My first thought when asked to write my experience
with medications, was that my story might be boring, as I take so few
medications. After more thought, however, I kind of concluded that my story is
not that uncommon. I used to think it/I was weird to be so chemically sensitive,
not just to meds but other things as well (like herbs, certain supplements, and
many fragrances, etc). But, over the years, I've met many others with
RSD/CRPS who are likewise chemically sensitive. Still, we all know that,
despite the commonalities, there are many differences, be it with symptoms,
treatments, medications, or whatever, proving once again there is no rhyme or
reason with RSD/CRPS. Though some can take opioids, some can't even take
aspirin. I probably fall in the middle of the spectrum. Though hyper-sensitive,
I have found some meds I am able to take.
Having had RSD/CRPS for 29 years, I can't remember
the names of all the meds I have tried and doubt they are all still in use,
anyway. I do know I have tried many NSAIDs (Nonsteroidal
Anti-Inflammatory Drugs) over the years, such as Naproxen in earlier years,
which I couldn't tolerate, and Celebrex in later years, which I could
tolerate. Other anti-inflammatory drugs I tolerated well were Bextra and Vioxx,
which were ultimately deemed unsafe and taken off the market. In the end, NSAIDs
caused damage to my esophagus and gave me a stomach ulcer. Though I still take
an anti-inflammatory, I have switched to Meloxacam because it's a lower potency
and it's just enough to take the edge off my pain.
Though I have tried
Opioids/Narcotics, they didn't work out for me. Vicodin and
Percocet were too nauseating. Hydrocodone was too constipating and made me sleep
alot. Even, while awake, I was drowsy and unproductive. Plus, the dose kept
needing to be increased and I was worried about becoming addicted. My overall
thought is, if medicine helps the issue at hand but creates other problems, it
defeats the purpose. I would just be exchanging one problem for another.
I also take the
Anti-seizure/Anticonvulsant drug, Lyrica, which works well for
me; whereas, Neurontin did not. The NSAID and the anti-seizure help by taking the
edge off my pain. For a new injury or a flare, I supplement with Tylenol
Arthritus. Beyond that, I've learned or chosen to cope with the pain.
Admittedly, my pain is less than it used to be but this has always been my
method/routine, regardless of my pain level. The only difference is how many
tears I've cried, then (with greater pain) versus now (with lesser
pain).
In recent years, Namenda (the drug used to treat
Alzheimer's Disease) has been used off label to treat RSD/CRPS. It is an
Anesthetic that acts to inhibit
glutamate, which transmits pain messages to the pain receptor
neurons. In layman terms, it
would help reduce the pain by blocking
/reducing the brain's mis-firings. I took this
med for a short time. Though there was no negative reaction to the drug itself,
the side effect of constipation caused me to
be severely impacted. Despite taking precautions, nothing could have prepared me
for that situation. I believe Namenda is a good drug and a viable option for
treatment of RSD/CRPS, but it's effect on me is not one I care to re-visit.
Nexium, an Acid
reducer, is also a staple in my arsenal, since I suffer from GERD.
Before taking Nexium, I took prescription Pepcid, which didn't do much at all
for me. I also require an Anti-fungal, which, too, is not
uncommon with RSD/CRPS. The one I take is called Ketoconazole. Though it doesn't
cure the problem, it controls it better than the other two meds I previously
tried. In my experience with RSD/CRPS, it's been a case of injure easily/ heal
poorly, meaning that each injury has healed partway and stopped. I see a
similarity with medicine, in that it helps but doesn't heal (i.e. it goes
partway and stops)... random thought!
For Diabetes, I take Glyburide. I
first tried Metformin but reacted to it. So I stopped taking it awhile, then
tried it again and reacted to it again. My doctor laughingly says, when
discussing medicine side affects "Well, if it can happen, it will happen to
you." I took the blood thinner Plavix for many years with no problem, then
suddenly I couldn't take it anymore. So now I take low dose aspirin to prevent
my blood from clotting.
I took Glucosamine Chondroiten for at
least 8 years and it worked like a miracle product but later, when I was on
Neurontin, the Neurontin conflicted with the GC and I could not take the GC
after that. The Neurontin actually conflicted with another supplement, as well.
Ultimately, the Neurontin burned my scalp and body, requiring me to discontinue
it's use.
In my wellness regimen, I take extra
(though not massive) amounts of key supplements like multi vitamins, Calcium,
Magnesium, Vit. D & C. I might add that my hypersensitivity is not only to
what I take, but also how much. So that's the
story of a chemically sensitive patient. For others of you with the same
situation, I hope you have a doctor who listens and works with you to find what
helps you the most.
Copyright Mary Jane Gonzales
Written for Reflex Sympathetic Dystrophy Magazine #2
