really trying to stay positive here... (long post - sorry)

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ryand
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Date Joined Dec 2007
Total Posts : 639
   Posted 7/11/2008 5:46 AM (GMT -7)   
I just had to visit the ER twice in as many days due to a flare in my back that nearly landed me IN the hospital as an inpatient yet again. And still, the doctors just shake their heads and hem and haw and say how strange it is that I am having all these symptoms! I don't get it. I am a young, otherwise healthy person. How can it be okay that my back would cause such severe muscle spasms that I am left unable to stand or even sit up for weeks at a time? How can it be okay that I would require hospitalization for treatment of pain every 6-12 months? Am I the only one who thinks that doesn't make sense?

I am thankful that one of my doctors has been willing to prescribe me a small amount of pain medications, but even with that, I am continually in horrible pain. I know many of you suffer the same fate, so I am sorry to complain to you - there is just no one else who will understand what this is like. I am (barely) able to work a little bit, but my hours have been restricted quite a bit and of course the rest of my life has just slipped away. Even the people I thought were my closest friends have left by now. They have concluded that since the doctors cannot find a way to "fix" me that I must just be exaggerating the issue or making it up. As if! What could they possibly think I have gained from this???? Even aside from the pain, this has left me nearly destitute, without a social life, and more lonely than I imagined possible.

I really have tried to do all the right things. I practice the visualization techniques, the breathing techniques, I do the exercises, I go to physical therapy, I take the medications, I have the shots, I undergo the procedures... Whatever they've told me to do, I've done it, although many of their "treatments" have caused nearly as much pain as the injury itself and none have given me any relief. The meds do take the edge off a little bit if I take them consistently on a schedule, but that isn't a solution in my opinion. And yet despite all of my "power of positive thinking" attempts and efforts to follow the medical advice, time after time I end up in the ER and sometimes am forced to stay in the hospital. I am just so discouraged right now.

I know tomorrow will be a better day. Maybe in a few weeks this flare will be settling down a little bit and I can be back to my "usual" barely tolerable pain instead of this unbearable pain for a while again, but right now even that depresses me. I just wonder if this is going to be the rest of my life... suffering through from hospital stay to hospital stay with no relief in sight.

Thanks for listening. I'm so sorry to whine so much. I know I'm just down about my situation right now. I need to remember that I've got it better than many others, right? I'm going to start chanting my little engine that could mantra now.... I think I can, I think I can... I think I can, right? I can, can't I? sad

mrsm123
Veteran Member


Date Joined Dec 2007
Total Posts : 1228
   Posted 7/11/2008 6:07 AM (GMT -7)   
Ryand,
First of all, you are allowed to vent, feel frustrated and need support like anyone else is. You are in pain, and without an explanation, it just adds to the frustration that you must feel.
Have you seen anyone else in regard to a diagnosis? A Rheumatologist maybe? Or a neurologist? I'm sorry that I am not more familiar with your story, but I would think that seeking the opinions of different types of doctors might help you find an answer. Maybe you have already seen other doctors ?
As far as the pain meds go, you do have to take them consistently and on a schedule in order for them to work at their best for you. I don't like taking them either, but I do know that taking them in the middle of a flare does not bring the relief that I get from taking them on schedule and then using breakthrough meds when I flare up.....it's not how we want to live, but it is how we must in order to have any kind of life.
If the pain meds aren't allowing you to function well, it might be time to ask your doctor to help you manage the pain more effectively.....a change in meds might help some.
I'm sorry that you are struggling, but wanted you to know that I understand.
Take care of yourself,
Sandi
PLIF/TLIF Fusion w/Instrumentation L4-5 Spondololysthesis L4-5.Laminectomies L4-5, foraminal stenosis L3-4, L4-5, L5-S1, herniations L3-4, L4-5, L5-S1, central canal stenosis L3-4, L4-5 and L5-S1
POST OP CES 3/30-06
Neurogenic Bladder and Bowel, bilateral numbness legs and feet
Revision for failed Back surgery, pseudoarthrosis L4-5, hemilaminectomies L3-4, L4-5, L5-S1, bmp added to revision fusion, replaced two bent screws that were reversing out of vertebrae - August 2, 2007
On going back pain and neuropathic pain, failed back surgery, consult for scs, decided not to do that at this point.
Adhesive Arachnoiditis also......just what I didn't need..


ryand
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Date Joined Dec 2007
Total Posts : 639
   Posted 7/11/2008 8:53 AM (GMT -7)   
Sandi:

Thank you so much for your reply. I appreciate your support and encouragement.

