I know every single one of you can relate to the story I’m getting ready to share. For those of you who are my regular readers, you’ll know I’ve been having neuropathy in my feet for several months now. My podiatrist had referred me to a neurologist with orders to run blood tests to see if there is a dicernable cause for my neuropathy. After waiting six weeks for an appointment, I finally saw the neurologist earlier this week.
It ended up being a complete waste of time and a $25 co-pay! Based on recent blood tests from my family doctor, the neurologist quickly ruled out the most common reasons for neuropathy. I don’t have diabetes, hypothyroidism or a B12 deficiency, and I’ve never taken chemotherapy drugs. So, he shifted me to the “20 percent of neuropathy cases where we don’t have a cause” category. Fabulous!
Then, of course, the neurologist wanted to write a prescription. The typical treatments for neuropathy just happen to be the same drugs they prescribe for fibromyalgia. They don’t stop neuropathy from progressing; they just dampen the pain a bit (if they work at all).
Neurologist: “Want to try Lyrica?”
Me: “I’ve already tried it. Can’t take it due to side effects.”
Neurologist: “What about gabapentin?
Me: “Nope, same thing.”
Me: “No, can’t take it.”
Me: “Isn’t that a cousin of amitriptyline?”
Me: “Amitriptyline made me gain 40 pounds!”
So, there we were. He’d ticked through all of his tools, and they were useless.
We always see these news stories about how “advanced” our medical system is and how fast it’s “evolving.” I may be true in some segments of medical care, but when it comes to chronic conditions, like neuropathy and fibromyalgia and ME/CFS and hundreds of others, our physicians might as well be practicing in the 1800s. The tools we need to improve the quality of our lives are just not there.
The neurologist finally had to conceed, “I guess pharmaceuticals are not going to work for you.”
I started pleading for other answers. “What about supplements? Is there anything on this entire planet that will stop the nerves in my feet from dying?” He had no answers. Nothing. Nada.
In a way, I respect him for being honest enough to say my problem is larger than he is. I walked out of there holding back tears. It is beyond frustrating and disheartening for someone like me who is logical and believes there has to be an answer for everything to be told “there is no answer.”
Top stories …
A warning to women of child-bearing age who are taking Lyrica: “Epilepsy drug Lyrica linked to birth defects risk”
Simmaron Research: “New Hemispherx president says getting Ampligen approval top priority” (Ampligen is a new drug that’s been under development for ME/CFS.)
NationalPainReport.com is conducting a short survey of fibromyalgia patients. It’s just 9 questions related to treatments, physician/family support, etc. The results will be used to guide future fibromyalgia news coverage on National Pain Report. Please consider participating!
New antiviral drug combo for fibromyalgia may outperform Lyrica or Cymbalta.
Next week, #MEAction is hosting its first protest in Washington, D.C. to raise awareness for ME/CFS. Since not everyone is able to attend, the nonprofit has come up with some ways to protest virtually.
Hoping to piggy-back on the success of the ice bucket challenge, the Open Medicine Foundation’s End ME/CFS Project has launched its “Undies on the Outside: Be a Superhero for ME/CFS” campaign.
HealthLine.com just published its 2016 list of best fibromyalgia blogs, and guess who made the list?!?
Research and treatments …
Fibromyalgia News Today: “Fibromyalgia pain traced in study to disturbances in rhythmic brain waves”
Bel Marra Health: “Fibromyalgia pain associated with cytokines and oxidized LDL levels”
Two Stanford University studies are giving hope to those with ME/CFS.
Stanford researchers recommend low-dose naltrexone as treatment for fibromyalgia.
MedicalXpress: “Chronic fatigue patients more likely to suppress emotions”
Fibromyalgia News Today: “Heart rate is more variable in fibromyalgia patients”
Dr. Lily Chu explores the incidence of suicide among those with ME/CFS.
Researchers study characteristics of housebound vs. non-housebound ME/CFS patients.
Dr. Jarred Younger, who researches fibromyalgia and ME/CFS at University of Alabama at Birmingham answers questions during part 1 (video, 1 hour, 4 minutes) and part 2 (video, 1 hour, 5 minutes) of a YouTube chat.
From the blogosphere…
Being Matt: How becoming comfortable with the uncomfortable can help us find peace in living with chronic illness
Grace is Sufficient: “What to do when you’ve hit the wall”
Chronic Mom: “Top 5 reasons fibromyalgia is the best ‘fake’ disease” (FYI: This is satire.)
Grab your reading glasses and your favorite beverage because here’s a list of blog posts from the #May12BlogBomb on International ME/CFS and Fibromyalgia Awareness Day.
Odds & ends …
Where do I sign up? “Nap bar in Dubai lets you take breaks during busy days”
6 simple ways to save money on prescription drugs
MindBodyGreen: “5 creative ways to beat insomnia (when nothing else works)”
Adrienne Dellwo from VeryWell.com gives us tips for choosing pain-free clothing.
In “Balancing Hope & Acceptance,” Prohealth.com columnist Suzan Jackson shares some practical advice on how to balance the hope of recovery with the acceptance of day-to-day life with chronic illness.
In case you missed it …
This month on FedUpwithFatigue.com:
In celebration of International ME/CFS and Fibromyalgia Awareness Day, FedUpwithFatigue.com readers shared what they wish others knew about living with ME/CFS and fibro.
I reviewed the Quell wearable pain relief device, and guess what, it actually worked!
Each week, FedUpwithFatigue.com covers the latest news, research and practical tips to help you live better with fibromyalgia and ME/CFS. If you liked this post, please sign up for updates below.