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Posted 5/12/2011 5:47 PM (GMT 0)
This is a good link describing many of the medications members are taking.  It also describes the difference between dependence and addiction.  You do have to remember that if your body becomes dependent on the medication you might need more and more to get the same relief.  If you need to get off the medication then you have to be weaned off it or suffer withdrawl symptoms, it is my understanding.

 

Another problem is, many are taking combinations of these medications and really shouldn't be...according to this.  I'm not a doctor or a pharmacist but this seems to be a problem.

 

By the way, I've taken narcotics before...morphine, darvocet, and demerol.  And then there is codeine and dextromethorphan in my cough medicine.  I'm not against narcotics but I don't want to go that route for fibro if I can help it.  I will have to exhaust ALL things, including exercise, massage, acupuncture, prayer or meditation, etc., before I would start using narcotics.  I know a lot of you think this same way.  But, some people have far more pain than others. 

 

Anyway, this link is from the National Institute of Health...actually their branch called the National Institute on Drug Abuse.  I learned a lot reading this and I hope you will too.  It is soooo very important to be your own advocate.  KNOW what you are taking, the side effects it can cause, so you can be an active participant in your own health care. 

 

http://www.nida.nih.gov/infofacts/painmed.html

Sherrine 

Posted 5/13/2011 12:38 AM (GMT 0)
Some great info Sherrine!! There are also pill interaction sites which have given me some better info than the doctors and pharmacists.
Posted 5/13/2011 6:57 AM (GMT 0)
I do not have to exhaust all of the alternatives to medication first. Instead I consider good pain management as one that meets the needs of the person. Moreover, there are things I could not do, like swimming, until I took medication.

I remember being told that a wheelchair would be bad for me because once I began using it, things would just go downhill.

I discovered, the wheelchair got me out of the house and kept me active socially. Moreover, I was able to go the the pool several days per week, take tai chi and aquatics classes and attend graduate school.

Without the chair and meds, I could not have done these things. The situation changed when Washington State made it difficult for my doctor to prescribe what minor pain meds he was giving me. I tell you, three years without relief was hard. I ended up staying home more, and swimming and exercising less because I hurt so badly.

My doctor finally found and referred me to a great pain management center. Thank goodness. I suffered those three years.

One of the first thing the specialist said was she wanted to get me back into the pool, ow wonderful, I missed that life.

So, yes I do other things to ease the agony but my medication is a major part of my self care.

I hope everyone finds great relief. Suffering is not mandatory with fibromyalgia. Help is available.

Donnaeil
Posted 5/13/2011 10:09 AM (GMT 0)
Thank you so much for this link, Sherrine.  No one will ever know the Hell I have been through from taking a drug combo that turned on me.  It has been more than a year of sheer agony and I am not out of the woods yet.  Others have taken these two drugs with no problem but I did NOT listen to my body.  Everyone is different....we have said that on this forum a million times.  For me, the pain of fibro is nothing compared to the nightmare of addiction and the long process of weaning off properly.  But...that's just me.

Donna

Posted 5/13/2011 1:46 PM (GMT 0)
Donnaeil,
I totally get what you are saying and have been through. Without pain meds, I would not have been able to function as I have for over 20 years, I know that. For me, it wasn't the narcotic, it was the long list of other meds I was put on that did me in. Thankfully, I found a psychotherapist that helped me get off of 8 medications. It took over a year, but I'm off of them and so happy I was able to do it.
I just wish doctors were more tuned into the side effects of the drugs, at least the docs I've seen, have NEVER discussed the possible side effects or interactions of drugs. Had I known that taking some of the meds I was taking were actually causing more severe depression, I would have never started them.
M
Posted 5/13/2011 2:10 PM (GMT 0)
In my case, I believe my pain tolerance has increased throughout the years even though my health issues keep mounting. Maybe I'm getting better at distracting pain or have become used to it.

Vicodin was something I took on a daily basis for a year a long time ago. I know that some of my meds are toxic immunosuppressants...but I really do not have a choice. My med combo has a moderate to severe warning....but I'm between a rock and a hard place and just hope the meds are not hurting me more than my conditions. Luckily I have bloodwork every 6-8 wks to check!

