Great Video on Insight to Dealing with 20 Years of Fibromyalgia

I really feel for this guy. This video is long and his fibro is really severe. Gets pretty interesting around 13:00 minutes in.

Like I said before, myofascial pain and fibromyalgia are closely related. In certain aspects, I really empathize with him. Even in my relatively short time of dealing with this, I've had similar thoughts. Watching this video is actually a little scary for me. After dealing with this for a year and a half, I can't watch this without being a little nervous this could end up being my life but it also helps motivate me to continue to work hard and recover.

He does a really great job explaining what it feels like to have deal with chronic pain on a daily basis. Hope this is helpful!

A Better Pain Chart

I seriously love this pain chart. Saved it for awhile, but seems pertinent now that the whole world is freaking out about Ebola. 

BEST. WEEK. EVER

As a chronic pain sufferer, "a good day" is a much different thing than a normal person's "good day." They range from "at-least-I-took-a-shower-today" days to "Felt-good-enough-to-put-on-a-bra" days to "got-groceries-and-did-nothing-else" days to "make-a-healthy-breakfast-and-do-a-real-workout" days and, for the record, right now those are my best days.

#thestruggle

The comparison to what may be considered a good day is laughable (because everything has to be) compared to the pre-pain days in NY. I could go on, but even for me, my life in New York seemed relatively unreal. That's also the reason why I find it so ironic to be back here in PA--went from having 3845903850498 things going on at once to literally nothing but trying desperately to control my body.

ANYWAY.  I drove down to Philly with my mom (about an hour and half), shopped for 6-7 hours and drove back…NO PAIN. I don't remember the last time this happened and it's exciting. I was able to go to the gym every day this week.  I had some pain in my lower left back from a nasty trigger point that comes and goes, but I have to factor in PMS will always exacerbate my symptoms and pain and so do injections post procedure.

This seems to be the general formula to be as humanely pain free as possible:



1) Sleep. You have to. Just do it. Honestly, I need at least 8 hours. Right now I'm doing best with 10-11 uninterrupted hours of sleep. If I wake up in the morning knowing I didn't sleep the night before it is a GIVEN you will feel like shit the next day.

2) Eating well. I have a blog post ready about food that has so much going on, it's actually daunting to think about. What I've been doing: eliminated alcohol and coffee, home make EVERYTHING as much as I can, eat the least amount of processed foods I can, complex whole grains, a lot nutribullets, a lot of iced green tea, a lot of water, a lot of really good spinach/kale salads and fruits as snacks (which I'm still working on). I naturally gravitate to bagels, Shake Shack, pizza and ice cream so give me a break! These are big steps for me!

3) Exercise. Gyms seem daunting when you have pain. I have bought strengthening bands so I do what I can with how I feel. If my pain is barely gym doable, I'll go to the pool and do my pool exercises. Even better than that, I go and do my land strengthening and exercises. If I don't feel good enough to go out, I use the treadmill at our house or try and walk the dog. Sometimes if that is okay, I add bands to that regiment. End goal is still back to my reformer pilates trainer.

4) Misc. China gel, TENSunit, Chiro 1-2/month, lidocaine trigger point injections 1-2/month, masseuse 1-2/month. Therapist 1-2/month. Also thought this looked like a helpful visual for using your TENSunit.

Knock on wood, things seem to be going well with some upcoming really awesome potential possibilities for the future!

Things I'm currently looking into--lidocaine patches for trigger points, essential oils, homemade pain salves/body washes, kinesio tape, traction tables--I'll keep everyone posted! 

Fibromyalgia and Chronic Myofascial Pain Syndrome: Are you misdiagnosed?

I am always getting questions about this. Some people know what fibromyalgia is, but not myofascial pain syndrome, so a lot of times, I tell people fibromyalgia is the closest thing to it. Some people who don't know any better mistake myofascial pain syndrome for fibromyalgia. I want to lay this out, so it's clear for everyone in the most basic way I can.

FIbromyalgia (FMS) and Myofascial Pain Syndrome (MPS) often go together. Because of the frequent overlap and some similar symptoms, they're often mistaken for the same condition and, as a result, people with both are sometimes only diagnosed with and treated for one. MPS can also evolve to FMS.  However, not everyone with MPS develops FMS. From what I've heard and read, early treatment of MPS may help prevent FMS (which is something you'd really want to avoid.) However, many symptoms do overlap.

The distinction between MPS and FMS is crucial for THREE main reasons:
1) They require different treatment.
2) You can eliminate trigger points.
3) MPS pain can exacerbate FMS, and treating MPS can calm FMS.

