What the f*ck is fibromyalgia? Part 2

It’s been a minute since I really, and I mean really, broke down some more fibromyalgia facts with you all. So, I figured why not share the really embarrassing stuff that no one really enjoys talking about?

(Let’s be real, I no longer care or have shame.)

So, if you read the OG “What the f*ck is fibromyalgia?” post you learned all about the pain, exhaustion, swelling and mental health struggles. I know. How could there be any more fun?!

Well, buckle up.

*Disclaimer: we all know I am far from a doctor or expert of any kind. So, all of this is what I deal with, and what I’ve researched and talked with my doctors about.

IBS-ish

Let’s just get right to it. Somehow fibromyalgia causes some fun stomach issues. Discomfort, pain, bloat, constipation, not constipation, sensitivity issues. (Don’t worry, I pulled this from my online dating profile).

Some days are totally fine and others are honestly pretty shitty. ๐Ÿ˜œ

Hair loss

This is a very serious issue for me that just rapidly occured in the last week. I wasn’t that cute with my big ol’ bald head when I was a baby, and really don’t think I’ll look any cuter now. But, I went to the doctor today and he confirmed this is very common for people with fibromyalgia, but, per usual, has no idea why. Thankfully he’s not letting that be the answer and ordered a full panel of blood work and referred me to a dermatologist.

So, fingers crossed we get this figured out. Or, who wants to go wig shopping?

(In all seriousness I didn’t realize how vain I actually am until the bald patch on my head decided to show up)

Itchy hives

Chicken pox, but make it constant. Ok, well, not constant but a few days a week I have random hives for no reason. I’ve had alllllllll of the allergy tests, so please don’t @ me about that.

Its even better when they are on my face. So attractive.

Easy bruising

Like a peach. Sometimes I feel like I look at a sharp corner and BAM! I have a bruise on my leg. I swear, each week I have about 10 unexplained bruises.

Sweating

As dad would say, “like a hooker in the front pew of church.” I’m never cold. Like, it will be snowing outside and my windows are open. I feel like there isn’t enough deodorant some days. It’s also a bit challenging when heating pads help the pain, but come on, it is HOT.

I also have an irrational fear that I smell and no one tells me, so you can imagine how fun this symptom is. Have I mentioned I have anxiety? No idea why. ๐Ÿ™„

Flushed face

On the plus side, my blush lasts me a long time because I don’t need to use a lot of it. But, I also look warm, uncomfortable and embarrased. Which, now that I think about it is how I feel most of the time.

Twitches and muscle spasms

I’m not always just winking ๐Ÿ˜‰ Eye twitches, arms, legs, you name it, and it’s spasing. The most fun is when it causes me to knock things over. Or, even better! When my hand twitches as I’m holding, I don’t know, a mug full of hot coffee and then I drop it all over the place. (Moment of silence for all those lost mugs)

Allodynia

This is a weird one, and please dont stop hugging and high-fiving me. But this fancy-ass word basically means it hurts to be touched. This is most common for me with unimportant things like clothes and shaving my legs.

(I love hugs, so keep ’em coming! Really, I don’t feel like I get that many which is sad and embarrassing but I’m going to share it anyway!)


I hope you enjoyed this second installment of the “What the f*ck is fibromyalgia?” series. Hopefully this provides some insight into my life, and some others who you may know. Really though, it could be a lot worse. I am fortunate that my fibro is more or less under control, without medication. I know that not everyone is that lucky, and I do my best to not take it for granted.

Next time you see me, give me a hug and tell me if I smell.

-J

Please feel free to browse through my blog for other posts, or check out some articles I have written for Thought Catalogย here.

We all float down here…

Over the past 13 years since being officially “diagnosed” with fibromyalgia, I’ve been open to trying pretty much anything for some relief. Lately I’ve been hearing a lot about float tank therapy to help with fibro, among many other things, and have been curious about it. So, when a good friend of mine found a Groupon deal for them at Stillpoint Yoga and Float, I was excited, interested and a little nervous.

