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The other day on Twitter, I came across a tweet from a young lady who was, clearly upset that she was unable to have anyone hug her, because it caused her pain. She has Fibromyalgia, as I do also, it is one of my comorbidities along with chronic migraine. She stated that she came from a very huggy family and desperately missed that connection with them. That really got me thinking about my own experience with fibromyalgia and how it has impacted my life.

I’m going to be quite frank and open on this subject, I feel that there are a lot of people who can relate to this topic, or have had the same experiences, but have felt uncomfortable talking about them. During a flare, which always comes with a migraine attack for me, every muscle in my body hurts. Not one is exempt from pain, including my breasts. I’ve had chest wall pain, that I thought was chest pain, and being home alone I had to call 911. After having a stress test, that was normal, the cardiologist diagnosed it as chest wall pain due to my history of fibromyalgia. In cases like this it is always, better to be safe and have it checked out, than to ignore it, and miss a serious problem. I’ve had flares so painful, that I could hardly move without wanting to cry from the pain. Even when I’m not in a flare, I still hurt, just not as badly.

I was diagnosed with fibromyalgia eighteen years ago, in the beginning it was really, really, rough. Sleep was almost impossible, I was given Cymbalta which didn’t help, then Lyrica that I had a horrible reaction to, and finally Savalla which caused my blood pressure to bottom out, making me to pass out. These days I use Tizanidine, a muscle relaxer, to help with the pain, and take a sleep aid so I’m able to sleep at night. Even with that I still have nights that pain, migraine and fibromyalgia, keep me awake.

If you could just image with me for moment, all your muscles are burning, it feels like the nerve ending are too close to the top of your skin, you move the wrong way and pain shoots outs, you get leg cramps at night, certain fabrics against your skin are irritating, you have overwhelming chronic fatigue, you don’t dare do too much in one day, doing so could cause a flare. Then there is the worst part, at times simply being touched causes pain. Being hugged by your husband and children causes pain. Having sex with your husband causes extreme pain, so you are forced to give that up. Love hurts! You find yourself feeling more isolated than ever, and you deeply miss the physical contact.

Not a very pretty picture, but neither is fibromyalgia. Not everyone may have pain at this level, and many people are able to use Lyrica, or medications like it, to control their symptoms and that’s fabulous! I wanted others with fibromyalgia, to know that I understand, care about you, and to let you know, you are not alone! There is always hope in any situation. I am blessed with a caring and supportive husband of thirty-five years, we’ve been through a lot together. We love each other very much and not making love isn’t going to change that. There is so much more to a marriage than sex, though the younger audience would probably disagree. lol Never give up or lose hope!

 

“Pain nourishes courage. You can’t be brave if you’ve only had wonderful things happen to you.”     

Mary Tyler Moore

Live with hope,
Roni