Sometimes a person has to walk a mile in your proverbial shoes to learn compassion.  My own family has always believed I had FMS, but also felt that I could probably be cured if I could get myself out of the stressful life I lead here in the US.  At least they had a point with that: stress definitely makes my illness worse.  I don’t think they ever fully understood the pain aspect until my own mother developed a chronic back ailment and had her life altered by daily pain that wasn’t fully controlled by strong medication.  She found out what it was like to have people tell her she looked fine when she felt horrible.  She found out what it was like to go to the emergency room because she had so much pain she felt like dying, yet she had the doctors look at her like she was a drug-seeker.  Since that day my family has never been anything but completely supportive of me, to the point of begging me to come back to Canada so they can help make my life easier.  I appreciate that support more than words can say, and know I’m lucky to have a family standing by me.  It’s terribly sad that other people have to deal with both family members and strangers tossing out ridiculous statements about “pulling up bootstraps”, as was mentioned by a few folks in the thread linked above.

Does the treatment at the Fibromyalgia and Fatigue centers work?  For some it probably does, for some it doesn’t.  The problem is that the center takes so many thousands of dollars from each patient that the ones who aren’t helped are left broke and remain sick.  Here’s a quote from someone who started to go to the FFC last October:  ”I went to this center. I can’t say yet if it helps. I know it costs a fortune. I have borrowed from everyone I know. They tell you it will be $400.00 first trip but what they don’t tell you is that you walk out with $1000.00 worth of supplements that you “absolutely need”. Then you have to contact them every month at $200.00-$400.00 a pop. They also use a pharmacy that special blends your meds. very expensive. I have to fly to get to mine which costs a pretty penny and also i miss work. It’s been 3 months and i almost hurt more now then when i started. Oh Yeah tons of blood work too, and i forgot to mention that they don’t accept any insurance. completely out of pocket.” If you have money to burn, then what the heck, give them a shot.  If you have money the burn, why not just jump ahead and go straight to Cenegenics, another lifestyle medicine center which offers treatments for everything from general “aging” to FMS?  At least Cenegenics offers injections of HGH as treatment, which is what my endocrinologist recommended, and which has helped quite a few people.  They only help the wealthy, though… there’s no “hardship” program for the low-income patient who truly wants to get better.

Every doctor I’ve ever seen offers a sliding scale, every pharmacy I’ve been to is willing to accept drug discount cards or match prices.  When a specialized clinic offers no services through insurance carriers and won’t allow patients to buy their vitamin supplements elsewhere, it starts to seem that the center is more concerned about the bottom line and less about the patient.  If someone really had a cure for fibromyalgia and chronic fatigue syndrome, why wouldn’t they take this cure to the FDA for approval, so it would be available to patients all over the country through every doctor?  When we hear about people going to private clinics which treat cancer with apricot kernels and laetrile and hemp oil, we feel pity for the patients, knowing they’re about to get ripped off.  We know that none of these private treatment centers have ever offered a cure that actually works, and that they just prey on an individual’s last shred of hope.  These types of private cancer treatment centers aren’t even allowed to set up shop in the United States because of their bad reputation, and maybe it’s time the FDA took a look at the Fibromyalgia and Fatigue Center, too.  The Mayo Clinic will see me for free, if I walk up to their door and ask for help.  They know their primary purpose is helping sick people get better.  The pharmaceutical companies will provide medications to me for free if I demonstrate financial need, because their product was put on the market for the purpose of helping people.  When a private clinic only accepts patients who can pay, and won’t allow the FDA to investigate their special “supplements”, I think it’s a warning sign to seek help elsewhere.  Oh, I did go check out the “Testimonials” page on the FFC website, just to see what was written, and they offer ONE testimonial.  It isn’t even written by the patient, but by her husband, who’s so relieved that since receiving treatment, his wife can again do laundry, clean the house, put dinner in the crock pot, and go to church.  Wow, maybe the woman wasn’t sick at all, maybe she was just sick of such a boring life under her husband’s thumb.  With Fibromyalgia and Fatigue Centers in many major cities, all they can offer is one questionable testimonial?

