Archive for July, 2009

The war on drugs

 There is no solid research showing that narcotics are useful in treating fibromyalgia pain.

Past research suggests that people with fibromyalgia have a reduced binding ability of a type of brain receptor that is the target for opioid painkiller drugs such as morphine. http://tinyurl.com/l2qrlk . However, there is a subset of people with fibromyalgia that narcotics do help to alleviate pain.

For those unfortunate enough to be in that subset, there is great difficulty in finding health care practioners who are willing to work with the patient in finding adequate pain relief.

There are an incredible number of doctors out there, along with the uninformed public, that believe that fibromyalgia doesn’t exist. To them it’s either hysteria or they believe that people who claim to have fibromyalgia are attention and drug seekers. The patient seeks the diagnosis of fibromyalgia because they don’t want to work or they’d rather just have people feeling sorry for them.

 And then there are the doctors who are adamant that narcotics do not help people with fibromyalgia. Who can blame a doctor for not wanting to prescribe narcotics? There is a lot of paperwork and a lot of scrutiny of doctors who are willing to prescribe these drugs for pain.

Would anybody willingly put themselves in the position to be judged by these people? I don’t like having fibromyalgia. I don’t know anybody who finds joy in feeling like someone took a sledgehammer to their neck and back (and anywhere else fibro lands on your body).

The fact that narcotics help me is a double whammy. I’ve tried pretty much every drug available to help with my pain (even drugs that are not covered by insurance. Incredibly expensive…but unhelpful) but I get no substantial pain relief except from narcotics.

I’ve tried alternative medicine, therapy, supplements, exercise, stretching, hot and cold packs. You name it, I’ve tried it. I’ve even moved down to sunny California because I have fewer flares down here. I am certainly doing much better in the warmer weather, but I still have fibromyalgia and I still have flares.

I’d really rather not be on narcotics. I’d really rather not have doctors and family and friends judge me. But my choice is to take the narcotics and live a more normal life or not take the narcotics and have to watch life pass me by.

When I’m in the middle of a flare the only thing I’m capable of is curling up in bed. I can’t read, I can’t think to hold a conversation, I can’t do anything but just wait for the pain and the muscle spasms to go away.

Oh, I forgot, I can cry. I am fully capable of crying when I’m having a flare. Ask my husband. He just sits there wishing he could hold me but knowing he can’t touch me. So you can see, I made the choice to take narcotics because they enable me to live a life. I don’t have the life I had before fibromyalgia, but at least now I am able to do something other than cry.

You know what I find particularly interesting? When someone suggests that I shouldn’t be taking narcotics due to the “long-term effects”. You mean like the Tylenol that caused my liver damage? Or what about the Aleve I was taking that causes nasty stomach cramps and diarrhea? Well, huh. Honestly? If I’m in pain constantly I don’t really think I want to be around long-term. But that would just be my opinion. And I am not addicted to the drugs, I am dependent.

“Narcotic painkillers are used effectively by many physicians for the pain of fibromyalgia. However, other physicians have avoided narcotics for fear of addiction. Recent research shows that addiction seldom occurs when these medications are used in chronic pain states. It is important to understand the difference between addiction and dependence.” From the National Fibromyalgia Research Association

 If you’re going to be judgmental, do your research. You are entitled to have your opinion…but it should be an informed opinion. Some places to look regarding fibromyalgia and narcotics:

 Sorry, couldn’t be funny today. It was a rough day.  But tomorrow will be better!

Think you have cognitive difficulties?

I had a doctor’s appointment at 8am today. I don’t normally ever make any appointment before noon but they were able to get me in so quickly that I took them up on it.

 I’m new to this area and trying to find a doctor that 1) believes fibromyalgia is real 2) can deal with the drugs that alleviate my symptoms. It’s like finding a needle in a haystack. So I did my research, picked one and called.

 I made sure I went to bed early and took less than my usual dose of sleep aides…just in case. So I didn’t sleep well, but at least I got up on time and was able to work through the usual morning kinks and fog.

 Yesterday I really prepared for the appointment; which was some seriously hard work. Flipped through all my medical records and went through the list of everything I’ve tried (long list) and pulled my records from Patients Like Me where I chart my symptoms and treatment. Wrote out a list of all the doctors I’ve seen and their addresses and phone numbers. Wrote out a summary of what exactly was going on these days. I don’t trust my memory or my ability to get the words out in anxiety-ridden situations. And doctors tend to cause me lots of angst.

 Then I printed out the directions. Check and double check the address and the name, drove downtown through rush hour traffic, found the office on the second shot (it’s always like somebody hit the “off” button on my sense of direction. It is what it is.) and found a parking space. Could be because I arrived 45 minutes early and the clinics hadn’t even opened up yet. But I waited patiently and then got to the front desk, showed her my ID and…

 My appointment is August 20th. Not today July 20th.  What I didn’t check was the calendar. My cognitive difficulties are still alive and kickin’!

 So now I’m home and have the whole day to write a blog post about it. And wonder what I’m going to do about the drug situation. And that is what it is…

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