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Benzodiazepines: Help or horror?
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1957dg posted:
Hello, Dr. P

I have been a Fibro sufferer for about 16 years now. My condition is quite severe. I am unable to work and I have modified my life around my fibro and feel that I have been successful. I too am a writer and I agree that it is a fantastic diversion. My doctor, who has now retired, had me on a Klonopin and Paxil. Over the years my tolerance to Klonopin has taken me from 1 mg per day to 6 mg per day. My Paxil is 20 mg daily. Many doctors have been outraged over the amount of Klonopin prescribed by my former doctor. My new doctor has called me an addict and suggests Tylenol.

I understand the downside to benzos and I am not a pill seeker -- but -- this combination has given me my life back to a degree I never thought possible. Now, I am uncertain and scared. Research into benzos can be a bit harrowing and I do not know if I have created for myself a help or a horror. I am open to other medications, other therapies, anything that will relieve the pain and fatigue. Your thoughts?

Thank you!
Reply
 
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xperky responded:
I find a small dose of lorazepam at bedtime helps me in many ways. It keeps me from having tremors from the nerve demylination I had from possible MS. It also keeps my chronic anxiety in check, helps me fall asleep, and relaxes my tight FM muscles.

Our bodies do become dependent over the years. I'm sorry your new doctor is so abrasive about the issue. I wonder if he would be willing to substitute a muscle relaxer. Studies have shown that they help most FM patients. Of course, they might cause dependence over time also.

I'm not so sure that Tylenol will be the only medicine you need to cope with a severe case of FM! Does this new doctor believe in treating FM?

It is my opinion that you should not go cold turkey off the medicines! It is dangerous to stop cold turkey.

I imagine you will receive some more posts with suggestions for you. I'm sorry you are compelled to change the medicines you are comfortable with.
With Compassion,
Margaret
 
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Teelady1 responded:
I'm sorry your Dr is making you feel like an addict. Doesn't sound like this Dr knows much about treating severe FM. Have you considered seeking an opinion from another Dr? I agree with Margaret, I don't think just tylenol is an answer to the medications you're taking now. Especially since your managing your FM with more than just tylenol right now. At the very least, if your Dr has a concern about the klonopin and wants you to come off of it, there should be a better suggestion than just tylenol. (in my opinion.)

I will add that if you do decide to get off of the klonopin, please work with your Dr to gradually reduce your dosage and slowly withdrawl from the medication to reduce the side effects.

I was on klonopin for about 1 year for anxiety. I took 1.0 mg per day. Even with that low dosage and gradually reducing the dosage over a couple of months, I experience some withdrawl side effects - primarily headaches and trouble sleeping. (Then again, I always have trouble sleeping - but it was worse while I was coming off the klonopin.)

I can only imagine that since you've been taking klonopin for a longer time than myself and at a higher dosage that the withdrawl process will have to be a very gradual process - which may take many months.

Good luck and I wish the best for you!
 
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1957dg replied to xperky's response:
Thank you, Margaret for your compassionate response. Having severe FM is bad enough, having to suffer from withdrawal is a terrifying thought, indeed.
 
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booch007 responded:
Good morning,

I tried posting to this in the past and I couldn't get it through. I try again.

Benzo's have many meds in their class, Valium being the oldest. Valium is a great muscle relaxant. I have 10mg tablets for when I am over the top in terrible pain and spasm...

I have also used 5mg for sleep on top of my muscle relaxer when I needed help.

The problem of dependence is there as you move forward and if you use them all the time. I get 1 perscription a year and use it sparingly....

Benzos also can give depression so it is a catch 22.....better to use an actual muscle relaxant (I use soma) it is a 2 for 1 med. A sedative first and then muscle relaxant second. It changes to Milltown chemically for sedation so it helped me sleep and then the muscle relaxant so my morning wasn't so hard.