We finally gave it a try today, and here is my experience!

What is float tank therapy?

Float tank therapy is where you lay in a bathtub-like pool either in your birthday suit or your bathing suit, whichever you feel most comfortable in. (Don’t worry, it’s a 100% private room) You do exactly what it’s called – you literally relax and float in a tub filled with about 1,200 pounds of Epsom salt and water. Think about when you’re in the ocean and buoyant. It’s like that, but super concentrated and powerful. All of the research I’ve done (and now, personal experience) shows that anyone, no matter shape or size, is capable of floating. The water is set to the temperature of your skin, so it’s not supposed to feel hot or cold. It was comfortable, but toward the end it started to feel hot, as if I was in a sauna. It also is said to work best with total sensory deprivation, which definitely made me nervous. I feel like I’m way too anxious to be left alone in total darkness and silence with just my thoughts. But, since the experience is all about you and what you prefer, you have options to have soft lighting or no lighting, and music (spa music or you own) or silence. There are also ear plugs available to help keep sound, and water, out of your ears. Note to self – use the ear plugs next time

Are there any benefits other than fibromyalgia relief?

YES! So many benefits. Here are some of the other benefits listed on the website:

  • Stress relief
  • Depression
  • Anxiety
  • PTSD symptoms
  • Eliminate addictive behaviors
  • Eating disorders
  • Increased energy
  • Alleviate physical pain
  • Headache
  • Lower blood pressure
  • Relieve PMS symptoms
  • Headache relief
  • Improve sleep quality
  • Increase motivation
  • Improve concentration
  • Meditation practice
  • Personal growth
  • Elevate mood

Since there is significant magnesium absorption, it can also help prevent cardiovascular disease and create healthier bones and teeth.

As I was reading this I was checking off almost all of the reasons I’d want to try it. Fibromyalgia? Duh. Anxiety? Yes. Depression? Yes. Increased energy and improved sleep quality? HELL YES.

**I feel like I need to say, that I am clearly not a doctor of expert of any kind, so this is all based off my research. Also, as great as this can be, it’s not a miracle box and to see long term and lasting results, you need to go more than once. Everyone will have different results and with most things in life, nothing is guaranteed.

What are the rooms like?

Don’t let the fact that they are located in a business park throw you off. As soon as you walk in the doors, you are transported into a spa-like atmosphere. It’s clean and beautiful with essential oils diffusing and soft music playing which will instantly make you feel welcome and relaxed. If it is your first float, or first float there, they will give you a full tour to make sure you feel comfortable and ready for your experience.

The float rooms each have their own name and little decorations to make them unique, but the tanks are all the same. You walk in and there is a large bench, shelf, and little amenities to make it personal and comfortable. There’s also a sign with the overall guidelines and tips and a basket with a mirror, ear plugs, makeup remover and petroleum jelly to put on any little cuts or scrapes you have. (Definitely do this recommendation. You really can feel even a paper-cut.)

Before you float, you use the provided shampoo and body wash to get any dirt, deodorant, etc. off of your body so that you don’t contaminate the pool and so that you get the maximum results. After the float, you shower again to get all the salt water off but can bring your own toiletries if you prefer. The shower is right outside the float tank, so it’s so easy to get in and out.

Also in the float tank is a halo pillow you can use to help support your head and neck, which I did end up using. There is also a spray bottle with clean water and a towel, so that if you get salt water on your face or in your eyes, you can easily wipe it off.

How did it go?

I went into this experience with the least amount of expectations possible. Everything I read seemed positive but I didn’t want to give myself false hope.

