Fentanyl Patches, Lots Of Questions, Please Read For Me ~~

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Jan Says:


Hi All ~ Thanks for reading and possibly helping me out ! First a quick summery, 2 failed back surgery's, L3, L4, & L5 ~ 6 bolts and screws, except, in L5, apparently, I have a screw floating, not attached. 2 Doctors, saw the X-Ray, neither of them, seemed concerned. It's not floating, it has been in the same position for 2 years now. The last 2 1/2 months, actually, I have to see him, every 22 days another story, another day, as to why, the short leash. Anyway last 2 1/2 months, I am suffering so much more, my normal pain level, (which is when I am at my best) is a 4, I don't recall a day, that's been pain free for me. But I can't get to my level, I am now 6,7, and sometimes 8 ~ I can't stand longer than 15 minutes TOPS ~ On top of my normal back pain, I have intense pain in my left hip and the pain pierces down my leg.

I called Doc's office and asked it be documented, that I am suffering STILL. I fear if I try to see him before regular appoitment, he will think I am pill searching. They make you feel so @#%* weird, as if I truly liked depending on him, as I do, I hate it !! The last time there, (2 weeks ago) I took him a new X-Ray, I asked for one to be done and he said, all looked OK and showed me some different exercises and stretches to do, said the muscle that was hurting, was very deep. He tried one IV, said it didn't work because he didn't go deep enough. But, do you think he asked if he could give me one in the correct place free, since, I told him immediately it wasn't working, and called there 2 times, saying, "IT DIDN'T WORK" No, he said, It's $125. please ! I've not had another shot yet, So, for my pain, I take Robaxin, used to take 4 daily, now at 3 daily, 5, Roxicodone 30 mg, and 1, 30 mg of Restoril to sleep. Mornings are my worse, I moan like an old man grunting (I have a deep voice too), I see in my very near future, a walker to help me walk in the mornings. Yes, my streaches help, I am usually at my best after them, but I need coffee first, I too, have 3 (Beautiful) Maltese Dogs that need out (one quite old, at 15), I simply can't streach 20 times a day, but I bet I do at least 10. I can't do nothing anymore, YES, I am so frustrated ! Finally too, the cold will leave us soon (Thank God). With that said, I love the Sunshine and love to sit in the sun still, reading a book, cold drink (SUCKS too, I can't have a cocktail) and naturally a fan.

Now to to the patch, can this be added, my Doc, will take me off the Roxy's which scare me, up until, like I said 2-3 months, I can't get to level 4, my norm. I am terrified of him taking my Roxy's away. I worry that thought process has to do with the addiction of them. I don't feel them, been on same amount, lower dose in the first 2 years, last 4 with 6 daily, down to 5 now daily. When I first take them, within 15 minutes, I still get the relief, of "AHHHHHHHHH", finally, but now, I can't get that anymore, I don't get that rush of relief. I want that back, I was so OK, with 5 daily, I was able to care for Dogs, Husband, garden, normal, for me, level 4 ! I can't grocery shop even, standing that long, trust me, I've had to do it ! I've heard several say, I should be on long active, but I tried Oxycotin (spelling sorry) and he only gave me 3 Roxy's when we tried that, I didn't feel it worked ! But I have to do something, my quality of life is leaving me, way too fast.
With the patch, band-aids don't stick to me, plus I love my Sun and go to Florida lots (Mother-In-Law). I see Doc in about 2 weeks, but I sure hope he reads this today. He is not managing my pain. Just came back visiting my (WONDERFUL) Grandchildren, I normally love being there, (KY) but I almost lost my mind, the pain and trying to play with the Kids (She's 8, he's 6).

Thanks for any suggestions, I'm 59, forced into Retirement from Cosmetologist (Hairdresser) and I don't like being retired ! I hate pain !!



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Shelene Says:

Hi Jan,

I am new here, and like you, am such a dilema with pain doctor not giving enough medication to adequatley address my needs. (it seems that we have the same doctor!).

Here is a bit of my medical history..I have chronic pancreatitis, which is hell and misery. I think it rates in the top ten most painful diseases to have. So, there is CP, and along with that I have DDD,spinal stenosis, herniated disc, and psoratic arthritis.

Okay..so I am sent to a pain doc after stay in hospital due to pancreatiis in acute mode, and am told "you are going to need strong meds to relieve the pain" by hospital pain doctor. Well, at my first visit I am put on 25mcg of fentanyl, and 4 15mg break thru oxycodone a day. He dropped my bt meds from 6 to 4 a day. I soon found out that the fentanyl doesnt last three days, and for this severe pain, it doesnt even last me a whole 24hrs. To make a long story short..I have been to this doc for over a year now with no increase in medication. I was told if I went up to 50mcg that I would only get five of 5mg percs for bt. So, with this choice I remain exactly where I started. The ultimatim of if you get more of one drug youll get less of the other. I dont understand it. I read of tiltration with sadness as I was never given that option even though I have a severely painful illness that would call for it.

