My Guide to Fibromyalgia for Friends & Family

If you’re reading this.. Two things!

1. Hello and thanks for visiting ūüôā

2. You probably know I have Fibromyalgia.

Here, I just want to lay out a “Quick” & Easy Guide to Fibromyalgia!

So lets start off with the Overview.

Fibromyalgia is a syndrome, which causes long-term, or chronic, pain and fatigue. This pain is everywhere. Muscles, joints, skin, and we even seem to hurt in our hair sometimes! We all know that pain is necessary for survival. Pain lets us know there is something wrong. However with Fibro, this pain is unnecessary and makes us hurt for really no reason at all.

With Fibromyalgia, there is commonly no inflammation or swelling of the joints or organs. In some patients there is swelling or inflammation, but it can’t be pin-pointed to a specific area. Your bloodwork usually all comes back A-Okay and we often hear

“Well all your bloodwork looks good!”¬†

This is both a blessing and a curse. Yes, there is nothing “seriously” wrong, such as anemia, cancer, any inflammation, or major abnormalities. That is a VERY good thing! On the flip side, we have a small sliver of disappointment. We want so badly to hear an¬†ANSWER.¬†We say silently, “Just find SOMETHING.. Something to justify all of this pain!” (side note: They recently released a newer blood test that will diagnose Fibromyalgia! The test is¬†FM/a¬†and it identifies the cytokine patterns and that help determine Fibro. Brand new, so there are some kinks and it’s $744 out of pocket! Yikes! This type of test has been around for awhile, but they haven’t seemed to work out the “kinks” yet. However, maybe this can begin to be a building block to get us to a time where there is a 100% definitive blood test! It’s always important to do research with your healthcare provider to determine what tests are best for you.)

The symptoms are the next order of business!

  • Fatigue
  • Generalized pain, all over the body
  • Insomnia
  • Numbness or tingling in different areas of the body
  • Weakness in limbs and extremities
  • Feeling “drained” and weak, in general
  • Memory/Cognition problems, also known as Fibro-Fog
  • and many more you can find by clicking on THIS!

There are so many symptoms and they vary person to person! The ones I mentioned above are present in almost 100% of Fibromyalgia patients.
To determine the Fibromyalgia diagnosis there is one main test. This is called the Tender Points Test. To be diagnosed, you must be very sensitive and tender (hence the name) in at least 11 of the 18 points.
Fibromyalgia_trigger_points_diagram_crop
They are points in various places of the body, which are immensely painful! The healthcare professional only puts a small amount of pressure on these points and this helps determine your diagnosis. For most of us, the pain could nearly bring us to our knees or throw us into a flare!

That’s what is next! Flares.

A flare can mean numerous things, depending on the person! Personally here are how my flares affect me:

  • Overwhelming fatigue
  • Pain in all areas of the body
  • Sensitivity to light, sound, and smell (Many people with Fibro often have a¬†heightened sense of smell, which can lead to painful migraines!)
  • Migraine headaches
  • Stiffness in joints, mostly my back and legs
  • Nausea
  • The “fog” becoming thick, and I tend to repeat myself or ask questions mutliple times (my poor husband!)

Many things can “throw” us into a flare. Stress, work, weather, other sicknesses like a cold, and more!

Like I said, the flares can be different in various people. I know some people who break out in rashes or have frequent muscle spasms. The one common symptom is increased pain.

Next is Overlapping Conditions:

A lot of us with Fibromyalgia, also have overlapping conditions. A few common conditions that seem to go hand-in-hand with Fibro are…

  • Hypothyroidism (I have this as well)
  • Depression
  • Anxiety
  • Irritable Bowel Syndrome (One of my very first Fibro symptoms, I’ve had this as long as I could say “my stomach hurts”. Just ask my family!)
  • Migraine headaches
  • Internal Cystitis (Imagine having a urinary tract infection constantly)
  • Multiple Chemical Sensitivity (Such as being allergic or developing unwanted symptoms from lotions, perfumes, cleaning agents, air fresheners, and more)
  • Restless Leg Syndrome
  • Lupus
  • Arthritis
  • and, again, many more!

Sometimes it’s hard to decipher which came first. The Fibromyalgia or the conditions above? Sometimes it is the Fibromyalgia, then conditions like Irritable Bowel or Restless Leg rears their ugly heads. However, other times conditions like Hypothyroidism or Lupus come first and then we discover that Fibromyalgia is there as well.

This condition is very hard to explain to others because we LOOK so healthy and we seem fine on some days. That’s one of the major things I wish you to take away from this.¬†If you have skimmed this whole article, PLEASE, at least read what I am about to say!

Living with Fibromyalgia is a day-to-day experience! Some days we have low pain and lots of energy! Lots of energy to have fun with friends and family, go outside for a walk, or run errands.¬†HOWEVER, if we over-do it one day, we are almost¬†ALWAYS going to pay for it the next day! By “pay for it” I mean we will be sore and stiff, be worn out, and even depressed because we felt so great the day before and today we feel useless!

My absolute favorite way to explain this is The Spoon Theory! You can follow the link and I will also post it at the end of the post. I’ll give a quick version in my own words.

