Traveling with Chronic Medical Conditions

I’m about to travel to Boston soon, and I’m super excited. I love Boston and will get to spend time with a much-loved friend from college days. However, chronic conditions threaten to put a kink in my travel plans, and I’ve been running around town and spending lots of time on the internet trying to make my travels as smooth as possible.

One of my concerns, secondary to my chronic neck and back pain, is psoriasis. I’ve been dealing with an outbreak of guttate psoriasis for almost two months now, and it’s tedious to say the least. It’s currently under control on my limbs, but my torso is covered in angry red patches. My insurance company—this makes me so freakin’ furious I almost can’t see straight—is attempting to deny coverage for the topical medication my doctor prescribed to rid me of the psoriasis outbreak, so I’m walking around itchy and feeling gross. The medicine would be $800+ if I paid out of pocket, and not only can I not afford that, but I absolutely refuse to pay out of pocket for something insurance should cover. We pay more than $1,000 per month for the married couple’s policy, yet it doesn’t cover the one prescription medication I’ve needed in a long time.

I’m trying to deal with the psoriasis without prescriptions and so far haven’t gotten good results at all. Gluten-free, dairy-free, sugar-free diet—yes. Scent-free hypoallergenic bath soap—yes. While a restrictive, healthy diet and organic soap likely help my overall health, the psoriasis persists. I’m very lucky that it’s only guttate and not a more serious form, but it still sucks. I don’t want to compound the discomfort of travel by itching like hell, but it looks like I may not have a choice.

What really worries me about travel is my insomnia and chronic pain. I still can’t sit on a soft surface, despite experience massive improvement in pelvic stability since dedicating myself to a challenging core workout routine. I’ve even returned to running—a huge, happy milestone—but sitting on a soft surface (like a plane seat) is almost impossible. Something about cushioned seating makes my pelvis shift, which causes instant misery. I plan to stand as much as possible and kneel in my seat if I have too. I’m a small person, so hopefully I can do what I need to do without bothering my fellow travelers. If not, I guess I’ll probably end up inspiring someone’s bitchy Facebook post about a squirming seatmate. Sorry in advance.

I always worry about an impending attack of cervical dystonia, and change is my enemy as far as muscle spasms are concerned. I’m going to try to fit my cervical pillow into my suitcase so at least I’ll have a familiar place to rest my head and neck at night. Flying up the coast and sleeping in an unfamiliar bed worry me, but I refuse to let my sketchy health rule my life.

I bought some homeopathic zinc lozenges today and will use Counter Attack supplements to try to help my body through the germs it’ll encounter in airports and new cities. I also bought some hypoallergenic cleansing wipes and will make sure to scrub my phone with wipes, too. I’m not paranoid, just realistic, and I imagine anyone with chronic pain and/or chronic disease can relate.

Fibromyalgia YouTube Channel

I started a YouTube channel the other day, and I haven’t felt so un-technically savvy in a very long time. The upload was simple, but the rest was not. I’ve only posted one video so far but have big plans to put a lot of fibromyalgia-related stuff on YouTube in the future.

My first fibromyalgia video is about the hives, rash, or whatever is on my skin. I’ve had skin problems for many years– about the same amount of time I’ve had fibromyalgia, although the fibromyalgia wasn’t diagnosed until a couple of years ago. The new dermatologist I go to says the rash is guttate psoriasis, which is blessedly less severe than plaque psoriasis. My first YouTube video shows an outbreak on my torso.

I’d love for you to submit your ideas for a fibromyalgia YouTube channel. Ask and I’ll try to make sure you receive!

Running Again, with Hives

40 minute run
I walked for 15 minutes and ran for 40 minutes!

I have some great news! I’m able to run again. I’ve actually been running for a couple of weeks, but I waited to share until I was sure I was going to be able to return to running consistently. I took a picture of my watch this morning to help me document my celebration. That’s 40 minutes of running! This is a huge victory for me. I already feel my sanity returning and my thoughts clearing.

In other news, I’m battling hives again. Do any other fibromyalgia patients get unexplained skin issues? I’ve had two punch biopsies (ouch!) over the years. One dermatologist said the hives are an allergic reaction. To what, he didn’t know. The other dermatologist said I have guttate psoriasis. I tend to disbelieve both of them. Either way, my hives itch. They’re currently on my trunk, elbows, wrists, left breast, and right knee pit. Luckily they’re not nearly as bad as they have been in the past, although I wish they’d go away. It’s so much easier to deal with the hives since I’m running again. There’s something about running that makes me feel like I can take on anything.

hives
My torso is covered in patches of small, itchy hives.

I’m not sure what my next running goals are. I’m hesitant to make any new goals since I’m still just grateful to be able to get out there and run. The core exercises that I do every day have made a huge difference in my life. I’m convinced that increasing my core strength and stability has helped stabilize my SI joints. The spinal support offered by strong muscles is fantastic. And the proof is in my return to running. Planks suck, but they work. I have to be very careful with my movements to keep my back pain-free, but I’m running again, so I feel pretty damn good.

Raynaud’s After Running

raynaud's
White, cold, and numb. Yuck.

I ran six miles in 58-degree weather, and even though it was sunny and beautiful outside and I never felt too cold, my hands told a different story. Raynaud’s Phenomenon sometimes turns just one or two of my fingers white and makes them go numb, but this particular run provoked several pasty appendages. I know there’ve been suspected links between fibromyalgia and Raynaud’s, but I wish there were more information for patients. I don’t want to take medications or have surgery or do anything else drastic, but I would definitely like for my fingers to stop going numb when it’s not even extremely cold outside.

Raynaud’s Syndrome and Fibromyalgia?

Does anybody else have Raynaud’s Syndrome along with fibromyalgia? As the weather gets colder, I start turning blue and feeling like crap. If I run or walk for more than a half hour outside in the cold, several of my fingers turn plastic-y white and go numb. As I rewarm my hands, the pain is tingly and bad. Anyone else with a similar experience?

Fibromyalgia and Rashes

I’ve had a lot of people ask about the rashes I sometimes reference on this site.  I’m including an old picture from when said rash was pretty gruesome.

fibromyalgia rash
This is a view of my side, between hip and breast-level.

I never had skin trouble until everything else started going downhill with my body. For me, rashes are a nasty consequence of fibromyalgia. These pictures are from my first major rash several years ago. The one currently on my hip is much less evil, but definitely a nuisance. Clobex lotion is the only thing that makes the rashes disappear, but I hate using it. It makes my skin feel hot and thin and fragile, and it’s extremely expensive.

I’ve had the rashes biopsied twice, and the first biopsy showed a non-specific “reaction” (definitely one of those times when I wondered why I bothered to give over my flesh and money), and the other result came back “guttate psoriasis.” The psoriasis diagnosis sort of makes sense, except that sometimes my rashes appear at specific times—like within 12 hours if I take valium (so I obviously don’t take it anymore). But again, I never had anything like psoriasis before I started having other fibromyalgia symptoms, so for me, they’re inextricably linked.