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Old 05-11-2008, 11:44 PM   #1
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Could really use some help and advice please

I have had several back problems on and off for about 4 years now. In the past I always tried to tough it out without pain meds because I don't like the side effects. I have used Motrin so much over the past 4 years that I have now suffered 2 stomach ulcers and have been instructed to never take any anti-inflammatory medication ever again. Last June I fell while excercising and a few weeks later fell a short distance off of a ladder. All of the problems I had in the past have now returned and are much worse this time. My MRI's have also shown that everything is getting worse in my lower back. I have 2 bulging disks, DDD, and a pinched nerves in my lower back. Pretty much anything below the waste is fair game for pain including some not so fun private areas. I have not lost control of my bladder but sometimes have the opposite problem and cannot unrinate even though my bladder is obviously full and I feel like I have to go. I went to the ER once for a straight cath to finally empty my bladder because I couldn't stand it anymore. My Cervical MRI came back negative, however, I have a lot of pain in the lower neck area, left scapula, shooting pain down my left arm with a lot of numbness, tingling and weakness in my arm and fingers. I also have a lot of pain in my hips, thighs, ankles and feet.
My PCP has prescribed Vicodin on and off and recently sent me to a Pain Clinic. I have had three injections in my lower back and haven't had any relief and it seems like things just keep getting worse. The doctor I see at the pain clinic doesn't seem to believe in pain medication and will not prescribe unless I have an injection, but only in very small amounts and the smallest dose possible. I'm very frustrated and don't know what to do next. My PCP knows me and trusts me but isn't willing to continue treating me for the pain and the pain doctor seems to believe that the injections he did were perfect, and should have been my "miracle cure". When I told him I hadn't gotten any relief from the injections he showed me the films from the procedure and said "look, it was a perfect injection in exactly the right spot" and looked at me like he just couldn't believe that they hadn't worked. He sent me away with an order for another MRI, (thoracic) and an EMG and told me to take Motrin for pain even though he's well aware that I'm not supposed to be taking it. He told me if I wanted something more for pain to see my regular doctor but my regular doctor sent me to him. I have never abused a precription, always took it as directed. I have volunteered to come in for drug tests and pill counts as often as he wants me to but he still won't help me. I am only 32 and I feel like he doesn't believe me. He hasn't even addressed the neck pain or the upper back pain at all. He did an exam and noticed some weakness in my left arm as well as my left leg. I'm not sure what to do or where to go from here. I feel like I'm being treated like a criminal for even asking for pain meds. I haven't done anything wrong but they make me feel like I have. I automatically feel guilty and uncomfortable when I bring it up. I know I need to find a different doctor but I'm so afraid of being accused of "doctor shopping" or "drug seeking" or doing something wrong. I'm new to this, for the first time in my life I feel like most days I can't function and do things that I used to do and enjoyed doing because I'm always in pain and I get so tired of it it's just easier to give in and lay in bed and do nothing. I have missed so much work that I'm afraid of losing my job but I can't stand being there and being in so much pain all day. I work in a very busy hospital and spend all day taking care of other people and I love doing it but I don't understand why I can't find someone who's willing to take care of my own medical needs. Today I feel like I want to just give up, I'm young and I want to be able to enjoy my life and be active. I feel like because of my age people think I should just be able to tough it out and deal with it but I can't. It's very exhausting and very frustrating. Any help or advice would be very much appreciated. Thank you in advance.