  • Healthy people have an unlimited amount of ‘spoons
  • People with a chronic pain condition have a limited amount of ‘spoons’
  • Say you begin the day with 10 spoons¬†(some days you will have more and some days you will have less)… So you wake up
  • Taking a shower will take¬†1 spoon
  • Changing clothes will take¬†1 spoon
  • Making a quick breakfast will take¬†1 spoon
  • Driving takes¬†1 spoon
  • If you have a job, you will most likely use¬†a few spoons just getting through the day. Walking, lifting, pulling, and pushing will all take your spoons and it’ll take them quick!
  • Driving home 1 more spoon
  • Making dinner takes¬†1 or 2 spoons
  • So wait… We’re out of spoons. We havent ran any errands today. We haven’t even changed into our PJ’s. Haven’t played with your kids or your pets. You haven’t even cleaned up dinner yet!

That will give you an insight on the choices we have to make, for ourselves, daily. Will we lift those boxes at work or will we ask for help? Will we grab an easy dinner on the way home or stand for an hour to make it and another half hour to clean it up? Should we run the errands today or on our day off? These choices are hard to make, especially with a limited number of ‘spoons’. If you’ve ever heard anyone called a “Spoonie”, this is where it came from!

In conclusion, I want to say thank you. Thank you so much for reading this post. It would send me over the moon to know that you took just one thing away from this post! I know it wasn’t as “quick” as I hoped it would be, so I thank you for reading again! As a young adult with Fibromyalgia, I am taking it upon myself to educate my friends, family, and the world about this condition! I have lost friendships with this condition, but I have gained so many more.

My absolute FAVORITE support group is on Facebook, Fed Up With Fibromyalgia. I have gained some life-long friends there, with people who go through this dreaded condition WITH me! If you or a loved one has Fibromyalgia, I urge you to go to their fan page and read a few of their posts. They are outstanding!

Another thing I want to add, is that my best friend has a chronic pain condition, too. She has Ehlers-Danlos Syndrome, and I will provide a link at the bottom of this post for that as well. Those with EDS can also develop Fibromyalgia. We became friends years before we knew that either of us had these problems and our friendship has only grown stronger because of it! So I don’t “curse” Fibromyalgia, most of the time. I see it as a blessing in disguise. A way for me to help others and be supportive of what others are going through as well.

fibro butterfly

Here are a few links for things I mentioned previously:

Fibromyalgia
http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001463/

The Fibromyalgia blood test
http://thefmtest.com/

Fibro Fog
http://www.fibromyalgia-symptoms.org/fibromyalgia_fibrofog.html

The 18 Tender Points
http://arthritis.about.com/od/fibromyalgia/g/tenderpoints.htm

Hypothyroidism
http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001393/

Lupus
http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001471/

The Spoon Theory
http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/

Ehlers-Danlos Syndrome
http://www.ednf.org/

Fed Up With Fibromyalgia Support Group

  • Fan Page

https://www.facebook.com/FedUpWithFibromyalgia?fref=ts

  • Closed Group (helpful if you want support from a smaller group and it’s completely closed so no one on your Facebook friends list can see your posts unless they are members of the group!)

https://www.facebook.com/groups/fedupwithfibromyalgia/

Here is a video from a wonderful lady, Marci, at the Fed Up With Fibromyalgia support group. She made this to visually show others how we feel! It shows members of the group and quotes about our emotions and lives with Fibro. Also relaxing music to enjoy while you watch ūüôā
https://www.youtube.com/watch?feature=player_embedded&v=ZTWnqksfHPU

395100_494661083897882_1541174819_n

Advertisements

Compassion and Empathy

  • These are two qualities I’ve had for as long as I can remember. These are something my mom taught all of us kids, whether she knows it or not.

My mother is disabled because of various back disorders and nerve conditions. She worked her hands to the bone until she really couldn’t handle it anymore, and then worked some more! Growing up, and now, we saw our mom struggle with her health. Some days she can’t move off the couch to take her medicine, so we’ve always been within a yell across the house to help. We never rolled our eyes or called her lazy, because obviously that’s our mom and she’s in pain! However that doesn’t mean others don’t say that. It’s tricky to understand. One day she will be okay enough to pick up sticks in the yard or run errands in town, but the next she’s down for the count. A fair amount of people don’t and WON’T take the time to understand this, or chronic pain in general.

  • Ever since we could help, we did.

Helped sort laundry, carry groceries, mow the yard, or just bend down to pick up a pen. This, slowly but surely, taught us that helping others and understanding what they were going through was good. Little did I know that as I got older, I would need people to be empathetic towards me. Now that I have Fibromyalgia, I am even more compassionate to others with chronic pain, especially my mom. I further understood what it was like to feel like a truck hit me, backed up, then ran over me again. Getting in the car is a chore. Walking around the store, standing to make dinner, lifting and pushing are all things I pay for, just as anyone with chronic pain does!

  • So next time you see someone struggling, ask if they need anything. Just the offer will mean more than you know! It doesn’t matter, old or young, just a helping hand is always appreciated.¬†
  • Don’t let others discourage you from helping others or just talking to them so you can understand their situation. My sister, Cheyenne, is in 4th grade and gets picked on because she wants to help everyone. Why do kids pick on her for that? They call her stupid ¬†and are rude to her when she tries to help them. Thankfully my best friend’s brother is her age. I guarantee Cheyenne can get on his nerves a little ūüėČ but he is understanding.¬†

Image

 

  • In closing, I just want to say that being compassionate or empathetic is something that everyone appreciates. Just genuinely asking if someone is okay or needs anything, is a good feeling. Try it today! I bet you won’t be disappointed!