Over the last two years, I've made it pretty clear that I have a love/hate (pretty much all hate and no love) relationship with drugs.
Not sure why my body hates me, but like everything else, it's something I'm slowly getting to the bottom of.
Just in the last year and a half, these most of the drugs I've tried. (Please note under any normal circumstance would I ever be posting my drug medical history, but a lot of people with fibromyalgia/EDS/MPS/MCAD --everything I have-- usually has sensitivities and intolerances to a lot of things.)
Drugs with an * behind them show that I had side effects. Drugs with multiple * mean I probably thought I was dying.
Side note: I was dumb and didn't write down what they were.
If they are on the list without an * it means they didn't give me side effects but didn't help.
*Note: I know some of these are not in the right categories. I took this right from the notes in my phone.
Anti inflammatory:
Mobic
Celebrex
Flector patch
Naproxen
Muscle relaxers:
Soma
Flexeril
Robaxin
Tramadol*
Tizanidine**
Neurontin/gabapentin*
Benzo's:
Valium
Xanax
Ativan* tolerance
Klonopin
Sleeping pills:
Lunesta *
Ambien - 10 mg with phenergan 50 mg
Sonata*
Anti nausea:
Phenergan- must eat with food, 50 mg in combo with ambien 10 mg
Pain killers:
Vicodin *****
Tramadol*****
Percocet****
Hydramorphone***
Cymbalta***
OxyContin****
Nucynta ****
Opana****
Morphine****
Antidepressants:
Wellbutrin***
Zoloft *
Lexapro *
Amiytriptyline****
Lyrica***
Prozac *
Doxepin****
Misc:
Tylenol
Advil
Aleve
Ibuprofen
Medrol dosepak
Capsaicin cream
Benedryl
Melatonin
So, doctor friends/family (or anyone with common sense), you can start see the relationship of general categories that weren't working my favor. I know there are more drugs to add, I just can't even remember what they are. I have irrational fears about going to the ER because doctors will probably just give me painkillers anyway. My PCP has actually told me when I need to go to the ER I shouldn't go to the ER.
As I'm sure you can sense from this list, I don't really have much to take in the way of pain at all. Especially break through pain. These are the questions I am asked the most about. The only things I can take and try to take as little as possible are Toradol (an intense NSAID that rots in your GI tract--I get LECTURES FROM EVERYONE about taking this--you're not supposed to use it for longer than 5 days after surgery), Ativan (which I previously had a mild addiction/withdrawal from) and Robaxin. The last two I take in conjunction with Ibuprofen. Most of the time, these kind of take the edge of.
With really bad pain, nothing does. And trust me, there have been times in nights of desperation with really bad that I'm almost desperate enough to try more painkillers but ultimately logic strikes and pass on it. I end up just trying to drug myself enough to pass out. This seems like the best solution (other than throwing myself off a bridge or trying to convince someone to take a hammer to my head).
I have a whole pharmacy of drugs at my house.
I have a several giant boxes of all the drugs I've tried. Slowly I'm starting to get rid of all of them. Or do this. (Because I think it'd be hilarious.)
I also use heat/cold, China Gel, TENS unit, compression wear, a custom pain salve made from essential oils, trigger point/foam rollers, my U shape body pillow, epsom salt baths, food (hence the weight gain), etc. (Almost all these things can be found through various posts with links on my site.)
You may be asking yourself "Erica, were painkillers really that bad?" and my answer to that would be "Yes, yes they were." Here's a few things that would happen when I took pain killers or antidepressants:
- extreme nausea
- perpetual vomiting
- throat closing/trouble breathing
- rashes
- hives
- rapid heart beat
- extreme dizziness (to the point that I couldn't stand)
- feel like bugs were crawling all over me
- ridiculously bad IBS
- more spasms
- dry mouth
- blurred vision
- headaches
- night sweats/nightmares
When I went to see my geneticist at GBMC, we could tell some of these were allergic reactions and some were something else, so she ordered me a Genelex Youscript Test. It's a pricey one, but luckily my insurance covered it. It's a swab cheek test that analyzes how well you metabolize certain drugs. It's very confusing to read, even for most doctors but a lot of the reps there are very good at explaining to the least science-y person ever. But, no surprise, I was an "intermediate metabolizer"/slow metabolizer for the phenotype that includes many painkillers and antidepressants. According to the Youscript site, this is the definition of an intermediate metabolizer:
- Intermediate Metabolizer. An intermediate-metabolizing enzyme is considered to be less active. It doesn’t break down a drug as completely as a normal metabolizer, which means you might require a lower dose. A lower dose prevents the unmetabolized drug from building up in your body and possibly causing side effects.
- Poor Metabolizer. A poor-metabolizing enzyme has very low activity. It is possible to have side effects even with a very low drug dose, because the enzyme is very slow to break down the drug.
Generally, once most doctors find out you're an intermediate metabolizer (if they even know WTF it means) they will never prescribe any drugs that fall into that category. It's hard based off the information they give you form the results to figure out what are intermediate metabolizers and what aren't. The service from for Youscript told me with my results, if I took something that was an intermediate metabolizer for me over a decent period of time, most of the drug would stay in my system since it wouldn't be digested and become toxic to me, even resulting a potential stroke. Now I have software by Youscript where I can plug in all my meds I'm on with the meds I want to try and see if there are interactions or if they a bad metabolizer for me. It's getting to be a little too much fun for me.
Having the kind of pain I have with no meds is really hard sometimes. I have to go the "natural" way out of force. Most people that have the same diagnosis and pain I have are on SERIOUS meds (like morphine 24/7). If I had drugs that worked my days would be a lot less limited and I wouldn't have nearly as many sleeping problems if I had something to help my pain at night. Then, I wouldn't need to be on Ambien. I'm at the point where I've pretty much tried everything and not much is left except medical marijuana, which although I am not a smoker, I would try it if it helped. I am willing to try anything as long as it doesn't kill me.
I am also looking into a Butrans patch. It is an opiate but it would be a patch so it would enter through skin systemically. I wouldn't be *thrilled* about being in pain killers 24/7 like I would with this patch, but I really think, if it actually helps, it would improve my quality of life. I don't really have much of one right now, so I'm still really trying.
One thing I am very excited about is a product called Quell I ordered. It is a wearable pain relief system that you wear around the top of your calf. It uses some kind of neurotechnology to send signals to the brain through electric waves to change your pain path. There's a chance it wouldn't work, but it's worth trying. It can even tell when you're sleeping and you can adjust accordingly with a compatible iPhone app. Hopefully it'll arrive in June!
PS. I found this "chronic pain workout" and I really enjoyed it, so I am sharing it here.