Maybe you can present the fmilys thoughts to your physician. They are so cautious of things. Soma is not a "controlled drug" at this time, but it is monitored now due to childrens abuses....

Klonopin is good for anxiety. Maybe it IS time for a change and see how dependance happens, you start needing a bit more to feel the same result.

I am on my same meds now for about 10 years and I am doing well, more non medical then pills. Maybe playing that up with the doc will help too. I am so not a pill person. 9 meds in the morning most are supplements.....make sure you have your supplements right also.

Dr P had a post on his usual mix for patients, look into that. Click under him...or do a search over him to find it...in the "search this community".

Also look in the toolbox undeer resources. It may give you ideas to help stabilize some issue you are having.

I hope you get the help you need. My best, Nancy B
 
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1957dg replied to booch007's response:
To Teelady1, thank you and I agree that if I do change any medication, it should be done gradually and I believe any compassionate MD would insist on that.

I have found another doctor who is an internist and I will be seeing him in a couple of weeks. I did go to my local ER and got some meds to hold me over.


Nancy B: Your feedback is amazing and I will discuss the suggestion regarding Soma with my new doc! Change is inevitable and I am not opposed to trying something different, or, perhaps, better. I'm not happy this happened to me, but I am really pleased with the responses I have gotten here! Sometimes bad things can lead to something good and all of your responses have given me a great deal of support in knowing that I am not alone and there is compassion out there! Which is in itself -- very good medicine.

God bless.
 
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booch007 replied to 1957dg's response:
I just saw an "Independant Medical Reveiw" for my injections and I have to say he asked every question all the way to 13 years ago when I got hurt. Good thing I will never forget* that day.

In saying that I told him how EVERYTHING in my life has changed from this, my dishes....my posture..my washer and dryer. The thinking of how to walk with packages to support my neck and weakness..

I think in a way I am better now. Before I ran around for everyone else and then ME. Now I MUST think of me and am I OK to do that...it gives you pause and reflection in your life....

A time to smell the flowers a bit. Look around and see* the world. Instead of running through the world.

Gee I hope he hears you and it helps you. My biggest change for my body was to hydrate and I was put on a lean and green diet...ONLY GREEN THINGS, to detoxify me. It gave me so much and I try to stick to that still. I eat apples....and occasional other choices for a party. But right now, I think I am as tuned as I can get with this dragon skipping alongside me!

Give it time and persevere against him. I said I will never take off the boxing gloves to fight the mess I am in. SO, all my best that a tune up is just around the corner.

Remember too, soma may knock your socks off when you start it....so 30 minutes before bed and be IN bed.....loopy is a good description...better is the result.

Hope this helps. Nancy B
 
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Mark Pellegrino, MD responded:
Hi 1957dg,

Hello fellow fibro-suffering diversionary writer!

You've certainly done your research and have educated yourself on the pros and cons of using benzos long term. Everyone's situation is unique and the goal is always to optimize one's quality of life and making sure the benefits of any treatment outweigh the risks.

Klonopin is often used as part of fibro treatment, and dosing requirements are based on each person's response. Doses may need to be adjusted over time to optimize therapeutic benefits.

Doctors' comfort levels with meds such as Klonopin are highly variable, as you've discovered. If a specific doctor is uncomfortable with prescribing a certain medicine or a certain dose, it does not mean the medicine is dangerous or ineffective. It does not mean that one is an addict.

Treating fibro is always a dynamic process requiring an effective doctor-patient relationship. Not surprisingly, one of the most challenging times for a fibro patient can occur when one has leave a successful doctor-patient relationship, for whatever reason, and try to find a new one.

I think one of the best times to explore new treatment options is when one changes doctors. It's a natural process: you and your new doctor getting to know each other, your fibro and your treatments past and present getting reviewed, and your future course being planned. I hope you can work well together with your new doctor.

This site has much helpful info about different treatments that you and your doctor may be able to explore.

Good luck!

