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Posted By : Lizzy55 - 10/30/2016 8:35 AM
Hi all
Ok I have not been around in a while.
Last time was discussing the infusion therapy. I don't want to take anything away from it but I could not tolerate them. I was supposed to do 6 sessions of 4 hours each. I was willing to do anything. They made me too sick and I couldn't get through the side effects. They weren't fun. If I KNEW the outcome was going to be good-- but of course there never are promises-- and the length of time one might feel pain relief couldn't be predicted.

Ok-- fentanyl. Fentanyl turned my pain around 3 years ago. I had quality of life. My flares were less and I could DO things!
Unfortunately all good things seem to come with trade offs right?

The constipation issues. I used an injection-- Relistor-- which worked but caused stomach flu like for an entire day. I used Movantik which would work for a day or two and quit. I ate high fiber,did water, ( which really don't work bc opioids slow the muscles in your GI tract)
I ended up with an unhealthy amount of stimulant laxatives daily.

Just decided it was way to much. I am young-- didn't want to ruin my body for life. Made decision to get off the fentanyl. I worked with my dr. And I will be off all of it by next week.

i know there will be those of you who will say yay for you. It's evil etc.
but since my pain has gotten worse. Much worse. I have given up things I loved. It's a vicious circle.

I don't care if I have to rely on drugs to help me feel better. I just want one that works. I do everything on my end. Eat right,exercise,meditate,yoga. If it's known I do it. Ok this is too long and since I tend to not read posts that are long I'm done.

Anyone who has done anything that they can recommend please--
Not supplements or otc meds. I've tried them all. Personally I feel belittled by those suggestions. Most of my well meaning friends who don't understand have suggested every one of them. (Please don't take that as rude. Just frustrated)

I'm already on: Gralise,cymbalta,Percocet,zanaflex

Thanks!
Grouchy


cry cry

Posted By : couchtater - 10/30/2016 6:38 PM
((((((Gentle hug))))))

I hate it when a pain killer stops working or stops me up.

I can't help you there, but hope you can find some relief soon.
Joy
Lupus, RA, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Depression, Allergies, diabetes, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

Posted By : Lizzy55 - 11/12/2016 8:29 AM
I think I missed my mark probably because I talked too much!
My point was that I found great relief from the fentanyl patch. I understand the great reluctance in the community to opioids. Here is how I see it:

One of the main tenants of fibromyalgia is hyperalgesia. In other words it makes other pain more prominent. I think that possibly the opioids make the other pain-- arthritis etc better therefore the fibro has less of an effect. When I discussed my fibro wth my doctor in a skeptical way she said you always have to take into account other pain issues which the fibro makes worse.

Ok that said--the reason I came off the patch is because opioids are notorious for stopping GI movement. I couldn't take it anymore and I had run through all the fixes. I was very afraid I was doing irreparable damage to my bowel.

My question was has anyone taken anything new-- prescription-- that has helped???

Am a huge researcher but you never know when some doctor prescribes something no one has thought of.

Looking into nucynta at the moment. If you have any experience with it let me know!

Pain peace

Posted By : beegmashl - 11/12/2016 2:37 PM
I saw a commerical awhile back on tv about a new drug for people with constipation and on opoids. Did you try Lincess? I was on that for awhile but had loose stools. You could use that until you are cleaner out and then switch to a powder called Miralax. If you need immediate relief, go to the $ store and buy a small bottle of what they would give you prior to a colonoscopy. Buy 2 but dont use them at the same time, unless you feel comfortale doing so. Hope this helps. Now do me a favour and tell me, how do i get my Dr to prescribe sentul patch for me? My pain is now severe and my quality of life is affected. Im doing the lidocaine infusions now, yesterday was my first one and it didnt help

Posted By : beegmashl - 11/12/2016 2:40 PM
Sentul???? darn auto correct !!!
Does anyone with fibro have tremors?

Posted By : getting by - 11/15/2016 4:06 PM
Lizzy,

I am really proud of you for going off the fentanyl patch. I know how scary that must be. But I believe you are doing the right thing. Being that you took it for awhile and were able to get your energy level up a bit, I feel it is important to make sure you keep moving after you are off the medication. I was on pain medication for quite a long time and was afraid to go off. Because I felt I probably wouldn't be able to function as I did while on them. but to my surprise, as long as I keep moving, I can continue to move. I think we need that jump start to get our energy levels back to where they were or at least more than what they have been. Fibromyalgia sucked all my energy. I felt exhausted. Plus not to mention the reason we take the meds, PAIN... As long as I can move around my pain is much lesser. I still have it, but not like it was in the beginning when I became sedentary. I was in bed for two years.

Either way I think what you are doing is awesome. I wish you the best too.

Hang in there, one day at a time...

Hugs, Karen...
Moderator-Depression


fibromyalgia, Chronic fatigue, depression, allergies

Posted By : Lizzy55 - 3/4/2017 2:29 PM
Hi all,
Since I posted this lots of things have happened. I did successfully get off the fentanyl patch! I wish I could say my pain is better-- but truth was I felt much better on it. But-- since then I have done a lot of work. (GI is much better🙂)

I have read a lot. Which lead me to the realization that I
Was grieving a lot for my condition-- almost like people grieve for a loss. A loss of myself.

I know-- she is a nutter!

Nope. I ramped up my yoga practice which I will swear by. And I try to move as much as possible. I try to distract myself. I don't talk about my pain anymore and I don't think about it 24 hours a day like I used to. It's there but I have used other means to clear my mind. I know -- she doesn't understand my pain. I DO--I know it's hard. It hurts after exercise and the morning and ----And truthfully it does me too!

No I can't do all the things I want and I hurt everyday but acceptance has done a lot. Yoga and meditation helps a lot. Don't dismiss. Sometimes it takes getting to the bottom before you allow anything else in. I have tried all the drug routes-- and the supplements and the vitamins. Now,not that I am not on drugs. I still take:

Cymbalta,gralise,zanaflex and Percocet 3 times a day-- but they do help me. They enable me to have quality of life. I still see a doctor at a pain clinic and a counselor once in a while. But I don't depend on them to change my life anymore.

I have radically simplified my life which has lead to less stress. I don't overdo and I say NO more than yes. It doesn't bother me. Very Helpful.
Also worked on my diet. Not crazy. Just high protein and fiber. No processed foods. Fruits and veggies,less sugar and less caffeine.

Everyday is a challenge. (I had three hip replacements on the same hip. 2 just this past year-- and that was the fun part--)

What was my point?🙃
Get through the fibro grieving--nothing will work until you do.
Try gentle yoga with a teacher who also teaches mind/body connection.
Try guided meditation (utube has free ones)
Keep moving
Stop talking about it-- and thinking about it--it is what it is
Distract ( I had to do this a lot withdrawing from fentanyl)
If a drug works take it-- as long as it agrees with you.
Simplify your life--

Finally some interesting books:

Full catastrophe living
Who says you can't? You do
Minimalism
Essential

I wish the best for everyone. Of course I will update if I find a great drug or cure🙂
One moment at a time.

Lizzy

Post Edited (Lizzy55) : 3/4/2017 1:42:20 PM (GMT-7)


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