Jump to content



Photo

Fibromyalgia Anyone?


  • Please log in to reply
20 replies to this topic

#1 Merete

Merete

    Advanced Member

  • Members
  • PipPipPip
  • 35 posts

Posted 28 April 2017 - 03:17 PM

I was diagnosed with fibromyalgia and put on Cymbalta (60 mg) almost 3 years ago by a doctor who assured me it is completely harmless, has no side effects and can be stopped any time. Furthermore my body would only take up what was needed and automatically eliminate the rest so there was no concern with taking a higher dose either.  I have tolerated it fairly well although "no side effects" is definitely not true! However I am increasingly realizing that the dizziness, head aches, nausea, nerve pain may actually have more to do with the meds than with FM. So last week I told the doctor I would like to taper off. He gave the same advice lots of people here seem to have had, take 30-60-60 then 30-60-30 etc. Sicker than a dog and brain zaps that make it impossible to even move. So here I am checking your site and finding so much useful information and kindred souls! I will try the bead counting, I have the Cymbalta pills with 300+ beads so that should be doable.

My question really is, are there others out there who have taken this drug for FM and what were your experiences tapering off? Appreciate any tips or hints. My sincere thanks for this site and healing prayers to all!

Merete 

 

 


#2 fishinghat

fishinghat

    God-like

  • Active Members
  • PipPipPipPipPipPipPipPip
  • 6,826 posts
  • LocationMissouri

Posted 28 April 2017 - 04:39 PM

Welcome Merete
 
Many many of our members have taken it for fibro. I can say that the withdrawal varies in intensity from person to person and it is no different for fibro patients. WITH one exception. Just my opinion but the fibro and pain patients have a significant increase in pain as they withdraw. Those nerve fibers have to get use to being without the med before things settle down. It does, in time, settle down though. Be kind to yourself and go very slow. I always recommend a 1% drop per day at most and if I had to do it over I would do less than that.
 
Best of luck and I hope you are one of those that can come of this drug with little to no problems.
 
By the way, your dr is an idiot. He must not read the medicine inserts and all its warnings about the dangers of quick withdrawal and the recommendation for a slow wean.


#3 TryinginFL

TryinginFL

    God-like

  • Active Members
  • PipPipPipPipPipPipPipPip
  • 5,646 posts
  • LocationFlorida
  • why_joining:
    Now that I have been off this poison for over 3 years, I hope to help others as they join us

Posted 29 April 2017 - 12:40 PM

Welcome Merete!

 

Happy that you have found us!

 

I also have fibro (diagnosed over 20yrs ago) and was on 60mg for 4 1/2 yrs.  It was given to me for depression, not pain.

I made more pain for myself by going off the C cold turkey - was followed by 1 yr in hell...I have now been off for almost 3 1/2 yrs.

 

I am so pleased to hear that you are going to do the bead counting as that is the way to go (Wish I had known about it!)  By the time I found this forum I was too late to bead count, so kept pushing on... :(

 

Please listen to our doc fishinghat - he is most knowledgeable and has experience with this horrible mess too. And I agee, your Dr. is an asshat - I switched 3 times until I found one who was on the same page.

 

Please keep us posted - we are always here for you!

 

Liz


#4 Merete

Merete

    Advanced Member

  • Members
  • PipPipPip
  • 35 posts

Posted 29 April 2017 - 12:43 PM

Thanks so much both of you, it's so good to know that there are others out there. Reduced by 3 beads this morning and already I have brain zaps so this will have to be slow and steady! Has anyone tried any alternative therapies with withdrawal? Acupuncture, Reiki or anything? We have an infrared sauna so I think at least I will try to do a stint in there every day, it can't hurt.

#5 gail

gail

    God-like

  • Site Supporter
  • 4,167 posts
  • LocationSherbrooke, PQ
  • why_joining:
    5 months on cymbalta, scary side effects, never felt good.
    Needed understanding and support, and a place where I was not alone. To read others stories and realizing that I was not the only one going through all that crap.
    In hope that one day, I can return the favors in some kind of way.