I have seen just about every kind of doctor I can name... rheumatologist, neurologist, spinal surgeon, physiatrist, neuropsychiatrist, anesthesiologist, internist, obgyn (a specialist to rule out/correct those issues that might be contributing to the back pain), you name it. I've been to every back and pain specialist in my town and at the nearest large metro area as well. I've also been to Rochester's Mayo Clinic and am currently seeing a specialist at the nearest university medical center and research hospital. Although my back problems began in my early teens, they have only been this constant and unrelenting for the past six years.

I know you're right about the meds. I am working my mind around the need to maintain a schedule with them, and indeed I do take them routinely. I just dream of someday getting back to a life not managed by the medicine cabinet. My problem with increasing my meds is that I have a fairly high tolerance for the medications apparently, so it seems to take fairly high doses before I get any results. My doctors don't want me to be taking large amounts of pain killers, but at the same time they don't seem able to find any other solution, so I just get lost in the middle somewhere. I recently asked my pain doc about the pain pump I'd heard about and her reply was that "that is only for end-of-life cancer pain patients." Seriously. In fact, that seems to be her position on pretty much any pain medication that works. But this is not different than the views of the other doctors I've seen either, so I am not sure what else to do. I am thinking my next resort is to start thinking about traveling longer distances to find doctors for help, but then money becomes a bigger issue, too.

Thank you so much for your encouragement. It does help to know that the people here understand what I'm going through. I just wish we could all find some relief!

ryand
Veteran Member


Date Joined Dec 2007
Total Posts : 639
   Posted 7/11/2008 10:42 AM (GMT -7)   
Maybe it will help to share more about what they HAVE told me. Sorry about that... Pain fog...

One doc said I have Juvenile Discogenic Disorder, which according to him meant that all of my discs are degenerating at a far more rapid pace than they should be. Another "side effect" of this disease is a number of "Shmorl's Nodes" throughout my spine (which have been noted on numerous imaging studies). According to this doctor, the only cure for this disorder would be to replace every last one of my discs - which, of course, is impossible. So, he told me to take up running and begin to find other ways to accept that I would have a life of constant pain. Then he said there was nothing he could do for me and to call his office again if I ever got worse. right. whatever.

I've also been told I have severe DDD, two "mildly" herniated discs (I think in the L3, L4 area) and one "slightly" torn and leaky disc (I think that was L5). A discogram showed that my chronic pain was reproduced at the healthiest looking discs I have (L1-L2 area) and at that time the lower more damaged discs did not produce severe pain when injected, although the latest few episodes I've had have been in those lower areas. The doctors at the hospital feel that this is simply a result of this area being finally worn out from so long being made to compensate for the injury at the L1-L2 area.

Finally, my back muscles are also in a nearly constant state of spasm - something I work consistently to mitigate through medication, relaxation, massage, and therapies. And to add insult to injury I have in the past couple of years developed high blood pressure - a condition which most of the doctors are fairly certain is a direct consequence of the pain and nothing else (I had previously for all my life had LOW blood pressure). Oh, and I also struggle with near constant nausea which also correlates directly to the pain - when the pain is bad, the nausea is bad - when the pain is under control, so is the nausea.

At present, I am on the following medications: Oxycontin (temporary - only for treatment of this "acute" episode), Percocet, Norflex, Zonegran, Mobic, Toprol XL, Promethazine, Miralax

Tried: Neurontin, Lyrica, Cymbalta, Hydrocodone, Lortab, Kadian, Flexeril, Valium, Flector patches, Lidoderm patches, and almost every anti-depressant and anti-seizure drug that exists, and I think there were some more that I can't remember...

