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Charlie B53
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« on: May 31, 2016, 05:51:55 PM »


Day 3   This is tough.   That that won't kill me only makes me stronger.    That is pretty hard to believe right now as I sometimes have to wonder.

I was absolutely stunned when my Dr told me that I am a Drug Addict.    I quit getting high in September 1981.   I've been clean ever since.   I used an awful lot of NSAI's whic greatly contributed to the damage of my kidneys.   But I had quit getting high.    Narcotic pain meds didn't help with the pain.  I didn't like the fuzziness, it was too much like getting loaded, and it never really helped with the pain.   Dr's would prescribe them at different times, I would rarely take any as they just didn't work.

September 97 I hurt my back terribly, spent weeks in agony.  I could hardly walk for the next two years.   Dr's gave me morphine.  I still have them as I refused to take them regularly.   They actually made me sick, throwing up if I didn't take something to prevent the nausea. That bottle is over 15 years old.  It should be obvious that I do NOT use drugs any longer.   I used to.   But that was a very long time ago.

I couldn't tell you when the Dr started me on Tramadol, or Fentenyal.   Both are wonderful.  They really do reduce the pain immensely without the narcotic side effects.  No 'high'.

Now the Dr is telling me I am an addict and has cut my dose of Tramadol in half,  AND cut my Fentenyal 25%

Today is day 3.   I am sore, achy, tired, but the pain is endurable.   Every day I have been fortunate the weather is clear.  In the 80's.  I have been pushing myself to stay busy in the garden and yard.   Doing far more than I have in a very long time physically.    Maybe I am giving myself a reason to feel so sore and tired.   That parts is working perfectly.

Nighttime is my problem.    I am alright, no , not alright, the pain is less, more endurable when I am standing.   When I lay down to go to bed is the biggest problem.  It gets so uncomfortable, the pain grows that I can't lay there.  I turn on one side.  That ls no good.  On my back, nope, that's worse.  The other side.  No good there either.  On my belly, ain't no way.   I get up and pace the floor for a while.  Exhausted.   Finally give in and get in bed.  Repeat all the turns and get up again.  After about the fifth time I might finally fall asleep.   Only to wake up within the hour and start all over again.

I am not looking forward to going to bed later.

I have an appointment with the Drug Dr's Pharmacist but that isn't until NEXT Monday.   I hope I am not passed out and hospitalized from sheer exhaustion by then.

Daughter came to visit today as she had an appt with the local foot specialist here.   Wife packed a bag and went home with her for a few days.  Bailed out on me.   Told me maybe I should just go back to the VA and check into rehab there.

I won't giver in that easily.   But it is an option if I do give up.

I've got quite a stash of Hershey's,  bars and syrup.   I'v'e already had a couple shots of the syrup last night.   Can't say it really helped, but it didn't hurt anything except raise my blood sugar.   Oh, I notice by this mornings blood sugar that I forgot to take my insulin last night.   I knew I was bothered, but I didn't realize that I had forgotten it completely.

This sucks!   And I have no idea how long this is going to take.    That really sucks.  This could be one long miserable summer.


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PrimeTimer
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« Reply #1 on: May 31, 2016, 06:42:51 PM »

Am so sorry you are going thru this, Charlie B53! I have been living with chronic pain for many years now and indeed it sucks! Don't know where I read it but doctors are being told to cut back on prescribing pain meds because so many people are becoming addicted and many are abusing them in other ways, such as mixing them with other drugs to smoke/snort, etc and sell on the streets.

How to live with chronic pain? It's not easy! Here's what I know tho. Stay mobile, keep on your feet, stay active but don't overdo things. Learn to pace yourself. Don't try to do too many chores all in one day, learn to spread it out. Maybe ask the doc for some Ambien. Some people have weird side effects from Ambien, such as sleep walking but I've been on it for years and haven't experienced any problems with it. Everyone is different, tho. It's very mild, helps you sleep 4-5 hours and doesn't make me groggy the next day. I have taken the lowest dose for years, never have had to increase. Works good, works fast and comes in a generic.

