So today may not be the best day to be writing this post because at present, I am utterly miserable, exhausted and in pain-not to mention massively sleep deprived. I have found after 7 years, that there are just some days like this. I run through the gammet of treatment and relief “protocols” that I do have, like an old rolodex and still nothing, no relief, no escape. But I am fortunate enough to at least have that rolodex.
In these past years, we have pretty much tried everything:
Cymbalta: an FDA approved anti-depressant, used off-label, that is supposed to curtail many of the symptoms of Fibro by treating the underlying disease. Nope.
Nortriptyline and Lyrica: medications used to treat nerve pain. Holy sweet side effects. And, yep, no relief. Although admittedly, I didn’t spend enough time on them to experience any positive effects.
Methotrexate: a chemotherapy drug used in low doses. Initially, this worked great. Two months in, the side effects began to far outweigh the benefits. Two years later and I’m still struggling to regrow my hair back.
Prednisone: a steroid. At one time, I was on this daily. Prednisone is great for lessening the symptoms of Fibro and ME/CFS, but used over a long period of time, it can have life endangering side effects. I have also experienced a near manic depressive episode as a result of a high dose burst that left me suicidal. So we only use this when I’m having a long term flare I can’t pull out of.
Plaquenil: an anti-malarial. It can lead to blindness. Regular eye checks to catch any eye issues, expediently, tries to mediate this side effect. I saw no changes as a result of using this. It’s typically prescribed early on for Rheumatoid Arthritis and Lupus to lessen the advancement of the diseases.
Topomax: an anti-epileptic used to curtail chronic headaches and migraines. It worked great once getting over the catastrophic gastrointenstinal effects. After being on this for several months, EPIC mood swings were cause to come off. Oh right, I almost forgot, it also can cause Kidney Stones and blood in your urine. A not well known, scary as HELL, side effect.
Modafanil: a wakefulness promoting drug to combat the disabling exhaustion from Chronic Fatigue Syndrome (Myalgic Encephalomyelitis). This only caused me to feel “speedy”, not awake. It also came with the bonus of heart palpitations, dizziness, nausea and an elevated heart rate.
Flexeril: a muscle relaxer. It helps. While I was medically approved to take this on a regular basis, doing so eventually caused light headedness, dizziness, vertigo and even stranger? Hearing issues such as ear fullness and lessened hearing.
Klonopin: to help sleep. Initially, it works well to help me sleep through the pain and Restless Limbs Syndrome (RLS), but after a time, it lost it’s efficacy until you continued to increase the dose. It also began to cause dizziness, light headedness and vertigo. Coming off of Klonopin was nothing short of Hell.
So now, what DOES work? Here are my top five medications that DO work. That have minimal side effects (well, sort of??) for me.
1.Tramadol: an Opiod derivative pain reliever. It’s highly demonized due to it’s high potential for addiction. But, it works. Tramadol has enabled me to have somewhat of a normal life. It blunts the pain enough for me to live. A couple of added HUGE perks? It also helps with the Restless Limbs and gives a slight boost of energy. I try to take as little as possible of this and I try to always be mindful of it’s addictiveness. But, I now use it without guilt. It causes insomnia, which is really awful when sleep is sometimes your only saving grace. Aside from that, I haven’t experienced any other side effects. Note: to come off of this will likely also be hellish. While recently prescribed an extended release version of this med, I haven’t taken it. I had originally hoped to use the ER to have better, more consistent pain relief. What I ultimately decided was that I like the control to take less Tramadol when I need it, on my good days. The ER eliminates that control. You also cannot use Oxycodone when taking it. For really bad days, like today, I use Oxy. Which brings me to my next helper…..
2. Oxycodone: obviously, a hard core pain reliever. Do I even need to mention the dangers of Opiods again? It’s tragic the amount of addicts and the ravages that addiction can have on peoples lives. I used to live in terror of becoming an addict. Then I realized, that Oxy brings me relief when sometimes nothing else can. I take this as infrequently as I can and every time I open the bottle, I mentally remind myself of it’s dangers. Bottom line: sometimes you have to do what you need to. After 7 years, I still only take one 5mg pill, at my worst.
3.Fioricet: a migraine stopping pill. This is not preventative, it’s used when the migraine is already present or in it’s preliminary stages. Fioricet is a life changer. It typically stops my chronic migraines in one dose, although sometimes, it does take two. Caveat? You can only use Fioricet twice in a seven day period. Knowing that, I typically walk around with a headache (I also suffer from Chronic Headaches, aside from Migraines) or a migraine until I can no longer handle the pain or when it has lasted for multiple days. I wish things like Riboflavin and Niacin (or any of the other prescription migraine drugs I’ve tried) would have worked to prevent the constant headaches and migraines. Botox is the last preventative med for me to try. Given my high sensitivity to drugs, we’ve decided not to do so. While my Neurologist has said the only side effects he’s seen is drooping eyelids, I know of someone who permanently loss the use of one arm. I’m all set with just Fioricet I think.
4. Lidocaine patches. These work MUCH better than you would imagine. I find they are more useful for muscle pain and discomfort, as opposed to, the deep searing nerve pain. But, they WORK. I have not experienced any side effects from them, whatsoever.
5. DeepBlue rub, by DoTerra. I love this stuff. It’s similar to like IcyHot or BenGay, but in my opinion, works better. I love that Essential Oils are the primary pain relievers in this rub. Added bonus? It’s not a prescription med and is unlikely to have negative side effects. DO NOT get it near your eyes. That is a brutal unintended consequence. If you do, use a carrier oil to flush out your eye, or if you don’t have one, use Olive Oil.
I’m sure I’ve missed some medications I have tried. At one point, I was up to 21 a day. At that point, I was sicker than ever and never knew what was worse, the conditions or the side effects. These days, I pretty much only use the five listed above.
After a few hellish weeks and now developing Neuropathy (it was only a matter of time, since I have Fibro) I am going to call an Acupuncturist and try a TENS unit. We’ll see how, if at all, they help. Wish me luck.
What’s worked for you?
Love, strength, hope and peace on these painful days~Stacey