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Maybe I am too weak but I cannot handle this new lower dose of Fenanyl

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Posted 5/7/2013 9:39 PM (GMT 0)
Some of you may have read my topic from last month about me wanting to go down to a lower dose of my Fentanyl patch from 75 mcg/hour (48 hours) to 50 mcg/hour (48 hours). My doctors agreed to change and if my pain levels went back up to let them know so they could adjust it.

I ended up calling them last week and spoke to one of my doctor's nurses and she told me to give it another week and see how the pain is and to come in sometimes this week to follow up with the doctor. I have an appointment tomorrow morning and I simply cannot handle the pain. I did not think that going from 75 down to 50 would be such a high jump in my pain levels, and its really tough to function. I thought that lowering my dose would help with my energy levels but the fact is that the elevated pain levels have made it worse and its harder to get the energy up to do anything.

The one thing I found out was that my testosterone is low (normal scale is 9.0-30, mine is at 12.0). This may be why my energy levels are lower, but I really cannot handle the 50 patch and hopefully I can go back to the 75 and find something for my low-T. Wish me luck tomorrow, I have been counting down the days for this appointment since last week, as I cannot handle the pain, even with a 50 patch on.
Posted 5/7/2013 10:01 PM (GMT 0)
Sorry to hear that...I think this is why many of us recommended you start with moving to the 72 hours with the 75mcgh patch. That way you are getting less medication per week/month....

As well as trying to add in a muscle relaxer as you only mentioned trying Flexeril but said it didn't work.

I know you said you were on Neurontin at one time...Did you get all the way up to 2700mg to 3600mg? That might be something to add back in as no one medication is meant to take away all the pain but adding in other non-narcotics may make it so you can wean back down slowly on the Fentanyl.

Just some thoughts..
Posted 5/7/2013 10:05 PM (GMT 0)
I am on the max dose of neurontin per day. I have tried many versions of muscle relaxers and they don't work, only the valium. I understand that nothing will take away the pain all together but I was looking for a reason my energy levels were low and I simply do not think the fentanyl is the reason for this.
Posted 5/7/2013 10:12 PM (GMT 0)
Oh....sorry about that...your last post on your last thread (about going down in Fentanyl)...you wrote that you "were" on Gabapentin but it didn't work then....

Let us know how it goes at the Drs..
Posted 5/7/2013 10:38 PM (GMT 0)
I can't really tell any difference when I take it vs when I do not take it. So I have it as an option but it really doesn't do anything for me pain-wise.

I will let you know how it goes. I would just like to get back on the regimen that I was on before I made the change and find a solution for my low-T.
Posted 5/8/2013 5:14 AM (GMT 0)
It is a balancing act, it really is. Trying to find a pain medication that works for us is only part of the battle. The rest of it is finding the right dose that gets the pain down to a tolerable level most of the time but that still allows us to function.

Too much med and while the pain may be low or gone it makes us zombies. Not enough and the pain zaps out strength and sidelines us.

It can often seem like a no win situation. Maybe it is, maybe it isn't and maybe we just need to redefine our personal definition of what winning is. Any more for me winning doesn't mean feeling great or even very good. It means not feeling so crappy that I don't even want to try to face the day.
Posted 5/8/2013 8:52 PM (GMT 0)
So, my doctor put me back on the 75 mcg/hour patch every 48 hours. She added Lyrica to my meds, 50mg 3x a day, and no more gabapentin. She also said my testosterone was low but not below where it should be. I had another blood test to see where it is at this month, and if its still as low she said we will try something to address that. In the meantime, I will start working out more often and hopefully that will help my energy levels.
Posted 5/8/2013 9:02 PM (GMT 0)
Glad to hear the update...Hopefully the change in nerve pain med will also add to the pain relief.

I definitely find that daily exercise and diet (I eat 99% organic/natural)..Not Vegan or Vegetarian..everything in moderation..I also drink 12-14 glasses of water every day (after my cup of coffee:)). These have all helped my energy levels and I'm a female so have low T...LOL...

Also, you may want to look into any sleep issues. Do you wake up immediately and feel rested? I was diagnosed with Fibromyalgia way back in 1995 and part of that is never getting to stage 4 sleep or that restorative sleep. So I could want to sleep for 10 hours but never feel rested.

After my last fusion I was put on Ambien. This has been a miracle med for me as I had tried everything else possible that was natural. Now I go to bed at pretty much the same time every night and wake up at 5am without an alarm clock and maybe a few times a YEAR do I feel exhausted to ever need a nap.

Getting that good night sleep has helped tremendously with my pain levels the next day to where I even lowered my medication. I also attended counseling for about 6 months after my divorce to deal with the chronic pain issues. This was another modality that truly helped with my energy levels/pain levels.

Anyway...just wanted to throw out a few more thoughts/suggestions that may help you...

Keep us posted..
Posted 5/8/2013 9:16 PM (GMT 0)
I usually find it tough to fall asleep and stay asleep. Usually I will fall asleep (when I am actually able to, as last night for example I went to bed at 10pm and didnt fall asleep until 2-3am) and wake up every 2 hours or so. It's hard to stay asleep for a full night, and I am usually still tired. When I do manage to stay asleep, I can sleep for 8-10 hours or even longer and still not feel rested. I find that I usually sleep, but it seems like I am somewhat alert while I sleep. Its never a true deep sleep, unless I haven't slept for a few days in a row and my body just shuts down and actually sleeps.

I am on the valium for sleep/anxiety, one 5mg pill per night, and it helps a little bit I guess but I have never tried Ambien. It has never come up.
Posted 5/8/2013 9:31 PM (GMT 0)
I'm truly not trying to add more meds to your list as the whole point was for you to go more natural.......just thinking of some other things that could be adding to your lack of energy during the day.

Maybe even a sleep study which many folks end up finding out about issues they never knew they had like shallow breathing or even stopping breathing, bad snoring, etc...which all contribute to fatigue during the day.

The best way in the world I have found to help my brain turn off is that I turn off TV, computer, all lights, making sure nothing is "blinking"....and I have audiobooks on my phone that I can set to go for a half hour or hour (or any time) and I shut my eyes and get lost being read a great book! I feel like a kid each night being read a bedtime story..LOL It really does make it easy to put all the other thoughts away and concentrate on the book.

But seriously...it truly is so much better than trying to sit up, with the lights on and reading a book and I switched to audiobooks because that was too hard on my neck to hold even paperbacks...The falling asleep quicker was an added benefit!

I have to change positions about every hour and a half through the night or else I would be too sore in one spot but fall right back asleep.

I also make sure that I've exercised each day both body and mind so that I am "ready" and tired enough to fall asleep.

I think my total time asleep is about 7 1/2 hours. I found out this time by seeing when my body would wake up on it's own.

Trying to brainstorm anything that can help:)
Posted 5/8/2013 9:46 PM (GMT 0)
Yeah, I understand. I want to sleep, so I wouldn't mind trying a new med if it would help. I always turn everything off around me to be in total silence and peace, but I also have to switch positions every 20 mins or so otherwise I get sore and the pain is worse. Also, its hard to "shut off my brain" most of the time, even if my eyes and body feel tired. My mind races so fast sometimes that its hard to turn it down or off so I can just simply sleep.

Once in a while I get in a good routine, where I will go to bed at a certain time and wake up at the same time each morning but this only lasts for 2, maybe 3 days at most then it stops, and when I try to go to bed at the same time again, it doesn't work and I am just laying in bed, trying to sleep but not being able to fall asleep.
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