A Rheumatologist told me that certain cells in our body reproduce and do repair-work while we sleep but only when we are in a deep sleep, such as REM (Rapid Eye Movement) sleep. Basically, if you don't get proper sleep you will wake up in pain like you've described; stiff, sore and aching. Also, you might want to ask about an antidepressant, particularly Selective Serotonin Reuptake Inhibitors (SSRI's). They are not pain meds. Antidepressants help with of course, depression, but also help with chronic pain but not in the same way as "pain killers". By the way, I am much like you in the way of pain killers. I can only take the lowest doses and the most mildest ones otherwise they make me sick. As for antidepressants, you might look into Zoloft, Cymbalta or Gabapentin. All come in a generic. Anyway, the most important things are: stay mobile, move around, get plenty of rest and sleep, pace yourself. And of course, come here and vent and tell us how you are doing, we will try to help you through this!   


Self-edited to correct "Serotonin" to "Selective Serotonin Reuptake Inhibitors (SSRI's). 
« Last Edit: May 31, 2016, 11:39:20 PM by PrimeTimer » Logged

Husband has ESRD with Type I Diabetes -Insulin Dependent.
I was his carepartner for home hemodialysis using Nxstage December 2013-July 2016.
He went back to doing in-center July 2016.
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« Reply #2 on: May 31, 2016, 07:00:02 PM »

My heart goes out to you. I think the doctor should have provided some kind of plan or support setting for you to deal with this.  Or tapered you down much more gradually. I've never been in this situation, so I don't have any personal suggestions to offer.  But I hope you come out the other side soon.  What about going to a pain clinic? What about medical marijuana?
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Diagnosed with Stage 2 ESRD 2009
Pneumonia 11/15
Began Hemo 11/15 @6%
Began PD 1/16 (manual)
Began PD (Cycler) 5/16
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« Reply #3 on: May 31, 2016, 08:54:22 PM »

Been there it sucks, what I learned to do is to embrace the pain.  Feel it, the only thing in my thoughts is the pain.  I concentrate on the pain.  Then I envision the pain as a pool of cooling water and I am falling into it.  For some reason about then I fall asleep.  If I wake up repeat.  By now if I hurt I just go to sleep, funny I even fall asleep in the dentist chair. 
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Charlie B53
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« Reply #4 on: June 01, 2016, 01:37:52 AM »


Back in the 70's I used togrow pot, and smoked more in a day than most peole smoke cigarettes.   I was comfortably numb abouot the time Pink Floyd recorded the song.    I quit all that cold in 81 when the Feds decided they and the States could sieze assetts, forfeitures from ill-gotten gains.   I never looked back.   It was a good thing for me as I was developing chest pain only when smoking pot.  No problem with cigerattes or cocaine. only pot.  I figured I was developing some weird physical aversion to the weed.   Many years later I talked with a respiratory therapist that told me she had noticed similar symptoms in a few other very heavy users as well.

I often wonder if pot could be beneficial for me.  My home state of Washington has legalized it, but far too late for me as I moved here to Missouri 20 years ago.   Not even medical use is allowed here yet.

I do have some in the house.  I got it for the Wife's eye problems.  I ground it into powder in measured a small amount into capsules for her to take three times daily.   She was doing better for a while but kept skipping doses and finally just quit taking them.  Her Eye Dr told her she should kep taking it as it does make a small improvement in lowering the ocular pressure.

I made sure it was never enough for her to even notice any effects.  Although I do have to admit that I did once open one capsule and smoked it.  Ingested immediately smoked it did have an effect.  I didn't like it.  It was not how I remembered it being.  I won't do that again.

This Detox the Dr referred to as taking a Drug Holiday, to get free so that when he does prescribe a dose it will have a good effect once again.

