Sarcoidosis Ruled Out

I finally saw my allergist/asthma specialist last week. I told him I had Erythema Nodosum on my legs, chronic hoarse voice, and a nagging, chronic cough that has been going on for several years now. I was told to rule out Sarcoidosis, just in case, so he ordered a chest X-ray, which I had done last Friday evening.

I got a call from the doctor this morning who said my X-ray looks fine, so Sarcoidosis has been ruled out for me at this time.

In the meantime, we switched up my asthma and allergy maintenance medications to see if they can help me with my cough and hoarseness. So far not much has changed, but he told me to call him in a couple of weeks to see how the new meds are working for me.

In the meantime, I'm still nursing my left side and trying not to cough, as it hurts the muscle to cough or move around too much. Oddly, I feel more of an urge to cough lately. Though the productive cough from last month has passed, I'm finding that whenever I inhale, my throat seems irritated and wants to cough. Sometimes I just have to do it, though I try to hunch over or sit down if I can, since that hurts my side less.

Also, I'm still stuck on 10+4 for the Baby Steps workout, since I have skipped many days and haven't been doing sit-ups since I hurt my side. I did do my wall push-ups, 4 arm lifts, and 4 minutes on the elliptical this morning, so I'm trying to keep going and stay somewhat fit. Once my side heals up, I may have to do fewer than 10 sit-ups to start with, but I'll work my way back up again. :)

The Fibro ToolKit

Are you prepared for everything that could go wrong during a flare-up?  Do you have what you need as a Fibromyalgia patient?  Do you have a Fibro Toolkit to help you manage your physical and emotional health on a daily basis?

I was only diagnosed 3 years ago, but I've already collected quite a collection of tools and precautions - just in case.

Here's what I have, and what I think every Fibromyalgia sufferer should also have:






A Good Fibro Doctor

It's not always easy to find the right doctor, but if you don't like the one you've got, do what you can to keep looking for and trying new ones until you find one that you can work well with.  A good doctor is one who believes you, listens to you, and understands Fibromyalgia and the various ways to go about treating it.

Even better than one good doctor is a great team of doctors who effectively works together to communicate on the various health issues you need treated.  If you're not happy with your health care providers, move on.


A Library of Practical and Useful Books

Do some research and invest in or borrow at least one or two good resources to look back at from time to time.  Fibromyalgia encompasses a lot of various symptoms and has a lot of overlapping conditions associated with it.  It seems it's never the same condition twice!  As the fibrobeast evolves and confounds you, having a reliable text nearby may help with figuring it out and perhaps calming it or even explaining it to others.

The books I own are:

• Fibromyalgia and Chronic Myofascial Pain: A Survival Manual by Devin J. Starlanyl & Mary Ellen Copeland
• The Trigger Point Therapy Workbook: Your Self-Treatment Guide for Pain Relief by Clair Davies, Amber Davies, & David G. Simons

A Subscription to the Fibromyalgia Network News Journal

Like the books above, there is pertinent information that is great to consult for the myriad symptoms that plague us fibromites.  However, the Journal is published regularly and contains shorter articles that keep us updated on new research regarding causes and treatments.  The timeliness of this information is extremely useful and well worth the yearly membership fee.

If you can't afford membership, you can still look here for fewer, but still useful, articles - online and for free.


Useful Self-Massaging Tools

My Thera Cane and Knobble are handy for massaging certain spots, but if you're short on money, find yourself a tennis or other kind of ball or two and an old sock or stocking.  Put the ball or balls in the sock and tie the end.  Throw it over your shoulder and lean agains them on the wall or chair.  Or, they work on the soles of feet or other areas where pressure can easily be applied (without straining).

I also see a great massage therapist every two weeks for an hour-long massage (mainly on my back, neck, shoulders, and face) which helps release the myofascial trigger points I have.


Heat Wraps

Though some people like icing their pains, I find heat to be comforting on my painful areas.  I have worn out a couple of heating pads already and am currently on my third.  It is dedicated (mostly) to my spot on the couch.  At work, I keep "Bunny" in a closable leftover container for microwaving.  I made "Bunny" using a pair of soft socks, a bag of dry rice that cost less than a dollar, a piece of ribbon I just happened to have, and some hand-sewing.  I also have a fancier model that was given to me as a gift.  The shape of it lends itself more to a back or shoulder than the curvier part of the neck.  But "Bunny" is better for that, especially as hands-free.


Pill Organizers

I have two weekly pill organizers that are different colors.  One (white) is for my morning doses and the other (blue) is for my bedtime doses.  I have had to take some medications in the afternoons or middle of the day, but luckily those were temporary.  For those, I kept a supply in my purse and a daily reminder on my cell phone to let me know when to take my medication.  If you have one or more regular maintenance drugs that have to be taken at other times during the day, definitely invest in a third weekly pill organizer or some sort of other effective system to keep track of your meds. 