Post Edited (ryand) : 7/11/2008 7:35:38 PM (GMT-6)


PAlady
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Date Joined Nov 2007
Total Posts : 6795
   Posted 7/11/2008 11:54 AM (GMT -7)   
Dear Ry,
Reading your posts - especially your first one - brought me nearly to tears. I guess it's somewhat selfish, as it reminds me of how my life has disintegrated, too. Don't ever feel bad about writing, or sharing your sorrows and struggles with us. That's what we're here for.

One doc told you to take up running???? Ok, that it just plain crazy.

You are doing everything you could possibly do, but this isn't a mind over matter issue. The meditation and other relaxation strategies can help you manage the physical issues, but the problem isn't located in your mind. It's in your spine. And it sounds like do to the JDD your DDD is occurring at a faster rate than for most of us. So I don't understand why your docs wouldn't even want to consider the pump or something else - although as you've probably read here that has mixed reviews. I know you said there's a tolerance issue, but there's also a life issue, which I don't think docs "get". And with the increase in BP (I had this happen, too, with always having low BP until the stress of all the pain)....i hate to say this, and I don't mean it to sound harsh, but sometimes I know my lifespan will likely be shortened because of it all. Certainly my quality of life already sucks. So the question is what's the best quality we can get, even if it is for a shorter quanitity? I wonder why the oxycontin is only temporary - although I'm guessing it's the tolerance issue. Has methadone been tried?

You have been so some top hospitals, so I don't know if that's the answer or not. It may be more trying to find a more compassionate pain management doc, but I know (don't we all!) that's easier said than done.

Oh, I wish I had more answers for you. And for myself, too!

Hugs,
PaLady

tom inpain
Regular Member


Date Joined Jul 2008
Total Posts : 239
   Posted 7/11/2008 1:17 PM (GMT -7)   
Muscle Spasms !!! Everytime i walk it causes severe pain that causes me to sweat. When i sweat a lot i become dehydrated and the muscle spasms start and are unmerciful Now I take vitamin b 12, b complex, good natural multi vitamin plus some pickle juice and no more spasms. Hopefully this little information on what helps me can take away a little pain. Cordially, Tom

Dragoness Warrior
Regular Member


Date Joined Jun 2008
Total Posts : 96
   Posted 7/11/2008 1:27 PM (GMT -7)   

Ryand,

     I'm SO sorry to hear what you are going through!  No doctor should be treating you like that!!  I would definitely try looking for another more compassionate doc, like PALady said!  That just doesn't sound like they are taking your pain seriously!!  And that response that the pump is for life threatened patients is bogus, because the pain has to be managed somehow and if the orals aren't working, there has to be other options to go!  So, I would try and see about a new doc!

     I myself have found that some friends left, they just don't understand what you are going through!  But when you think about it, do you really want to surround yourself with that negativity?  They obviously weren't good friends to begin with, or they'd understand!  I have only a couple friends, and they understand that I can't come see them, or go out with them, etc.  Your true friends understand, and if you're left with no one, or even one, that's ok too, you have to take care of yourself right now anyway!  And besides, you have plenty of friends with this family of pain sufferers, we all understand!

     Also, I would take the advice from PALady and Sandi, they have given very good advice, as always!!

     I would also talk to your PM about trying different medications, because that happened to me, I was having trouble with each one that I was given, they just weren't helping!!  The Vicoden was making me SO moody, the Topamax would interfere with birth control, as most meds do, and so on!  I was on Methadone, which helped me the best, but then was switched off because of the problems they were finding with the heart with patients on that medication!  So I've been on the MS Contin and that really doesn't help much, but I don't want to keep switching meds!!  And if you are having such bad spasms, I would talk to your doc about muscle relaxers on a schedule, over time they help better, but it sounds like your muscles need some calming down too, that's what sounds to me to be one of your biggest issues!  Try to do relaxing techniques for you muscles too, the meditation should at least help you too!  But one thing too that will REALLY help, is to think POSITIVE, I know, it's easier said than done, but since I've been doing that, it's helped me gain a good outlook on life, you have life, though painful, you still have it, and there are things that you can do to help yourself feel better!  When you think positive, life seems to get more fun!  Though it's hard to bypass pain, it helps when you can think positively, it's very hard to explain, but you can do it!!  You can help yourself get emotionally better, and that helps a LOT!