The Fibromyalgia and Fatigue Center is run according to the medical teachings of Dr. Kent Holtorf, who claims he once had CFS himself and was cured (if you search for the illustrious Dr. Holtorf, you’ll find him mentioned on QuackWatch.org).  I believe in turn, Dr. Holtorf follows some of the teachings of the infamous Dr. Jacob Teitelbaum, who’s known to just about every FMS and CFS patient.  Even I paid $75 many years ago to have a preliminary treatment report written up for me by Teitelbaum, and the result was about 40 pages listing vitamin supplement after supplement, and telling to me to stop eating about a hundred different foods, and suggesting I start taking a handful of different hormonal supplements and tricyclic antidepressants.  I showed it to the Internist who was treating me at the time and she just laughed at it.  When I tried to see about taking the vitamins that were recommended, they would have cost over $500 for the initial supply.

In short, the world is full of scams, and there are some really great doctors out there who don’t hide behind the walls of a private clinic dishing out proprietary vitamin blends to gullible patients desperate for a cure.

UPDATE:  I just found another unglowing reference to Dr. Holtorf while reading a message board:  “I just spent thousands of dollars at the Holtorf center for almost a year and just got more sick.”

About six years ago, I started to see an internist; she was the first person to diagnose me with fibromyalgia, as well as the first person to prescribe opioids.  She was a great listener and I thought she was a great doctor, but her office management was a disaster.  She was chief of staff at a nearby hospital and was always two hours late for her first patient of the day, and too many patients were crammed into schedule.  As a result, you knew that you’d be sitting in the waiting room for three hours or more, watching a small TV with broken colour that only displayed shades of green.  Nevertheless, I stuck with that doctor until her office made a policy change:  unrelated individuals were no longer allowed into exam rooms with patients because of possible HIPPA violations.  The first time we visited after this policy went into effect, the office staff physically stopped my partner from going into the exam room with me, and forced her to sit in the waiting room.  I asked if she would be allowed in if she was my sister, or my mother, and they said Yes.  I asked if a man would be allowed in if I claimed he was my husband, and they said Yes.  The discrimination just blew me away.  It was the last time I ever went to that doctor, because I want my partner to know what’s going on with my health, and I don’t want to withhold any secrets (either intentionally or inadvertently).  I like having the second set of ears and eyes with me, because my memory isn’t perfect, and my partner might have observations about me that I’m not aware of.  That doctor closed down her office shortly afterwards and she went into teaching, so the stupid policy probably went with her, but it still rankles me in memory.

I’m always saddened when I hear of couples where one is sick and is trying to keep the news from the other.  I’m always horrified when I hear of couples where one is sick and only the spouse/parent/child has been informed, so the sick person doesn’t even know their own diagnosis!  I don’t need anyone to protect me, and I want my relationship to be built on honesty.  Whenever I’m at the doctor, my partner isn’t just welcome to be there, she’s pretty much required to be present.

I’ve been under the care of a board-certified physiatrist for about two and a half years, and I have an appointment with him once a month.  At each appointment I fill out a form listing all medications I’ve taken in the prior month (including OTC meds, and those prescribed by other doctors, like my endocrinologist).  I also rate my overall pain levels, try to evaluate whether I feel better or worse than the prior month, etc.  The doctor monitors things like my heart rate and blood pressure during each visit, and I’m required to have an EKG a couple of times a year.  I’m also subject to random drug tests, and have to have at least one per 12 visits.  My prescriptions are only written for a 30 day supply, and I’ve never lost one or needed an early refill.  I actually often use less medication than I’m prescribed… I try to be sensitive to how I feel vs. just taking the meds blindly.

