I’m often asked what medications I use for relieving the pain and symptoms of living with multiple chronic illnesses. For that reason, I wanted to write a post outlining the medications I rely on to enable me to live, not just exist. In these past 8 years, we have pretty much tried everything. While some people have luck with some preventative drugs, it seems that my body only responds well to those that alleviate the symptoms once they’ve set in.
Because we all have very different bodies, I wanted to first outline some of the more commonly prescribed drugs, before highlighting the ones that work well for me:
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. Cymbalta did nothing to help me with either the mental aspects of my illnesses, nor the physical ones. As is the case with many of the other meds I’ve tried, coming off of Cymbalta was absolutely horrific.
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: An injectable chemotherapy drug used in low doses for Rheumatoid Arthritis (etc). 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 I only use this when I’m having a long term flare I can’t pull out of.
Plaquenil: An anti-malarial. It’s typically prescribed early on for Rheumatoid Arthritis and Lupus to lessen the advancement of the diseases. I was originally diagnosed with Lupus, then Rheumatoid Arthritis. Despite having an Aunt with RA and a positive ANA, it was subsequently determined not to be either. Plaquenil can lead to blindness, but regular eye checks, to catch any issues, can mitigate this side effect. I saw no changes as a result of using this.
Topomax: An anti-epileptic, used off label, to curtail chronic headaches and migraines. It worked great once getting over the catastrophic gastrointestinal effects. After being on this for several months, EPIC mood swings and uncharacteristic bouts of anger 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, used 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.
Klonopin: An anti-seizure med, used off label, to aid in sleeping. Initially, it worked well to help me sleep through the pain and Restless Limbs Syndrome (RLS). After a time, it lost it’s efficacy unless the dose was increased. 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, for me. 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. 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 of taking 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, I use Oxy. Which brings me to my next helper…..
2. Oxycodone: Obviously, a hard core pain reliever. 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 just have to do what you have to do.
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 two Fioricet doses, 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.
4. Flexeril: a muscle relaxer. It helps, alot, with the allover muscular body pain. Two added perks: It helps with the discomfort that can come with having sex (super important) and helps with the horrific pain associated with my period. 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. So now, I only use it when I really need it.
5. 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.
6. DeepBlue rub, by DoTerra. I love this stuff. It’s similar to 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.
7. MGrain Essential Oil by Young Living: An Essential Oil mix. If you’ve ever experienced a migraine, you understand the brain crushing pain that one entails. Since I can only use Fioricet twice in seven days, I typically reach for this first. It actually works incredibly well in the initial stages of a migraine or for headaches.
8. Magnesium Cream: I use Frida Botanicals. This works remarkably well for relieving my Restless Limbs Syndrome. For me, RLS does not only cause jumping, it causes tremendous pain, almost like being electrically shocked by needles. Frida works to lessen and often eliminate this pain. I have not experienced any side effects from this cream, although others who use different magnesium cream have reported skin issues and itching.
I’m sure I’ve missed some medications I have tried. At one point, I was up to 21 prescriptions a day. At that point, I was sicker than ever and never knew what was worse, the conditions or the medication side effects. These days, I try my best to get by with the drugs I know my system can handle or with over the counter meds first.
Whatever your situation is, know that taking medicine does not make you weak and is not something to be ashamed of. Do what you need to do, in order to live your best life. I know I do.
Love, strength, hope and peace on painful days <3 Stacey
*Disclaimer*: Please remember that I am not a medical professional and anything I am writing is based upon my own personal experience. Please do not interpret any of this as medical advice or suggestions for your own treatment. Please always discuss with your doctor what treatments may be best for you.