Thursday, February 28, 2013

Inspiration of the Day, February 28, 2013: 

"The primary problems of the planet arise not from the poor, for whom education is the answer; they arise from the well-educated, for whom self-interest is the problem."

- excerpt from William Sloane Coffin's book "Credo"

(Un)seize the day! 

Have had this useful article sitting on my browser for awhile now. Probably came from one of the fibromyalgia Facebook pages:

7 Easy Ways Of Preventing Toe Cramps

Have become an expert on this particular subject because my feet have been twitching uncontrollably in my sleep for the past 16 years, causing horrible muscle spasms. If my usual preventive measures are unsuccessful, I have ways of treating foot cramps. First, if I feel my foot starting to spasm, I quickly stretch the affected muscles in the opposite direction of the way they are cramping. If several muscles in the foot seize up at once, I get out of bed and place the foot flat on the floor, then walk slowly in an exaggerated fashion to give each muscle a chance to move to a normal position. If that doesn't help, I put a thick layer of extra strength Icy Hot on the foot and wrap it in a towel. For some reason, the menthol provides enough of a sensation distraction that the foot will relax. On those occasions where every muscle below the knee cramps up at once (which, believe me, is EXCRUCIATING), I fill the bathtub with the hottest water I can stand and dump a ton of epsom salts into it, then soak the affected muscles while massaging them underwater. Then I haul my butt back to bed and pray for sleep.

Sunday, February 24, 2013

What are YOU eating? 

Okay, I'm going for the gross-out. Found this article on a fibromyalgia Facebook page:

The 11 Scariest Things in Your Food

As much as I complain about the restrictions of my medically-necessary diet, at least I know it contains minimal amounts of the ingredients described in the article. Aspartame gives me migraines, and as of Christmas Eve 2011, I seem to be sensitive to something in store brand Neopolitan ice cream (hence my voluntary ban on foods with zero nutritional value). My diet certainly isn't perfect as it contains daily Boost (all chemicals, but necessary when I can't eat solid food) and various condiments, but even if I were cured tomorrow, I definitely wouldn't go back to what I used to eat before I got sick.

Friday, February 22, 2013

Interacting with your medication.... 

Found an interesting site while doing some research. This link is for methotrexate, but you can use the site to look up all kinds of medications:

Methotrexate Drug Information

One thing I have been experiencing recently is an increase in muscle spasms, which usually happens when I'm not getting enough magnesium. I'm considering bumping up my supplement. Because the of the very real danger of liver damage from methotrexate, I might look into resuming milk thistle. I already take a folic acid daily.

Thursday, February 21, 2013

Involved in a different kind of shooting.... 

Couldn't handle the stomach-related side effects of Methotrexate tablets after three weeks (on Saturday night, I very nearly vomited into the open refrigerator while putting away groceries), so on Monday, I called the rheumatologist's office and asked if I could switch to injections, even though I have a phobia of needles. She agreed the switch was a good idea, so yesterday, her assistant taught me how to do injections. My hands were shaking, but I got through the appointment. 

Luckily, I managed to talk Dan into giving me the actual shot last night once I showed him what to do. Many people have told me the injections don't hurt, but HELLO, I have fibromyalgia in addition to the Sjogren's, so of course it hurt. I swelled up quite a bit at the injection site, but that did go away after an hour or so, leaving a small circular bruise. I am still a little sore in that area, but I've experienced worse.

The good news is that I am already less nauseous, so I guess it was worth it. And now I can tell people my husband shoots me once a week, heh heh.

Thursday, February 14, 2013

Didn't see it coming.... 

Tuesday was my twice-annual eye exam. Because I am on a medication called Plaquenil which can in rare cases affect eyesight, I have to have what is known as a visual field test. Well, much to my surprise, it revealed that I have some vision loss in my right eye.

I've been on Plaquenil for a decade. I hadn't noticed anything different with my eyes, and my test six months ago was normal. Fortunately, the damage was caught quite early and is minor, but it is unknown whether my vision will return after stopping the Plaquenil.

And to add to the fun, I have had a reaction to the drops they put in your eyes for the dilated exam. My eyelids are swollen, red and itch like there's no tomorrow. I had this happen two years ago, but it was much worse that time and took two weeks to resolve. I am hoping this time it will clear up on its own.

Happy Valentine's Day! 


Saturday, February 09, 2013

Inspiration of the Day, February 8, 2013: 

If we have no peace, it is because we have forgotten that we belong to each other.

