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    doxielover10 posted:
    I found out a few days ago that I have RA, I am just devastated. I also have Sarcoidosis, rapid cycling bipolar disorder and only 30% kidney function due to total renal failure caused by lithium toxicity , I arrived DOA at the hospital just a few months ago and no one has any idea what happened to me. However I am very restricted as far as drugs go.

    I want to take dilaudid for my extreme pain, I have an enormous tolerance for drugs so I have to have a good drug. I hate oxycodone,, vicodin does not work - I have had dilaudid with an IV and it was the first drug that not only took the pain away, it really calmed me down but I have no idea if doctors prescribe it ? Does anyone know ?

    cweinbl responded:

    Sorry to hear about your pain, Allison. Few doctors today will prescribe Dilauded. There are some better and safer narcotics now. Have your tried any of the long-acting narcotics, like Kadian, Oxycontin or Fentanyl Transdermal? Most chronic pain patients respond better to long-acting narcotics. You can then save the short-acting drugs for breakthrough pain. Fentanyl is the most potent pain medication available. Many people have a very high tolerance for pain medication. That which knocks someone else out might barely touch them. Most physicians will take this into consideration.

    Unfortunately, today many physicians are more influenced by fear of going on a DEA list than by managing their patient's pain. How sad. At any rate, some of us need to search quite a while until we find a physician willing to provide whatever medication in whatever dosage we need to manage pain (as long as it remains safe). So, you might need to search. You should also enter a comprehensive pain management program. Pay close attention to the mind/body treatments, including meditation, systematic relaxation and biofeedback. I can reduce my pain noticeably with biofeedback alone.

    I'm afraid that your bipolar condition complicates the pain medication problem. Some pain medications are contraindicated in the presence of lithium. Good luck.
    doxielover10 replied to cweinbl's response:
    I find it strange that I have had dilaudid 3 times via IV in the hospital, why would docs be reluctant to prescribe it. Do you know why ?

    My psychiatrist is listed in the magazine BEST DOCTORS IN AMERICA. and he has me as # 1 or 2 of the worst bipolars he has ever seen. It has been an epic journey, the other issues I have is an enormous tolerance for drugs and quirky chemistry.

    The two issues that cause all the med problems are that they might interfere with my bipolar drugs, I can never miss those.

    The other nightmare occurred when I arrived DOA at the hospital in total renal failure.due to lithium toxsic It was hit or miss for awhile but I made it even though all the docs admitted they thought I could not survive.. I now have 30% kidney function so I have to be very careful. In reality, I am really shocked that doctors I consider incredible will order a test that would kill me.

    I just went through the nightmare from hell after having surgery on a gland in my neck.. I was in the medical field most of my career so at least I have info.

    I had the surgery and they asked me to stay overnight so they could monitor my kidneys. MD Anderson is the best hospital in the country so I was glad to be there.. The next day I had 102 degree fever and I spent the next six days in the hospital. My next checkup was the following week, the infection was triple what it was before, so back to hospital I went, more antibiotics, Then 2 more infections which were finally cured with massive doses of Cipro. I have to say that MD Anderson is where I would go.

    I'll tell you a secret but you have to keep it quiet. As I was leaving MD Anderson they handed me a bag with all my info as well as my medication.

    When I got home I looked through the bag and there was a very large container, exactly like the ones milk come in. I took it out and almost passed out, it was a gallon of Oxycoden, I had no idea what to think ? Then I realized that since MD Anderson is the best cancer center in the world so giving me meds was no different..My obnoxious hubby wondered how much we could sell it for. My Irish Catholic brain knows that if you even think of a bad thing a nun will be coming LOL.

    Thank you so much for your post, I really need support as I have no friends here. I'm also learning a great deal.

    An_223002 responded:
    Dilaudid has much more respiratory depression than other narcotics do. I would guess that your doctors are reluctant to give this medication in a non-monitored setting because you could have respiratory issues with it.
    TXDIYGal replied to An_223002's response:
    The other posters are absolutely correct when they say that the majority of doctors will NOT prescribe Dilaudid to anyone with aggressive pain issues without being properly managed or observed. Dilaudid can cause some RAPID respiratory issues and the NEXT time you arrive DOA you may not be so lucky. They are not going to take any chances, I promise you that!

    Being a rapid-cycling bi-polar puts you in a class all your own and your pain-management team and your psychiatrist SHOULD be treating you TOGETHER. Your psychiatrist needs to know every pill that passes your mouth because it directly affects the treatment that he gives you. Pain medications are definitely not helping your bi-polar disorder. I would suggest trying as many alternative ways of working with your pain management team and psychiatrist proactively by using biofeedback, meditation, acupuncture, massage therapy, exercise, swimming, art therapy, etc. These are ALL great ways of helping you manage those highs and lows that you experience in your bi-polar disorder. There ARE outlets for those and I am sure by now you can recognize when they are coming on and having a plan of what to do when they are coming on can help you handle the emotions that they bring with them.

