Yesterday, my first day back in the real world ended with sort of a bang. The walker I got for myself is one of the really cool roller ones with breaks, a seat and a basket to hold all of my stuff. The major problem with it is that its intended to be a walker only, so only two of the wheels, the "front" wheels have independent motion. Well, yesterday I was too tired to make it all the way to the bathroom at my work. Its really far down the hall from my office and I was too tired to make it all the way, so I sat on my walker and rolled myself backward down the hallway. I was going slow, holding the wall and trying to be careful, but I hit a bump and oops! over the back of the walker I go my back slamming into the bar on the way down.
So I'm bruised and humiliated and laying on the floor with a walker on top of me. Whats a girl to do? The basket feature saved me, because I had my cell phone on hand and was able to crawl to it and get help.
Back to bed with me now, only I have a twisted and bruised back on top of the Fibro-Fun. I really don't mean to complain, but it seems I can't catch a break. Every time I get out of bed something happens to send me right back.
Fortunately my doctor got in touch with me this weekend and upped my pain medication doses, and my muscle relaxants.
Since I'm talking about it, I should probably go into the different kinds of drugs given to Fibros.
1. Pain Medications- There are several kinds starting with the most familiar like Vicodin, or Darvocet. Those two are narcotic based meds and can be addictive and have some major side effects. These are used for short term only, or for really extreme cases where nothing else can be done. Since I'm only 25 I won't use these drugs for anything more than a day at a time once every three months. The pain medications that are more useful for Fibros are non-narcotics like Tramadol also known as Ultram. Ultram is found to be more effective when taken with 2 500mgs of Tylenol for some reason. This is a safe drug that can be taken in 50mg tablets up to eight times a day- but only if a doctor recommends this dosage!
2. anti-inflammatories- Since swelling is not a symptom that all Fibros get, not everyone is on an anti-inflammatory, but many of us are. Fibro usually involves only low grade swelling all over the body, and often these drugs do little good without horrible side effects. The side effects of high doses of Anti-inflammatories is GI problems which is already a side effect of Fibro anyway. Its almost better to put up with the swelling. These drugs also have long term effects that make them slightly dangerous for young Fibros to use for life-time treatment. There are many different kinds of these drugs, but usually Mobic and Voltarin are the strongest and the only effective on Fibros. They really do a number on your stomach lining, and for me taking them is like being kicked in the gut. I can't really do it for more than a week.
3. antidepressants- Since Fibro is a nerve disorder/sleeping disorder/brain chemical thing doctors often prescribe antidepressants. This includes Zoloft, and Prozac and other familiar names. These drugs are usually given in very small doses, much smaller than usual. In the same sort of category is Endep/Elaval- a drug that has been used for Fibros since the beginning. Endep works to block the re-uptake of serotonin after your body releases it. This treatment comes from the theory that Fibros have less serotonin available in our bodies and thus need it to stay in the system longer. This category of drug is often used at bed time to help achieve restorative sleep.
4. muscle relaxants- These drugs do exactly what they sound like they do. They relax muscles, and often have the side effect of making it really hard to concentrate. If you've seen Sixteen Candles you know what I mean. Cycloflex, Flexeril are the most commonly prescribed These drugs went into use for Fibro because at one time it was seen as a muscle disorder. They aid with the muscle aches that really do come with Fibro, but just as with the narcotic pain pills they shouldn't be used on a regular basis.
5. dopamine agonists- like "Mirapex stimulate(s) nerves in the brain which are normally stimulated by dopamine, a brain chemical that helps control motor functions and movement." I'd like to know more about this before I go into it too much, but it appears drugs like Mirapex are starting to be used for Fibro do to new research connecting Fibro to low levels of dopamine. I'm currently on it, and haven't experienced much benefit-wise yet, but they've recently upped my dose as I was on the lowest possible.
6. IV Litican treatments- This really seems to be a new thing as I haven't seen much buzz about it, but from my experience its well worth looking into. I've had two treatments so far, and the first one worked really well, and the second was botched slightly and didn't work at all. It used to be used in end of life pain especially for terminal cancer cases, but has moved on to chronic pain. Basically its a monthly treatment with Litican, an anesthetic, sent directly into the central nervous system through and IV over the course of an hour. Since Litican only has a half life of half and hour it appears that its not that the drug numbs the central nervous system, but rather it restarts it. Since the pain Fibros feel isn't coming from outside stimulus the restart stops- for a short period of time- the false signals of pain. Fibros have reported up to three weeks of relief, and frankly I would give anything to feel the way I did the three weeks after my first treatment. It sometimes doesn't work as well the second time, but I have hopes that when I get my next treatment it will work.
Several things need to be considered with Fibro drugs. First should seem obvious but I'm going to put it here anyway. NEVER TAKE ANY MEDICATION WITHOUT CONSULTING YOUR DOCTOR. No medicine is 100% safe, and I'm not a doctor so what I say here is merely collected information not a recommendation. Also it takes weeks to see the results of medication on your body, especially the dopamine/anti-inflammatory/serotonin drugs. Always take them as your doctor recommends and wait for results. Sometimes it is dangerous to take yourself off of these medications without a doctors help. When messing with brain chemicals you can't just stop and start at will. Be safe, and always ask a doctor.
Well this has been a really long post so I'm going to sign off.
Salvate!
-Fiona
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