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.

Chronic Pain Etiquette

From time to time, I have been asked by friends and family (sans pain) what is appropriate to say to me (/someone they know dealing with chronic pain) and how I would prefer to be supported by them. For a long time, I had no idea so I just went incognito for awhile (more on that in an upcoming post).

I think, unintentionally, people would say things that I thought were ignorant and generally pissed me off. I'm sure all of you reading with pain can relate and everyone that's reading that are fortunate enough to be pain free , read up, because this is some shit you'll want to know.

DO:

• Be supportive.
• Call and check on them.
• Be respectful.
• Research to better understand.
• Visit occasionally (if they are up for it, they may turn you down but it is nice to offer.)
• Offer assistance when you can.
• Tell them you care, show when concerned.
• Send things. Whether you feel like going through the effort of a "care package", a card, anything!  I love funny stuff and people send me funny Youtube videos, someecards.com cards, motivational quotes, good music, TV show and movie suggestions…whatever! I love it all and really do appreciate it. 

DON'T: 

• Make suggestions about their medication or management for pain. (I am in several groups and forums for people with chronic pain and this is probably the most bitched about subject. Everyone is different and sometimes opinions you think are valid could be counterproductive and actually do more harm than good. Best to just keep it to yourself.)
• Ask for pain medication.
• Tell them they don't "look" sick.
• Act like they are contagious. (This is really dumb, but needs to be said.)
• Say they're faking it.
• Say it's all in their head.
• Tell them to "get over it".
• Say the illness they have doesn't exist.
• Comment about their mental health. 
• Make uninformed suggestions about diet, exercise, etc.
• Assume they're being flaky and take it personally if they're forced to cancel plans. 

THINGS TO SAY: (This may be redundant to "do" and "not do" but this is a crash course on chronic pain etiquette for dummies and can't ever just assume--because you know what happens when you assume.)

• "How are you doing today?"
• "Is there anything I can do to help you make your life easier?"
• "I am here for you, whatever you need."
• "I am so sorry you are going through this."
• "I hope you start feeling better soon."
• "I really admire how you're handling all of this. I know this is difficult for you."
• "I will keep you in my thoughts."
• (If you are with them and they are having trouble moving/generally getting around) "You look like you're having a lot of pain, let me get that for you."
• "I am so sorry I judged you before I understood your situation."

THINGS NOT SAY: 

• "You need to exercise more."
• "Aren't you feeling better yet? I feel like you've been sick forever."
• "Maybe you're just depressed."
• "It's all in your head."
• "I wish I had time to take a nap."
• "If you just had a more positive attitude…"
• "I know ______ and they do _______. You should try it."

• "There's no way you're in that much pain."
• "You're just doing this for attention."
• "Work through the pain!"
• "You're too young to feel like that."
• "Just tough it out."
• "If you just got out of the house some more…"
• "You're so lucky you get to stay in bed all day!" 
• "What if you just found God?" (To anyone that's religious, I apologize. I am not a religious person and this is probably the most annoying thing you can say to me and the closest I will come to punching anyone in the face. And yes, this has actually been said to me several times---I live in "God's country", dammit.)

Enjoy! 

"Why the Funniest People Are Sometimes the Saddest"

After Robin Williams' death, I ended up being a lot more upset, in ways I couldn't imagine, about a celebrity I had never even met. Of course, when anyone commits suicide, it's an upsetting thing but there is something so deeply disheartening about it being a comedian.

Like I had mentioned in my "Finding the Funny" post, a good chunk of my time in New York was spent sitting at a long table in the back of Olive Tree Cafe with a bunch of comedians, in Greenwich Village, right above the Comedy Cellar. After being told myself from several comedians that I was "a dark and twisted person", I slowly realized that it wasn't just me. Several comedians have periodically joked with me that being a comedian is fucked up profession. You are literally on stage trying to make people laugh at you and I have learned that many comics are some of the deepest, darkest people I have ever met. (I am not trying overgeneralize all comedians. This is obviously through my own personal experience.) Everyone knows, and I have been told a million times myself, that humor and sarcasm are a psychological coping mechanism for depression, pain, trauma, etc.

