surfing the web for help. I decided to register with this site and post a message to all the chronic pain people on the forums.
I've dealt with chronic pain since around spring 2007. Previously in May of 2006 I had fallen down the stairs and screwed up my right knee pretty bad. I ended up having 3 surgeries on it, but ultimately the knee just needed to be replaced. So I was dealing with horrible pain in my right knee with every step I took and when I rested it just throbbed. However, around spring of '07 I started feeling super weak and fatigued and ached all over like the flu. My primary dr did some testing but everything came back negative or normal, so he didnít do anything else. At that time I was getting the symptoms 3x a month or so and I would end up calling in sick from work saying I had the flu, but then maybe a day or two later I would feel fine. So must not be the flu, right? Man, I felt like a total liar when it kept happening over and over and I would call into work. Geesh, how many times can a person get the flu? Ok, fast forward to June 2008, I finally have the knee replacement surgery and it is a downright horrible experience. Briefly, the day after surgery major problems happened between my pump, leg block, oral meds, and the nursing staff where I ended up with absolutely NO pain relief for about 4 hours. I was screaming, cussing, delirious, kept passing out, was begging the nurses to get a dr and they wouldnít - kept telling me there was nothing they could do. I was a total nutcase and had out of this world pain - felt like my leg was being sawed in half - oh wait, they did that the day before!!!! Anyway, it was just a horrible experience. No one would listen to me, my mom, or my husband. I even ended up biting my husbands hand when he reached over my face to push my hair out of my eyes....I was even begging him to take me home, just pick me up and take me out of this place!! Finally, the anesthesiologist stopped by to check on me and he got an earful from my mom - she was fit to be tied - OH yeah the nurses did get approval to put valium in my IV at one point. So when the anesthesiologist stopped by, I was passed out totally. Well, according to my mom, the dr ripped the nurses a new one and checked the leg block (which had been turned OFF!!!), and got the pump working again, then got the nurses to give me oral meds. Apparently the nurses read my chart wrong and refused to give me oral meds, one of them turned my leg block off, and they wouldnít look into why the pump wasnít working. So.....4 hours without and pain relief. To this day I have major anxiety walking into any hospital. I never, ever want to be in that helpless of a situation. Ok, moving on....
When I got out of hospital, I ached so bad and was so fatigued and weak that I cancelled over half of my PT appts. So, my knee was never properly rehabilitated after the surgery and I still have horrible pain to this day. Previously I had achiness like the flu about 3x a month, well - now it was every single day. It was so horrible and I didnít understand it at all. Fast forward to September: I still was not completely back to work yet, I would only make it an hour or so then go back home and go to bed. So, my employer laid me off saying they wanted to reorganize or whatever. Oh well, so be it. That is the last day I ever worked! I was still aching horribly every day. Well, finally, in November 2008 I get an official diagnoses of Fibromyalgia, but I just was not settled or content with that diagnoses. I thought it had to be something else and kept going from dr to dr and getting test after test done - nothing resulted in a diff diagnoses.
After 4 surgeries on my right knee, my left knee was worn out carrying the burden....so it now needs replaced. But there is NO Way in hell that I am going through that surgery, there is no way I could do it! So, for now, I get by on pain meds for the knees - but its now my entire legs from my hips to my ankles that hurt so bad, then the knees are excruitiatingly painful - and also for fibro.
Now, I am finally at the point where all the problems with the dr's begin! I've been to dr after dr for pain management and keep getting the runaround. I am so frustrated and depressed that I cannot seem to find a PM that is willing to LISTEN to me and work with me. I know they are scared of the DEA and having their license yanked, but c'mon....I need pain relief. I have xrays, test results, blood work, and all my medical records that I take to new dr's. I follow what they say and am terrified to speak up or against them, or not agree with them for fear that they will just yell at me (itís happened!) or dismiss me from their practice (itís happened!).