What a lot of people don't realize is that fibromyalgia has 18 very specific points to be diagnosed. I, personally, (only diagnosed with MPS), have only had pain in my neck, back and sometimes thighs. I've never felt any pain in my knees, elbows or chest. Any other pain that I've had with the base of my skull and hips have been caused by noticeable trigger points and most of that pain is gone now (thanks to trigger point injections). Here's a nice little diagram of the basic points for FMS.

FMS 18 points 

It is also important to take note the difference between tender points and trigger points. So basically, the muscle have generalized sensitivity with FMS, while with MPS, the muscle areas that are located away from the trigger points and their referral regions have normal sensitivity. With FMS, there is total body achiness, while with MPS, there are specific pains in specific areas. With MPS, the areas not affected by trigger points don't hurt, but with FMS, the areas outside the tender points still ache. FMS is a neuroendocrine disorder while MPS is a neuromuscular condition.

For the old people reading, you can click this to make it bigger. 

I guess if I'd have to choose, FMS probably sucks a little more. It's harder to treat and technically more chronic. Some people figure it out. (I have a friend who works out as much as she can and does acupuncture and it's managed. But, acupuncture didn't do a damn thing for me.) Unfortunately, a lot of people can't find a solution. MPS is still a nightmare (to me and a lot of other people, anyway) but there are physical points that can be treated and the outcome for people MPS is a little less bleak than for people with FMS.

To understand a little more about MPS, click on "My Diagnoses Dissected" tab.

Helpful links/links for reference: 

http://www.fmcpaware.org/m-n/myofascial-pain-syndrome
http://chronicfatigue.about.com/od/whyfmscfsarelinked/a/myofascialpain.htm
http://www.healingwell.com/library/fibro/webber3.asp
http://www.psychologytoday.com/blog/overcoming-pain/200901/myofascial-pain-syndrome-vs-fibromyalgia

Physical Therapy: A Necessary Evil

So much has been happening the past few weeks, sorry I disappeared!

Luckily, today I have been discharged from PT. 

This is really exciting because I really hate PT.  It doesn't mesh well with my personality. I don't do well with being constantly bossed around and naturally, I feel like I can do it better on my own.

My PT happily discharged me based on the agreement that I will be doing my own "wellness program". As much as I hate to admit it, I really do need to commit to it. Dr. Gerwin says once I'm "normal", I will have to work out 5 days/week. I gotta start sometime. It's progress, people.

At first I was really against the idea (surprisingly) of being discharged because I didn't think I was ready and am always worried about not doing things the correct way without someone watching me. But, really, when am I ever going to be truly ready?

I am actually starting to have more good days than bad and my "good days" are starting to feel like actual, real normal people good days rather than maybe-if-I'm-lucky-I'll-take-a-shower-today good days. 

So, consequentially, the OCD/control freak took over and after a long night of excessive pinning, this happened: 

It's not perfect yet and I will be laminating a pool excel chart so I can do all my pool exercises too (because I'm clearly insane), but my main goal is to try to go every day I feel good enough to. 

Over the course of the last year, I've also found a reformer pilates personal trainer who also has hypermobility (and a great sense of humor). I'm planning on starting up with her once a week again as well as re-joining the gym. I just bought a whole new set of resistance bands to take to the gym as well as my foam roller. (I know, guys, my life is super exciting/embarrassing.) 

I am also fully aware I will be "that girl" at the gym. 

This process is exciting but mildly terrifying. I'm nervous to make a mistake and screw it up like I did before. My over-ambitiousness is truly a blessing and a curse. Luckily, moving on from PT has always been part of the game plan to eventually being independent, out of the house and working again.

I have been trying my best to keep busy though. I get bored A LOT. My brother was home last week and I went shooting for the first time ever. I get so stir crazy and can't do any of my other favorite adrenaline-rushing activities, so this was all around pretty entertaining for a girl who never gets out of the house. 

The best news of the day: I may have an appointment (that I had initially scheduled for next May last January) on Wednesday with the leading hypermobility specialist at GBMC in Baltimore, recommended by Dr. Gerwin, Dr. Clair Francomano. I have been told, not only by Dr. Gerwin, that is she the person to see for JHS.  Seriously praying they confirm I have it tomorrow. 

If I do get the appointment, I'll recap the appointment with new helpful hints. 

Have a good night everyone! 

EDIT---

Someone else got the Francomano appointment before I did. Sad face. Guess I'll see her next May or until her office manager caves from harassment. 

How Pain Facebook Support Groups Actually Helped Me/More Ingenious Products

Like I've said in past posts, I am not one to show up to support groups and complain about my pain to strangers. Actually, unless you are my parents or best friend, I hardly ever bring it up at all unless I'm asked. I joined a few support groups on Facebook a month or two ago to share my blog and see other people's (read as: troll) comments/questions for writing inspiration and coincidentally, it became a lot more useful for me than I anticipated.