     I wish that I could say something that will make your pain go away, but I don't know any magical words, sorry!!  Just know that everyone here has your back, and we are here to help you just the same!  Please don't be so hard on yourself, it's not you that is the problem, it's the healthcare and compassion that is lacking!  Keep your head high!

     Good luck to all and I hope that we all find some sort of relief!!


ryand
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Date Joined Dec 2007
Total Posts : 639
   Posted 7/11/2008 3:57 PM (GMT -7)   
Thank you all so much. Your encouragement means the world to me. I have edited my earlier post to add some of the other meds I've tried before as well.

Tom, I do take a multi-vitamin and some extra calcium and vitamin D, but I will try adding vitamin B and B complex to see if that helps. Thank you for the suggestion.

PAlady, I have read and been encouraged by so many of your posts before, and I know you have suffered a lot recently as well. Know that I pray for you also. I have used Oxycontin before as well, but that time as well it was temporary and though it did help, my doctor made it clear immediately that I would not be allowed to stay on it regardless as it is a med "reserved for end of life cancer pain" patients. Yes, that is just a mantra for her. But the other doctors I've seen before this one have been reluctant to even take over the percocet prescription my regular doctor had been writing. The one who did agree to take it over then wrote a prescription for approximately 1/4 of the amount I'd been taking and then couldn't figure out why my pain was increasing again. Go figure. That same doc was the one who tried Kadian with me though, which I found kind of odd. But the Kadian didn't work at all - I might as well have been eating sugar pills for all it did. I got up to taking 120 mg of Kadian a day and NOTHING. Not even a dent in the pain. The oxycontin with percocet in between seems to be the only combo that works even a little for me. I haven't tried methadone yet.

Dragoness, thanks for your words, too. I do know my attitude affects my health somewhat as well, and I really do try to keep a positive outlook. I guess that's why I posted this today. I just got to the point where I was so overwhelmed I couldn't do it on my own anymore. I appreciated what you said about having this family here. I need to remember that. I will find a way to get back to my cheerful upbeat self somehow. I've got to. I just wish, like PAlady said, that I had some answers for us all. Sometimes it just doesn't make any sense that so many of us have to suffer like this.

Thanks again to all of you.
Ry

Chutz
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Date Joined Jan 2005
Total Posts : 9090
   Posted 7/11/2008 4:09 PM (GMT -7)   
Ry my friend!

I'm so sorry you're suffering so much. If those doc's can dx the pain then they should be able to get you some better pain management. Some people are helped by using a TENS unit. Have you tried it? Others by constant warmth. Have you gone to a teaching/university hospital?

Now...here's the silliest suggestion you may get yet. Write or email your congressman! OK, now that you've stopped laughing...it's amazing what they can do and the mountains they will move in an election year. (We did and it's amazing how many of them have jumped to try and help us.) Tell them you have been diagnosed but because you are young you are not getting proper or respectful pain management.

Have your local newspaper do a story on you ...on unresolved Chronic Pain in young people. Use every tool you can to get help!