Today I went to my PM (60 miles away) full of anxiety and dread because I knew I needed to speak up and ask for more Norco for BT meds. Ok, a little history.....since the TKR June '08, I was on Norco 7.5mg up to 6 pills a day and that relieved most of my pain, except not when I had a flare (which seemed to be every other week). My primary made me come in every 2 weeks to get a new presc and I was so frustrated with this and felt he was just padding his pocket and I was basically paying his mortgage bill! So, after about 8 years with him, I went to another practice and they took over pain mgmt for me. There were several dr's in the practice that I would see and for awhile everything seemed ok, only had to go in 1x month. But then....I went to this newer dr there and she decides I'm an addict and abruptly reduces my Norco and says I need to get off it. What? Every appt I went round and round with her and tried to avoid getting appt's with her. I gave her no reason to think I was abusing the meds, I never ran out early, etc. Well, after about 3 mths of harassment from her, I decide to Google her name - OMG, she was under a probationary license for...guess what?....writing 34 presc for her husband who was also getting A LOT of prescriptions from 4 diff ER dr's. Hmmm, coincidence?? The next time I had to get a refill, I scheduled with one of the founding dr's and tried to explain to him what I found out and what she was putting me through, he was sympathetic and increased my Norco to what it used to be and sd sorry, blah, blah and I thought everything was okay. But within 2 - 3 months I receive a certified letter that "after careful consideration we dr's think you should go elsewhere...Now!". Fine, whatever, great! I then go to the Pain clinic here in town and had an even worse experience with a "pain" expert - yeah right. He started off the appt that he would not be addressing my legs and knees, just the fibro. What? He sd narcotics are not to be prescribed for fibro, period. He even got in my face and yelled at me saying "where is your research that supports narcotics for fibro? You have none and I have plenty". Total dick! Sorry, but he was! He was only willing to start out conservatively on anti-depressants. He was not willing to review the meds and procedures I had already tried. Arrogant SOB!! For over half the appt I was bawling my eyes out, my husband was just flabbergasted with how he was talking to us! Ugh! I then find another primary dr that was willing to prescribe the Norco, but at a reduced amount. Then last summer I was in a Pain support group and a fellow classmate told me about her dr in another town that was "really good". So I make an appt with him and travel the 60 miles to his office. The dr isnít much up on chatting about anything and only wanted to look at my medical records. I did inform him about the Norco and he decides to switch me to "morphine" and I thought "oh wow, he is going to do something about my pain, Thank God almighty!!". Since I had had morphine in the hospital and knew how good it relieved pain, I was all for the switch. However, he didnít mention that it was Embeda, nor that it contained naltroxene, of which I knew nothing about (but now do and it sucks). I did ask for BT meds and he gave me 30 Norco at 5mg to take 1x a day. What? I didnít even think about abruptly stopping Norco and starting the morphine without titrating down. But I tried it - OMG, horrible, horrrrrrrrible pain!! And withdraws I think. It was so awful. I called his office numerous times and the nurse would only say "you need to take your meds as prescribed", and I would say "but I'm in so much pain" and she would say "then go to the ER!". I ended up taking the Norco to get relief from the pain, but of course ran out to soon. Switching me like he did should have been my first clue that this dr isnít "really good". It took about 3 weeks to adjust to Embeda and then it only helped with the fibro flares (I donít think I've had a severe one since then), but it does not help with my legs or knees or the general achiness I have everyday that the Norco helped with SO MUCH!! Norco helped with all my problems and I just cannot get any dr to listen to me. Now....back to today: I go to my appt and I'm just full of anxiety, my husband came with me too. Earlier in January I had an outpatient procedure done to remove my thumb nails (long story, wont go into it...but OUCH!!) and the dr prescribed Norco 10/325's and had put Demerol in the IV. I took the Norco as prescribed and felt so much pain relief, I was in heaven. This is what normal feels like. So, today, I tell my PM about having that extra Norco and how much better I felt and my quality of life was much better and I was more active, except for using my hands/thumbs. He only said it was too much, I was already at the maximum of pain relief I could get, and he is not "going there". I tried to bring it up again that maybe he could increase the 7.5mg Norco to 4 pills a day and he sternly sd "I will not do it, case closed. There is too much potential for abuse and addiction and I will not do it". I brought up my leg pain and knees and told him I was being tested for P.A.D next week, he didnít care. He said "I dont understand why you say the Embeda doesn't work for your legs and knees when it works the same as hydrocodone - they both work on the morpho (?) receptor after they breakdown". I started bawling and bawling, I was so confused, and he was not willing to budge. He did ask if I ever brought in xrays and I sd "yes, at my first appt" and he asked me to get updated ones. I felt like he didnít even listen to me at all. I was so horribly depressed leaving his office and my poor husband also became depressed. Later he sd he is so tired of seeing me cry and he canít reach out and fix the problems with me. He is so tired of seeing me in pain day after day, month after month.
