I'm new to this forum, but after reading quite a bit it seems like a positive support group for those dealing with daily pain. I'm hoping to gain a little more direction after all I've been through, so here goes!
I've had knee pain since I was 10 and had seen numerous doctors until the angel orthopedic I saw when I was 17 properly diagnosed me with a torn meniscus. He corrected it with surgery and I was doing great for 5 years. After that, I had 2 more knee surgeries, the 3rd one resulting in a blood clot in my leg that landed me in the hospital, bed-ridden, for 5 days. I was never able to do physical therapy to rehabilitate my knee since the doctors said it was dangerous to do a lot of movement until the blood clot dissipated. By the time 6 months had passed and the clot dissolved, it was too late to fix the damage done by lack of therapy. So I live with the daily knee pain, cracking, locking up, giving out, etc.
I was also diagnosed with Endometriosis when I was 19 and have had 2 laparoscopic surgeries since, not to mention rounds and rounds of hormone therapy. Yet, the pain keeps returning. I had 3 good years on a birth control pill, but lo and behold I'm back in the same boat and the pain has returned. I am now on Lupron therapy- Again.
My most concerning issue is the bulging discs in my neck and constant pain in my neck and shoulders. I first went to the doctor for my neck in 2010 when I pulled something so bad (trying to scratch my back) that I couldn't turn my head for 2-3 days. I couldn't drive or anything. My primary gave me Vicodin ES, Ibuprofen, and a steroid pack. He also walked me to the chiropractor next door for an emergency visit because he said he could see the swelling on the left side of my neck from the pull.
From that day on, I have battled the pain in my neck and shoulders and now find myself with what seems like nowhere to turn. To give the abridged version, I have been to 2 orthopedics, 2 pain management doctors, and my physical therapist 3 times, each time an 8-10 week ordeal of heat, stretching, massage, exercises, etc. It helped short-term, but the pain always came back. I have had several MRIs of my neck, one of my shoulder, cortisone shots, 2 nerve block injections, and a rhizotomy which was supposed to burn the nerve endings in the neck that lead to the shoulder and arm to stop the pain. I found *some* relief in a few of these procedures but none have worked permanently. In between each doctor, I find myself referred back to my primary saying, "What now?" and he gives me the name of yet ANOTHER doctor to milk me of my insurance and then tell me to be on my merry way.
Needless to say, I have been on so many medications and different combinations it's ridiculous. Each time the doctors have passed me around, the new one always wants to try new meds, so I go along with it. Since I have been on pain meds, muscle relaxers, and anti-inflammatories for so long, I have built up a tolerance. I have told each doctor how the meds work, most of the time saying they're not giving me the same relief they used to. Their usual response is, "If they're not helping, stop taking them. You're too young to be on narcotics anyway." Ok.
The problem now is this- because of all the medication changes, I am now having a hard time with the pharmacy. The pharmacist was nice and explained that the state is cracking down on narcotics prescriptions and that she would fill my script (called in by the gyno for the endo flareup I was having) for Vicodin, but that I should be careful and make sure I'm getting pain meds from only one doctor. I asked if I could speak to her privately, and she was nice enough to take me to a little office-style area. I explained my whole history (everything I typed here) to her and said that maybe I should stop the pain meds for a while so if I have another surgery or was injured, a lower dose would work better. She agreed and suggested I get a script from the most recent doctor who prescribed to taper off. Well, I asked the gyno as she recommended and he wrote the script as a regular "as-needed" dose, rather than a "tapering" dose. The pharmacist (a different one than the one I spoke to) called the doctor, told him I had too many meds already, and the doc voided the script. I explained to the new pharmacist what happened, but he didn't seem to care.
I explained this, the next day, to my primary. I said I'd like to taper off because 1.) The meds won't be as effective if I do end up with another surgery, and 2.) I do NOT want to be in trouble with the pharmacy/state. I told him the gyno didn't listen to what I said, told him about my talk w/the pharmacist, and then he called the pharmacy directly. Wouldn't you know while I was in the room, the pharmacist that I spoke with told the doc that I had pain scripts from other doctors. My doctor said, "Ok, I'll talk to her about it." I explained to him again how I had seen all the doctors HE sent me to, was treated for a period of time, then passed along to the next guy. I wrote EVERY medication I was taking on EVERY patient info form at EVERY new doctor, but I'm the one who is now in trouble. He asked me if I got sick if I stopped taking the pain meds, and I said, "No, just a little uncomfortable for a day or so." He said, "Then you're not addicted, so just stop taking them." and left me with some Flexeril and nowhere to turn.
I have since spoken with him in person, apologized if I made a mistake, and said that I never did anything with my medication intentionally. I told him also when I saw him the second time that it had been a month since taking any narcotic painkillers, and that I felt the pain in my neck and shoulders worse than ever before. If I thought the meds weren't helping, now I know how much they in fact were, even if it wasn't the right dose. I had no withdrawal symptoms, but now I'm just left in constant pain. I can't sleep, and daily life is hard to get through with constant, sharp, throbbing pain. I've gotten a new mattress, orthopedic pillow, tried every OTC medication there is, etc. I understand the doctors' need to protect their patients and their own licenses with the DEA cracking down, but I feel like I've been left in the cold still suffering.
"What now?" as I usually say. I'm afraid to get another opinion for fear of the pharmacy or my primary thinking I'm just looking for pain meds, even though I have so many reports and diagnoses to show my conditions. I've never done anything illegal in my life aside from a parking ticket, and I'm scared to death. I feel like I can't voice how strong my pain really is due to this situation, not to mention my age of 27. Any suggestions would be SO appreciated! I know I can't be the only one this has happened to
Re: New to Healthboards- Not Sure Where to Turn...