Posted 29 April 2017 - 01:23 PM

Hi Merite,

Welcome to the forum. I am not familiar with fibromyalgia.
.
I remember that when I began my voyage with antidepressants in 2013, all those pamphlets in the doctor's office about how fabulous Cymbalta was for this. It was not advertise for depression but for fibromyalgia.

Now, I just want to say that if you already get brain zaps with 3 beads, you are going too fast. Don't go to 6 tomorrow, try 2. No more. We know a member that did with only 1 bead.

You seem very sensitive to meds, and other do ok from 60 to 30 overnight.

Sauna can't hurt. Many alternatives were tried to make it smoother, and if sauna helps, do it.

But, for you, the best alternative is to take out just one or two beads. Plus the sauna of course.

Vitamin C, fish oil, preferably not from our Fishinghat (lol).

#6 fishinghat

fishinghat

    God-like

  • Active Members
  • PipPipPipPipPipPipPipPip
  • 6,826 posts
  • LocationMissouri

Posted 29 April 2017 - 04:20 PM

Gail is right on the supplements. Some members have had to go as low as 1 bead a day. Whatever it takes to avoid terrible suffering.

 

Hang in there, it is just a matter of time and patience.


#7 Merete

Merete

    Advanced Member

  • Members
  • PipPipPip
  • 35 posts

Posted 29 April 2017 - 05:38 PM

Well I mustered all my willpower and took the puppy for a long walk. Head clearer and feeling much better. But I will take is slow, much as I am impatient to get off this stuff! Picked up some fish oil as well, Thanks again for all the advice and support. This website is fantastic!

#8 NicholeA

NicholeA

    Newbie

  • Members
  • Pip
  • 6 posts

Posted 01 May 2017 - 05:02 PM

So my mom was on 60mg for 6 years and she was also on it for FM. We are going on 4 weeks clean this week. She suffered severely the first 3 weeks but the last 3 days she has drastically improved, even was able to get out of the house and drive by herself for the first time since stopping. She said the fish oil did help her brain zaps, she no longer has them. She also takes cannibis oil every day which she also thinks helps everything. As far as pain from FM, she has had none. You are for sure not alone! It's hard but don't give up.

#9 Merete

Merete

    Advanced Member

  • Members
  • PipPipPip
  • 35 posts

Posted 01 May 2017 - 07:20 PM

Interesting! Did she taper gradually or just go cold-turkey??

#10 Merete

Merete

    Advanced Member

  • Members
  • PipPipPip
  • 35 posts

Posted 17 May 2017 - 10:10 PM

I finally got around to counting all the little beads in my 60 mg capsules and found 413. Such a long way to go, sigh...

#11 fishinghat

fishinghat

    God-like

  • Active Members
  • PipPipPipPipPipPipPipPip
  • 6,826 posts
  • LocationMissouri

Posted 18 May 2017 - 07:48 AM

Time and patience. Just take it one day at a time.


#12 citrusbliss

citrusbliss

    Advanced Member

  • Members
  • PipPipPip
  • 42 posts
  • LocationOttawa, Ontario Canada
  • why_joining:
    I need support in tapering off 30mg Duloxetine. I was on 60 mg for 4 years for chronic back pain and depression/anxiety. After 2 spinal fusion surgeries and a great psychologist I'm ready to go med free and see how it goes.

Posted 18 May 2017 - 08:44 PM

Time and patience. Just take it one day at a time.

Such good advice! You helped me stay on track fishinghat and I am so grateful.

 

I'm happy to say that I'm down to taking just 7 beads! 

 

I ended up adding 10mg escitalopram a few months ago to help with nasty vertigo and nausea.

 

Feeling so much more myself these days but I still don't rush the bead counting. One bead down every 3-4 days depending on how I'm feeling.

 

Yahoo!!!!


#13 Merete

Merete

    Advanced Member

  • Members
  • PipPipPip
  • 35 posts

Posted 12 July 2017 - 09:19 PM

I have suddenly developed high blood pressure and wonder if that has to do with tapering or is unrelated? Managed to taper from 60 to 30 mg over the past 2.5 months but seem to be stuck there with FM symptoms flaring up and not able to stabilize. I have been taking the fishoil and vitamin C plus Benadryl from time to time. Any thoughts?