So, I am once again going to look for a new PM. If any of you have advice for me, please reply or email me.
Also, as far as being at the maximum pain relief I can get - I think he was feeding me BS! I donít think 50mg Embeda 2x day and Norco 7.5mg 1-2 pills per day is the MAXIMUM. I'm NOT stupid. So....what do all of you think? Any of you live in Nebraska and have a good PM?
ALSO...sorry, one more question: does anyone know how narcotics breakdown and do hydrocodone and embeda/morphine break down to work on the same receptors to relieve pain?? Can someone explain this to me?
Thank you so much for reading this entire post! I'm so so sorry my post was so very long. I needed to vent and needed someone to talk to and I thought I would reach out to a forum group. Typing all this up felt therapeutic in a way. I know I gave a lot of info about the past 4 years or so, but there is also a lot of stuff that happened that I left out.
Thanks again! I look forward to hearing from some of you! G'nite!
Last edited by dandelion68; 02-13-2011 at 07:01 AM.
Reason: fix title
Hi, dandelion and welcome to the board. I don't know anything about knee problems as I am a back patient but I just had to respond to your post. I'm so sorry for all you have been through.
Doctors are becoming more and more reluctant to write prescriptions for narcotics, thanks to our friends at the DEA and FDA. Because drug usage has become so rampant in this country, lots and lots of doctors eye us with suspicion.
One thing that alerts them is going from doctor to doctor....not implying that we don't have the right to shop for a doctor who is willing to help and listen....; but it does make them nervous. And somehow, asking for a particular medication and/or dosage really sends up the red flags. It's real shame, but that's what is going on these days all over the country. And the real victims are US....chronic pain patients who truly need these meds if we are to have any quality of life.
You also had some very bad nursing care when you had your tkr and that's enough to sour anyone on hospitals, but they aren't all alike. I would not suffer with bad knees; I would research the local hospitals, ask people about their experiences with them, and then find a dr. who practices at that particular hospital. The thing is, you will need to be careful if and when you find the next doctor....just give him your medical records and then answer his questions, etc. Don't ask for a medication by name; if he asks what you have been on in the past that you found helpful, then you can tell him what works best for you. If he suggests an alternative medication, I would go along with it and then report back at the next appt. It's hard to keep your composure with so much going on sometimes, but I have found most doctors get flustered or angry when a patient is emotional.
I really do hope you find someone really good very soon. The board is a bit quiet over the weekend so don't get discouraged if you don't get a lot of replies the next couple of days. There are a lot of people here who can give you much more insight and help than I can.
Lumbar surgery x 7 over the last 30 years.
cervical fusion...2 levels
medtronic pain pump implanted
Last surgery Oct, 2010, 3 levels
The Following User Says Thank You to maltluver For This Useful Post: mgm55 (02-24-2011)
dadelion68, also gabapentin is ok for fibromyaliga(spelling).
Have you tried Tramadol Extended Release?. It is considered half narcotic and your primary care doctor will be happy to rx you that. You take one pill(start with the lowest dose)and it works 24/7. I suffer tremendously and it really helped me. Problem was: I could not sleep at all. It was like drinking few cups of coffee. BUT that does not mean it will not help you. Everyone is different. I might be sensitive to tramadol.