Sleep is very important.  I learned that many many years ago when I had my sleep study and got my first CPAP machine.   I felt so much better using the machine as I was not suffering from apnea and snoring any longer.   I've worn out two of those machines and currently using my third.   But even that won't let me sleep well right now.   3:15 and I am up again, for the third, fourth, or fifth time.  I've lost count.   Nor can I count how many times I have tried to fall asleep only to give up, get up, and pace some more.  Like now, using this hoping to tire my brain to the point I almost fall asleep at the keyboard.

I don't remember ever using any type of sleeping med.  I generally never have any problem getting to sleep other than pain.  Pain alone didn't even keep me from sleeping.  Many times I hurt I would simply go take a nap as the rest did seem to reduce the pain.

This isn't just pain.  I can't really describe it.  Maybe it is more akin to those of withdrawal only I don't have any of the stomach sickness of classic withdrawal symptom I learned about in school.   More uneasyness, tenseness, aches almost to muscle cramps in my legs, a feeling that something is terribly not right yet i can't identify it or do much of anything about it.

I am trying to stay active, keep half busy around as much as I can without overly exerting myself to much too fast.  I do have to pace myself, stop and take many breaks in place.  Not a problem with breathing, but a lack of energy.  Like my batteries are run down a lot.  If I stand and wait just two or three minutes I can start going again for a while.

Who ever started that 'No Pain, No Gain' should be hit repeatedly with a BIG stick!   But I couldn't swing it hard enough to do real damage.  If I can keep this up for a month maybe by then I will have gained some strength that I once had.  I will just have to endure this and wait and see.

If all else fails the Dr says the Hospital has a ward with an open bed.  They do this every day with a number of guys.   Just not me, yet.

I don't know if that is a good option for me.  I have too much to do here at home.   And who would pet my cat?   Wife pets the dog but never spends any real time with the cat.    Alley Cat and I have a daily routine.  Multiple appts in the garage, and she follows me to the barn and all around the yard.  She keeps a pretty close eye on me and everything I do.  I'm pretty sure she loves me.

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kickingandscreaming
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« Reply #5 on: June 01, 2016, 03:25:57 AM »

Tramadol and Fentanyl are pretty serious opioids and they warrant good support during withdrawal.  I would get your wife back home and take that bed the doctor offered while you get over the hump.

It's too bad that so many states are still so backward when it comes to medical marijuana.  Massachusetts is just getting up to speed.  A friend of mine with Fibromyalgia has been getting MM for a while now and they have all kind of variations in what is available.  Many have no high attached at all, and just contain the parts of the drug that are helpful in pain situations and other conditions.  They also come in many forms besides smoking: oil, chocolate bars, stuff that can me consumed in a vape pen, eaten, etc.

You might also want to check out DLPA, an amino acid that blocks an enzyme that blocks endorphins. https://www.moodcure.com/restoring-natural-opioid-system.html

Good luck.
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Diagnosed with Stage 2 ESRD 2009
Pneumonia 11/15
Began Hemo 11/15 @6%
Began PD 1/16 (manual)
Began PD (Cycler) 5/16
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« Reply #6 on: June 01, 2016, 09:45:21 AM »

O dear Charlie I feel for you.

 
This isn't just pain.  I can't really describe it.  Maybe it is more akin to those of withdrawal only I don't have any of the stomach sickness of classic withdrawal symptom I learned about in school.   More uneasyness, tenseness, aches almost to muscle cramps in my legs, a feeling that something is terribly not right yet i can't identify it or do much of anything about it.


I recognise that feeling I think. Must be in the same pain-group as severe restless leg syndrome which affects the whole body including the brain.
Maybe try Diazepam. Given to withdrawing alcoholics too.