I fill both organizers at the same time, once a week, and make note of any prescriptions that need to get refilled soon.  Then I refill anything I need online ASAP so I don't forget and run out.  I also have a great system for making certain that I take my pills when I'm supposed to.  At bedtime, I take out both my morning and nighttime pill organizers and place them on the bathroom countertop.  I take the nighttime meds right away, then put the nighttime organizer away.  I leave the morning organizer on the counter until I wake up.  I figure the first and last things I do each day are to visit the bathroom, so I have made taking the meds part of that routine.


Effective, As-Needed Medications

In addition to the maintenance medications I take every morning and every night, I keep a small stash (in a traveling, purse-sized container) of various pain pills with me at all times, in case I need to rely on something to save me from disaster while I'm out.  I have: pain pills, muscle relaxants, headache pills, antacids and gas pills.  I have medication to help me focus for when I need to do well at work but the pain keeps distracting me.  I also keep an allergy medication and my rescue inhaler for asthma emergencies.  In addition, I have sugared ginger cubes in a baggie at work and at home, in case I feel nauseated.


Zostrix HP, Arthritis Pain Relief Cream
Zostrix is a cream that contains capsaicin.  I heard that capsaicin, which is derived from hot peppers, has a natural ability to lower Substance P - the chemical in our bodies that help our brains detect pain signals - with regular use.  Since studies have shown that Fibromites have too much Substance P, I figured I'd give this creme a try.  I don't use it often, as it heats up the area where applied, and my pains tend to wander too quickly to make use of the long-acting effects to be comfortable.  I usually opt for real heat, but use Zostrix when I know I'll be away from heat wraps and I'm having pain flares in more stubborn locations, like my upper back or my hip.


Someone Close Who Can Help You

I am lucky to have a husband who has learned what is most difficult for me and has taken on the burden of doing the more strenuous chores for me, and helping me when I ask.  He learns about the aspects of having Fibromyalgia along with me, as new experiences and information come about.  Without him, I don't know what I'd do.  Every fibromite needs someone they can ask for help and understanding, even if it has to be outside the home.


Fun, Easy Things to Do During Flare-Ups

One of the hardest things Fibromyalgia patients struggle to do is pace themselves by taking frequent rest breaks.  When we do, it's nice to have things we enjoy doing to keep our mind off our worries.  For instance, I like journaling, and I can do that from bed or my "nest" on the easy chair.  There are a couple of books I enjoy reading, too.  Then I've got a sketchbook for drawing (though I haven't done much yet), a Sudoku book (comes in handy in the bathroom), and there are lots of great places to read or be silly online if I'm up to being at the computer.

Pets or stuffed animals can also be fun to rest the mind and relief stress.  Remember to make sure you have things you can easily do in the middle of the night, for those sleepless hours that inevitably come our way.


WRAP: Wellness Recovery Action Plan

The idea for the WRAP came from one of the two books I listed above (the first one).  Bascially, you write out all the things that you should remember to do when you feel a flare-up starting, but probably have too much fibrofog to think straight.  Here's mine.


That's about all I can think of.  What's in your toolkit?  Share your tips!

My Fibromyalgia Story on Fibroduck's "Faces of Fibromyalgia" Blog

I submitted to Fibroduck a personal account of my transition from normal Benia to the Fibromite Benia I am today. It was published on the "Faces of Fibromyalgia" blog today.

Please click here to read my account.

To submit your story to the Fibroduck "Faces of Fibromyalgia" blog, please include a head and shoulders type photo of yourself and send an email to admin@fibroduck.com.

I'm Going Off the PPI

I left a message for my GI doctor last Friday because I was getting low on the proton pump inhibitor (PPI) medication and wasn't sure if I needed to continue taking it.

As you may recall, I began taking them to treat a painful bout of gastritis a few months back. I had found relief after taking the medication daily (once each morning). Anyway, I just spoke with the doctor about whether or not to continue taking this medication and was told to try staying off the drug for a while and see how I do. Since my gastritis seems to be under control and my IBS is finally under control at the moment, I'm hoping my body will be thankful (and not vengeful) for taking one less drug each day.

On a side note, I'm coughing a ridiculously lot since last Thursday. I've had an annoying, dry cough for a few years now, but since last Thursday, it got really frequent. As of Friday, the cough seems to have gotten a tiny bit of a rattle, but only sometimes. I assumed I was getting a bug, but because I am not dealing with any other cold or flu symptoms (from what I can tell as a fibromite) I'm wondering if GERD is the next problem. I think getting off the proton pump inhibitor now could be telling if the cough gets worse.

It would be nice to just have some stable health for a while, but with FM, if it's not one thing it's another.

C'est la vie...