So that is one option. If I was you I will opt for the gabapentin which is cheap and the tramadol extended release. At least you can tell yourself "I tried. THey say tramdol extended release is for moderate pain. THat is not true. I have severe pain and it helped me big time. So it worth to try.
Let me know how you are doing on both meds.
There is also the fentanyl patch. I guess doctors prefer that option nowdays.
Most PM doctors will insist you abide by the prescription and dosages they give you unless you have an adverse reaction such as allergy to the medication.
At each visit if a medication isn't working for me I ask for any generic alternative as I can't afford Opana ER any more. I've gradually moved up to MS Contin with Percocet 2x/day for breakthrough with Neurontin and Soma.
If possible can you continue with the PM Doc you are seeing. Too much moving around and accepting prescriptions, and then moving on, will work against you in seeking pain management. PM docs can run a pharmacy DEA report and if they see a series of pain docs in the last year they will be very suspicious.
If possible can you continue with the PM Doc you are seeing. Too much moving around and accepting prescriptions, and then moving on, will work against you in seeking pain management. PM docs can run a pharmacy DEA report and if they see a series of pain docs in the last year they will be very suspicious.
I agree wholeheartedly with this statement. Right now you have a Doctor that is willing to work with you (and I think you said he's allowing you 1-2 Norcos a day) for breakthrough pain (in addition to your LA pain medication). The problem with moving around too much, is you could get into a situation where Doctors are wary to take you on as a patient. It really is a warning sign when Doctors see to much moving from Doctor to Doctor (which unfortunately is known as "Doctor shopping"). Even though that is not your intent, right now the system is so dysfunctional where prescribing narcotic pain medication, that it could appear that way. It doesn't sound like you've been with this Doctor for that long and it might be a situation where he wants you to give the current regiment an opportunity to work and that he will be willing to make adjustments down the road. Can you possibly try adding OTC Acetaminophen-325 or Ibuprofen liquid gels to your breakthrough medication. (If you add Acetaminophen try to watch the amount of you take I know not everyone can take Ibuprofen, but I find the liquid gels quite beneficial and often take one in addition to my Norco when I have breakthrough pain. (I have both knee issues - I had knee surgery on my left knee and back issues, I have had multiple surgeries on my cervical and lumbar spine)
I am sorry about all that you're going through. But, I think sticking with this Doctor a while longer might be the way to go. Once you've been with him longer, you are likely to see him become more willing to make adjustments to your dosage(s).
Thank you for your posts with suggestions. I didnt check email until now. Just to clarify, I have been with this PM since July 2010 and he is the first PM I have received prescriptions from. Previously I was with my primary dr, who relunctantly prescribed the Norco. I did have 1 visit with a different PM January 2010 and that appt was awful and I did not receive any meds from them.
I've been pretty depressed about how the PM appt went and what I am facing with finding a new dr. My current PM was adament that he WILL NOT raise my Norco because of the potential for abuse and addiction. THAT upset me because I'm not getting adequate pain relief that is warranted by my medical history and records BECAUSE of his fear of abuse and addiction. Getting a measly 2 Norco tablets per day is not adequate to help with my severe leg and knee pain. I should not have to suffer because of HIS FEAR! Plus he was not willing to listen to me at all, didnt care what I had to say or what I was trying to explain to him about the pain. I do believe 100% that I am being UNDERtreated by my PM, so I believe I need to seek out another dr. I did read on another post somewhere on this site suggestions for going to a new PM when we are under contract with an old PM and I will seriously use that advice when I go about calling on new PM's.
With all the dr's I have been to in the last 7 years, I am still easily intimidated by them and usually end up stuttering, stammering, and not saying what I intended to say....then sometimes I get emotional. I cannot begin to tell you how many dr's have been a pure waste of time after putting in so much effort to be thorough in explaining what is going on with me. And this isnt just with PM's - I've only been to two and the first one did absolutely nothing for me and wanted to start me out conservatively on anti-depressants.