If you take a look at Robin Williams' "rap sheet" (non professional resume), here's what you have: one failed marriage due to an affair Robin had (and was later sued by the woman he had the affair with for giving him herpes), second marriage failed to first son's nanny, third marriage to a graphic designer, major drug and alcohol abuse in the 70's and 80's, overweight and immensely shy kid until high school (read as: seriously bullied), complicated and terrifying relationship with his dad, fear of abandonment issues, plus his mom was a Christian Scientist (That alone is enough to screw you up). He's also made public quotes like these:

Such a sad quote for such a funny guy. 

I'm not saying what happened isn't heartbreaking, but I'm honestly not surprised. The next day (yesterday), several comedians (pretty much exclusively who I follow) started tweeting about depression and Jim Norton, a comic I have met on several occasions, wrote a beautiful article on TIME.com about depression in comics. (I made the title of this post his title in quotes for anyone that got confused.) Jim will be the first person to tell you he had struggled with depression and addiction and he also happens to be hilarious. In his article, he had mentioned "The funniest people I know seem to be the ones surrounded by darkness. And that's probably why they're the funniest. The deeper the pit, the more humor you need to dig yourself out of it." In his 25 years doing stand up, he has known eight comedians that have committed suicide.

Then Chris Rock tweeted/Facebooked this statement:

So then I looked into a little more and found out from Slate, that Laugh Factory, one of the biggest comedy clubs in LA, has an in house therapy program. Here's a quote from the article; "Two nights a week, comics meet with psychologists in a private office upstairs, discussing their problems while lying on a therapy couch formally owned by Groucho Marx. "Eighty percent of comedians come from a place of tragedy," explains Laugh Factory owner Jamie Masada. "They didn't get enough love. They have to overcome their battles by making people laugh."'

My point in all this--just because people are hilarious, sweet and look put together, they may be fighting some serious demons inside. Everyone is fighting a battle we know nothing about. Depression and all mental illnesses are invisible illnesses and if you haven't ever been clinically depressed yourself or know someone going through it, it can be very hard to relate to someone who is. In my bouts of dealing with my weird, painful medical issues, I have even been diagnosed with depression. People who commit suicide are not cowards, (Shepard Smith, you should be fired and punched in the face.) they are people who truly feel like if they leave, the world would truly be a better place without them.

Even though it may be frustrating to be a supportive friend or family member, try to do what you can.

Just so everyone is aware, here is a list of symptoms of depression and warning signs of suicide (from WebMD).

Symptoms of Depression:

• difficulty concentrating, remembering details, and making decisions
• fatigue and decreased energy
• feelings of guilt, worthlessness and/or helplessness
• feelings of hopelessness and/or pessimism 
• insomnia, early morning wakefulness, or excessive sleep
• irritability, restlessness
• loss of interest in activities or hobbies once pleasurable, including sex
• overeating or appetite loss
• persistent aches or pains, headaches, cramps, digestive problems that do not ease even with treatment 
• persistent sad, anxious or "empty" feelings 
• thoughts of suicide, suicide attempts

Warning Signs of Suicide:

• a sudden switch from being very sad to very calm or appearing to be happy
• always talking or thinking about death
• clinical depression (deep sadness, loss of interest, trouble eating and sleeping) that gets worse 
• having a "death wish" tempting fate by taking risks that could lead to death, such as driving through red lights
• losing interest in things one used to care about 
• making comments about being hopeless, helpless or worthless 
• putting affairs in order, tying up loose ends, changing a will
• saying things like "It would be better if I wasn't here" or "I want out." 
• talking about suicide 
• visiting or calling people one cares about 

These signs should be taken very seriously. Call 1-800-784-2433 for a suicide hotline, contact a mental health professional right away or go to the ER for immediate treatment.

To end, here is a quote Zelda Williams (Robin's daughter) posted after his death. Rest in peace, Robin Willams. We will always remember you as the sweet, generous and gentle soul that you are. Xx

Puppies, My "Pain Partner in Crime" and How One Woman Saved My Sanity

Let me just say, as cliché as it sounds, I truly believe certain people come into your life for a reason.

If you have read my story (which you should), you will know that at one point last October, I decided puppies were my "happy place" and I reached out to several breeders to "help socialize". While most of them were quick to turn me down,  "Mary" (given name for privacy) graciously agreed after explaining my situation.

Mary is the owner of her own goldendoodle breeding business. And it's thriving, one of the most sought out goldendoodle breeders in the doodle biz. (Plus she is a woman who truly loves and takes care of all of her dogs, which is unfortunately not always a common thing with breeders.)  Mary is also a wealth of knowledge on any dog advice or information I could need at any given time. 