Dr. P
 
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maggiethedoglover replied to booch007's response:
Hi Nancy B,

You are an amazing woman for your knowledge and your willingness to share it with anyone. I salute you and remain thankful that people like you exist in this world and make all of our journeys through life a bit easier.

Many soft hugs,

maggie

Life is a shipwreck but we must not forget to sing in the lifeboats - Voltaire
 
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Stirrings responded:
Hello co-fibo sufferer. Terribly concerned you might stop the Klonipin and paxil cold. I did, and wound up in ICU and then the psych ward. Please be careful! I too am at a cross-roads with docs. I hate to change so bad! But I'm just not getting the help I need. Perhaps we will both will happen on something good. I'm still withdrawing and struggling with severe depression right now. I recognize it as a chemical thing, but I am so afraid of these meds now! Tylenol is not the answer though. I'm doing that now and I can honestly tell you that you need your meds! I hope all goes well for you. Blessings, Annie
 
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1957dg replied to Mark Pellegrino, MD's response:
Thank you for your kind response, Dr. P! I have found an EXCELLENT MD, just saw him this morning. We will continue to taper off the Klonopin and he has recommended Lyrica and Gabapentin. I will be remaining on my Paxil.

You are so correct that it comes down to the right doctor and doctor-patient relationship. I cannot emphasize how very, very important that is. I might add that since reducing my Klonopin, I am experiencing more natural sleep. That is to say, I had some interesting (and fun) dreams last night.

Since there is no cure for fibro, we will always become dependent (a term I prefer to 'addiction') on our medication. I feel so fortunate to have found the right doctor, because in the end, it's not really about the meds. It's all about compassion and I have found a great deal here on this site.

Thanks to everyone for being so supportive.
 
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1957dg replied to Stirrings's response:
Hi, Annie:

Sorry I missed your message, it's been a while since I was here. I did, for a time, stop both the Paxil and the Klonopin for about a month cold. I didn't end up anywhere bad, no ICU, no tremors. I did have clearer dreams which probably meant I was getting more REM sleep.

I am on my second doctor, who is an internist and I'm not sure we are clicking. I'm frustrated, but determined to not stop, there are tons of docs where I am. Don't be depressed, Annie! I don't think you should be afraid of any meds, just be informed. Sometimes, we look stuff up on the internet and find worse case scenarios and things get out of hand.

Everyone is different and all precautions should be taken by anyone prescribed medication, but information can get blown out of proportion.

Lyrica (50mg, 3x daily), which I took for 2 or 3 days made me ill. What works best for me is 20mg Paxil and clonazepam is for sleep. Like Tylenol, which I am avoiding now, I want to try something anti-benzo, if there's such a thing. I am thinking about muscle relaxers. But, research of that class of drugs shows many are simply derivatives or are members of the benzodiazepine family.

See, I'm freaking myself out on-line. I know.

What Doctor P points out really well in his reply, is that it is all about the doctor/patient relationship. A doctor who is willing to know you best and know what's best is not always easy to find. That relationship is something that can be hit or miss and even then ... it takes time.

This January I'm booking an appointment with a rheumatologist. It's an uphill battle, probably why we hurt so much! Hang in there and I'll promise too.
 
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fibronj responded:
I had the same problem when I changed doctors. I have used Lorazepam .05 m.and he didn't want to prebscribe it. Wanted me to see a psycologist. This made me see a rheumatologist who changed my life. It's all about the proper diet. He recommended a site that got me on the way to start making changes. Today I found a website, that really put all the information I have been reading about on how to reverse fibromyalgia. I'm working on my sleep pattern and hope to one day be totally well again. Here's the link... it's a lot of reading, but it's well worth it. First thing I got rid of was gluten, then went on to organic food. Little by little I am making changes.


Here is the link and good luck!

http://www.fibro-info.com/

This is the link that the rheumatologist recommened and got me on the way.
http://www.lef.org/protocols/immune_connective_joint/fibromyalgia_01.htm


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