In my original post I was going to list all the meds and procedures I have tried, but my post was already so long that I decided to leave it out. Anyway, here is the list of meds and procedures: Lyrica - awful side effects - didnt help Flexeril - awful side effects - didnt help Effexor - didnt help w/ pain Cymbalta - didnt help w pain or depression Neurontin/gabatenin - didnt do a thing for me Savella - awful side effects and did nothing for me Tramadol - did nothing Ultracet - did nothing Ultram - experienced seratonin syndrome! Yikes, it was awful! Celebrex - helped a little with knees swelling and inflammation Feldene - dont remember, but didnt stay on it long Oxycontin - after knee surgeries, helped the most Percocet - after knee surgeries, was okay Norco - of all the meds, this one helps the most with leg/knee pain and fibro aches. Vitamin D 50,000/1x month - noticed no difference B-12 shots - noticed no difference with fatigue or achiness
Procedures: Physical Therapy - couldnt take the pain afterwards and if I did pool therapy, then getting out of the pool was torture and very painful on my knees Trigger point massage - this is weird, but this caused severe migraines Chiropractic adjustments - did nothing for achiness Regular massage - felt good, but caused great pain afterwards Accupuncture - developed severe anxiety with the needles Neurofeedback - supposedly she could see pain on the brain waves and a huge amount of anxiety. Always had to work on anxiety before we got to the pain, which never happened. Found another therapist and will start neurofeedback with him this spring. Allergy Shots - to help boost my immune system. Gave it 6 mths and didnt notice anything different. Palliative care - taught ways to deal with the pain while maintaining productivity and work. Dropped out.
Lastly, due to severe depression and the hope that it could help with fibro nerve impulses - had 11 ECT treatments done. - completely, 100% awful and the worst thing I could have done. Pain was magnified horribly, had bad headaches and nausea, became even more depressed b/c of horrible pain!
Ok, so what regimen am I on now? What I have found WORKS for me is the following: Embeda 50mg 2x/day (morphine/naltroxene) - this has helped me the most with the fibro flares and achiness, but still have breakthrough achiness. I do not believe I have had a dreaded week long flare that I used to get since I have been on Embeda. I will still get flares, but they only last 1 - 3 days at the most. However, Embeda does NOT help at all with the leg pain and knee pain. This is where the PM was saying he doesnt know why I say that b/c Embeda and Norco breakdown the same and bind to the same receptors. Obviously there is something not right with what he said b/c I do have a lot of pain still.
Skelaxin 800mg - up to 3x/day - this is the best muscle relaxant that has helped the most for me with very minimal side effects. I dont get all loopy and weird like I did on flexeril.
Norco 7.5mg - Norco has been the only thing that has helped with my legs and knees the last 4 or 5 years. It has been hell getting through to dr's about this - they just see the fibro dx and think they can throw an anti-depressant at it, have me wait 4 - 6 weeks to see if it will work, and all will be well. The PM only gives me 2 pills per day for BT and will not budge. He did ask for updated xrays so I will get that done asap. The dosage that I need is 4 - 6 pills per day to get through the day on my legs/knees. Otherwise I am stuck on the couch or in bed b/c the pain is horrible.
I also take Advil 200mg 4 pills/3x day and this really helps with some of the pain. When I have had to stop it b/c of surgeries, I really notice the difference.
Ok, if any of you fellow posters have any suggestions for me I would really appreciate it. I'm so tired of going to dr's and wasting both our times when I know what works for me. A previous post suggested I NOT tell a dr what med's work for me b/c it will look bad. But I've tried all the "safe" drugs I can and they simply do not work. How do I talk to my PM about that? I guess another reason I stick with the Norco is b/c I know it works and it is affordable. These new medications have a really high copay that I simply cannot afford to waste money on. Tricky situation huh? I'm so tired!
Thank you all so much!