 
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Old 05-12-2008, 04:47 AM   #2
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kim46 HB User
Re: Could really use some help and advice please

You sound so dejected. Is there anyway you can line up an appointment with a PM doctor who will prescribe narcotics? Otherwise, a PCP who will presribe pain relief? I have a PPO and I can to any doctor I choose and my insurance company still flagged me because I fill brand name drugs versus generic (I may have to change this to meet them half-way). The whole baloney about checking your scripts with ALL of you doctors (even innocuous ones) is the insurance company's attempt to drive down the cost of your meds. For me, the fact that they reached out to my doctors without first consulting my medical file just proves it - if they had checked themedical claims they would know from the medical claim why I received painkillers. When all was aid and done and 4 of my doctors received a letter I got really angry and wrote a 9 page letter to my insurance company. The #1 reason I am annoyed is that the RX insurane did not bother to call me! I had the RX insurnce department tape our conversation and then sad something like "if you continue to contact my doctor now that you have my diagnosis, I will sue you for malpractice.

it's absolutely ridiculous that we cannot get pain pain (and I don't abuse my meds; not do I run out early). When my father was dying from cancer I had to practically pull the morphine out of the nurses' hands so that I could attend to him. What he dealt with prompted me to join a couple of Pain Foundation sites. At one point I thought about smoothering him because he asked me to!

I would take the doctor shopping chance if I knew it woud provide relief in the long run. Look at your network and see if you can find another PM doctor. If you can't go outside the network and pay your 80% co-pay. For individuals - your out of pocket expenses are capped at $4K per annum.

Feel better - I hope I have helped.

Last edited by Administrator; 04-30-2009 at 05:23 PM.

 
Old 05-12-2008, 05:03 AM   #3
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skych HB Userskych HB User
Re: Could really use some help and advice please

Hi

Welcome to the boards!!

I am so sorry to hear of your pain and injuries.

There are so many people on this board that have been or are in the same position that you are at this time.

I am sure that one of them will read your post and respond.You already know that finding a another PM is a good idea. It is unfortunate that there are some Chronic Pain Patients out that are abusing their meds and in turn it really does make it difficult for us people who are not. I think it is part of what we just have to deal with. Sad...but true.

I think if I were in your shoes I would make an appointment with your regular doc and explain the situation and see if he can refer you to someone else. Or just ask your insurance if there is another pm doc in your network.

I totally understand how frustrated you are with the pain, and I also understand the fears as well. There are so many of us on this forum that have the same frustrations and fears. We are a ggod support group of good people here and I want you to know your not alone on this thing!!!

I am surprised that none of your doctors have sent you to an orthopedic surgeon or a neurologist, or have you been?

Hang in there and we are here to support you!
Chrissy

Last edited by Administrator; 04-30-2009 at 05:23 PM.

 
Old 05-12-2008, 05:42 AM   #4
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Join Date: Feb 2008
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cmpgirl HB User
Re: Could really use some help and advice please

Hi Welcome! I am sorry you have had to seek us out, but I am really glad that you found this site. There are so many amazing people here, who have vast knowledge as well as a truly compassionate and supportive nature.

Your story, as Chrissy said, is an all too common one, in terms of not getting the kind of care that a person with legit pain deserves. It is never an easy journey.

Were you given a choice of PM specialists or just sent to this one? Also, is there more than one practice in your town or city, that treats pain patients? The actual specialty of a PM doc, is a very important factor, in my book. There are some, who are better trained and equipped to handle chronic pain, than others.

In some cases, it is necessary to go a little bit out of your general area, to find the right doc. Also, did you sign a contract with this current doc? Sorry for all the questions, but knowing these things makes it easier to understand what options you might have.

Please try not to despair too much. Many people who have been in your shoes, have found the right fit for them. It just sometimes means you have to "kiss a few frogs", before you find them. I was one of those people and I now have the most amazing PM.

Hang in there, and if you don't mind answering my questions, I would be happy to tell you what I know, as will so many others here. cmpgirl

Last edited by Administrator; 04-30-2009 at 05:24 PM.

 
Old 05-12-2008, 07:24 AM   #5
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Re: Could really use some help and advice please

Welcome . Sorry to hear about your issue.....We hear this all to often unfortunately.

Here's what I would do:

First, I would schedule an appt with by GP and get there fast. Be blunt, direct, and a little show some emotion about your pain. Plead with the Doc that something has to be done because you are suffering. Tell him the truth...That there seems to be this back & forth between him and the PM Doc...Each is telling you to get your meds from the other, and that you are caught in the middle.

