A Letter to a Congress Woman.How about Federal Laws that Affect Fibromyalgia?

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By: Linda Schnittger

I wrote a letter to my congresswoman. I’m hoping that she’ll react, but I also think that this needs to be a viral issue. There’s three major issues that congress should fix for chronically ill patients.

I wrote this specifically from my viewpoint, but could you all possibly write your own story and address these issues with your congressmen?

I’m a disabled veteran who has fibromyalgia, among other problems. I’m writing over concerns I’ve had with fibromyalgia in particular, because it’s been on my mind a lot lately. I’ve learned that this is one disorder that requires me to be proactive about my health. There’s times when I have known more about it than my doctor, and I’ve frequently felt the need to educate them. I spent 23 years in pain before I was finally diagnosed. Then about a month after I was diagnosed by a rheumatologist, I had to deal with a nurse-practitioner who refused to accept my diagnosis. In her words, “Fibromyalgia is not a real disease, you’re just depressed”. She was the only care provider I’ve ever felt strongly enough about to write a formal complaint about. This after years of being told that I’m just seeking attention, or that I’m bored, a hypochondriac, you name it! One doctor even told me after the 9th anti inflammatory drug didn’t work that the drug works perfectly fine and that I just didn’t try hard enough. Since my diagnosis I now understand that anti inflammatory drugs aren’t helpful for fibromyalgia. It’s just the wrong medicine.

 

I’m concerned about the availability of the drugs that do work. Many of my friends with fibromyalgia take opioids, and because of changes in the laws, these drugs are becoming increasingly difficult to get. They get treated like criminals if they use them, even though they need them for pain relief. If they go through too many during a bad month, they’re considered addicts. If they don’t take enough, they get accused of selling their pills. Either way, they have had their prescriptions revoked. Some pharmacies are only giving out one weeks prescription at a time. It’s humiliating. And then I hear about the scrutiny that doctors undergo if they prescribe too many controlled drugs. But certain doctors prescribe more pain pills simply based on their specialty. It’s not fair to the doctors or their patients, and we’re getting less care because of the way we’ve been legislated.

Beyond that, many of my fibromyalgia friends have found relief through medical marijuana. I started doing research and I’ve found that while it’s legal in New York, the nearest doctor and dispensary are a two hour drive from me. This is a lot of travel for anyone who suffers from fibromyalgia. Even the ride is exhausting, Then I started researching the VA policy on medical marijuana. It’s extremely restrictive, even though it has the potential for helping so many veterans. Medical marijuana is different from the kind that gets you high. Medical marijuana is very low in THC and higher in canibidiols, which are very effective for chronic pain. I wish this was understood by Congress and that special permission be granted for its use.

On another frustrating note, while the VA has determined that I’m unemployable due to my health problems, Social Security has denied me disability benefits because they think that I can still work. It’s difficult to understand why one federal agency can’t accept the decision of another federal agency. I’m waiting on my appeal, but that wait takes years, and the wait causes financial hardships for not just me, but countless others whose lives are in a holding pattern just for the wait. I’ve spoken to people who have lost their homes waiting for a decision, and people who are in agony but can’t quit because they don’t have any support to tide them over until they get a hearing. A few have even said they had to wait 5 or more years before they were approved. I don’t see how this is fair for these people. I don’t know if you’re able to work on these issues during the next legislative session, but these issues are very important not just for me, but for the five percent of the population who have this problem, and the countless others who suffer from similar health problems and the laws that make their lives more difficult than it should be. I thank you for your time and consideration to these issues.

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