Last edited by dandelion68; 02-13-2011 at 06:52 AM.
Reason: Added information
Ok, ok....I picked the wrong title! Sorry to be misleading!!
I just realized the Title I chose for my post is very misleading. That is probably why you all are thinking I am doctor hopping and shopping....nope. I should have chose something else for my Title like "How to deal with PM?" or something along those lines. When I originally posted the first post, I thought I had no choice but to find another PM to work with me b/c my current PM was very adamant that I'm already receiving the Maximum doses of pain meds, which I find is udder BS!! I'm not stupid!
just reading your post- you have tried lots of meds havent you (that did not help).. i have peripheral neuropathy in my legs and feet along with multiple cervical and lumbar spine issues, depression/dysthymia -anxiety- and sleep disorder & more.
i was on flexeril for a number of years (muscle relaxer). it made me very drowsy even after all the time i took it, then it got to where it didnt seem to help anymore. my pm dr changed my mr to parafon forte 500 dsc, and i have no loopiness or drowsiness with it. i have been taking gabapentin(neurontin) for over a year now (currently 200 mg 2 x day and 300 mg at bedtime). dr tried 300mg 3 x a day, but my system can not handle it- makes me basically functionless as i have severe dizziness with the 300 mg & i can't even walk thru my home without staggering and falling.
if you have nerve damage anywhere, trying to calm the pain can be trying. even with the gabapentin (neurontin), muscle relaxers, and antidepressent/antianxiety meds, i still have leg & foot pain. the only thing that eases it off is pain meds, which i can not function on due to side effects (drowsy & dizzy). standing in one spot and walking for more than a very short distance, my feet and legs hurt. i can not walk a straight line with or without meds. hubby says i stagger really bad. for the nerve pain in my neck due to herniated disc etc, i use Lidoderm patches. that helps if i put one on as soon as the pain starts and i have to just sit or lay down and relax & keep my neck inline with thoracic spine.only thing with lidoderm, you can only use them 12 out of 24 hours. there is also patch called Flector patch, it has an anti-inflammatory "diclofenac" in them. you can use these 24 hours, but each patch has to be changed after 12 hours, and you can use up to 3 patches on your body at one time. there is also a diclofenac gel called "voltaren gel" that you rub into pain spots. it works wonders on my foot pain, stops it quickly. diclofenac is not addictive in any form, also available in pill form. however any anti-inflammatory taken for too long of time or in high dosages does have health risk.
you mentioned you take advil (ibuprofen) which has an anti-inflammatory med in it. and on your med list i did not notice any anti-inflammatory med to have been tried before. so, maybe you need to discuss that with your dr, your primary, pain or neurologist can prescribe them and will not bark about it either since they are not addictive. there are a number of anti-inflammatory scripts out there, including prescription ibuprofen (stronger dosage than what you can buy otc), naproxen, diclofenac, relafen. i started with naproxen/naprosyn pill, then diclofenac pill, relafen pill, and now back on naproxen. but since i use the flector patches & the voltaren (both have diclofenac) in them, i avoid taking the naproxen pill as much as possible (you can overdose even with some going thru skin -patch and gel & taking a pill). to me the patch and gel ease the pain quicker than the pill does, plus less of the med gets to your bloodstream since it is absorbed mostly by the skin/muscles etc.. only thing about the patches, when you first touch them to your skin, they are like ice (cold), but after a few minutes the cold goes away.
copay can be high on the patches and gel. but you can do a web search for flector patch and lidoderm patch and get coupons to save yourself a lot of money. again, discuss the mentioned options with your pain dr, and most will even give you samples of the patches to try before coughing out the money at the pharmacy. where i live, you have to get these from pain management dr, neuro or ortho even though they are not narcotics.. keep us posted...