Good luck, love and strength, Cas
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I started out with nothing and I still have most of it left

1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
       still on waitinglist, still ok I think
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« Reply #7 on: June 01, 2016, 10:38:29 AM »

I've been researching LDN (Low Dose Naltrexone) for treatment of autoimmune.   Apparently it is also used for inflammatory conditions among other conditions even certain kidney disease.   Here is an article on it, if it makes sense to you then check with your doctor as this requires a prescription.   Most doctors are familiar with the normal dose of Naltrexone which is used for drug addiction.  The research in the article below shows that low dose Naltrexone is whats used for chronic inflammatory conditons.  So have this article handy if you decide to speak to your doctor.

http://www.ldnresearchtrust.org/content/low-dose-naltrexone-and-chronic-pain-pradeep-chopra-md

Heart felt wishes for you to be pain free.  You've suffered enough.
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« Reply #8 on: June 01, 2016, 12:57:18 PM »

I am curious as to what they do for someone who goes to detox. Did the doc say anything other than there's a bed? Do they offer meds, some sort of physical comfort like massages or someone to talk you thru episodes in the night? Any sort of physical therapy and counseling?
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Husband has ESRD with Type I Diabetes -Insulin Dependent.
I was his carepartner for home hemodialysis using Nxstage December 2013-July 2016.
He went back to doing in-center July 2016.
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« Reply #9 on: June 01, 2016, 02:49:00 PM »

Charlie, when I saw this post, I was prepared for a good laugh. Not so and this is no laughing matter. I cry every day from the pain in my hips and have had radio wave treatment ( lasted about 8 days) and Norco, up to 10.5 No help, nowhere. I even have fentonyl patches. No help at all. I guess the next option will have wheels on it. I do take Melotonin, which knocks me right out for 5 hours or so. I have to tell you that I am glad your Dr. is Detoxing you properly, as in the 8 days I was drug free, I decided to just stop taking the Norco and woke up one night sitting at my computer with a box of ice cream bars on my lap and later discovered I had completely re-arranged my kitchen and remembered none of it. Picture a 77 year old blonde in her pink nightie driving a car. God saved me from that. Keep us posted Charlie and I wish you lots of luck in pain relief.
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Hey there!

« Reply #10 on: June 01, 2016, 06:47:08 PM »


Day 3   This is tough.   That that won't kill me only makes me stronger.    That is pretty hard to believe right now as I sometimes have to wonder.

I was absolutely stunned when my Dr told me that I am a Drug Addict.    I quit getting high in September 1981.   I've been clean ever since.   I used an awful lot of NSAI's whic greatly contributed to the damage of my kidneys.   But I had quit getting high.    Narcotic pain meds didn't help with the pain.  I didn't like the fuzziness, it was too much like getting loaded, and it never really helped with the pain.   Dr's would prescribe them at different times, I would rarely take any as they just didn't work.

September 97 I hurt my back terribly, spent weeks in agony.  I could hardly walk for the next two years.   Dr's gave me morphine.  I still have them as I refused to take them regularly.   They actually made me sick, throwing up if I didn't take something to prevent the nausea. That bottle is over 15 years old.  It should be obvious that I do NOT use drugs any longer.   I used to.   But that was a very long time ago.

I couldn't tell you when the Dr started me on Tramadol, or Fentenyal.   Both are wonderful.  They really do reduce the pain immensely without the narcotic side effects.  No 'high'.

Now the Dr is telling me I am an addict and has cut my dose of Tramadol in half,  AND cut my Fentenyal 25%

Today is day 3.   I am sore, achy, tired, but the pain is endurable.   Every day I have been fortunate the weather is clear.  In the 80's.  I have been pushing myself to stay busy in the garden and yard.   Doing far more than I have in a very long time physically.    Maybe I am giving myself a reason to feel so sore and tired.   That parts is working perfectly.

Nighttime is my problem.    I am alright, no , not alright, the pain is less, more endurable when I am standing.   When I lay down to go to bed is the biggest problem.  It gets so uncomfortable, the pain grows that I can't lay there.  I turn on one side.  That ls no good.  On my back, nope, that's worse.  The other side.  No good there either.  On my belly, ain't no way.   I get up and pace the floor for a while.  Exhausted.   Finally give in and get in bed.  Repeat all the turns and get up again.  After about the fifth time I might finally fall asleep.   Only to wake up within the hour and start all over again.

I am not looking forward to going to bed later.

