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Pamelor/treatment for Fibro...I'm new to this corner!

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Posted 6/25/2013 12:54 AM (GMT 0)
Hi, I'm new to this spot, although not to healing well. I have Crohn's, Rheumatoid Arthritis, and now dr. says 'fibromyalgia'. I tried zanaflex first, but I felt drugged all day just taking 2mg in the evening. He switched to 10mg Pamelor, but I'm nervous to try it. One reason is that all the paperwork says not to stop taking it, once starting. Another reason is that I cannot take this and Zofran...I LOVE my zofran. I'm not living on zofran 100%, but it does keep me going and accomplishing my work. (Zofran is anti-nausea, thanks Crohn's)

So, anyone else try Pamelor? What do you think of it, and if you didn't like it, how did you get off of the drug?
What other drugs/methods of treatment are out there for Fibro? Doctor's current philosophy is if I sleep better, I won't be so sore throughout the day. It's worth a try!
Posted 6/25/2013 3:03 AM (GMT 0)
There is alternative ways to get good night sleep without drugs.

Because I'm limited in what I can take because of my lupus and sleep apnea I've had to find other ways.
Others here have other ways to try that work for them.
Because of your autoimmune diseases (Crohn's and RA) you can't use melentonin (sp?).

My methods:
Turn off everything before bedtime
follow a routine of getting ready-bed clothes, medications, teeth, etc...
after laying down turn off lights
I like to listen to old books on tape or a relaxation tape (David Fairweather has a great one on Youtube)
Posted 6/25/2013 4:10 AM (GMT 0)
Hi, Psalm 18:30. Welcome!

I'm glad you found us...though of course not that you have Fibro. Take a look at Fibro 101, (first thread) for all kinds of great information. You'll learn a lot there.

I do take Nortriptyline, the generic version of Pamelor. It works fine for me, and I've been on it for 20 years. My brother and his wife both had bad side-effects from it, though. It gave them nightmares, of all things! You just never know. She could take Amitriptyline, which is only a couple of molecules different, according to my doctor, but not this one. Go figure!

That sleep theory you brought up is one that most doctors who treat Fibro ascribe to today. If we don't get to a deep level of sleep, our bodies can't heal...not that this is curable, but it is treatable. I noticed a huge difference in my pain level when I was no longer waking up multiple times a night.

Don't worry about stopping N. if you need to...that's just a warning not to suddenly stop it without consulting with your doctor. As my doctor told me when I was nervous about starting it, "This isn't a lifetime prescription."

I hope you'll keep posting so we can get to know you - as you know from the other HealingWell forums, we are here to help! :)

Debbie
Posted 6/25/2013 1:10 PM (GMT 0)
Hey, welcome Psalm.

My fave for sleep was Rozerem. I used it when on a decent insurance many moons ago. It was great.

Unfortunately, current insurance schedules this as a top tier drug, and I couldn't justify the extra money.

I currently take generic ambien, which works well enough so long as I don't take tramadol (a painkiller) in the evenings. Sometimes, if I have had a rough day, even the ambien doesn't quite work.
Posted 6/25/2013 1:11 PM (GMT 0)
Ooops, meant to add I too have crohns, and enteropathic arthritis.

Lovely combination, no?

*sigh*
Posted 6/25/2013 5:08 PM (GMT 0)
Hi, Psalm 18:30, and welcome!  I love your name and have that verse highlighted in my Bible.  Now on to Pamelor.  You have gotten some great responses.  I think when it says not to stop it, they mean not to stop it all at once.  You can be weaned off any medication so that's what you would do under your doctor's direction.  I have a friend who has been using this drug for over 30 years with no problems.

 

Sleep is important but I don't use drugs to sleep.  I avoid caffeine in the evenings and I stay on a sleep schedule.  This has worked for me.

 

I use ibuprofen with food, Tylenol, malic acid/magnesium supplements, vitamin D3 supplements, and a prescription muscle relaxer to help with my pain and fatigue.  I also do daily gentle stretching exercises, walk daily as a form of gentle exercise, and pace myself when doing things.  All of the above help me be in control of the pain.  There are links in Fibro 101 about the supplements and how they work in your body.

 

I also keep a positive attitude.  That helps me nearly as much as any medication I could take.  There is a wonderful link in Fibro 101 about maintaining a positive attitude when you have chronic pain.  I have read it quite a few times and I think you will like it, too.   

 

I too have Crohn's and a form of arthritis called ankylosing spondylitis which affects the spine so, as you can see from other responses, you are not alone in that area either.

 

Do read Fibro 101 when you get a chance.  There is a wealth of information there and you will learn a lot.  Good starting links are called Symptoms and A Thorough Explanation of Fibromyalgia.  All of it is good, though, so do check it out.

 

I'm looking forward to getting to know you better.  Don't hesitate to ask questions because we are here to help you.  Hope to hear more from you soon.

 

Sherrine

Posted 6/26/2013 1:18 AM (GMT 0)
Thank you all for your thoughts. This is a new adventure for me. I didn't even notice the post, "Fibro 101"! Thanks for mentioning it.
I do have a schedule that I stick to, for the most part, and don't have a problem falling to sleep. I just wake up sore in the dead of night and in the morning. It's a dull, gnawing pain, mostly in my knees/legs. Tylenol and NASID's don't touch it.

Sherrine, what muscle relaxer do you take? I would really like to try a different one/smaller dose that maybe doesn't make me feel drugged. I'm 5'3"/115 lbs. so 2mg of zanaflex helped, just too much!!

Couchtater: What is melentoin, and why shouldn't I take it? I'm just curious!

Thanks again, and I'm off to read "Fibro 101"!
Posted 6/26/2013 1:48 AM (GMT 0)
I take Robaxin for my muscle relaxer. For me. The first dose put me to sleep within fifteen minutes but after that I haven't been drowsy or anything. It works good for me with no side effects but everyone is different.

Sherrine
Posted 6/26/2013 4:50 AM (GMT 0)
Girly, I'm starting a new thread for you so members will see you. 

 

Sherrine

I am new to this forum. I haven't quite completed all the testing with my physician; therefore a definitive diagnosis hasn't been given. I have been experiencing some of my symptoms for years without explanation; sporadic muscle and joint pain, unrefreshing sleep, severe muscle discomfort with minimal exertion, painful periods and migraines. I'ge completed all the blood test...all normal except vitamin D deficient. I did a home sleep study. They are asking me to trial the CPAP for a week. My pain and fatigue have been so severe. I basically forced my physician to begin treating me while we wait for a more conclusive decision. She's written an RX for nortriptyline. Picking it up tomorrow. Thank you all for being a resource as I begin this journey.

GGWVET

Post Edited By Moderator (Sherrine) : 6/26/2013 10:17:10 AM (GMT-6)

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