Hi, I'm Kat and I am a fellow "knee-lifer". I have a Degenerative Cartiledge Disease in both knees with severe post development osteoarthritis in my knee, ankle and wrist joints. I have had 13 surgeries on both knees, starting with cartiledge tear repairs and debridement, then patellar realignments, more repairs and debredements, microfracture of underside of knee caps to create arterial cartiledge infusion and last was Knee reconstruction with Tibia Tubercle Ostiotomy, which is were they went in and severed the tibia and all connective tendons, muscles and tissues. Raised the tibia by an inch, inserted donor bone and screwed it all back together again. This gave me 12 months worth of relief, it was done 2 yrs ago. Currently I have only 15% cartiledge in my left knee and 22% in my right. I need TKR's, but am only 42 and will have to have multiple ones, since they don't last very longs. My ortho and I are trying to put it off as long as possible, hoping that the technology will increase. I've been on serious pain management meds for the past 7 to 8 yrs. My current regimen is MSContin 45mg twice a day, Percocet 10/325 up to six a day PRN, Voltaren Gel, Lidoderm patches, and 1600mg of Ibuprophen a day. Knee pain is one of the most painful and hard to treat ailments of the human body. And the bad thing is there aren't many additional therapies such as blocks and trigger point injections, etc. There are steroid injections, have you ever tried this?
It does sound like you are at a standoff with your current doc....but the others have a point also, if you move around too many times, it will come back to bite you, so to speak. Technically this is your 3rd doc, even though the 2nd one didn't prescribe and you only saw them once, not to mention all of your ortho surgeons....if you get a new PM doc it will be your 4th....that's considered alot, unfortunately. If you are deadset on changing docs, then you really need to do your research and try to find a good one that you can stick with, I know, easier said than done. One research tool that folks often fail to use is your pharmacist, they can give you recommendations based on scripts they fill, of well known docs in the area.
The other thing you really need to consider is foregoing treatment/surgery, based on a previous bad experience...and I agree it sounds like a horrid experience. But not all hospitals/nurses/surgeons are the same and in these days of pick and choose you can do research and find a good team to take care of you...just something to think of.
Please keep in touch and let us know how you are doing, and what you decide to do.
I just read your initial post and I feel completely enraged right now! What a bunch of horse $$$$ you've been through!! How dare so many doctors treat you the way that they did. UGH!!!
Unless there's something major you're leaving out...like a history of drug abuse or constantly running out early, I'm 100% on your side.
PM in Massachusetts has become a joke. I went to 3 different PM centers this past summer, 1 of which I was a part of years ago, and none of them are willing to do medication management anymore. In fact, all the PM centers in the state have basically closed or changed their methods entirely because of "fakers" ruining things for the real chronic pain sufferers. Of course none of these 3 places bothered to tell me this before I went to my appointments and wasted tons of gas, money, and caused major back pain to myself from all the unnecessary sitting in my car. I ended up back with my primary doctor and getting my pain relief that way. I take six 15mg oxy's a day and my quality of life is finally back to what it was before I decided to stop taking pain meds for almost 2 years. (just wanted to stop, was way too juiced up on oxycodone years ago and needed to to detox and find out what my pain level really was, and if I could deal...unfortunately I dealt with it with lots of beer and vodka for those 2 years, and I hate drinking) Luckily my primary is the nicest man in the world, has known me for 20 years, and has a back problem of his own to some extent. If it wasn't for him I would have been S.O.L. as far as finding a new primary local to me, or a PM center willing to even dispense anything at all. That's how bad everything has become. We get treated like $$$$ because of the abusers and people who sell their bottles for extra income. Granted what I found out/went through is NOTHING compared to your story, but just wanted to say I do understand how hard it must be for you to find some pain relief.
