What is Fibromyalgia

Some of you may or may not know that I suffer from fibromyalgia.  It actually affects my day to day life more than Lupus.

Fibromyalgia is described in medical terms as a “long-term or chronic disorder. It’s associated with widespread pain in the muscles and bones, areas of tenderness, and general fatigue”.

I like to call it the evil pain disease rained down on me by Hades.  Only a demon could have come up with this torture.

I am in pain 24/7.  It’s just the level that varies.  I hate it.  Lupus activity goes down and you can feel good but I have fibromyalgia still waving at me.  Always there. A creepy wave that would make you want to run for your life.

I have to take strong meds for muscle spasms because boy do I go into spasm.  Poor Irfaan could have a masters as a masseuse.  I always have my heated wheat bag because something is always hurting. 

Once again, there is no cure.  Treatment is symptomatic.  This is why I am on super strong meds.  I’m used to going for injections into my muscles for pain relief.  At one point I was having up to 18 shots from my neck to my tailbone. They literally marked the injection sites with a pen.   I still have these injections.  Painful as all hell especially when they’re stabbing the needle into a knotted muscle.  Not to mention the injection burrrrrrrns.

I’m sure some people think I make this up.  Today it’s my neck tomorrow it’s my SI joints.  Yeah believe me if I could donate this disease to a paedophile or something I’d happily give it away.

The fatigue is crippling.  Imagine your tired being tired.  I’m also unable to reach level 4 sleep because of this disease so I have very strong bedtime meds.  I don’t know what I’d do without them.

Again… Fibromyalgia is invisible.  You might see me and think I’m looking fab but meanwhile about to break into tears because of pain.  I do go for physiotherapy.  I also do some yoga at home as I’m not allowed to join normal class. I am not allowed to do extensive exercise.  I’m allowed to swim and walk and easy yoga poses.  So many people say “if you just exercise”.  That’s such a trigger for me.  If it was that easy there would be very few people with fibromyalgia.  

At this point we have established I’m not normal.  My rheumatologist told me one of his patients are bedridden so when she needs a check-up she has to be booked into hospital.  This will not be me!!!

Damn I hate this disease.  Just imagine something hurting every day.  I am not lying when I say my hair has hurt before.  Technically my scalp but moving my hair hurt.  That’s some crazy BS right there.

I have what I call pain flares.  That is when the pain is beyond anything I can treat at home and have to go to the ER.  It’s so bad sometimes I can hardly go to ER because I am in too much pain.  Where have you heard a disease make you scream when you put your head on a pillow?

Things have improved.  I’ve measured this by ER visits.  Yep. They have reduced quite a bit but it takes a lot of hard work to be in this position.  So that’s a win for me.  Still.  I hate this disease.  I swear my life is like a lucky packet.  I wake up and …. “WHAT DO WE HAVE TODAY?”  The worst is when Lupus and Fibromyalgia attack me at once.  That’s those OMG FML times.  I’ve had a 4 week stint of that recently. Yes, four weeks.  It’s draining, hard to keep your sanity and super depressing.

Since working with the pain management clinic I’m hoping to get this under control even more.  Now that would be really awesome!

Demon on my back.  Literally. The most insane backache.  Just yesterday my leg was hurting like I had shin splints.  From where?????  I never ran.  I don’t run. Like ever…. geez I didn’t even break into a brisk walk!

Now that I have explained Lupus and Fibromyalgia I want to share my Lupus diagnosis with you.  It’s a tough one for me but I have been working on it and it’s an important part of my story to share.

Please come back as I share something very close to my heart.  The day my world changed.

All hail the weekend!

10 thoughts on “What is Fibromyalgia

  1. thanks for not giving up on humantiuy and giving thme this insights when i expereinced chronic pain i hiid away as muich as possible ………thats didnt help either but i got tired of the misconceptions all thoise years ………i dont know whjat else to sd say excpet i suppose my life seem to be so much emotional abuse ( neighbour /religious these days a lot and its hard ot speak out for simialr reasons .maybe i wil feel inspired by staying closer to poewple who are preared ot speak out

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  2. thanks for not giving up on humantiuy and giving thme this insights when i expereinced chronic pain i hiid away as muich as possible ………thats didnt help either but i got tired of the misconceptions all thoise years ………i dont know whjat else to sd say excpet i suppose my life seem to be so much emotional abuse ( neighbour /religious these days a lot and its hard ot speak out for simialr reasons .maybe i wil feel inspired by staying closer to poewple who are preared ot speak out

    Liked by 1 person

  3. Hullo my presh! Good job hun! The more you share the more you make people aware. Like uncle Leon, we here down under love you stukkend. We are cheering you on and the unicorn sends you biiiiiig hugs.

    Liked by 2 people

    1. What I’d give to get a real one from him! I hope he is doing better. Love you guys man and miss you so much. Miss our chats the most.
      Just being in the presence of such pure love. They don’t make em like they used to.

      Liked by 1 person

      1. We will get to this point too. I already have the medical side of everything ready. So now it’s just a matter of timing to get you guys here. Here where we can shower you both with love, a place to be without judgement, without advice (cause lets face it, we can only empathise and not know the depth of the condition).
        I need to fatten Irfaan up a bit, he looks too skinny and Jazza said he just wants to look at you, talk to you and be able to put his arms around you guys and hug the shit right out of your lives and replace it with love.
        Miss you guys sooooooooo much.

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      2. Ah man. Irfaan and I literally spoke about this this weekend. That they just don’t make friends like you any more. With you guys we have an authentic relationship. I was bemoaning the fact that there is no point in having relationships that are inauthentic. Why would I want to waste my time. I’ll send you a private message about it. It’s bloody tragic. I can be genuinely happy for people but we know there are only a few people who would feel thst way about us. Its a sad, sad situation!

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  4. Such a difficult topic.. And at the same time admire the way you so eloquently write down your painful experiences.. Love you to the E. R room and back xxxx

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    1. 😂😂 laughter is the best medicine and I’m glad you are in my life to give me lots of medicine! Xoxo

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