Seeing Red and Feeling Blue

9:30pm
Sleep: 8 broken hours. (2 times up)
Symptoms: Shooting pains in legs, shoulder, neck, and pelvis pain. Headache. Scary weakness and shakiness in legs for a couple of hours earlier.
Pain pills yesterday: 3
Pain pills so far today:41/2


My doctor and I have been emailing back and forth with ideas on my treatment. He's nice but inexperienced in fibromyalgia /chronic pain syndromes and so he often uses rhetoric that makes my skin crawl. I sent him a video a day or so ago that had the latest Stanford research in it. He hasn't had time to watch it so I gave him the gist. He decided to add yet another nugget of helpful advice... once again inciting my frustration. I shall share:
-"thanks for the "low down" on the video. I'll plan to skim it. What was said seems to fit what we see as well. Pain meds only blunt the pain, and escalating them is a "dead-end street."


"as you probably noted in the video, good lifestyle with sleep, eating, and exercise is still thought to be paramount to the overall plan"




This pisses me off for two reasons... he, like most people seem to think pain medication is optional. Like there's something else he's offered or that I am just doing it for my own pleasure. 
Second he noted lifestyle references in the video... without watching the video or asking me what my lifestyle actually is.  This is getting a little irritating because it's the first thing that everyone assumes. 


Here's my response:


Dr _____,

When I first read your reply, I was angry. Partially because I'm in severe pain today and partially because it reiterated some frustrating elements of this last decades struggle.
I know you mean well but the lifestyle comment just illustrates a common prevalent attitude toward this disease... that it's somehow within the sufferer's control and implies that my lifestyle is somehow not good already.
I eat very well. Lots of vegetables, fruits, and whole grains... with mild amounts of lean protein. I allot at least 8 hours for sleep every night although I am often unable to fall or stay asleep very long. My caffeine intake is limited to one cup of coffee or espresso early in the morning. I drink lots of water all day including herbal tea. I don't eat a lot of sweets and I don't drink juice or soda.
Barring this latest bout of extreme pain which began in August and the last three months of my pregnancy, I have always been an active person and diligent exerciser. My workouts usually involve a minimum of 20 min of yoga or low impact cardio a minimum of 5 days a week with appropriate warm up and slow down stretches. Even with the pain since August, I take my little boy to the park and walk around the house with him as much as I can.
I also meditate, and deep breathe several times during the day.

So you see, for the past decade, I have been doing everything in my power to battle this with the tools at my disposal. And it has done nothing but escalate. 

I have also done extensive research with my condition. Pain medication is not only recommended to ease the stress of the condition, but it has been found that although dependence may occur, the incidence of addiction or tolerence is low when used in the normal dosages and with use for chronic pain. And I wasn't asking for more...not yet anyhow... I just wanted to see the dr sooner.

I really want to try more trigger point injections and maybe an antibiotic regimen as there is a lot of research suggesting that there is a chance that fibromyalgia and chronic fatigue are just variations on Lyme disease and that low-dose long term antibiotics can combat the disorder. I also would be interested in trying Lyrica or other new drugs to combat the pain in other ways. I have also found relief with a combination of muscle relaxants and pain medication when I have issues like this leg thing which is essentially a nerve/muscle spasm combo pain.

I feel a little like when I call the tech support for help with my computer... often times they ask questions like whether I have it turned on or if it's plugged in. There is a strong bias toward operator error and in most cases they are correct. But I usually tell them, that I am not a basic user, can build a computer and if I ask for help it's cause I'm at an impasse. It is the same with my health. 

Like I said before, I know you mean well, but this disease is frustrating enough without have people imply that I'm not taking basic care of myself and it's painful enough without having to beg for pain meds so that I don't lose my mind before we find an adequate treatment plan. 

Thanks 
Lisa


He quickly backtracked and apologized, telling me that I obviously take very good care of myself.  I hope anyone who wonders the same thing about me, can see I do as well.  As for my doctor...we'll see if I keep him. This relationship just might not work out. Getting so tired of this crap.