I am afraid to complain, or ask for increase as per the pain contract. I am told when are you gonna have surgery ( but thats 50 thousand I dont have) and yet I am constantly razzed about it montly. I was told to just ask doc to take pancreas out without the transplant. I was also told by pain doc that he didnt know about chronic pancreatitis. However, the pancreas doctors said they took him to an educational lunch to let him know the patients needs. I have brought in literature too, but it was ignored. I was just told, "your in a tough boat".

And it's true I am, as are so many of us, who are allowed to suffer due to fears of addiction, abuse, ect. It's hard because if pain is not relieved then all the meds are just chasing the pain rather than subduing it and keeping it tolerable. I dream of a day where my pain level is a five or lower, instead of an 8 and up. Not that numbers can adequatly address the intensity, but it is what it is.

As I have been searching the internet for hope, or a solution. I am saddened by the sheer number of people in our position, and angered by those that brag about thier skills on abusing medications that we truly need. I dont have a clue about how to switch to a different doctor (or would that be dr. shopping?). This is my first time ever being in pain management and honestly, my expeirence tells me that they cannot manage the pain, so what is the purpose of going if that isnt the goal?

Sorry for ranting, but I related to your post, and what you are going through. I was a hairdresser too, and know that it is taxing on a person's body too. I can no longer do it ever since chemo cost me my pancreas. And this disease always makes doctors suspect that the reason is alcohol related. Mine wasnt, but that assumption adds to the stigma someone like me has to go through. I wonder if I must wait until I am consumed with cancer before I can earn the entilment to adequate pain relief.

Anyways, I understand. I am sorry I dont have any answers...I only have my story to add to a million others, who are in the same boat. I too, hate pain, hate medications ruling what I can or cannot do, and pray for some mercy.

I hope you have had some luck in finding the care you deserve, and are able to enjoy those precious moments with your grandchildren and such.

And..if anyone reading this has any suggestions about switching doctors, what works for chronic pancreatitis, or which patch might actually last more than a day, I would truly apprecaite the insights.



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David Says:

@Shelene,

According to an article by the University of Maryland, chronic pancreatitis may also be treated with enzyme supplements and certain dietary changes. Are these things that you've also discussed with your doctor in the realm of treatment options?

You can learn more about pancreatitis and various approaches to treatment here: umm.edu/health/medical/altmed/condition/pancreatitis

Another article by NaturalNews suggests loading up on phytonutrient-rich superfoods, such as spirulina, chlorella, dark leafy greens, various herbs (i.e. milk thistle, turmeric, holy basil, dandelion, ginger, etc), for their healing capabilities. From personal experience, I find that a company called Healthforce has some of the best superfood containing products on the market... but your local health food store should carry most, if not all of those ingredients.

I think there is a way out of the intense pain, and it may be that you just need to give your body the proper tools to work with in your diet. I hope this info helps!

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Kathleen Says:

I firmly believe in chiropractic care. One who is holistic and caring for your entire body, not just addressing a problem area. May be less effective now given your surgeries. Don't know. My chiro keeps me going.

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Teri Says:

I am so sorry, I can feel your pain. I have been through the same exact problems.
I am 46 now, been through 3 major back, (degenerative disc disease) fused with rods and screws from L4-S1 and just found out L3 is totally compress, C3-4 are getting there. Living in chronic pain, with fibromyalgia, arthritis plus osteoarthritis and Arnold Chari Malformation is not fun. I just moved down south to Wilmington, north Carolina from Connecticut, I could not handle the cold weather anylonger. Up North my doctor's had me on so much medication, have the I couldn't concentrate, once I moved here, I work with a pain doctor and got off most of the pills and I feel alert. My pain level very, it will go 4 one-day and stay but then I can go into a fibromyalgia flare-up and be at pain level 8-10.

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Vrssr Says:

I am no doctor, but I have a mild version of the problems you have. I only have one titanium bar held by two screws, a synthetic disk after five "procedures" to treat double sciatica, and one herniated disk. I do not take nearly as much oral medication (3,10/325 hydrocodone, down from 8, 6, 300mg gabapentin, down from 9) and I do use a 25mg fentanyl patch. Doctors have a combined value of opioid equivalents based on morphine. If your total is 90 or above they monitor you closely. They consider 150 potentially dangerous. At 5, 30 mg Roxicodone, you probably fall into this higher category. Alternatives to opioids are all that is left for outpatients.

Recently, my doctor offered to implant a device that uses electricity to block pain. It is a 21st century upgrade of the old tens unit.

The other thing we discussed is physical therapy and exercise to strengthen the core muscles that support walking, sitting, bending. Some people have found yoga helpful. As long as I do not do more than I can comfortably, I think that would be better for me.

Hope that helps in the information department anyway.

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