Hugs, Robin
Posted 5/13/2011 4:43 PM (GMT 0)
Donnaeil, I'm very happy that you have gotten relief.  I've said many times that we all have different pain and what works for one doesn't necessarily work for another.

 

I like to show that there are other options, too.  Just because you have fibro, it doesn't necessarily mean you have to be on all these medications.  Doctors are taught to give medication for most every problem.  It's the first thing they think of and that's not all bad either.  There are many life-saving meds out there.  But, I've been given drugs by good doctors that have harmed me, too, so now I research things before I swallow them.  I've managed working around fibro using far more natural things plus ibuprofen and Tylenol.  I don't have the side effects many are suffering from either.  When these side effects hit, members may think it's fibro when it really could be the medication they are taking.  So, I'm putting out information so everyone will be armed with information.  Knowledge it power and I'm trying to give power to all our members.  

 

We have a lot of young members one this forum and they will be wanting to start families some time in the near future.  This is something that has to be considered, too.  I'm sure they don't want to get pregnant while on some of the combinaton of drugs that are taken.  So, I'm letting people know that they possibly could deal with fibro without all of the medications.  They won't know unless they try it.  That's all I'm trying to get across.  If they can't and have to turn to other meds and narcotics, then at least they gave it their best shot.

 

I know there are plenty of forums out there that talk only about taking narcotics and what narcotics work for what symptoms.  But, I think it is refreshing to find a forum like HealingWell that discusses both narcotics as well as a more natural approach.  We have some members here that are using very little medication but by adding such things as gentle stretches, gentle exercises, massage, accupuncture, chiropractics, creams, and heat, they are in control of the pain and in control of fibro and living a full life to boot. This is far better for your body as well as your wallet.  But, we also have members that have excessive pain and have to take medications.  This thread was actually for them.  They need to realize what they are taking and possible side effects because most doctors don't mention that.  

 

The bottom line is, I'm trying my best to help everyone the best way I know how. 

 

Sherrine   

Posted 5/13/2011 5:11 PM (GMT 0)
As always, thanks for sharing Sherrine. I appreciate everything you do for the forum and all the information you share with us.

I began my Fibro treating with an antidepressent. Since I was diagnosed at a young age I was determined fromt he beginning to not be on a lot of different medicaitons. I knew one day I wanted a family and I'd have to come off of all the medications. So my Dr. and I decided that an antidepressent was the way to go. I was on Effexor XR for over 3 years. While it did the trick for the pain and anxiety (most of the time) I hated the side effects and coming off of it was the most horrendous experience ever. I vowed to never go back on an antidepressent as long as long as I could avoid it.

I tried a muscle relaxer as needed but had an intolerance. I decided then that at least until I'm done having children and they are older I would go medication free. I've done many different things to help me learn to live with the pain - meditation, deep breathing, stretching, walking, heat, ice, participated in a pain management clinic etc. While I know I am suffering more than I would be if I chose to take medications I still remain "stubborn" (in the eyes of some Drs.) I prefer to think I remain "strong". I pray that in the end it will pay off and I will be blessed with beautiful and healthy children one day. There are some days when nothing helps the pain and all I can do is cry. This happened the other night, I cried for 10 minutes and I was done. Sometimes all I need is that release. I am also very glad that I have learned all these different coping mechanisms because I recently learned that I will not be able to get an epidural during child birth due to a blood disorder I have.

I know that this is right for me at this point in time. What is right for me may be different than what is right for others but I appreciate having all the information to help me make my decisions.
Posted 5/13/2011 5:31 PM (GMT 0)
You are soooo right, Frankey.  I have a friend whose daughter discovered whe was pregnant and had to stop Zoloft and Xanax cold turkey.  It was not a pretty sight.  Every doctor that prescribes this class of drugs should ask about plans to have children before handing them out.  I received something in the mail about a class action lawsuit concerning Lexapro and birth defects.  I am an 'old broad' and having children is no longer in my future but I still wonder how this law firm even knew I had taken Lexapro. smhair

Donna

Posted 5/13/2011 5:46 PM (GMT 0)
What is interesting is the assumption that I was talking about narcotics only, I was not. Furthermore, the other forums on Healing Well do discuss medication. In the Chroh'ns Rheumatoid, Arthritis, Cystic Fibrosis and other forums medications are discussed thoroughly.