Keep in touch,
CHutzie (email me any time)
Co-Mod Fibromyalgia & Chronic Pain Forums
~~~
Fibromyalgia, Ulcerative Colitis, Insulin dependent diabetic, collapsed disk, dermatitis herpetiformus, osteo arthritis in spine and other locations.
***************

The only difference between genius and stupidity is that genius has it's limits. Albert Einstein: (1879-1955)


ryand
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Date Joined Dec 2007
Total Posts : 639
   Posted 7/11/2008 7:15 PM (GMT -7)   
Thank you, Chutzie. I appreciate the offer to email you, too. (I'll try not to make you regret that! tongue) Seriously, though, I know you mean it, and I am grateful.

I do have a TENS unit, but I don't get much relief from it. My PT guy uses one in conjunction with heat during my appointments, so I might try pairing the two at home as well. I do use heat a lot, and during a flare like this one, ice sometimes helps. My current PM doc is at a teaching/university hospital, but she doesn't seem to be very "forward thinking" IMHO. I routinely search out clinical trials and went through one, but have not found any more that I qualified for or that were close enough to participate in.

I will think about your other suggestions though. (I didn't laugh about writing the congressman, really!) It's hard for me to think about sharing anything in a newspaper or anything like that, as I am really a very private person. It may not seem so, given my posts here, but this forum does lend a certain degree of anonymity that makes me feel more safe in sharing these personal details. I'm sure I'm not alone in this, but I was raised to sort of put the smiley face on and show the world that everything was fine and wonderful even if I was falling apart inside. I suppose this has made me partly to blame for my "friends" deserting me the way they did. For as long as I could, I did my best to maintain my life as it was and fake my way through things with a smile pasted on - even if it meant going home and crying myself to sleep curled up in a fetal position because of the pain. When it finally came to the point where I could no longer pretend I was okay, I suppose to them it looked as if I suddenly "decided" things were so much worse than they had been, since they hadn't seen how bad it was before. Does that even make sense?

PAlady
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Date Joined Nov 2007
Total Posts : 6795
   Posted 7/11/2008 7:32 PM (GMT -7)   
Ry-
Everything you say makes sense to me!

I keep going back to what my cousin, a pharmacist, told me. She works at a V.A. so sees tons of CPP's. She has said that once someone find a good pain regimen, they often stay at that level for a long, long time. In other words, tolerance isn't a problem in the majority of cases she's seen. And she continually emphasizes that the opiods are safest for long term use. Since you seem to have found a regimen that works for you (oxycontin w/ percocet for BT) now the next step is to find a doc who isn't wo closed minded in her./his thinking. It's sad, too, if this doc is teaching other docs, and believes that these meds, the pumps, etc are only meant for terminally ill cancer patients. That sounds so antiquated to me, and more personal bias than anything else.

Are there any other docs in your region you think might be open to prescribing for you what you already know works? Maybe you could see if you could go in for an office consult to discuss it with them before terminating with your doc.

I so wish I had a solution!

PaLady

Dragoness Warrior
Regular Member


Date Joined Jun 2008
Total Posts : 96
   Posted 7/12/2008 10:28 AM (GMT -7)   

Ry,

     I totally agree with PALady, listen to her, she has wonderful advice!  And PALady, I hope that you are feeling better, I know that is the worst, being sick and in pain!  ARGH!!  Get better soon!!  But the whole part that this person really shouldn't be teaching other doc's her method, I totally agree with, totally!!  That really is unfair to do that to a person, being in pain is very debilitating and needs to be treated!!

     I'm sorry that socially things have deteriorated, and I totally understand what you mean, because I've done the same thing, put on the smiley face and deal!  I'm the same way, a private person, and I tried SO hard to maintain my life, but you have to take care of your health, and enough people told me that before I did it!!  But, hey, if their your friends, they will be there, so don't worry about that right now, your health is most important, and if you need to talk, we are here, and you can definitely email me as well, I'm your friend, LOL!

     My motto always was, "Smile, they wonder what you're up to!!", so that probably has gotten me in trouble as well, LOL!  Don't worry, don't get depressed, I know it's hard, but things will get better!!  Once you start to get comfortable with what's going on with your doc and getting the proper regiment of pain meds, you will start to get more comfortable with your "new" lifestyle.  I still feel like my life is up in the air, that I'm living someone else's life at times, but hey, whatever gets you through, right?!  We have all been through similar things, socially, mentally, and physically, though each person's story is different, we all are in pain and need the support, it's ok!!