    My daughter and her boyfriend live with us in a little apartment portion of our house now. She had to move in with us after her third suicide attempt. I tell you this just to let you know that I speak with some experience. My daughter has rapid cycling bi-polar disorder and we set up an extra bedroom for her to do art therapy and writing therapy when she is in the throes of her manic phases and she can write, paint, draw, etc. to her hearts content and we put a futon in there for her to sleep on when she comes down. It is her own little escape room and has made all the difference for her to have her own little room to be away from her boyfriend and the rest of the family when her emotions get the best of her. My husband is a doctor so even with his knowledge we still felt totally helpless when she was diagnosed. All the knowledge in the world makes no difference when it is your own child. I hope that you find some relief and that you can take some kernel of hope from my situation. Unfortunately, there are millions of people struggling with depression, pain and bi-polar disorder and not enough doctors understand how their medications need to be handled TOGETHER rather than individually. Hopefully you can convince your psychiatrist and doctors to work together to come up with a plan that you are willing to commit to. It all starts with you though. If you aren't willing to do your part to commit to your own health, you are destined to continue to struggle. We are only given one body in this life, I hope you learn to treasure it as I have learned to treasure mine, (almost too late) and work with your doctors to give it the help it needs to reach a stage where you can manage daily living. I will pray for you and hope that God blesses you with grace.
    7yearbattlesofar replied to TXDIYGal's response:
    Whats horrible is in my state, i know of two doctors who handout dilaudid and moriphine pretty freely. I know a lady who gets 1000 8mg dilaudids a month. For what I dont know but yeah there are 2 doctors that I know of that like to hand it out. Its very sad because you know these two clinics are in it for the money and do these people really have pain issues that warrant that much medication unlless A they are selling it or B abusing it. Soon these doctors will be caught as they dont do any kind of exam , you fill out a paper , put your pain level down and doc comes in with your scripts. No help is given to the patient whatsoever. I am so tired of clinics like this. Its all I can ever seem to find. (except for my doc near my sisters but he's a flight away) Anyway I just wanted to let you know there are docs out there still doing that crazy prescribing and who will eventually ruin it for the real patients who need help
    Ruth3333 responded:
    I just had to change pain drs because of a move and it is too far away to get there. I found a new pain dr. and this guy is a joke. He doesn't listen, has lowered my pain meds to where I was when I first started getting help. I am in a rural setting and I am not sure what to do. I do not like this dr. at all. All he wants to do is stick needles in my spine. I don't even know what he is using. I have had these injections before and they didn't help. I told him and it went in one ear and out the other. He don't even talk about my pain meds. It took me almost 20 yrs to find the right help and right doseage of meds. I just wish he would listen! I have heard of drs who think they are God, but have never had one. Now I have. Anyone have any idea how I can get my problem and the solution across to him? Thanks for reading.
    TXDIYGal replied to Ruth3333's response:
    Your doctor works FOR YOU! If he doesn't listen to you-FIRE HIM. And, let him know WHY you are letting him go. Be factual and as unemotional about it as you can be. But first-when you go to your doctor, have your questions written down-ALWAYS ask him what the medication is that he is using and what the side effects and benefits are of using it versus other medications. Trigger point & certain types of injections ARE an effective treatment-TO A POINT. You didn't state what TYPE of back injury you have and what level of injury you had. Have you had a recent MRI (within the past year) that this doctor has reviewed? Have you explored newer treatments such as intrathecal pain medication delivery system? This is a method of delivering medicine directly into the spinal area via a pain pump. I was recently fitted with a temporary Spinal Cord stimulant implant and it worked amazingly well and am awaiting final approval from the VA to be fitted with a permanent one. I CAN'T WAIT!!! I can FINALLY see light at the end of the tunnel. It didn't take ALL of my pain away, but I was actually able to get around and entertain company that I had, sit out at the campfire and enjoy the outdoors for several hours every day for the whole week they were here. Something I haven't been able to do for several years.
    These are all things that are available and you should be proactive in taking control of your own treatment. If your doctor is not being aggressive enough, call your insurance company and find out what you can do about finding a new doctor and how many visits they will pay for while you are searching for the 'right one'. Your doctor works for you. He makes alot of money from the treatment that he bills your insurance company for and he needs to realize that you are taking a proactive stance in your treatment. Keep a notebook or journal and take notes on what you talk about and what your treatment plan is. Your doctor-if he is serious about finding help for your pain-will respect you for taking your treatment seriously and will be glad that you are COMMITTED to getting BETTER!
    When you go to your doctor with a plan of action-have a list of things that you are willing to negotiate on. List medications that have worked for you in the past and those that have not. List WHY they have not worked for you. Be prepared to COMPROMISE with your doctor as he is restricted in certain things he can & cannot do. Some doctors have personal or professional reasons. Ask him to start you at a reasonable level FOR YOU, until you can work something out that will work for managing your pain. Be prepared to work with him and he will be more inclined to work with you. These are ALL good ides for ANY doctor that you have to see on a regular basis. Doctors don't like to be pushed into a treatment plan without good reasons. LASTLY-Check your doctors background with your state medical board. If he has ever been disciplined for prescribing too many pain medications he will NOT be inclined to prescribe higher doses of pain meds. Actually-I prefer a doctor who will not over-prescribe, it means that he cares about YOUR HEALTH and does NOT want you to become another STATISTIC. He is trying to help you manage your pain without resorting to NARCOTICS that are addictive, hard on your liver and intestinal system, etc.