What you would never guess about this person is that she too suffers from a very serious, progressive genetic mutation disorder called Systemic mastocytosis. Like most of you reading, I had never heard of this in my life and it is apparently very rare. This woman, due to the "masto" (as she calls it), also suffers from several other serious medical issues including fibromyalgia, diabetes, RA, etc. (as well as several other things). You'll find things like wheelchairs, oxygen tanks and traction devices in her house. 

The day I was finally allowed to come over was one of the best days I can remember of this last year. (There weren't a lot of them.) I was so excited. I've never tried any recreational drugs before, but there can't be a more euphoric feeling than being completely smothered in 6 week old fluffy puppies. 

The best part was--I sat for two hours on the ground (unheard of) and almost felt NO pain. While Dr. Gerwin may technically refer to this as cognitive behavioral therapy, I called it a serious fluffy distraction that made me immensely happy.

Mary had known, due to my desperation/plead to play with puppies that I was suffering from chronic pain, but I was completely oblivious to her own. Like most people with chronic pain, her medical issues were not divulged to me until there was a closer relationship formed and I was not just that strange girl at her house smothering her puppies with love. Once I was officially known by Mary as "the dog whisperer" and as time went on, I was over to "help" and "socialize" (read as: play with and smooch) more and more. I was so amazed by the concept that puppies could genuinely help with my pain. 

The more I was over at Mary's house, the more we talked and the more we realized we quickly had a lot in common. The only difference: I was a novice and Mary was a long time, experienced mastermind to world of chronic pain, plus we both share a very clear obsession with dogs. Like me, Mary believes dogs truly have the power to heal. We have planned many ridiculous themed puppy photoshoots together and when my 11 year old German Shorthair Pointer/absolute love of my life, Gracie, died from cancer in February (heartbreaking), she even offered me a puppy. Even thinking about Gracie now, I still tear up. The dog spent so many hard days by my feet in my bed and I will probably always miss her. Even though we ended up getting a Weimaraner (due to a full blown obsession my family has generally had with them) that we are now infatuated with, Mary was always there for support whenever I needed her. She helped train our new puppy, microchipped her and saves every picture I post on the internet. That's right, Sophie, our Weimaraner puppy, has a huge folder of pictures on Mary's computer and I love her for it. When Sophie got pneumonia, and we were convinced was going to kill her, Mary was on call giving suggestions and support 24/7.

Gracie, our GSP. (I loved this animal more than you will ever know.)

Our little Sophie, 8 weeks old, the day after we got her. Can we talk about how stunning she is?

Like sponsors to addicts in recovery (see my last post), Mary quickly became my pain mentor/guru/pain partner in crime and one of the very few people I felt I could truly confide in, where my shit was never too depressing or hard to hear. While people that were close to me, like my parents, grandma and best friend, could be sympathetic, Mary could truly understand my pain, how I was feeling emotionally and why without really even having to explain it to her. I always felt like I was burdening people telling them my problems and how I was feeling. I never felt that way with Mary and she was never a person I didn't want to talk to. (I generally didn't want to talk to most people.)

And the best part about her? She is a damn strong, empowered woman and she will always tell like it is. (I admire these types.) 95% of everything I've learned about handling pain, physically and mentally in general, is purely because of her. 

Like puppies, Mary plays a large role in my success to handling chronic pain, not that she would ever take credit for it. She also seriously put all my shit in perspective. Her situation, not that she would ever want the sympathy for it, is much more serious than mine…and harder to treat. Even when I search it, there is almost virtually nothing helpful the internet offers. After hours of long phone calls exchanging pain problems and suggestions, my phone call would end and I would get teary eyed because I was so inspired by her. I have met people from all walks of life over the course of my 24 years on Earth but I had never felt this way about a person before. I seriously do not know she does it, but I commend her. 

To this day and probably forever, I will always respect her and appreciate what she's done/doing for me.  This woman, despite all her medical issues, will not let the masto "have" her or deter her from what she loves--dogs. Even with all the shit she has to put up with on a regular basis, she is crafty as hell and always finds a way to make things work. She is also really resourceful and she is always there for me, even if it's at two in the morning. 

Because of her, I was motivated to be the internet's Mary because everyone that has chronic pain needs one. There are certainly not enough Marys in the world and through all the randomness of our worlds strangely colliding for our mutual love of dogs, I am honestly grateful just for knowing her and a better person because I do.