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Archive for the ‘Life with Fibromyaliga’ Category

Well, I knew it might happen: I stopped writing for a bit. Winter hits and I hit the couch.

While I am going to work to get back to writing here frequently, right now I need to share news with you all.

Last week, the Associated Press ran an article about Fibromyalgia suggesting that it was possible not really a disease and just pushed by drug companies to make money As someone with a journalism degree, I was appalled that the AP would let something like this get out — the tone is that Fibromyalgia isn’t real and that drug companies are faking it. To try and “balance” the piece, the author quotes a drug manufactuer VP to say FM is real. Why he didn’t call one of the thousands of doctors who treats Fibro patients or the College of Rheumatology, I just don’t know.

As a Fibromyalgia patient, I’m hurt. The article is setting us back. With this story running in newspapers across the U.S. it’s hard to take back the false information.

The National Fibromyalgia Association is trying though. Read their reaction, as well as other FM community members, here.

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While Fibromyalgia patients all have at least 11 trigger points of centralized pain, body aches and stiffness, we all experience symptoms to varying degrees. Some can be predisposed to anxiety, IBS or migraines. (The latter used to be a significant challenge for me, but I learned to keep it at bay via Biofeedback.) So, it’s not too surprising to hear that researchers are looking to define the subgroups within Fibromyalgia.

To begin to determine classification criteria, researchers are using the Fibromyalgia Impact Questionnaire. The short quiz asks about daily tasks inhibited by FM and levels of pain, fatigue and stiffness.

Thus far, two groups have been identified:

Type I: Lowest levels of depression, anxiety and morning tiredness
Type II: Elevated levels of pain, fatigue, morning tiredness, stiffness, anxiety and depression

Though, I wonder about the overall effectiveness of the questionnaire. I have really progressed in coping with my FM in the 10 years I’ve had the condition; yet, according to the test I’m well into the “severe” section. That said, in the last few months I have definitely been a part of the Type II subgroup – especially the pain levels and stiffness.

Has anyone else tried this questionnaire? How accurate did you think your results were?

It should be noted, others have been attempting to identify Fibro subgroups for a few years now by testing pressure-pain thresholds and genetics.

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Before getting into this post, let me apologize for the break in items. I had a significant Fibro flare-up, and started a new job. Let’s just say my body has been overwhelmed. However, all of this had me thinking about how much to share with my employer about my Fibromyalgia.

Once I was offered the job, I asked about flexible hours. I told my employer that I have a chronic condition that flares up from time to time and mornings can be particularly hard. I lucked out that my new employer understands.

Figuring out what to tell bosses about chronic illnesses and when to do so is always a tough decision. While employers shouldn’t fire you because of an illness, that doesn’t mean they can’t find a way to do so.

Before making the decision to disclose your Fibromyalgia to an employer think about where your condition is at currently and what, if any limitations it causes. If it may inhibit essential job functions, wait until absolutely necessary to confide. Otherwise, it depends on your comfort level and the climate of your company. It can be helpful to ask around to see if coworkers have been in similar situations. Of course, this will have to be done delicately.

Here are a few tips for having the Fibromyalgia talk with your boss:

  • Be positive. Talk more about your skills, qualifications and your ability to do your job. Reassuring your employer that your FM doesn’t affect your performance.
  • Do not present your Fibro as a weakness
  • Think about concerns he or she may have, and be prepared to provide information, strategies or solutions to each of those potential issues.
  • Know what workplace accommodations you may need. It may help to look into the availability and funding programs that your employer can access to make these accommodations.

The University of Delaware offers a list of ideal times to disclose disabilities (or in our cases chronic illnesses) and guidelines on how to do so if electing to tell a potential employer on its Career Services center’s site.

Whatever you decide to do, know that you aren’t required to tell your employer about your Fibromyalgia. In my experience, doing so alleviates job stress and makes work life more comfortable.

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Rain, rain go away!

Rain, rain go away!

A bout of food poisoning has hit me like a truck this week. While I’m now keeping down regular food, my Fibro has gone haywire. It’s raining in North Texas, to boot (weather changes can affect Fibromyalgia symptoms). It’s so frustrating to not be able to perform normal daily tasks when things like these hit. My muscles are so tired and pain is radiating throughout. At work today I found my forearms in agony after only a couple hours at my computer. I may not have carpal tunnel, but I tell you, the Fibro spots on my forearms flare up like you wouldn’t believe. I wonder if there is any new medication that could keep this from happening. I would try it in a heartbeat right now.

I’m in the process of working out all the details to start a new (incredibly awesome) job, and I’m hopeful that by the time we’re ready to go this latest flare up will have calmed. I suppose I should check the 10-day forecast.

(Note: Thank you for letting me complain. It’s work the arm ache, I swear.)

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After a silly bout of Fibro fog earlier today, I found this item over at ButYouDontLookSick.com. The tips for dealing with call centers when you’re chronically ill look so commonplace and obvious, but during a foggy moment having things written down beforehand seems appropriate. Eliminating stress is always a good idea, right?

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Seeing as it’s back-to-school time, Fibro Spot is out to focus on school stuff. So, this entry is a rarity: this one is for your mom. Being the parent of a kid with Fibromyalgia is surely just as painful as having the disease yourself, and I want to help you.

You already bought notebooks and pens, but now here are three things that can make school life easier for your son or daughter with Fibromyalgia.

The first one is obvious. Make the school accept that your child may need to take medicine throughout the day. This sounds simple, but often there are several hoops to jump through. Get a doctor’s note, and (provided your child is old enough) get permission for him or her to come take the medication as needed. This means if pain medication is waning early, she isn’t going to spend 20 minutes arguing with the school nurse that “You still have another half hour.” This makes life incredibly easier.

Next – and I swear if you tell your kid or my mom that I said this—sneak a granola bar or a pack of fruit snacks in her bag. Be sneaky, because we really hate this. However, taking medicine can lead to unhappy stomach, and having something there to calm it down is fantastic.

Finally, a voice recorder, digital if you can swing it. This one applies mostly to juniors and seniors in high school. Once you’re in classes with heavy notes, having the option to spare your forearms is a very good thing. Some recorders even come with software that can transcribe the audio for you.

If you can swing the extra cash for a digital model, it’ll be much appreciated. They’re slimmer and less conspicuous. Also, they’ll allow him/her to save the file to the computer and keep all the voice notes. Plus, the aforementioned fancy audio transcription element. (I don’t think it’s necessary at all.)

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I was diagnosed with Fibromyalgia just after beginning my freshman year of high school. (That means I was 14). Getting a diagnosis involved more tests than I care to recall, as it does with all Fibro patients. It’s fairly new that doctors are recognizing the syndrome in younger patients. Primarily, Fibromyalgia sufferers are classified as middle-aged women. However, if you talk to these women, you’ll find they have been suffering from Fibromyalgia symptoms throughout their lives.

The only problem with being diagnosed as a teenager? No support groups. No self-help books. No one getting what you’re going though. Learning how to be a normal teenager without sacrificing my health was a long process, and through Fibro Spot I intend to share those stories. I hope that high school and college students suffering from Fibromyalgia can gain some insight and tips to living a normal life though this blog.

That said, this blog covers more than just the youth experience. Fibro Spot focuses on the overall Fibromyalgia experience — finding doctors who listen, trying new treatments, coping with pain, explaining your condition to loved ones, etc. Anyone suffering from chronic pain should be able to find some answers on this blog.

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