     So, good luck to you and keep up posted!!  Good luck to all and I hope we all find some sort of relief!!

PALady, feel better soon!


PAlady
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Date Joined Nov 2007
Total Posts : 6795
   Posted 7/12/2008 10:55 AM (GMT -7)   
Thanks so much, Dragoness! I'm working at it. Wondering how much bloating is due to the big "C" from the percocet and how much if leftover stomach virus.

And Ry and Dragoness - I sure know what it's like to let others think you're strong. The thing is until I was injured I was strong and independent, and all my family and friends grew to see me that way. So that's made it even harder to say to them that this time is different. I'm no longer strong like I was and my body isn't bouncing back like it used to years ago. The PT and the injections and the surgery didn't work...and now I'm changed. Like you said, Dragoness, feeling like you're living somebody else's life, but that 'somebody' is us, now different from before. And we all need to grieve our losses and somehow, over time, make some peace with our new lives. But I for one don't like it!

PaLady

Dragoness Warrior
Regular Member


Date Joined Jun 2008
Total Posts : 96
   Posted 7/12/2008 11:22 AM (GMT -7)   

I completely agree PALady!!  We do have to grieve our losses and within time will cope with it, but it's hard, I will say that!  Eventually we come to terms with it, but we never have to like it!!  Right?!  LOL!  Positivity goes a long way, and I wish it went further, but hey, every little bit counts!

I'm sorry that you are bloated, I hate that feeling!  I get that from my meds and the constipation that goes along with it, I have IBD on top of it too, so I can understand that yucky feeling, I hope it goes away soon, I really do!  Not fun to be sick and in pain!

You know, that is one thing that I truly learned from all of this, and that is patience and listening!  At least with me, I have become more compassionate than I EVER was!  So, there is good that comes out of it too, though it's very hard to see through all the brain fog of pain and suffering!!  LOL!  But, we just have to look for the good in things, it keeps us going!

Thank you for your support, kindness, and your ears!  You all help SO much!  I wish everyone luck and some sort of relief!

 


PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 7/12/2008 11:31 AM (GMT -7)   
Is there a way I can punch a hole in my stomach and just let the air out? LOL

PaLady

Dragoness Warrior
Regular Member


Date Joined Jun 2008
Total Posts : 96
   Posted 7/13/2008 9:13 AM (GMT -7)   

PALady, you are hilarious!!  But, I'm very sorry you're in SO much discomfort!  Just a suggestion, have you tried probiotics?  In case you haven't heard of them, they pills with good bacteria that help the intestinal tract health!  Look into it, there are SO many out there, but there was one that I've been taking and it has 16 billion cells per capsule, and the way they process it makes it resistant to the acids of the stomach and small intestine and go to the larger intestines where it does the most help, is what I understand from them.  Some are processed and have cracks in their cell walls, so they aren't resistant to the acids, so this one warns about that with other probiotic products.  So, if you are interested, please ask, I would be glad to answer questions, at least from what I know!  You can also PM me!

But, this can help with constipation, IBD, Chrone's, etc.  Strictly for intestinal health, and also helps to get rid of toxin build up in the colon and help to relieve other symptoms (supposedly, but I've only been on them a little while, but it's helped my constipation and IBD a good bit!).

Anyone can PM me if they are interested, this is not a sale's pitch whatsoever, I just was hoping that someone might get some help from it!?  Just a mention, that's all!!

Good luck to you all, I hope that you find some sort of relief!!

PALady, feel better, I have you in my thoughts and prayers, as with us all!


Red_34
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Date Joined Apr 2004
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   Posted 7/13/2008 9:27 AM (GMT -7)   
Ry, I am so sorry you are having to deal with so much. I have found that many doctors just don't take anyone younger then 40 seriously when they are having pain issues. I've been dealing with that my entire life. And of course looking younger then my 38 don't help either! I know that trying to plug along, follow advice and doing everything you can, and finding no relief is so very frustrating. But don't give up. Whine and vent all you want hun, that is what we are here for.
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bubsykitty
Regular Member


Date Joined Jul 2008
Total Posts : 23
   Posted 7/13/2008 10:40 AM (GMT -7)   
