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Update from the pain doctor 
18th-Sep-2013 12:30 pm
I just realized that I posted on my private journal, but I forgot to post here. Last week I went to see a doctor who specializes in treating CFS and Fibromyalgia. Based on a two hour interview with me and reviewing my lab tests, he does not believe that I have fibromyalgia.

I'm bummed in that I would like a name for what I have, but I am also relieved because I don't have a chronic condition. Well, I do, but I am just not as sick as people with fibromyalgia are. He thinks I just suffer from chronic widespread pain and hypersomnia, without the other bits of fibro. It may or may not be attributed to depression.

This is from the letter he wrote to me after the appointment:

The problem you presented was of chronic widespread pain, or "CWP," for many years, but probably preceded by exhaustion and daytime sleepiness which goes back to at least your early teens. Both those symptoms, pain and exhaustion, evolved along with the stress of growing up in a family overshadowed by alcoholism, and your own depression that developed during your college years.

Various diagnoses for such a condition are easily ruled out by careful attention to your history and exam findings. This is not chronic mono, lyme disease, hypothyroidism, etc. I think "fibromyalgia" is a misleading label for it, because your condition lacks some of fibromyalgia's hallmark features of "axial pain," extreme morning sluggishness and malaise, "brain fog," prolonged exhaustion after minor exertion, and altered daily energy rhythm. Moreover, your widespread tenderness to pressue, measured by a dolorimeter, is quite minor. Similar considerations make Chronic Fatigue Syndrome an unhelpful label for your condition.

I think you most likely have a constitutional need for more sleep than most people, hence have reduced reserves of energy during the day. This may be interwoven with your tendency to depression: they often go together. The CWP follows from this, as poor sleep from any cause quickly produces widespread pain. Such a condition is not illuminated by sleep studies, like the one you had. You have had the other usual lab test and these have been unfruitful except possibly the vitamin D test (see below). I do not think that further lab tests will be helpful.

(Although I do feel like I have brain fog and a few other things, but again, not as bad as they could be). He issued me a list of recommendations and sent me back to my doctor. He says he doesn't need to see me.

I'm still processing what this means for me long term. Without an actual label of anything beyond: pain, fatigue and depression, I feel like it will be harder for people to take me seriously, especially medical providers and insurance companies. I also wonder if this could be the onus I need to leave my job and try the work at home part time like I have been thinking about for a while now. His first recommendation for me was:

The most obvious response would be to seek a job which would allow you to sleep longer hours, and to set your own work schedule (as you may function best with a wake-up time that doesn't fit with usual office hours). Work that's part time, and/or is mainly from home, might do this. This is of course a gamble: it may help or it may not. But it should be a serious consideration, especially if you have other reasons for considering a job change.

He also recommended getting more exercise, preferably swimming, and trying other supplements or medications, with the caveat that apart from exercise, none of them work for everyone and that I should only continue on a regime if it is helping.

So it is what it is! If anyone is in NC and would like his name and contact info, I'd be happy to share.
18th-Sep-2013 06:01 pm (UTC)
wow... well although I'd be disappointed if I was told I didn't have fibro and CFS after all this time, I think the way he actually listened to you for 2 hours, and thought about it that much, that is so much more then most of us get! I hope you get some helpful answers soon. I'm just very pleased to hear you were seen by such an attentive doctor.

I am sorry though, like what you said about trying to explain such fatigue and pain without a name, since it's hard enough to get any understanding even with the name fibro, of cfs. But I'll be hoping for the best for you x
18th-Sep-2013 06:11 pm (UTC)
Yes, a lot of pros and cons for sure. Thanks for the well wishes.
18th-Sep-2013 07:16 pm (UTC)
Yeah I'm kinda in the same situation. I may or may not have fibro anymore according to the doctor, but it's mostly because I'm better at managing the symptoms than I was in the past. I really wish there was more help for us "moderately disabled" people who don't fit into the black and white categories of abled/disabled, but still need accommodations and assistance.
18th-Sep-2013 09:07 pm (UTC)
I've been wondering if it's early onset or pre-fibromyalgia. It's like not full-blown yet or something.
28th-Sep-2013 01:56 am (UTC)
Wow, I am amazed at the detail and care that seemed to go into that letter. I wish I could go to your doctor!
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