 ~ Mother Teresa

Saturday, February 02, 2013

The biggest fibromaylgia "cure" scam of all time.... 

This is a companion piece to previously posted article about fibromyalgia treatment scams. Got it from the same Facebook page:

Consumer Alert - Guaifenesin

I know people who claimed to be cured by this stuff and pushed me pretty hard to try it. Part of the reason so many fall for it is the nonsense that if you get worse, it means the "toxins" are leaving your body, not that it is failing to cure you. Or if it doesn't work, you are told you must have ingested one of the long list of substances that supposedly negate the effectiveness of guaifenesin. I didn't bother trying it for fibromyalgia because it made me so sick when I was prescribed it for bronchitis in 1997 a couple of months prior to the onset of the fibromyalgia. My reaction to the guaifenesin may have in fact been a trigger for either the Sjogren's, the fibromyalgia or both. It gave me raging insomnia, uncontrollable racing thoughts, tremors and body-wide twitching. Not exactly a cure for anything.

Sound too good to be true? You're probably right.... 

This article appeared on a fibromyalgia Facebook page recently. It's an excellent piece about how to figure out what non-prescription treatments are legitimate and which ones are exaggerating or even lying about their product's effectiveness:

Claims for Marketing Fibromyalgia Products and Treatments

People with fibromyalgia are particularly susceptible to marketing scams because there is no one treatment that works for everyone, and there is no cure no matter what the treatment. People in excruciating pain or experiencing life-altering exhaustion can become desperate to try ANYTHING to feel better. And unfortunately, there are some pretty clever scams out there. Many products do contain at least one ingredient that is helpful, and some of those testimonials may contain a kernel of truth. But BEWARE of anyone who says they can CURE you! This goes not only for fibromyalgia but any incurable ailment. Some of these "cures" are extremely expensive, time-consuming, and may do you more harm than good. Remember what Mike Brady used to say: "caveat emptor", or may the buyer beware.

It's like living on a balance beam.... 

Toni Bernhard's latest article for Psychology Today. This dilemma is all too familiar to many of us:

5 Tough Choices You Face When Chronically Ill or in Pain

And of course the more ailments you have, the harder it is to decide what is causing a symptom and whether it's worth mentioning to a doctor. The rule I always go with is that if a symptom is new or suddenly worse than it has ever been before, get it checked out. As for whether or not to push oneself, I'd rather save my exertion for things I enjoy, like going to a movie or spending time with someone special. I find it very demoralizing to put myself in a flare for routine things like housework or errands that preclude me from doing what I most enjoy.

Entering a new phase of treatment.... 

Saw the rheumatologist on Monday. The MRI and x-rays taken of my feet last month show synovitis and bursitis, but not the degree of erosion that typically accompanies rheumatoid arthritis. So this is probably arthritis from Sjogren's, which is less aggressive but still needs to be treated as plaquenil has been unable to keep it in check. 

I decided to do the methotrexate as it is an old medication and the risks and benefits are well-documented (plus it's cheap). Due to my needle phobia, I am going to try the pills first. If my stomach can't handle the pills, I will somehow try to get over my phobia and do the self-injections.

We discussed prednisone, but because it could cause even more weight gain than I already have and worsen my diabetes if taken long-term, I will save it for acute episodes only in short courses as I have had success with that. I am hoping that if I can rein in my Sjogren's symptoms that I will be better able to tolerate the fibromyalgia.

So I started a low dose of methotrexate on Tuesday, 10 milligrams. I do that once a week for two weeks and then bump it up to 15 milligrams per week until my next appointment with the doctor in March. If all goes well I will go up to at least 20 milligrams. It can take months for the medication to take full effect, but by going slow I will be less likely to overdo it.

Because of the potential for serious side effects like liver damage, I have to get frequent blood work.  I will be doing labs every two weeks for a month and then if all is well I can drop down to every eight weeks. I have no history so far of any type of kidney or liver problem, even with the various medications I've been on and having multiple ailments that can affect internal organs, but better safe than sorry.

As far as initial side effects go, I've had a bit of transient stomach pain, a bit of vertigo and accompanying nausea on the second day, and some brief bonus fatigue, but nothing significant. I detect an ever so slight improvement in the joints and cognitive function, probably not noticeable to anyone else but me. But even the most infinitesimal change for the better is motivation enough for me to forge ahead.

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