ry,

I can certainly relate to how you are feeling!! I am in my 30's and have been dealing with back pain for too many years. Because of my age, I found that Dr's did not want me to take pain meds on a regular basis, even though that was the only thing that helped me. I finally found a compassionate PM Dr. that has put me on 10 mg of methadone 3 x / day and 30 mg roxicodone 3 x / day. I did not CHOOSE to take daily opiates, but if that is the one thing that can give me a "near normal" quality of life, then that is the route I will go for now!! I hope you can find a good PM Dr. that is willing to do whatever it takes to help you!!!

ryand
Veteran Member


Date Joined Dec 2007
Total Posts : 639
   Posted 7/14/2008 8:34 PM (GMT -7)   
Thanks, everyone. I am feeling a little bit better today, finally. Your support and encouragement has really meant a great deal to me! The extra medication my doc prescribed seems to be helping me get through this episode, but I do wish I could stay on it long term in order to prevent another flare. My PCP is the one who has prescribed them for me to get me through until I am able to get in to see my PM (that's right - I couldn't get in to the PM for a month!). I am considering asking my PCP if he would be willing to just take my pain management back over since he is doing the prescribing anyways and the PM doesn't seem to be able to offer me anything more than another bill. But... my PCP is SO good to me, and I don't want to put him in a position where he might be unfairly scrutinized by anyone for prescribing long term narcotics for pain management w/o having me also see a PM. What do you guys think? Might that be a problem? Otherwise, I am just out of doctors withing a days drive. If I want to find someone else, I will need to start searching far enough away that I'd have to stay overnight to visit the doctor, and that creates other issues too. Is there anyone here who does that? I'd be interested to hear how it works for you...

PAlady
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Date Joined Nov 2007
Total Posts : 6795
   Posted 7/14/2008 9:44 PM (GMT -7)   
Ry,
I don't have to stay overnight, but I will be seeking a PM doc that's about 3 hours away. I think it's worth asking your PCP. Since he's so good to you, how about at least explaining the situation. I think some people just have the PM develop a pm regimen, and then turn it over to the PCP to continue if the PCP is willing. But you could see if you coud work it out and maybe see the PM doc once every few months to review how things are working, if that makes your PCP more comfortable. Your PCP probably does it for some of his patients or doesn't do it at all. Probably has a policy one way or another already. It can't hurt to ask.

Don't know if I'm making any sense! It's late, I'm tired and probably shouldn't be trying to type!

PaLady

Dragoness Warrior
Regular Member


Date Joined Jun 2008
Total Posts : 96
   Posted 7/15/2008 9:18 AM (GMT -7)   

I agree totally with PALady!!  I had the same situation in the begining of my CP problems, and my PCP was very good and helped a lot!  And hey, what's the worst that they can say, "NO"?  So, I wouldn't hesitate to ask, it can't hurt, and maybe you'll be able to do what PALady was mentioning, seeing the PM on occasion, see if there's anything that they can do to help you, and regularly see your PCP?!  I think that's a GREAT idea, and it might be easier on you!

I was lucky, I'm in the middle of the city and I have a lot of great doc's all around me, so I'm sorry I can't help with the overnighters!  But try what PALady said, maybe you won't have to worry about traveling!!

PALady, WOW, you travel 3 hours for your doc!  I'm sorry to hear that!  Is that hard on you to travel that far?  I'm asking this because my parents live far, how do you handle long trips?  Is there something that you do to help yourself for the ride?  Thanks!

Ry, I really wish you the best of luck, I hope this helps!!

Good luck to you, and all!!


PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 7/15/2008 10:56 AM (GMT -7)   
Dragoness,
Right now I'm still getting meds from my neurosurgeon, but it's been almost a year since the surgery so they're going to stop soon. They're 3 hours away, too, but have been great doing it by phone. I have been avoiding finding a PM because it's so easy right now with the surgeon's nurse. She's great, and i know I may not get that kind of reception in other places.

The car ride...well, I used to love driving long trips, but those days are gone. I haven't driven the 3 hours since I went for my follow-up surgery visit. I did stay overnight with my cousin, come to think of it, because doing the round trip in a day is no longer possible - so maybe I am more like Ry than I thought! I used to do the round trip in a heartbeat. Last time I drove back I was stopping every half hour. Pathetic. I do have cushions on pretty much every seat I use in the car and in the house.

PaLady