I have an appointment with the Drug Dr's Pharmacist but that isn't until NEXT Monday.   I hope I am not passed out and hospitalized from sheer exhaustion by then.

Daughter came to visit today as she had an appt with the local foot specialist here.   Wife packed a bag and went home with her for a few days.  Bailed out on me.   Told me maybe I should just go back to the VA and check into rehab there.

I won't giver in that easily.   But it is an option if I do give up.

I've got quite a stash of Hershey's,  bars and syrup.   I'v'e already had a couple shots of the syrup last night.   Can't say it really helped, but it didn't hurt anything except raise my blood sugar.   Oh, I notice by this mornings blood sugar that I forgot to take my insulin last night.   I knew I was bothered, but I didn't realize that I had forgotten it completely.

This sucks!   And I have no idea how long this is going to take.    That really sucks.  This could be one long miserable summer.

I suggest you check with the VA about a palliative care program.  Generally speaking, their take on chronic pain control is more tailored to an individuals needs than  a pain management program. 

http://va.gov/GERIATRICS/Guide/LongTermCare/Palliative_Care.asp

https://www.mohospice.org/palliative-care/for-consumers/

« Last Edit: June 01, 2016, 06:58:24 PM by SutureSelf » Logged

I started in center hemodialysis as a 22 y.o. in 1978.  Cadaver transplant in 1990 and then back to in center hemodialysis in 2004 (nocturnal shift since 2011) after losing my transplant.  Former Associate  Director/Communications Director of the NKF of Georgia, President of the Atlanta Area AAKP Chapter, and consumer representative to ESRD Network 6.  Self-employed since 1993.

Dialysis prescription:
Sun-Tue-Thur - 6 hours per treatment
Dialysate flow (Qd) - 600 
Blood pump speed(Qb) - 315
Fresenius Optiflux200 NR filter - NO REUSE
Fresenius 2008 K2 dialysis machine
3.0 calcium/2.0 potassium bath
Charlie B53
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« Reply #11 on: June 01, 2016, 11:41:04 PM »


I haven't the slightest idea what in-patient detox involves.   I see a number of guys around the VA dressed in light brown that are some sort of 'resident patients'.   Some of these may be in the detox program, some are homeless that checked in sick and have no place to go.  One of those did tell me how the program he was in has saved his life, giving him a function and reason for continued existance, where before he had none.   I can well understand his feelings.

Palattive Care looksk closer to long term care for those that still have need for more hands-on nursing care.  Somewhat unable to totally care for themselves alone.    I don't think I am near that class yet.   Pain management is a very good fit.   I thought it was working quite well under Dr said I need to take a 'Drug Holiday,  Detox so that once 'clean' again he can re-prescribe at low dose and it once again have good effect.    This may be so, but it seems like a lot of hell and massive pain and discomfort to go through before getting any relief.   I was doing well on the fentenyal.   Dr said I could have a heart attack and die and NOT feel it.   I'm beginning to think that may not be a bad thing.

I did read the link on the Low Dose Naltrexone.  NOT indicated for those using Tramadol.  That leaves me out immediately.   I don't know if they are going to taper me off that as yet.

Amino acids may be a consideration.  I forwarded the link to the Dr to ask his opinion if it may be useful in my case.

I know I was no where near the max dose.  I expected it would be many more years, if I lived long enough, for my dose to become a concern.   All I know is that it has helped me so much for so long.  And I am pretty much worthless right now.

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SutureSelf
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Hey there!

« Reply #12 on: June 02, 2016, 03:16:34 AM »



Palattive Care looksk closer to long term care for those that still have need for more hands-on nursing care.  Somewhat unable to totally care for themselves alone.    I don't think I am near that class yet.   Pain management is a very good fit.   I thought it was working quite well under Dr said I need to take a 'Drug Holiday,  Detox so that once 'clean' again he can re-prescribe at low dose and it once again have good effect.    This may be so, but it seems like a lot of hell and massive pain and discomfort to go through before getting any relief.   I was doing well on the fentenyal.   Dr said I could have a heart attack and die and NOT feel it.   I'm beginning to think that may not be a bad thing.