When I first got in it was a weird feeling. I laid down and took a few minutes to get settled. I started with the light and music on, and ended up turning them off. I wanted to try and go for full sensory deprivation. It took me a long time to feel like I could settle my mind. Like I mentioned before, I am an anxious person and being left alone in silence with just my thoughts went exactly how I expected it to. I was thinking about life in general, this experience, how my friend was doing in her’s, and then anxious that I was too anxious and not enjoying it enough. After a little while more, I felt my body start to relax a bit. My arms, legs and back all felt like the tension was leaving and it was a feeling I haven’t experienced in a LONG time. I had issues getting my neck, head and shoulders to relax but I tried not to focus too much on that. Those areas hold most of my pain and trigger points, so I’m not surprised that I couldn’t really let that go on the first try. I don’t know if I fully fell asleep, but I did catch myself lightly snoring a bit (so attractive, I know) and doing that thing where your arm or leg twitches as you are falling asleep. Research shows that an hour of sleep in a float tank is equivalent to about 6-8 hours of normal sleep. I’d love just a fraction of that.

From an anxiety and mental health perspective I definitely got in some good thinking and soul searching. I left not feeling overwhelmed or anxious, and have an improved outlook on things from the time I spent really thinking about things.

In conclusion

Overall, it went well. If nothing else it was an hour totally unplugged from all outside distractions. It was relaxing (eventually) and I did notice an improvement in my fibromyalgia symptoms. I felt a bit rested, but also tired, as if I spent a whole day in the sun.

I definitely would benefit from doing it again. Next time I will know a bit more what to expect so I won’t be as anxious and will be able to get into the relaxation phase sooner. I also feel like the more you do this, the better the results. I may also do a 90 minute float next time go give myself a little cushion of time in case I am feeling anxious and have trouble settling in again.

If you have any questions or want to try it for yourself (and are in the greater Philadelphia area) definitely check out Stillpoint Yoga and Float. They can answer any questions you have and get you setup with a session. Tell them I sent you!

Week 1: A week of learning

If you read my last post you know that I am starting on a path of healthier living. I went into this knowing that I am not going to be perfect, and that it’s all about learning and putting forth a conscious effort. And, as expected, week 1 was far from perfect.

Saturday I got up and hit the grocery store with my shopping list. I bought everything I needed for my meal plan. When I got home and unloaded everything I realized that I maybe over-planned. Which I did. Luckily, I can roll some of last week’s ingredients into this week.

Next hiccup: waking up Sunday morning with a migraine. Not planned. Not fun. I still managed to prep 2 meals, but due to the migraine I didn’t eat too much.

Here are some of my favorite meals from week 1:

Turkey, pumpkin and swiss chard hash. Recipe called for cubed pumpkin, but all I could find was pureed pumpkin. Still tasted good!
Chicken chili soup. Recipe called for a spoonful of plain yogurt on top, but I liked it better without. Definitely will be great in the winter!
Hands down my favorite of the week. These simple sweet potatoes and brussel sprouts are incredible.

So, am I feeling drastically improved after week 1? The week of decreased pain? Definitely not. I didn’t expect to after just 1 week of a semi-improved diet. I know I wasn’t 100% by-the-book on week 1, but like I said before, I knew I wouldn’t be. I don’t want this to be a quick fix, so I’m not going to be too hard on myself.

This week I have some simpler meals planned. But, ironically, due to another fibro flare-up, I haven’t gotten to the grocery store yet. But, I guess that is part of why I’m doing all this. Trying to not get frustrated and listen to my body and rest it when needed. It’s just as tough mentally as it is physically. I have so many ideas, goals, and things to do, and it’s so hard when my body has other ideas. It’s hard not being “normal” sometimes. It’s hard asking for help. It’s just hard some days.

So, week 2, I’m ready for you. Just as soon as I pull myself off these heating pads…

Happy Sunday friends!

-J

Shit. Is. Happening.

Good Shit. Don’t worry. Exciting, optimistic shit is finally happening.

For the first time in what feels like forever, I am optimistic about my fibromyalgia. Honestly, I never thought I’d get here. Don’t get me wrong, it’s all ideas that are causing this optimism, but, it’s optimism nonetheless. Let me tell you why!