Many people would not function without them.

I realize that since the medical community has increased focus on fibromyalgia, it often seems like we are a part of a big experiment. The prescribing of meds like Lyrica, INSAIDS, Tylenol and other drugs can cause problems.

Ibuprophen is dangerous when used too frequently, Tylenol also. In fact opiod therapy is less harmful to the body than these two medications. Liver damage is on the increase in America because of these medications.

I had a friend who was a professional football player. Due to Tylenol, his liver and kidneys failed. He had to stop playing and eventually ended up on dialysis. It was hard to see someone, who was the father of two young children, suffer.

So yes, you are correct when you say we have to investigate over the counter and prescribed drugs.

I have medications that I have to take, period. There are no ifs ands or buts. lol. I am between a rock and a hard place also. However, I choose the rock because I and my children would suffer if I did not take my medications.

I hate that I have to be on medications. However, I realize that we are individuals and what works for some may not work for me. Moreover, what I choose to take is my responsibility. Further more, the side effects of chronic pain like increased anxiety, misery (lol) and according to my children, grumpiness does not work for me.

I also think this subject brings out my defenses due to our family history. When my daughter was a teenager she became deathly ill. A classmate told me she would not rely on Western medications and treatment because she thought they were bad. She would only use natural alternatives.

I told her that since she did not have a child and had not faced such a terrible disease, she really did not know what she wold do. As a parent I felt I had to use what was available. Fortunately, we had the top man in the region (five states) who was noted for this type of disease.

My child suffered with and without the meds. She had to undergo emergency surgeries. The medications made her a miserable zombie. But, I gave them to her. She is much better now but has to live with her condition for life.

So, I might seem harsh because of this experience. As I said before, medications are a part of my regiment. Fortunately, I have access to extensive medical research and my work demands that I read the studies concerning the effects of medicines and their interactions.
Posted 5/13/2011 6:17 PM (GMT 0)
Donnaeil, I'm not trying to argue with you.  I firmly believe in medical science.  It has saved my life.  I've taken narcotics, steroids and other medications, too.  Sometimes there is no choice. 

 

Several of our mods are on meds, too, and this is discussed openly on this forum.  Chutz, Jeannie, and Getting By do use some of these medications.  They get relief from them.  I don't, and I manage very nicely without them so I want to let members know that some of them might be able to do this, also.

 

Percocet and Vicodin are two of the most widely used opioids and they both contain Tylenol.  They just took Darvocet off the market for this very reason.  A good doctor will run a liver panel every six months.  Mine does that and I know, so far, my liver has not been affected.  I also am very careful to take no more than the maximum amount.  I don't pop them like candy.  I take them as needed. 

 

I'm definitely not one to run to the health food store.  I really believe in our wonderful doctors and hospitals.  But I also believe in arming myself with knowledge so I can make the right decisions for myself.  My husband and I left the decisions about his health to our doctor up north.  We told him about all the symptoms he was having and he assured us that my husband was suffering from stress.  We believed him and never researched it out.  He dropped dead at age 51 with a massive heart attack.  So, I, too, have a family history and because of this, I research things and check every aspect of what I'm searching. 

 

I'm "big" on giving people many choices and then leave it up to them to decide what is best for their particular circumstances.  I'm glad you are taking whatever it is.  I do find it a little odd that you won't tell us what you are taking that is helping you so much but that's totally up to you.  You are getting the relief you are looking for and that's good.  I also want people to see that they just might not have to take these medicatons, too, and still have a full and enjoyable life in spite of fibro. 

 

So, here's to a good life in spite of fibromyalgia.  Whether you take narcotics or can manage the more natural route, quality of life is what we are all reaching for!

