Ready to jump

[marycarmel]

Some of you know I've struggled with dependence on a ton of meds for the last few years.  After reading about all the pain the pills cause, I've tapered down over the past year off everything from Fentanyl, morphine, oxycontin, oxycodone, ativan, cymbalta ... everything under the sun.  Physically I had a hard time due to underlying illness and found myself in the hospital twice.

In January they tried me on Nucynta, a new drug.  It kicked out a lot of my nerve pain, but I got very sick from it.  They put me back on a low dose of oxycodone.  I haven't felt myself in a long time.  Tapering over a long period made me feel constantly achy ... you all know the drill.

I've been on 10 mg. of oxycodone 4 times a day since January.  Yesterday I said I wanted off and they switched me to 2 mg of Dilaudid and Baclofan.  I'm supposed to take the Dilaudid 3 times a day.  I took two yesterday and felt some withdrawals ... not horrendous.  I took one this am ... I'm thinking of just stopping them.  My hope is that after tapering from such a huge dose to the small dose and now jumping to a different narcotic for a few days that I'll just have very mild withdrawals?  Any thoughts?

I can handle mild withdrawals for a bit if I have to, but not much more than that.  I've got 4 kids plus my dad just out of rehab with a badly fractured vertebrae.  As it is, house is a disaster but a few more days won't matter ... I just can't be totally out of commission like in the past (ER, inpatient on IV fluids, etc.)

Any thoughts?  Sleep has sucked for ages since I began tapering.  I use Alteril, melatonin and some Valerian Root, which helps a little.

I'm fairly certain I can manage the remaining pain I have with Advil, and some prescription gels I have.  I figure if it gets really bad I can always go back on things as needed ... never again want to be dependent.

So, for those who remember me, let me know what you think.  Thanks.

[marycarmel]

Good so far today.  I'm starting to think I might be okay on the withdrawals.  I also think this serious heaviness in my legs may be a fibromyalgia flair or something to do with CLL and not about the withdrawals.  I told my pain clinic the other day, I'm done with the meds.  Next is my primary care doctor next week.  She is more with me on getting off, though thinks I should stay at least on a low dose.  

[marycarmel]

I'm thinking of trying to start swimming again.   It's always the best place for me to start.  I'm just staying in the moment.  The hardest part for me is when the doctors keep telling me I "need" all these meds.  I want to know for sure and I can't unless I come off completely.

[minn66]

Oh, do I know what you mean about it being a major accomplishment to take a shower, get dressed and do your makeup and hair! :)

I don't have fibro, but I do have chronic pain. The muscles in my back and shoulders turn into rocks. You may want to look into the PT. I am going three times a week now and it does help.

I hope you have a great rest of the day. Thinking of you,

Minn

[marycarmel]

So I wound up having to take one 2 mg. dilaudid around 2 am.  I had okay sleep, not great.  I got to nearly 24 hours with nothing.  Hopefully today I'll be okay with nothing.  I know this is a bit too quick but I just want to be done.

Worst part for me at the moment is just very worn out and my legs are soooo heavy.  First day I did have the RLS and I added magnesium and that helped.  I have ibuprofen for the aches and pains.  My pain has definitely flared, but I expected that.

Big accomplishment for today:  showered, makeup, hair all done before getting kids up at 6 am ... it was nearly Herculean.  Hoping to get some cleaning done.

My withdrawals are very minor compared to most and also minor to when I've gone through this in the past.  I think what it is is that I've been at this a solid year, starting with getting off the Fentanyl.  I don't think I've really felt great one day.  And, again, I'm grateful to be without the mental part of addiction and am only dealing with dependence.

I'm also not sure if some of my symptoms are true withdrawal or a fibromyalgia flare-up.  I haven't had one in a couple of years but some of the feelings are so similar.  I guess if this continues past a few weeks, I'll see about the fibro and maybe do some PT and a short course of Neurontin.

[marycarmel]

I absolutely will, Vicki.  I trust your knowledge.  I know how smart you are.  Doing okay still.  Maybe I really have just had enough and my body won't turn one me like before.  We shall see.  You are the BEST!!!

[vicki595]

Thank you, Mary...many blessings to all of you, as well.  

Let me know if you begin to struggle with this, okay?

[marycarmel]

We'll see how it goes ... you know, I'm no martyr!  Vicki, you are a blessing to all here and have been to me more times than I can count.  Easter Blessings for you and your family, my friend! xox

[vicki595]

HAHA I love how you always approach these problems by being reasonable and hoping for the best. There's just no rhyme or reason to most of this...

[marycarmel]

I figured after 12 hours with nothing I'd be feeling something more.  If I do start getting worse, I can take one or a half.  I thought maybe cutting down to the 30 mg./day and then switching over to the dilaudid would sort of "trick" my brain/body.  Probably no such luck.  I can't get out of commission.  My dad broke his back 2/14 and it's worse.  I have him on top of the kids.  Right now I just feel out of sorts.  I still have this paranoia about addiction ... dependence is bad enough for me.  I also have some compazine that may help if the nausea/vomiting hit.  I'm doing lots of fluids, Alteril, Valerian Root and some vitamins ... Ambien if I'm really desperate.  Thanks, Vicki!!!

[vicki595]

Okay. I don't think it's a great idea for YOU.  But, I also know how smart you are and I know that at the first inkling of trouble you'll get back on and taper some more.

You barely tapered this, that's what concerns me. I'm a little afraid that in 24 hours you're going to feel pretty bad. Let's just see. I've been skunked before!

I know how you feel about this stuff and I support you so much! I just like you to be okay...

Keep in touch!  xo

[marycarmel]

I was hoping to hear from you, Vicki <3 I was on 10 mg. 4 times a day since January.  I started cutting that back and got down to about 10 mg. 3 times a day.  They thought switching me to 2 mg dilaudid would help.  Took 2 yesterday, one this morning and now feeling like I don't need the other ... I think I can jump.  Blood pressure is very high but I have Clonidine and will watch it.  Not feeling great but not like in the past.  You know I don't like these and I'd rather deal with the pain with other things.  

[vicki595]

Hi Mary!  I'm confused. LOL.  What dose of Percocet were you taking right before you switched to Dilaudid?  40mgs.?   I couldn't tell...answer that and I'll tell you what I think...

[marycarmel]

Thanks.  I do have my ibuprofen and two prescription gels, and lidoderm patches.  If I want to go back on Nuerontin, I can, though I found that even worse than narcotics.  I had been on everything except methadone for pain ... it was really criminal and I was naive.  Only had the one dilaudid this am and not bad ... hot flashes and very heavy legs and tons of sneezing but not like before when I had to have an ambulance take me out on day 2!  I just want my life back ... the narcotics numb the pain a bit but for me didn't take it away; just made me not care ... about anything.

[minn66]

Hi! I honestly don't know about the meds they put you on, but if you feel you can jump then give it a try. It seems as though you are on low dosages and you seem ready. Do make sure you have alternate methods to deal with the pain. For example, I go to physical therapy, exercise, get trigger point injections, and use Biofreeze gel on my neck and shoulders. I also have a home TENS unit and traction unit to use on the days I don't go to PT. Having a backup plan for pain has helped me get through some tough days. That, and posting here.

I believe you can do this. Hugs and thinking of you,

Minn