Thanks Lene for writing this topic, especially just now!
Today I saw my rheumie and she poked and questioned, and wrote a lot in my file - now she says I also have fibromyalgia. The brochure the office gave me, I read every word after I got home, translates to I'm crazy - making it all up, and just need another antidepressant. I was horrified. Do I have RA, real pain and fatigue or do I have fm, fake fake fake@! I have 2 years of medical schooling behind me, and then we were told fm is about the connective tissue being irritated, but tough to prove. The rheumie offered Neurton, and I refused as I can't think clearly enough to function, so she gave me nothing. She is however switching me from Enbrel to Humira and said it'd take a couple of months to show.
Please comment as I need to understand better about fm with RA. Am I just crazy, making it all up? or do I have a real disease.
Laurie
Oregon Coast
Oh, sweetie. I'm so sorry that you're having such a rough time and I'm so sorry that you feel as if you've been told that fibromyalgia is all in your mind. It is not. It is very real condition that is simply not understood yet. Unfortunately, in the medical profession "not understood" often gets translated to "patient is crazy". As you know from reading this post, fibro used to be thought to be some sort of inflammation, but more and more evidence shows it is a disorder of the central nervous system. Obviously, the pamphlets that your doctor has access to are hugely out of date and I'm glad that you have access to computers or you can get proper information. If you read this post, is it safe to assume that you read part one of my interview with Karen about fibro and RA, as well as her interview with me? If not, make sure you do - they'll help you validate what's going on. You'll also want to check out the fibromyalgia area on our Chronic Pain site, as well as subscribe to Karen's posts - she writes a lot about fibromyalgia and I have learned so much from reading her work.
In my experience, the first step to reducing fibromyalgia pain is to get your RA under control. The next that is to take medication specifically for your fibro pain. The painkillers you get for RA - whether it's opioids or anti-inflammatory - don't work very well for fibro pain, which is why it's a good idea to consider drugs that can help you with that. There's a link in one of my interviews with Karen to her comparison of the three drugs that are mostly prescribed for fibro at the moment and I recommend that you do some research and think some more about the medications you can try. Neurontin can be prescribed for fibromyalgia, but it's more common to start with e.g. Cymbalta or Lyrica. I hear what you're saying - you need to be able to function, which is why many start with e.g., 25 mg of Lyrica until they get used to the medication and then gradually increase. When you take the first dose, do so over a weekend so you find out just how hard it hits you. It may make you a bit tired to begin with, but it can work a treat for fibromyalgia symptoms and that will enable you to function. Don't forget that fibromyalgia isn't just about pain, it can also be about the infamous fibro fog - the more out-of-control your fibro is, the more likelihood there is that you might get some of the cognitive symptoms, such as a fuzzy brain, memory issues, etc. I've been there and it's not a good place to be. Actually, before I figured out how to manage my fibro, I thought I was losing my mind. It's a very scary place to be but there is the way out of it. Another drug you may consider trying is a muscle relaxants called cyclobenzaprine - I use it and it works for me. The best way I can describe fibromyalgia is that it is sort of like there are micro spasms in my muscles and taking muscle relaxants overnight sort of "reset the clock" so I start with the day fairly relaxed instead of creating more spasms on top of other stuff. That said, I would recommend you try Lyrica first.
Another thing that might help is your switch to Humira. When I was on Enbrel, it aggravated my fibro very much - every time I took the medication, I would have several days of muscle pain and it got so bad I had to switch. Because Humira is taking at longer intervals (e.g., every two weeks instead of every week) you have more time to adjust between dosages. I still find that Humira gives me since muscle pain for a couple of days, but it's nothing compared to what I had on Enbrel. Another really cool thing about Humira is that one of the side effects is "warmth" - it's like it heats you up from the inside. This might mean that you get warmer in general, may get some hot flashes every now and again, but here's what makes that good: that can really work for your fibromyalgia. One of the important coping tools for fibromyalgia is to always stay warm - everybody I know whereas fibro gets worse if they get cold. That means wearing sweaters, fabulous scarves around your neck, staying away from an air-conditioning vent, etc. And taking a medication that makes you warm up is perfect.
That was a lot of information, so I'll stop talking for now. Let me know if you have any other questions -we'll get you through this.
Thank you so much Lene - between this post and the email, my morning is better right from the start. I was on Soma but the insurance didn't like it. I'll ask my doc for cyclobenzaprine. I do get 'fuzzy brain syndrome' - got into an elevator yesterday and couldn't find the 8, and later the 1.... my little town doesn't have elevators. that's not true but close. I can't stand the idea that 'I made it all up' - that it's fake, psycho-illness. And I've started printing off all the stuff you've put in about Humira - which the rheumie said nothing about. I hope it's my miracle drug too. 
Laurie
to be honest, I would recommend that you try Lyrica before cyclobenzaprine, as Lyrica addresses a number of issues that cyclobenzaprine doesn't. I have tried Lyrica and it worked brilliantly - as it has for almost every other person I know who has fibro - but I had some issues with a side effect. If I had a choice, I would choose Lyrica over cyclobenzaprine, but due to the side effect, I have to stick with the other one.
and to be fair, a number of the things I talked about re: Humira may not be known by rheumatologists, but come from the experience of taking the drug. Sometimes, I think doctors should try every drug they recommend before being allowed to prescribe them. 
That's why I asked you above all, because there is a huge difference between recommending something you've never tried, and taking something a friend lives on and can report per sae. I've quoted you without naming you to a few folks today about Enbrel is a good starting place, but Humira is your miracle drug. Gives me loads of hope. Thanks so.... Laurie
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One of the worst FM symptoms is the cognitive issues. I was in PT yesterday and my Occupational Therapist was irritated w/me because I couldn't remember the sequence of my arm and hand exercises. I was having one of those days. I was too tired to explain. I think I will let her know that this is a symptom of FM for the benefit of any patients she may have in the future.
Great article and very useful information, Lene.
Thanks!
V
it always astounds me that people who get paid to be professional and help others get their shorts in a twist over things that really are in the job description. Sigh. If you're feeling contrary, you could print the post and give her a copy. Y'know, just to be helpful.
Well, I've done it now, Lene! I saw my orhto on Wednesday. I know his nurse very well, and I happened to mention my issue with the nasty OT. She told me to be sure and tell my orhto. I asked why, and she then told me that my ortho is the director of PT and OT at the hospital. Oops!
I didn't have an opportunity to not tell my ortho. The first things he said to me were, "What happened?" and, "What is her name?" I felt kind of bad at that time "telling" on her. Now that I think about it, though, she needs to be told not to treat patients in such a condescending, scolding fashion. Maybe it will help future patients.
So there you have it! My mouth engages before my brain has time to think once again. Oh, well. In this case, I think it is a good thing.
V
we are often too silent about being treated badly by medical professionals and it perpetuates the problem. I am very glad you had the opportunity to complain about somebody in a way that may not be comfortable for the person, but let's face it. She made an already difficult situation much more stressful for you. The difference between the two of you is that she gets paid to be a professional and a helping profession at that. We need to hold people accountable for their actions.
Good for you. You're becoming not just an advocate for yourself, but for others, as well. Because of you, many other patients will be treated better. Our actions have ripples and yours will have good ones.