Sherrine 

Posted 5/13/2011 8:59 PM (GMT 0)
Sherrine, first off, thank you, for all the research you do and for then sharing it with us. I for one really appreciate it.
I do understand what Donnaeil is saying/feeling. I think those of us that have depended on prescription medications to function as normal humans are made to feel guilty...not by you...but by the public in general and by many doctors. I myself have been accused of being addicted to pain medication and this was almost 20 years ago when I was taking approximately TWO Vicodin a day!
I find myself questioning myself a lot...do you really need the pain meds? Can you function without them? Yes I can function but at a much lower level than what will really make me happy. I love to exercise. I love to care for my own home, run my own errands, go spend time with my mom who has Alzheimer's and there is no way I could maintain this schedule without the use of pain medications...not to mention I also work! Without pain meds, I would be in bed most of the day or lying down on a couch.
I went to see a pain management doctor just a couple of days ago and we discussed Vicodin and she wanted to know how much I was taking and I told her and she said the issue is NOT the amount of narcotic, it is the amount of Tylenol. My question is then why not make a pill with less Tylenol and more narcotic???
Anyway, I rambled and I apologize...I really wanted to thank you Sherrine...as much as I know I get defensive about using pain medication, I do appreciate your efforts and time and all the information you share
love to you,
Miriam
Posted 5/13/2011 9:30 PM (GMT 0)
Thank you so much, Miriam, Denise, Donna, and Frankey.  I do try. 

 

Yes, I totally understand what you are saying.  No one should feel guilty for taking medications prescribed by them by their doctors.  It's not like you are getting them off the street!  Many people need these things and I thank God they were available to me when I needed them.  Medications are the way that doctors are taught to "heal".   I just wish they would suggest over-the-counter and some other alternative things before getting out the prescription pad.  Some that are taking this stuff might have been able to handle fibro in a more natural way.

There is just such misunderstanding about this illness and we all pay a price for this.  But I sure would love members to try the more natural way of dealing with this illness first.  If they have too much pain, then of course you need something stronger.  Quality of life issues are important.  It's important to be able to function and enjoy your life.  I am able to do this with no narcotics.  Will I always be able to?  I don't know.  If and when I come to that point, I will have to make more decisions so I can maintain quality of life.  But right now I'm hanging tough.

By the way, the FDA is now wanting drug manufacturers to put less Tylenol in the opioids but it probably really helps the medication work with the pain.  I know Tylenol helps me in conjunction with ibuprofen.  By itself it does nothing for me.  It was trial and error that I came upon this combination so that's why I share it. 

 

Please, no one should be on the defensive for using what they are using.  If I had intense pain and could not function, I would probably be trying some of the pain medications.  BUT I know for darn sure I'd know EVERYTHING about the medication and what it interacts with.  This was the whole point of this thread.  I want members to learn and understand what they are taking.  This allows them to make educated choices with their healthcare.

 

Sherrine

Posted 5/14/2011 12:20 AM (GMT 0)
Sherri- Thank you for all the hard work you do! I appreciate you sharing all the treatments that might work for FM. I have had FM for many years and all I was told to do was to take large doses of narcotics.  For many years I did that. After being on narcotics for so long my body became very dependent and then addiction set in. I lost my job, almost my family and became suicidal. I was never told about natural ways to help FM. Finally I was able to go to treatment because I wanted to try something different to control my pain.  I am on subutex which has less problems with addiction and doesn't fog your mind or make you sleepy. They are using this a lot in pain clinics for chronic  pain. I just found out they made a patch. I wish I knew all the info that you are sharing with us years ago.  Ever since I have been reading about FM my symptoms are much better because I am learning how to manage it. I sometimes wish I could take a stronger narcotic, but I have a addictive personality which can cause many problems. We are all made so different and that is why somethings work for you and not for me. I am kind of  glad that God made us different. lol yeah
Posted 5/14/2011 4:37 PM (GMT 0)
Angel, I'm so sorry you went through all of that.  My doctor suggested Lyrica and Savella and I said no thank you.  So many members gain weight on that and I can't gain weight because I'm diabetic.  I worked hard to lose 85 pounds and improved my blood sugar levels by doing so.  It makes me wonder why he would suggest that.  But you see, they know what the drug reps tell them and I'm not sure they know all of this is going on.  Pharmacists generally know more about medications and their interactions.  I have a wonderful pharmacist and bend his ear all of the time. 