    If you ARE serious about getting better-he will work with you. If he DOESN'T-FIRE HIM. There are certain protocols in place that pain management doctors follow to try to narrow down the area of your pain, the scope of your injury and what does & does not work for you. Just realize that MOST doctors are truly trying to help their patients and if you take the time to develop a relationship with him, you might just be surprised what a good doctor you have. Good Luck & keep trying-the right doctor is out there! It's YOUR Body! YOUR Health! Take responsibility for it's management & you will feel so much better for it!!
    Jarileigh replied to 7yearbattlesofar's response:
    Probably taking some & selling some, or just selling them & paying their bills. Do you live in FL? I see your post is 4 yrs old, I am reading through the posts, it HAS happened. The DEA has cracked down so hard in my state, any Dr who doesn't have a complete file on a patient including drug tests every 3-6 months gets on the Dea's list. This is fine by me, since I don't break the law, have no problem with pill counts & the like. The problem is that Dr's are so scared to treat true pain, complete with medical records, they rarely do. When they do ANYTHING you do can be construed as shady behavior, dressing too nice or too casual, asking for certain medications (in my case I've tried them all), asking to be switched to another medication (because you've been on the same one for 3 yrs & it's no longer effective, or as I later found out, generics are allowed a 20% window of the active ingredient (actual medication, not binders) by the FDA, my pharmacy switched manufacturers & I just got a really weak version of MS Contin, which already has a low bioavailabilty) but I take steps to prevent dependence to the point it doesn't work by cutting back any time I can & found myself bewildered because the medication stopped working almost entirely after 3 yrs! Dr switched me to Fentanyl patch, I had taken before, but instead of being more steady, every 3rd day was horrible plus side effects, he gave me 15 extra, I tried to work with it, but after a few months said the side effects & yo-yoing were just too much & I wanted something else, which was returning to the previous meds), going to the ER (I went 2x, the tests found I had 2 more discs out in my back & one badly messed up in my neck, which explains the upper body pain I have been having, I went in with a concussion, & the other test revealed a reoccurance of ovarian cancer spread to remaining ovary, liver & lung)....all of these things & more are reasons for a Dr to put you on a "possible discharge list" or discharge you, no matter how good your relationship is. Once you are discharged no reputable Dr will see you because another one has decided you are a liability. Basically, if you don't LOOK like a good patient (& that is some intangible, a nurse may not like your face!) you can be considered not one. Pharmacists can treat you even worse. I once had one say he would not fill my script. I said OK. But he wouldn't give it back! I said I was going to stay there until he returned my script & ended up crying! b/c it was not his! Finally he wrote in large letters "DO NOT FILL" across the top & gave it back to me! I brought it to another pharmacy, owned by this Christian pharmacist, & he filled it without question in spite of it having "DO NOT FILL" across the top. It is not a pharmacists job to decide (without consulting the Dr) that a script should not be filled! The worst part is I stood there in unbearable pain for 2 hrs & had undiagnosed ovarian cancer with unbelievably painful abdominal adhesions at the time, crying in pain & frustration while people came & went & he said he I could not have my script back. This was a totally legitimate Dr in a well-known pain practice who wrote it. Yes, I did report him, repeatedly. He also gave my brother a something that I knew was a kind penicillian, but either he didn't, or can't read. because on the printout it said in large, highlighted letters ALLERGY PENICILLAIN, we would have been at the ER. Sadly, the word of the consumer/patient doesn't carry that much weight in the world of PM, I guess I just LOOK healthy.
    Jarileigh responded:
    Have you considered the reason the dilaudid worked so well was that it was administered IV? Dilaudid is a terrible choice, it's short-acting, so it wears off rather quickly, then there's the fact MOST people (not everyone) develops a tolerance to it quicker than almost any other pain medication, so after 3 months you aren't getting any pain relief. My PM Dr who is incredibly knowledgable told me he likes to save dilaudid for the use of surgeries in a hospital setting, or recovery from major dental surgery, post op pain, basically short term pain that will has a end in sight rather than long term chronic pain. Just my 2 cents, best of luck, I see this is 5 yrs old, I hope things worked out for you!

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