My pain-management doctor currently prescribes:

15mg oxycodone 3x/day
20mg Cymbalta /day
1mg lorazepam as needed for sleep
.125mg - .25mg triazolam as needed for sleep

My Cymbalta dosage is extremely low, but it seems to be effective.  It’s easy to taper from such a low amount, and when I do I quickly notice an increase in my anxiety.  I don’t think such a low dose has any impact on my pain levels, unfortunately.  I’ve been up as high as 60mg Cymbalta per day and did well on it (it definitely reduced my overall pain level), but it’s just too expensive to stay on that dose (about $200/month).  Right now I’m just using up free samples from the drug reps, and when those are gone, I think I’ll end up off Cymbalta for the foreseeable future (perhaps a chance for me to try reboxetine again).  Oh, the higher dose of Cymbalta was definitely causing some daytime sedation, too.  Last summer I was taking about 40mg of Cymbalta and 30mg of methadone per day, and when I tapered off both (I stopped them both at the same time to enter a drug trial), the lack of daytime sedation was very noticeable.  Methadone is a very effective and cheap drug (literally less than $20/month), but the side-effect profile eventually made it rather intolerable (nausea, constipation, blech).  I also don’t take Provigil anymore, because I just don’t seem to have the daytime fatigue issues that I once did.  I make an effort to sleep as much as I feel I need to, even if it’s 12 hours a day, and I think it gets me to a point where I’m actually having restorative sleep like a normal person.  I can say with absolute certainty that the more sleep I get, the less pain I have.

The physiatrist is limited in what he can do for me because of my financial constraints.  Oxycodone works fairly well for my pain and it’s cheap (about $40/month), although there’s more a pain roller-coaster than I’d have on a longer-acting drug (like Oxycontin or Duragesic, the latter being my preference if money was no object).  I know I’m better off than so many people who are stuck with severe pain and doctors who prescribe vitamins and OTC supplements, and I can’t fault the doctor for my less-than-perfect treatment plan.

I also see an endocrinologist for my Hashimoto’s, and keeping my thyroid hormones under control can make a huge difference in how I feel.  I take Cytomel, 25mcg/day, and Synthroid, 125mcg/day.  You can see how my Hashimoto’s has progressed in the last six years just by looking at my meds—I started on 10mcg of Cytomel and 75mcg of Synthroid (at one time, I was only on Synthroid).  I’d be interested in switching to Armour, but I hate to mess around with something that seems to be working.  Thyroid disease can so easily mimic fibromyalgia/chronic fatigue that I really want to stay on top of the thyroid problems and eliminate as many symptoms as possible.

That’s pretty much it.  I take vitamins—selenium for thyroid, and magnesium for FMS—and sometimes take Advil (headaches), Sudafed (headaches), or Benedryl (allergies).  I report all of them to both my physiatrist and my pharmacist.  I love seeing the same pharmacist all the time, and having a good relationship with her—she seems genuinely concerned about our health issues and is always ready to answer questions (or gossip).  It’s also a second set of eyes watching for drug interactions or other problems.  Exercise is tough because of the risk of post-exertional malaise (the problem being that you never know if you’ve overdone it until the PEM hits, and then you’re down for the count for about a week, waiting to recover).  I do what I can, though, whether it be walking outdoors or cycling on the stationary bike.  I’d love to be able to run again—I loved running—but that’s not in the cards right now.  Even taking a tiny jog (seriously, I jogged about a block), left me in bed for days.

If you feel so inclined, please let me know what works for you.  I could write a blog entry about what hasn’t worked, but oh, we’d be here a long time!

I know sudden weight loss often happens with CFS patients, but as that isn’t my specific diagnosis, it wasn’t what I expected (I do believe, as many doctors do, that CFS/FMS are the same illness manifesting in different ways).  If you find this entry via a search engine or otherwise happen to stop by, what have been your experiences with weight gain/loss as a result of FMS/CFS?  Have any specific medications caused you to lose or gain?  I think my clinical trial of Reboxetine may have been a metabolism-booster, but I’ve been off that med since the trial ended in February, so I can’t hold it responsible for what’s going on now.

Bethesda Magazine:  Brave Hearts

So take that, you naysayers who laugh and mock when I complain that reading stressful emails tires me out.  It does, and smart people know it.  If you’re a smart person, read the 25 things to make sure you’re in tune with the latest research and findings.