 

I'm just old enough now to check things out and perhaps do something different.  I'm doing that with my osteoporosis right now.  I'm not sure if I made the right decision but I won't know unless I try.  I did it the doctor's way, took plenty of expensive medication for four years, and every scan has come back worse.  So, I decided to take matters in my own hands.  I found out that these drugs could possibly make bones brittle.  I have read so many stories about people breaking bones while on the drugs.  I thought these were to prevent that from happening! 

 

I am now eating foods that will help with bone remodeling and keeping my body in good pH.  I am doing special exercises that can help strengthen bones and I stopped the medication I was taking.  I figure I can't do any worse than the doctor's way!  tongue   

 

It sounds like you are doing better now and I'm happy to hear that.  I'm glad the people on the forum have been able to help you, too.  It really is great to hear you aren't the only one with these problems and sometimes you get tips that help you, too.  I'm glad you are here.

 

Sherrine

Posted 5/14/2011 6:30 PM (GMT 0)
Sherrine,

Thank you for starting this informative topic. I do believe that many of us on narcotics did try the natural way to heal beforehand and maybe it didn't work. Though any medication isn't actually natural, be it over the counter or prescribed. I have been on norco for many years and have had very little reason to want to take anything stronger. It is at the low end of the medication scale. And as always, if I don't need it, I don't take it, though I have to keep a certain level in my system to keep on top of the pain. It and adderall have helped me to be able to do the things that I can do, though I wish I could do more, but at 52, I guess it is only natural to slow down some.

The medication that I take has a little less tylenol in it than most. But I know that the tylenol does help me. And the narcotic part. I just wish they would find a cure for fibromyalgia so we could all get off of so many medications. But that remains to be seen. I am beginning to believe that in order to get rid of fibromyalgia, we need to get rid of all the stress in our lives, and I don't see that happening for me. But I can control how I react to the stress and that helps.

I hope that everybody is having a good day. Whether you take medications or not. For those that need to, well, I hope that you can get them. For those that don't, more power to you. We all deal with this the best way that we know how.

Hugs, Karen

PS  I did read the article Sherrine, and the rate of drug abuse is alarming.  But I must say that I am sorry the actions of a few can ruin it all for the ones who really need the pain medications.  I think that there is becoming a stereotype for narcotic users out there and it really isn't fair.  I take two of the medications noted for abuse.  But I know that I use, but I don't abuse.

Posted 5/15/2011 7:17 PM (GMT 0)
I saw this subject title, and had to check it out. I read through the postings, but did not check out the website yet.

I'm going to say something that may shock folks, and surely don't mean harm by what I'm going to say. I say it only to help and give an example of what Sherrine is talking about here.

Here goes:
I have to say that Sherrine used to drive me nuts on here. I didn't even like her so much. (I know you can handle this, Sherrine, so please bear with me :) I didn't know why I felt this way, as she is a nice person and has many great ideas and lovely things to say. But I had something to face last October that made me realize what was going on.

I had become addicted to several of the medications that I was on. Admitting it, was so very traumatic and scary for me. Some of Sherrine's posts talked about other ideas for treating my fibromyalgia....ones that did not include my vast array of meds. It scared the crud out of me, and I didn't want to hear about it.

Admitting that I was an addict was very hard, and I felt like I had opened pandora's box.....but there was a relief in it also. The drugs I was addicted to were narcotics, 2 types of sleeping pills, anti-anxiety meds (benzos), and an upper of some sort....for a total of 5 drugs. All prescribed by my doctors. It took 2 1/2 months, but I was weaned off of them. Some of the drugs I had been taking for almost 20 years. Withdrawals are not easy, but I survived. It has been a long road, but well worth the effort.