The last two weeks or so have been a little more rough than usual. A lot more trigger points have come back and I've been dealing with dizziness/nauseas spells (due to hypermobility.) Up until two weeks ago, most of my trigger points have been gone and I had generally been doing okay. But, if I would do too much, I would end up just feeling a really deep ache that still periodically made me immobile. This is a new kind of pain I was unfamiliar with and even though I know I need to go slow, I get so ambitious when I'm having a "good day", I start to feel invincible and wind up in bed for two days.

So, after a few weeks of spamming several chronic pain groups with my blog (since those are the people I want to really read it anyway), I ended up posting a question about this issue in this Facebook Fibromyalgia/Myofascial Pain Group. What I didn't realize until I joined the group was that the group admin was Devin Starlanyl, an MD who has written a TON of books on Fibromyalgia and Chronic Pain. This dumb Facebook group that I had indadvertedly joined was run by one of all the all-time authorities on trigger points and responded to every person's question on the group. For people who can't get afford the best doctor in the country (my doctor, Dr. Gerwin), she is an excellent resource.

Anyway, I digress.  Asked the question and got a ton of amazing feedback and products to help from Devin and a few others. If you're having pain similar to my deep achey pain, here are a few things that were to me recommended to help that I have bought/been using:

• Light Swedish massage (and constant communication with your masseuse to guide pressure correctly)
• China Gel - This is something a few months ago I would've looked at and considered total crap. It definitely didn't/won't help my spasms, but it's actually used by legitimate places like MayoClinic and has 5 stars on Amazon. I haven't checked the ingredients but I'm pretty sure it has menthol in it and makes it very cold on the spots where I rub it on. I love cold stuff and it's so cold, it distracts me from the pain. Not sure if that's what it's for, but it seems to actually do the trick.

• Penetrex Anti-Inflamatory Cream  -I am slightly less convinced this works as well, but it seems to do something. I usually put it on in conjunction with the China Gel and it feels like it helps with achey spots. I usually put it on right after PT.
  
• Thermosphere Heating Pad -This is the most crazy/cracked out heating pad I've ever used, and trust, there have been a lot of heating pads in my day. See the little clicker on top of the pad? You press it until the (moist!) heat gets as hot as you can stand and let go. Then, slowly, the heating pad starts to cool down and you press the clicker again. The increase and decrease really helps with the ache (and strangely enough, spasms!). It's a little pricey, but this thing is a slice of heaven. 
  
• Soft Foam Roller - Okay, proceed with caution with this puppy. Everyone that said they loved using a foam roller said to learn how to use it before you just start trying shit. Sometimes I'm immune to good advice but, surprise, turns out they are right. I asked my PT if I should use it and he said I could, so I ended up watching a lot of Youtube videos like this for guidance. Most of these moves are too intense so a lot of the time I just put it underneath me, straight down my spine or perpendicular on my lower back and just lay there and it feels pretty good. Make sure if you are still tender/sensitive you get a soft one! 
  
  
  
  
  
  Enjoy! :)

What Grinds My Gears: The ALS Bucket Challenge

I know this is a little delayed, but I feel the need to rant about the ALS challenge -- and apparently, I'm not the only one. I have seen far too many dumb ice bucket videos. The only thing happening in most of these videos is water being poured over someone and "challenging"three people. ALS isn't even mentioned half the time and I would be willing to bet 75% of the people on my Facebook/Instagram could not even tell you what ALS is. Even Steve-O is criticizing it. Steve-O wrote on his Facebook “The fact that not more than fifteen million dollars has been raised is a tragedy. It's tragic because I don't think many of those celebrities even bothered to mention how or where to donate money for ALS research. Most of them just poured water over their heads and named three random people, without including any 'call to action' which actually benefits victims of ALS at all.” He goes on to say that he is educating himself about the disease and donated $1,000.

This is really frustrating for me because, as someone who deals with rare and chronic pain, I would rather have real awareness than mass amounts of money. I don't understand why the challenge has to be pouring ice water on your head, when you could have an all around win-win, like #bloodnomination. If you think about how beneficial this is, the social media whores of the world can take their viral picture donating blood and it will actually help people with cancer. Everyone wins. 

I get that the Ice Bucket Challenge has generated a lot of money and I think that's great, but if you think about all the celebrities that are doing this, there should be so much more donated. It truly disgusts me that donating is seen as the "consequence". Maybe you don't have $100 to donate, but at least donate something. I donated to the American Chronic Pain Association too when I was "challenged."

Start video at 1:58.

I see videos like this and can't help but feel for him. I can't imagine how much that much truly suck and I really can't imagine why people feel like pouring water over their head would be more helpful than finding out what ALS actually is and donating to the cause because of it.

Make a video (or don't--I didn't) and a donation.  Rant over.