IMO, your PM Doc isn't acting like one. Once you are referred to him, he should be addressing your issues....Not sending you back to the GP for meds. You need a new Doc. There is nothing wrong with searching for another....This board is full of people who have similar stories, yet eventually found a good Doc.

Personally, I think it's better if you look sooner rather than later....Fits your scenario perfectly in that this Doc isn't working, so you were forced to search for another. Conversely, the longer you wait, the more likely someone will say "well her pain couldn't have been that bad is she's stayed with this Doc for xyz time." You've given it a reasonable try....Time to move on. Your GP can refer you to someone else at this point...The basis for your next appt. You may also ask him about meds in the interim.

Good luck.

Ex

Last edited by Administrator; 04-30-2009 at 05:24 PM.

 
Old 05-12-2008, 07:52 AM   #6
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Posts: 1,569
forginon HB User
Re: Could really use some help and advice please

Welcome!

So glad you found us.

There are some things you can do for yourself to get some relief, and put yourself in a better light with your docs.

There are a number of non-narcotic meds available with prescription that can be of great help. And you should try them before getting into the big time with narcotics anyway (unless you've already done so). There's a relative of Neurontin called pre-gabalin, brand name is Lyrica. This med has done wonders for many folks with nerve pain, of which you have an abundance. Topamax is another in the same family. There are also meds in the anti-depressant family that really help with pain. The main one is Cymbalta, which is indicated for pain and/or depression. I use it and it helps a lot. Then there's Ultram (tramadol). This one has a mild narcotic element to it and can be of great help with pain.

You might do well to ask your docs about these meds. They may provide significant relief. Also, it will show you are willing to do something besides taking narcotics for pain. I strongly urge you to give these a try.

One last thought - Do you have access to a talk therapist? This can be another powerful tool in your arsenal against pain. My therapist has a background in pain management and addiction and has actually gone to bat for me with my doc when he was reluctant to prescribe certain meds for me. And she was successful. You need a team of folks on your side, including docs, therapists, friends/family and us. And we're here 24/7.

Please let us know how your care is handled regardless of what treatment modes your docs employ. You can get so much help here. These folks have been through literally everything. There's almost nothing you could post that would surprise us, and you will be amazed at how much the experience here will help you in your fight for relief.

I think there's lots of hope for you. Please don't despair. It may take a little while to get to a better place, but I am very confident we can help you get there.

steve

Last edited by Administrator; 04-30-2009 at 05:25 PM.

 
Old 05-12-2008, 07:08 PM   #7
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Join Date: May 2008
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HopeWanted HB User
Re: Could really use some help and advice please

Hi. I am new, too. For 4 years I've had nerve pain, have tried 11 meds, four injections which failed, can't do the anti-convulsants like Lyrica and Neurontin, but am able to take a micro-dose of Cymbalta (20 mgs a day---because I'm allergic to it). Just had a nerve block that upped the pain back to the 9's and am emotionally down also from this setback. Summer is a tough season because it's like the winter holidays: everyone seems excited about going places, etc. Sorry I'm such a downer. Somehow I still have faith that this constant 24/7 burn/pins & needles will dissipate some day........it's tough though. I understand your frustration. Welcome from another newbie. Hope

Last edited by Administrator; 04-30-2009 at 05:25 PM.

 
Old 05-13-2008, 02:18 AM   #8
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Ms one HB User
Re: Could really use some help and advice please

Wow. Thank you all for being so welcoming, understanding and supportive. It's amazing to me how much better I feel after reading your replies.
I will be having the Thoracic MRI tomorrow and I have an appointment already scheduled for Friday with my current PM doctor which, as far as I'm concerned, will be my last appointment with him.