I'll get right to the point, from your description of your medical conditions, and the various treatments, it appears that you have gotten various prescriptions for different pain medications from different sources- PM doctors, your Gyn, and your GP, are just a few that I recall you mentioning. In the current world view of opiates and all of the negative publicity that has been the current trend and point of view on opiates due to misuse by people who have gotten ahold of them, any inkling of impropriety on our parts is quickly scrutinized, rightly or wrongly...no matter how many medical conditions you have, no matter how painful they are, your pain medications should only be prescribed by one doctor- either your GP or preferably a pain management doctor. Even your gyn condition , if it is being treated using opiate pain relievers, should at the very least be overseen by a pain management doctor, because otherwise, you have left the pharmacy and now I'm pretty sure the doctors that you see or have seen with the impression, as wrong as it may be, that you are doctor shopping for pain medications.
Most PM doctors and even those GP's that oversee pain medication management these days are requiring a contract , part of which states that you will only recieve pain medications through their office/doctor- for anything other than a true medical emergency- ie broken bone, or other trauma type of emergency and even in those situations some doctors require immediate notification or as soon as the office opens and may not let you fill a prescription from a dentist or ER doctor if it is a pain medication. Many states have a prescription monitoring system in place, that shows when and where you recieved any pain medication prescriptions, the quantity, when and where it was last filled, and how many doctors you are getting them from.
The pharmacist is required by law to contact your doctors that are prescribing those type of meds to you to notify them of the multiple scripts from different doctors.
Since you said that you didn't experience much in the way of withdrawal, it might be time to investigate other methods of pain control, ice, heat, massage, TENS units, analgesic rubs, other medications that do help to ease pain such as Cymbalta, Lyrica, Neurontin, etc, muscle relaxants, and see if you can find some adequate relief through those things...PT , yoga and swimming also may offer some relief..
I'm sorry that you are in this position but it seems that the pharmacist became concerned after seeing different prescriptions coming from different doctors for pain medications and red flagged you or for that matter it may have been the prescription monitoring system in your state.
Talk to your GP and ask him for another referral to another PM doctor and start there, and see what other modalities he can offer you.
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Re: New to Healthboards- Not Sure Where to Turn...
waters, thank you for your support and response. I definitely wish you luck managing your pain!
backhurtz, thank you also for your advice. I have tried almost all of the methods you mentioned, such as ice, heat, TENS unit, massage, and even some of the meds such as Cymbalta. I am open to trying anything new that may help. I was wondering about a procedure called P-Stim which a friend of mine mentioned. It is supposed to be similar to acupuncture. Have you heard of it/tried it? I haven't come across anyone who went through it to see how it worked for them.
I also agree 100% about the medication coming from one doctor, and how the pharmacy responded is understandable. Each doctor I've consulted I have informed of my medications when I began seeing them, and have also called former doctors to let them know that so-and-so was switching my meds. The problem has been finding a doctor willing to treat me long-term, or at least until I find relief from the pain. I was only under contract with the first pain management doctor and it was never violated, but no other doctor has offered this type of agreement. Perhaps the next will, and I would actually appreciate it so that there is better understanding between myself and the medical providers.
Anyway, as you said I did not experience much withdrawal, so it's been a month now since I have taken anything narcotic and I have been trying to get by on Ibuprofen and Flexeril during the day, which sometimes is very difficult. The worst pain, however, comes during the night/early morning. I'm lucky enough to have a boyfriend who gives me regular massages, so along with the heating pad that seems to help a little at night, but I am still pretty uncomfortable a lot of times and have trouble sleeping. The pain meds definitely helped me sleep through the night, but now I have been taking Trazodone before bed instead (from the GP), which has some weird side effects, but I'm sticking with it to see if it gets better once my body adjusts to it. He said it should help sleep as well as treat the pain overall. So far it doesn't, but we'll see.
My GP does want me to see a surgeon (another new doc) which I am afraid to even go to, wondering what will happen if another doctor tries to change my medications or give me a new one. I feel as though my pain is being misunderstood, however now I feel like if I explain it to a doctor in detail, I will be mislabeled, which actually seems to have happened already. All I really want is to be comfortable and have my conditions treated so I can function. I definitely agree that one Pain Management doc should treat everything including the gyno issue, however any PM docs I have asked say they only treat neck and spinal conditions. I suppose I just haven't found the right doctor yet.
I'm pretty upset/hurt that the doctor and pharmacy acted as they did, as my intention was never to pull the wool over anyone's eyes, and now I'm a bit reluctant to discuss my pain at all. I will certainly be much more aware of this whole thing in the future, but the bottom line is that I am still left sort of out in the cold with unmanaged pain. I feel like the government-doctor-patient triangle has made a lot of people hold back on addressing certain issues for fear of what may happen.
I would love to know if anyone else has had something like this happen and what did you do from here?
One day at a time, I suppose
__________________ "You can turn off the sun, but I'm still gonna shine." -Jason Mraz
Re: New to Healthboards- Not Sure Where to Turn...
Also you might want to try Ben-Gay, its in the blue bottle that you keep in the freezer to go with your bf's massage. It does wonders for end-of-the day tension that builds up. Obviously its not a miracle cure, but it gives me relief, even if it is temporary. It just feels real good for about an hour or so. The way i do it is, mu husband will massage my neck with it, then he'll add another coat on top and then i put a towel over it and just sit back.
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