Charlie, your view of palliative care is misguided - confusing it with hospice care. I say this as someone who has availed himself of palliative care services.  Over the last year and a half I've been experiencing some of the worst side effects of 25 years of being on hemo - uremic pruritus, hand neuropathy, and amyloid build up in my neck - even with running 6 hours. I hit a brick wall with my nephrologist and pain management MD on course of treatment to help me get through full treatment times due to either extreme itching jags or pain in both hands.  A hospice nurse had suggested I look into a palliative care program. 

The goal of palliate care is to help the whole person by relieving both the physical and non-physical suffering a disease/chronic illness may bring. They integrate traditional medicine with holistic treatment options as well.  A good palliative care team will work with your nephrologist to help you with controlling pain, relieving symptoms such as nausea, loss of appetite, fatigue, constipation, and depression while also providing counseling if needed. It can help through all stages of many illnesses including stroke, heart disease, copd, liver disease,cancer and esrd.  My program medical director came up with a course of action to help me get through my 6 hour treatment regimen as comfortably as possible. 

You might wish to leave palliative care open as an option as opposed to dismissing it out of hand, especially since living with extreme pain issues.  If reading this, Primetimer, you might be able to benefit as well. 

I'll leave it at that, Charlie, and wish you well with whatever course of action you end up taking. ~ SutureSelf
« Last Edit: June 02, 2016, 03:31:26 AM by SutureSelf » Logged

I started in center hemodialysis as a 22 y.o. in 1978.  Cadaver transplant in 1990 and then back to in center hemodialysis in 2004 (nocturnal shift since 2011) after losing my transplant.  Former Associate  Director/Communications Director of the NKF of Georgia, President of the Atlanta Area AAKP Chapter, and consumer representative to ESRD Network 6.  Self-employed since 1993.

Dialysis prescription:
Sun-Tue-Thur - 6 hours per treatment
Dialysate flow (Qd) - 600 
Blood pump speed(Qb) - 315
Fresenius Optiflux200 NR filter - NO REUSE
Fresenius 2008 K2 dialysis machine
3.0 calcium/2.0 potassium bath
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« Reply #13 on: June 02, 2016, 09:40:14 AM »


SutureSelf,  You are exactly correct.  I had the misguided understanding that this was more towards end of life care.  Long term care of maintenance, not recovery as improvement of the underlaying condition not being possible.

I will have to ask a lot of questions. On my Renal team and of both my Pain Dr and Primary.  Someone should know more than I do.

I just got the call with the results of yesterday's Bone Density Scan.  Osteoporosis.  I forgot the word she used to describe the stage.  I'm thinking it is still pretty much late initial.   I expect to hear from my Primary as to what, if any, medication may be called for.  I reminded her that they have already tried three different forms of Vitamin d, some with calcium, but each one only served to increase my already higher than max blood calcium until I was at 11.7 and developing crystals within all my joints.  That was not fun.

Sometimes it seems as though life is one long medical experiment, am I am the test subject!

Shouldn't they pay me for what they are learning from this?

I wish!

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« Reply #14 on: June 02, 2016, 10:25:02 PM »

Sorry about the Osteoporosis, Charlie B53. Everyone should be concerned about their bone health but I think it's one of those things we tend not to think about for as long as we don't have to, sort of like going to the dentist. But unfortunately, there comes a time... Don't know if this will help you or not but to an extent I do believe that laughter is the best medicine. At least I know I slept better when I read the funny papers before bedtime. I let laughter be my last action of the day. You might read up on Substance P (the pain hormone) and the importance of producing endorphins. And when all else fails, read Garfield (joking). Seriously, hope these doctors can help you come up with a good plan. You're a man doing PD at home, shows you've got a lot of fight in you because you think life is worth it. Sounds like you certainly don't need to be bogged down for too long dealing with the nonsense that addiction has brought to your table. You'll deal with it alright but because you've got fight in you. Coming up with a plan and having the right team (docs) is part of it.
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Husband has ESRD with Type I Diabetes -Insulin Dependent.
I was his carepartner for home hemodialysis using Nxstage December 2013-July 2016.
He went back to doing in-center July 2016.
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« Reply #15 on: June 03, 2016, 09:27:20 PM »


I usually have a very warped sense of humor and laugh at the lighter side of most every situation.  It has been strained this week but I have still managed to laugh at myself, not near as much, but I have had a couple of chuckles.