Since we were talking about the big "C" earlier on this thread, I will say I learned last night that prunes do work! eyes I love fruit, and started eating some of those bite size ones last night while watching tV. Guess I kinda went overboard and let me tell you it does not wait until morning to work! I was up so many times the last time I crawled into bed it was light out and the birds were singing! i got on the scale this morning and lost almost 4 lbs! So if you use the prunes, do it early in the day and make sure you have nowhere to go! yeah

Post Edited (PAlady) : 7/15/2008 12:14:02 PM (GMT-6)


Dragoness Warrior
Regular Member


Date Joined Jun 2008
Total Posts : 96
   Posted 7/16/2008 10:46 AM (GMT -7)   

PALady, you had me laughing with those prunes!!  LOL!  I forgot about those!  I have eaten them and they do work GREAT, I just don't like them too much and I was trying to eat them daily, but I would forget, probably because I'm not thrilled by their taste!  LOL!

So Ry, there's an idea for you!  Maybe if you could find a friend or relative close to a specific place, maybe you can do an overnighter with them?  That was a good suggestion, PALady!

It's very important to like your doctors (or nurses!), because believe it or not, that plays a big part in recovery and healing!  Compassionate people are very much needed in medicine!  I'm glad that you like where you're going PALady!  That's very important, and I hope that you, Ry, find a good doc!

 

Good luck to you all!


PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 7/16/2008 11:29 AM (GMT -7)   
Dragoness,
Glad I gave you a laugh! Let me tell you the other night wasn't funny, though!

I totally agree about how important the relationship with your doc is for healing, but I really don't have good ones except for the neurosurgeon, who's 3 hours away. Since the surgery failed, he ought to feel a little obligated! He has even answered my e-mails (some of the time), but his nurse is always great about sending me the perc scripts and calling in other refills. That being said, my local doctors are another story. There's no reason I should have to agonize over finding a someone to take over pm except for the fears of my local docs. My PCP has already accused me once of being dishonest - that's at a time my meds from another doctor were being adjusted and I was confused, but not dishonest. But she put that on paper and it was the main reason I lost my worker's comp case. I'm trying to find another PCP, but it's easier said than done, especially with that in my records. And the ones around this area are all afraid to prescribe. Even the neurologist I've seen for 25 years for another condition won't take over prescribing narcotics. He doesn't do pm for anyone. And the local so-called pain management specialists have all turned to the high tech injections, etc. and do not prescribe narctotics long term. It's crazy. I have to go see my PCP for another issue and I dread even being in the same room with her, but I've not yet found a better option. I don't want to go from the frying pan into the fire. And it's so hard to know in advance what you're getting, because no one I know can offer me a better option.

Sorry for hijacking this a bit, Ry!

PaLady

Post Edited (PAlady) : 7/16/2008 12:34:21 PM (GMT-6)


Dragoness Warrior
Regular Member


Date Joined Jun 2008
Total Posts : 96
   Posted 7/16/2008 12:08 PM (GMT -7)   

PALady, I'm SO sorry to hear about all that!  From what it sounds like, and from what I know of you from posting, you don't sound like a dishonest person!  I'm SO sorry!  I hate that docs label people like that, when they just don't understand, OR LISTEN!!

And PALady, I'm sorry, I didn't mean to offend you by laughing at your story!  It was funny the way you wrote it, but I'm SURE it wasn't funny to go through!!

And, I don't think you hijacked, it's all in the same topic, pretty much, and I hope that Ry finds this to be helpful too!  I'm sorry PALady, I got the impression you loved where you were going, but it sounds to me that you find it to be a little bit of a hassel?  I'm SO sorry, I wish I could help somehow!!  I think it's SO difficult to find a good doc, it's as bad as them trying this med or that, you have to try this doc or that, and it can get VERY frustrating, I know that one!  I had to find a PCP back when I was in HS, and that was very hard, because I have SO many medical problems!!  I have more than I let on, but I deal, the back is what's making life hard!  So, for me, finding someone that monitors all my medications (which I take maybe about between 13-15 meds), that doesn't just pass me off to the specialist (which my previous doc did, EVERYTIME I came in with something), and someone with compassion, SO hard!  I actually started to ask my family which docs they go to and why they like them, because I had HAD IT!!  LOL!  I wish that we all could have the best docs, that actually give pain relief!!

And Ry, give us updates too, we want to know how you are!  I hope that things are working out for you!!  I wish you and everyone relief!

Good luck to you, and all!!

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