The other night I stumbled upon a documentary on Hulu called “Can we cure”. (Surprisingly I watched something that isn’t about true crime and murder.) If you deal with chronic pain of any kind, or are close to someone who deals with it, I highly recommend you watch it. It’s only a few episodes, so you’re not dedicating a ton of time to it. Here’s the overall gist: 2 girls, around my age (31) both dealing with different types of chronic pain, and trying to manage a normal life (work, dating, friends, exercise, etc.). They live in LA, and found a clinic in Boca Raton, FL that specializes in a new treatment for chronic pain. Basically, the treatment is 3 parts: Detox, Laser beams, and Mental Therapy. All necessary. First, they do a cool test to find out what toxins are in your body causing the chronic pain. (IT’S NOT MADE UP. IT’S NOT “JUST FIBROMYALGIA”. THERE IS A CAUSE!). I’m getting ahead of myself here, but I’m now convinced that my pain isn’t just my pain, and there is something in my body breaking me. Once they detox you of the shit, they essentially start zapping you with lasers. Fact: Every minute, 96 million cells in your body die, and 96 million cells regenerate. (Where are my Doctor Who fans?!). So, muscle memory. If you have bad cells, that’s all your body knows. So, bad cells die, bad cells are born. It all makes so much sense. But, with lasers, your cells are being treated and healed as they regenerate, which helps with your pain because you are then creating healthy cells. MIND BLOWN. (The documentary explains this so much better, I swear. Watch it.) Next, you need to get your mind right. When all you know is pain, it’s hard to snap out of it and realize that you can actually feel different. You need to forgive, and move on. Forgive the doctors, the friends, the strangers, everyone who doubted, questioned and belittled your pain. Which is hard. And not easy. Especially for those who have their chronic pain caused by some type of trauma. But necessary for overall healing. By the end of the treatment, the girls were improving drastically.

And let me tell you, I was inspired.

So, what did I do? I looked up the place! Obviously. The place is Carmen Care Laser. Them being in Florida, and me being in Pennsylvania, it’s clearly not the most realistic situation. But I decided to reach out. What could it hurt? I sent an email, just asking about their experience with Fibromyalgia, gave my backstory, and even let me know that I’m in PA and this was more of just a curiosity email so if they had paying business to tend to, please do not waste their time on my questions. Even so, I immediately got an email back, which turned into the best phone call I’ve had in a very long time. Leslie is so nice, caring, real, and informative. We talked about what they do and what I’ve tried. We talked about my medical history and possible toxins that could be causing my pain. She gave me so much advice and insight. As we were talking, my writing came up. This is where things got even more exciting. She gave me one of the the MOST GENEROUS offers I’d ever received. She offered to treat me on their full 21 Day Program FOR FREE. All I had to do was get there, get lodging, pay for some food, and write about it. Is this real life? Unfortunately, she can only offer that until mid-September, because then they are fully booked up again. So, right now, that isn’t in the cards for me. I can’t imagine going into work and suddenly being able to work remote for 3 weeks in Boca Raton. But, she still offered to be a resource for any questions I have and said if I can’t get there now let’s stay in touch and see what the future holds. Hero.

While talking to her, I told her about the 4 week fibromyalgia diet I am embarking on starting tomorrow. If there’s one thing I’m good at, it’s quitting diets and exercise plans. So, like I said before, I am going into this not as a diet, but as a lifestyle change. I know I am not going to be perfect, and I’m fine with that. I went grocery shopping today and got everything I need for my week 1 menu. This is definitely the most grocery shopping I’ve done in a very long time.