One thing that really bugs my is how doctors have told you about the potential for abuse / becoming addicted. DUH!!!!!!! Legal opiates are basically legal heroin, it does the same thing, gives the same type of relief/high at the beginning, and kicks your butt with the same withdrawals when you stop taking them. But guess what, we know this...does it matter? It's better than contemplating suicide because no matter what position you're in, you still feel incredible pain, can't sleep, eat, or even think about anything or anyone in your life you love except yourself and your pain. F-em!!! That's what I say. They should try living with these feelings themselves and tell us if they care if they become physically addicted to something that stops them from wanting to hang themselves on an hourly basis!! I hate doctors, I hate the system, and I especially hate the people that have completely screwed up everything for us folks who need pain relief, not the sensation of getting high or making an illegal buck. And by the way, once you're on narcs for a while, you don't get high, you only get pain relief!!! I am so angry you had to go through what you did Dandelion. I hope you can find peace and solace within your own body someday, it's NOT too much to ask. Please god help this woman!!!!
Hugs and support,
Mike from Mass
....and yes I do understand your struggle and wish I could take the pain away myself. Everyone deserves their sanity and some GD respect from these a-holes who think pain is something easy to deal with, or can be dealt with via a minimum dose of norco. Give me a break, those things barely touch severe pain unless you take a handful. They act like you're asking for a bottle of liquid fentanyl or something. What a joke the medical world has become. Gee here's a great idea, we have people really suffering out there, let's treat them like crap and make them feel even worse emotionally, then send them a bill for the privilege of letting us talk down to them.
Normally I don't write with a temper like this but the way you wrote everything really struck a chord. I put myself in your shoes and thought of how I would have reacted to the same situations. Unreal. God bless you for not strangling any of them.
Last edited by MikeMass; 02-14-2011 at 08:17 PM.
The following user gives a hug of support to MikeMass: mgm55 (02-24-2011)
since 2005, i have seen an orthorpaedic pain dr at a large multi- location ortho clinic, a neurosurgeon's in house pain dr, a pain management only dr, and currently (for over a year now) a neurologist/pain mgmt dr at least once per month.. the first 3 only offered epidural injections for treatment option- even after asking was there any other option to injections, they always said NO and at all 3 times, i was only one an anti-inflammatory pill and darvocet n100 and flexeril. they were pain doctors, and should have given med change options or additional meds or topicals, but they only wanted to do what put money in their pockets... which stinks !
my current pain dr is a lot more conservative than any of them. he does acupuncture, all sorts of epidurals, and injections which surely line his pockets. i tried one cervical epi which i got 0 results from, and since then, he has asked if i wanted to try another, but when i remind him of the first one having 0 results, he says you are right- lets look at other options that have not been tried. but i also told him from the get-go and along the way, i do not want a med that is gonna knock me loco. i have enough side effects from my lot of meds without adding more to that. he recently gave me a script for lortab 5 (the next to lowest dosage) to start, and if what he gave me doesnt work, he can increase dose a little at a time until we hit what works to get me to the point of near to or complete relief without it putting me totally out of function or loco..
sometimes he can have a really crap attitude & is way too serious, plus he does not support anyone's ssdi claim (thank god all my other drs support me 100 %). all my other dr's have great attitudes and are more cheerful..i have been asking friends for references on pain dr's & spine dr's they have used. i want to take my last and most current cervical mri cd to at least one other doctor to get their opinion & see if they interpret it the same as my dr does, as far as severity of problems showing up. also to find a pain and or spine dr that will fully support my ssdi claims.
as for myself, having seen several pain dr's over 5 1/2 years, i dont worry of it, because i never "asked" for pain meds in general, and they never issued any because all they had on their brain was "epidural" injections. plus the fact that my rheumatologist had already told me and noted in his records that the epidurals and steroid injections would not help my spinal problems at all and they are very risky as well ..
good luck to you and keep us posted..
I agree with mike here. Sorry to see you suffering here mike and dandelion68.
Mike, why are you taking 6 oxycodone?. It would be better to take one oxycontin I would think so. Or two oxycontin.
It is not a good idea to drink alcohol instead of taking meds.
Sound more like a third world country. Did you know, in third world, like Russia Africa doctors are not allowed to rx narcotics so in order to deal with pain people in Russia for example, drinking Vodka. One way to "deal" with that, is tell your doc you are about to start drinking and go from there;;;I tried it, and it worked.