My Experience With Medications

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