I really appreciate everyone's input and would like to answer all of your questions so I apologize if this gets lengthy. I have not yet seen an Orthopedic doctor or a Neurologist but they are next on my list. I was just really hoping that the injections would work and I didn't expect to have such a hard time getting some relief. I feel like things are getting desperate now though and I'm more than ready to move on to the next doctor.
I did try taking antidepressants to help with the pain. I have tried several of them over the past year but every one of them made me depressed and almost suicidal which is very uncharacteristic of me. Those feelings never went away and my entire personality changed as well, not for the better. My doctor and I both finally gave up and he took me off of them. I've been fine ever since. No depression, no suicidal feelings and whoever that person was, it wasn't me. I've obviously been feeling down lately because of all of the pain and frustration but I would imagine that happens to almost everyone with chronic pain. The one good thing that came out of all of that is that I now have a much better understanding of people who suffer from severe depression, suicidal feelings and complete hopelessness. That is just a very horrible way to feel every day and my heart goes out to everyone who has to live with those feelings every day of their lives. It takes tremendous strength to get up and keep going when you feel that way and I know that I am very fortunate to not have to feel that way anymore. I almost think that's worse than physical pain.

I have tried to talk with my doctor (both of them) about other alternatives to narcotics for pain. I know there are other medications out there that can work and are very effective but so far neither one of them have even offered to start trying any of them. I'm not just asking for pain meds, I would be willing to try anything that my might work. I have tried Tramadol but I didn't get very much relief and it gave me very bad headaches and made me very nauseous. I would be willing to try it again and have also discussed it with both doctors again but they have both agreed that I would probably have the same problems with it that I had before so it's pretty much been ruled out as a possibility. I know that my brother takes Topamax and it does help him, I don't know why it hasn't been offered to me, I feel like a lot of time has been wasted when I could have been trying a few different medications. I feel like I've just had some bad luck with the doctors that I have chosen and I'm afraid that anyone they send me to will be the same. I think I just need to start over. There are other pain clinics in my area that I could go to and even though I've never had a problem with my PCP until now I think it's time for me to maybe find a new one. It stinks though because I really like him and have been seeing him for a long time.
After the way I felt last night and today I'm very determined to find someone who is willing to help me. I barely made it in and out of the grocery store today. Every step I take during the day is full of pain and even simple things are becoming harder and harder for me to do. I was so down today that I actually considered trying to find homes for my pets because I feel like they are suffering because I haven't been able to spend time with them and play with them like I usually do. This is no way to live, and I'm very sorry for all of the pain that all of you have suffered through as well. It's frustrating and it's a very lonely feeling to sit back and watch my friends out enjoying the things that we used to do together and not being able to join them. I am very happy that none of them have to deal with this, I just would really like to be able to join them again. None of them have ever had to deal with pain like this and I feel like they really don't understand but I guess it really is hard to understand if you've never experienced it.
I'm not even asking for 100% relief, I would just like for it to be tolerable. I would settle for tolerable.

There are several pain clinics in my area and I will start looking for somewhere new to go. I am planning on seeing my PCP again and asking him to at least give me something to help with the pain until I can find the right doctors to help me. We'll see what happens.
I am so glad that I found you guys. I wish none of us had to deal with these things but it is very nice to know that I'm not alone.

 
Old 05-13-2008, 08:04 AM   #9
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Re: Could really use some help and advice please

One thing you might try in terms of finding a new PM Doc....Do a little "research" or legwork and ask around & see if you can get a good recommendation. For example, I'm not sure how comfortable you are with your pharmacist, but they are a great source of info, because they work with ALL the Docs...Ask him/her for a recommendation on a good PM Doc who is fairly aggressive in treatment.

Nurses, secretaries (of Docs), & etc are also good sources of info. Nurses are usually very upfront with info on Docs. I would seek out others who you think may have a recommendation. Conversely, if you're just picking one @ random, it's really a crap shoot.

Only you know how bad the pain is and how much you can tolerate. You have to be your own best advocate.

Good luck.

Ex

Last edited by Administrator; 04-30-2009 at 05:25 PM.

 
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