I am not against all medication now because of this....there are times that it's needed. I still take prozac for my OCD and nabumatone (anti-inflammatory) for my fibro. Yesterday I helped my husband out in the yard, and today I'm hurting for it. But I'm going to take a nice bubble bath, relax with my laptop etc......

Well, I've rambled on long enough.....but what I'm trying to say is that it wasn't Sherrine, it was me. I found out I really liked her, it was my addiction that was freaking me out when she posted. No one here may have a problem with addiction, but just know it is something to take a look at. I only tell what I've learned for other folks who may be struggling.
Posted 5/15/2011 8:51 PM (GMT 0)
Myjoy...I am so glad you posted and told your story.  I know for a fact that our friend Sherrine suffers from many other disorders besides fibro and if anyone would feel justified by running to narcotics and other prescription painkillers, it would be her.  She is tough on us sometimes and even when she gets a verbal lashing from a member who does not respect her opinion she keeps coming back to help us.  I do not believe her pain is any less than the rest of us suffer with but because of her convictions she keeps on, keeps on, and has a fabulous life that I at times, envy.

It was Sherrine who got me to recognize I was addicted to valium and she was right.  It has been a horrific, long ride for me, getting off the stuff that did so little to help me to begin with.  Benzo's are the most addictive drug on the planet and it can take months to get out of your system once you wean off.  They are currently under investigation in the UK and other countries that understand the dangerous, addictive nature of these drugs, and may soon be off the market except for anesthesia and conditions such as seizures.

Okay...no need to beat a dead horse.  And...not to put down anyone who cannot function with out help.  It is better to function on a drug that helps you stay productive and pain free than to become a martyr and suffer.  It is also important to know what can happen somewhere down the road, which this post does.

Donna

Post Edited (vestabula) : 5/15/2011 4:02:37 PM (GMT-6)

Posted 5/15/2011 9:09 PM (GMT 0)
I believe Sherrine is one of the wisest woman I know. She always gives an objective view and is able to shed a positive light on any subject. She truly is looking out for our own best interests.

This forum is great because it lets us share our own personal experiances of what we have been through...and I thank you all for your courage to discuss some very sensitive topics.

Hugs, Robin
Posted 5/15/2011 11:03 PM (GMT 0)
Oh my goodness!  Thank you all so very much.  I truly appreciate all of you. 

 

As Robin said, this forum is here so we can share our experieces.  We won't always agree but the information is out there that will touch lives...members as well as lurkers.  I believe we are all here on earth to help others and that's exactly what we do on this forum.  We have THE BEST members!  We jump in to help others even when we are miserable ourselves.  So many are dealing with some really miserable illnesses on top of fibro, too!  Plus it shows that we really do care about each other. 

 

Thank you, again, from the bottom of my heart.  Oh, myjoy, thank you for being so honest.  And, yes, I CAN drive people nuts but I'm lovable!  tongue yeah

Sherrine

Posted 5/15/2011 11:33 PM (GMT 0)
Hi Sherrine - glad we are still on speaking terms and everything. :o) love ya!
Posted 5/16/2011 4:01 PM (GMT 0)
There was an article on the news this morning about the dangers of too much tylenol. It does effect the liver. Just for your fyi. I think taking the least amount of any type of medication is best. ONly take what we need. And no more. Though I know we have to keep ahead of the pain. It becomes difficult sometimes. Pacing ourselves is so important.

Yes, Sherrine is wonderful and so insightful. We are lucky to have her.

Hugs, Karen
Posted 5/16/2011 11:32 PM (GMT 0)
Hi Sherrine, just wanted to let you know how much I have appreciated all the suport you have given me. I know from living with fibro that there art times where you too feel like throwing in the towel, but you never complain you are always here to offer support to the rest of us. Thankyou from the bottom of my heart.

Gentle Hugs
Shirley
Posted 5/17/2011 4:13 AM (GMT 0)
Wow, now if politicians could only be as reasonable as we are here, really trying to understand eachother, we'd have a better world!

Debbie
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