#14 fishinghat

fishinghat

    God-like

  • Active Members
  • PipPipPipPipPipPipPipPip
  • 6,826 posts
  • LocationMissouri

Posted 13 July 2017 - 07:45 AM

One of the classic signs of withdrawal is the increase in blood pressure. Cymbalta controlled norepinephrine which your body converts to epinephrine (adrenaline). Without that control in place your body produces more adrenaline (classic cause of anxiety) and the blood pressure rises. As the withdrawal eases the bp should lower.


#15 Merete

Merete

    Advanced Member

  • Members
  • PipPipPip
  • 35 posts

Posted 13 July 2017 - 08:47 AM

Thank you again FH, that makes a lot of sense and I think you just lowered my bp a few notches! I have had episodes of bp spikes in past years in response to high stress situations, epsecially the systolic which is what I'm getting now. At this time I don't have those external stresses so I was worried there might be something else going on.

#16 fishinghat

fishinghat

    God-like

  • Active Members
  • PipPipPipPipPipPipPipPip
  • 6,826 posts
  • LocationMissouri

Posted 13 July 2017 - 08:54 AM

My pdocs use bp to determine stress levels.  If the bp systolic is over 130 then they consider your anxiety levels high and may adjust one of the meds upward. If the systolic drops below 100 then it is time to decrease one of your meds. They also follow the same method when handling weaning off a drug. If systolic above 130 then reduce your rate of withdrawal and if less than 100 increase the rate of withdrawal. I have found it works pretty well. I wrote a detailed post on this about a year ago.


#17 Merete

Merete

    Advanced Member

  • Members
  • PipPipPip
  • 35 posts

Posted 13 July 2017 - 12:19 PM

Hmm, well I'm at 170 so that is well into the high range then. I really don't want to go back on a higher dose of cymbalta again though. I have been on 30 mg for a couple of weeks now and was hoping to just stay there and hopefully things would stabilize. The good news may be that the visual disturbance, dizziness and headaches are bp related not FM so hopefully a temporary phenomenon. Thanks!

#18 fishinghat

fishinghat

    God-like

  • Active Members
  • PipPipPipPipPipPipPipPip
  • 6,826 posts
  • LocationMissouri

Posted 13 July 2017 - 01:04 PM

Hi Merete

 

Usually the dizziness and visual disturbances are the first to fade so when that happens you know you are turning the corner. Patience my friend.


#19 Merete

Merete

    Advanced Member

  • Members
  • PipPipPip
  • 35 posts

Posted 14 July 2017 - 12:04 PM

BP down under 150 today so going in the right direction! I am off to a weekend on our little farm in the Cypress Hills to putter in my garden and start a new knitting project and hopefully get lots of sleep! Hope everyone has a great weekend
Merete

#20 Merete

Merete

    Advanced Member

  • Members
  • PipPipPip
  • 35 posts

Posted 25 July 2017 - 02:33 PM

Been doing really well and decided it's time to get on with the second half of the taper. Was going to start this morning but all of a sudden everything has flared up again. Feel like I have been pulled naked through a barbed wire fence in a snowstorm as the cowboys around here like to say. So frustrating. Oh well, give it a few more days I guess. If only my brain would clear a bit I could cope with the pain so much better!

#21 fishinghat

fishinghat

    God-like

  • Active Members
  • PipPipPipPipPipPipPipPip
  • 6,826 posts
  • LocationMissouri

Posted 25 July 2017 - 02:40 PM

There is new research out there that when weaning a patient can use bp to determine when to reduce more and when to hold. The principle is simple. As your resting bp systolic approaches 120 you should consider holding. If your bp starts to approach 90 you should begin dropping again . This has worked well for me in my lorazepam withdrawal. If I remember right you have a history of high b p so it may not work for you.





0 user(s) are reading this topic

0 members, 0 guests, 0 anonymous users