A small bit if history. My BP is constantly pushed up according to my perceived pain.  Those days I hurt more my pressures are much higher than my normal.  Renal Dr and I agreed not to increase my BP Meds pending my seeing the Pain Dr again.  Little did I know that visit would result in this detoxing.  So not only have my BP's been a little higher than my normal, now they are pushed even furthernot only from the increased pain of the reduced pain med, but the other symptoms of withdrawal.

I started reading up in withdrawal symptoms and see that I am nowhere near as bad as many of the usual hard core drug addicts.  Fortunate for me I guess.  Using the COWS assessment system I only rated myself in the Low category with a score of 4, possibly a 5 which is nearing Moderate.

I also looked to get an idea what if any medications may be used to help with any of these symptoms and I find that Clonidine may be used for many of the very symptoms I have.    Oh Really!   I used to take this as a BP Med, quitting when my weight loss reduced my BP's low enough the med was no longer needed.  I happen to have two boxs left on the shelf!   Then I thought I better check the dosing and learned Renal Patients are initially dosed at one-half the usual, increasing if tolerated well and still necessary. 

Since my BP's have been high even before this Detox, and Clonidine may help with my detox symptoms, I decided I would go ahead and begin but at the lowered dose.  I cut the patch in half so it shoud give me the initial begining Renal dose hourly.    I then sent an email to the Pain Dr telling on myself.  And called my PD Nurse and told on myself.

My monthly Renal Clinic is Monday as is my appt with the Pain Clinic Pharmicist.  Hopefully the Clonidine will ease some of my symptoms and also lower my BP slightly.  Two days my PD Log should give some indication if this is successful.  Dr will either agree or bitch at me.  He may tell me to use it full dose.  I will have to wait and see.

I am so hoping that I will feel some beginnings of lessening of withdrawal symptoms within the next couple of hours and maybe get to sleep far earlier than I have been all week.

I could easily have just given up and gotten into my 'stash', and made myself 'comfortable numb' and gone to bed to rest.  But that would have defeated the whole purpose of detox.  So I haven't done that.

Re-starting the Clonidine was a seriously tough decision, based on my history of using it, long history of elevated BP, current withdrawal symptoms, and took into account the Renal limitation on initial dosage.    Calculated minimal risk with greater possible reward.

Hopefully I will have much better news Monday when I see Dr's at Clinics.

I even thought about smoking a couple hits of pot.  I KNOW I have a stash, but it has been sooo great many years I could readily find it.  I've been clean since 81.  It doesn't loose anything with age, just dries out and burns much easier.    Trust me, my hair used to be very long.  I grew it.  I still have my Harley.   And I really do miss 'those days'.

Take Care,

Charlie B53
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Charlie B53
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« Reply #16 on: June 05, 2016, 10:22:27 AM »


I can report some small measure of success taking the clonidine.  The anxiety is not near as bad as it was.  I have managed to get to sleep both Friday night and last night.  It still wasn't easy, but instead up getting up so many times and not getting to sleep until three or four, I managed to get to sleep about midnight.   I slept almost 8 hours each night.  Only getting up to go to the bathroom.

Maybe the worst is passing.  I sure hope so.

Only problem is I will have to deal with this THREE more times.  Each month as my dose is further reduced until cut out altogether.

Like I said when Dr first talked about this Detox.  This whole Summer is going to be a Bitch.