My body will be shocked. Not only will I be eating breakfast, but I’ll be eating 3 healthy meals in a day. Yes, I’m still going to drink coffee. Yes, I’ll still be enjoying a few beers. I’m human. As I’ve proven time and time again, I’m not perfect. I am walking into this with balance and the mindset that small changes will add up over time. (So please don’t @ me with “you’d see more results without coffee and alcohol”). Again, I’m not planning on this being a short-term diet, but a long-term lifestyle change. So, I’m keeping the things I enjoy. Black coffee and craft beer. (And PBR, because, come on… it’s me.)

I keep my beer next to my greens to remind myself of balance. #lifehack

I’m going to be sipping my beer and continuing to make shit happen on this hot-ass Saturday. I’m going to get my mind ready to head into Week 1: Pain Management. Foods all designed to help reduce inflammation. I’ll be tracking what I’m eating, and how I’m feeling. I’ll update the end of week 1 while I prep for week 2! Stay tuned!

Cheers!

-J

LOL I moved inside. I was getting sunbunt, in the shade, within 10 mins. Thank you pale Irish-German skin.

The many trials… and many failures

I don’t have the best track record for sticking with things. Diets, exercise plans, TV shows… I just can’t seem to get my shit together long enough to really see things through. Maybe I haven’t found “the one” in that aspect, which is why. Or maybe it wasn’t working? Or maybe I’m full of excuses and bullshit? (Likely the case). If I’m being honest, I’m shocked that I’ve made it this far with my writing (Hey! Maybe I did finally find my thing!… If only it would solve ALL of my problems!)

Over the years I have tried approximately 69,420 things to cure, maintain, and manage my physical and mental health. A few things have helped, but nothing really gave significant results. Granted, a lot of this is due to me not following through on things (like diet and exercise). But, mainly I’ve had many failed doctors and medications. Since modern day medicine isn’t helping, I decided to start from basics. My diet. I hate the word diet. As long as I can remember, I’ve hated the way I look. I’ve never been happy and comfortable with my weight, so mentally when I tell myself I’m on a “diet”, I immediately just tell myself I’m going to fail. I’m my own worst enemy.

That’s why I’m going into with a different mindset this time.

I’m not going on a “diet”. I’m not doing this for the sole purpose of losing weight to look better in my jeans (although, I won’t be mad if that happens). I’m doing a lifestyle shift. I’m not telling myself I can’t have anything, but I’m going to remind myself that there are some things I probably am better off without. And, the golden rule…. everything in moderation. I’m doing this knowing that my life, my health, and my future depends on making small, conscious, healthier choices.

Not only am I banking on this to increase my physical health, but also my mental health. By eating better, I know mentally I’ll feel sharper and hopefully get rid of some of that “fibro fog”. The book I’m using as a guide even breaks the weeks out:

  • Week 1: Pain Management
  • Week 2: Gaining Energy
  • Week 3: Fighting the Brain Fog
  • Week 4: Promoting Healthy Digestion

My life will benefit greatly from improvements in these 4 areas, so I’m actually excited to give it a shot. Nervous, and terrified, but excited overall. I’ve been to countless doctors and have had so many procedures and tests over the years for these 4 areas, that I don’t only want, but need to make positive changes. I need something to work. I need a miracle. (I need to be my own miracle, really.) I need to prove to myself once and for all that I am capable of generating my own happiness. And, becoming healthy is the place to start.

*Shout-out to my friends recently who have been talking to me about your own journeys with changing your diet for better health (for various reasons) – you guys really inspired me to really tackle this!*

My plan is to start Sunday. I already have my week 1 menu planned, and even made an organized shopping list. I really don’t even know myself right now. If anyone else wants to join in for accountability, let me know! I’d love to share my menu! (There is more per week than I’m doing, but I’m one person so I’m planning more leftovers than the guide calls for).

I know I won’t be 100% with it. And that’s fine. But, I plan to be conscious of what I’m eating and drinking, which is a huge change for me. I’m also going to track what I’m eating, and note any changes in my symptoms.

So, please hold me accountable. Encourage me. Cheer me on. Pray I finally get some sleep.

Thanks for the support!

-J