Clinics tomorrow.  I will find out how P.O.'d the Dr's are over my starting the Clonidine.  I hope they understand how bad off I was.  I don't think I really had much choice.
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cassandra
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« Reply #17 on: June 05, 2016, 12:34:48 PM »

Hi Charlie, I'm glad to hear you're sleeping again. I'd think clinic will be okay too. And the next three times will probably be easier as you've got something now that works for you.

Good luck matey, love, Cas
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I started out with nothing and I still have most of it left

1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
       still on waitinglist, still ok I think
Charlie B53
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« Reply #18 on: June 05, 2016, 05:55:59 PM »


I do have much to be Thankful for.  I am no where near as bad off as many of the street addicts!  Or like some of those poor addicts that get arrested for their stupidity and end up forcably withdrawing in a jail cell.

Compared to some I am having it very easy.  So I have to be Thankful I am able to do this at home.  At least here I have things I can do to help keep busy, distract my mind a bit from the stresses.

Since it has been one week already it should be getting a lot easier every day.  At least I hope so.  I'll soon find out.

Take Care all,

Charlie B 53
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« Reply #19 on: June 05, 2016, 10:30:08 PM »

I'd say that so long as you can remember recipes in your head and how to cook a good pot of stew you'll keep off the streets. My husband takes Clonidine for high BP. Doc calls it "the hammer". He doesn't like it because it makes him sleepy. This is why his Endocrinologist wouldn't prescribe it...he doesn't want patients getting sleepy during the day and not be physically active. So, his Neph prescribes it to him instead because she doesn't like his BP being too high. He usually takes it in the evenings but sometimes splits it between late morning and evening. Keep on keeping on!! Good luck with your appt!
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Husband has ESRD with Type I Diabetes -Insulin Dependent.
I was his carepartner for home hemodialysis using Nxstage December 2013-July 2016.
He went back to doing in-center July 2016.
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« Reply #20 on: June 06, 2016, 06:00:00 AM »


I've never used Clonidine in pill form.  Only using the patch which is worn for a full seven days.  I was so surprised they could stuff a whole week supply of med into a little patch, AND that it would stay stuck on for that long without falling off!

My patch is 0.2 mg/day   I chose to be careful and cut that in half as the manufacture recommends the smaller initial dose for Renal patients.  It has not made very much improvement in my BP's so I would not be at all surprised if my Neph decides for me to use the whole patch.  Or he may elect to increase on of the other BP meds.  I'll find out shortly as it is almost time to head that direction for Clinic.

Oh, sleepiness.  I have never noticed sleepiness as a side effect.  It may be I have far too much anxiety for the drug to have that much effect on me.

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Rerun
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Going through life tied to a chair!

« Reply #21 on: June 06, 2016, 08:50:47 AM »

Oh, Charlie... you are in my prayers.

          :pray;
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« Reply #22 on: June 06, 2016, 07:08:27 PM »

Charlie -

Congratulations on facing the hard work.

You are an example of how people who turn to street drugs when their MD cut them off are not "victims", but people who made a CHOICE to procure heroin, blackmarket oxy, etc.   You did not make that choice.  Others did.   It's great you have the strength to make a good choice.   I hope your recovery continues to progress.
« Last Edit: June 06, 2016, 07:36:14 PM by Simon Dog » Logged
Charlie B53
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« Reply #23 on: June 07, 2016, 01:54:37 PM »


I can't afford to pay attention.  Much less buy drugs on the street.

But I'm told the low cost of Heroin is why we are seeing so many OD's.  It is cheap and easily obtainable.  The kids don't know the danger they are messing with.

Wayyyyyy back in the day,  I've done most everything that could be done just short of sticking a needle into me.   I won't go back.  Period.



LOL    and now I have to stick a needle into myself at least once a day.   Diabetes.    Who'd a thought?
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Blake nighsonger
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« Reply #24 on: June 07, 2016, 08:54:04 PM »

thanks , I appreciate your honest application, thinking of your gutting it out grounds me , glad you shared and I bet that cat does love you. talk to you later.
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