As many of you know, May 12th marks the annual celebration of Fibromyalgia Awareness Day. Here at FibroDaily.com, we’ve decided to celebrate Fibromyalgia Awareness all month! We’re featuring art work, articles, and poetry created by readers and activists who know firsthand the struggle that comes with Fibromyalgia. The pieces focus on awareness on many levels—personally, between loved ones, globally. Prepare to be amazed at the insights and the creativity, and please share these creations on Facebook, Twitter, and anywhere you’d like! – JC
By: Hannah Spannah Coco Banana
Tuesday May 12th, 2015, was Fibromyalgia awareness day.
This isn’t a pity post. Goodness me, no. I don’t want pity at all, but I have found that I belong to a group or community of people who are quietly getting on with life while still needing support, help and understanding about what we face whilst living with an invisible disease.
Therefore, while I’m not trying to speak for people, I hope that I can help others in their understanding.
Who We Wish Understood
Many partners, spouses, family members and friends struggle to understand and sympathise and empathise with a loved one who suffers Fibromyalgia. I’ve watched many of my loved ones struggle so I can’t say even say this with a hint of unbelievability, but some spouses don’t ever believe..
How is that even possible? In my opinion, it’s down to fearing lifestyle changes and suffering from ignorance. The stigma that surrounds Fibromyalgia is disgusting. It is offencive and damaging. The stigma itself causes pain and devastation. It even made me doubt myself, my being and my character. Why would someone do this to themselves and why, when you’ve jumped through every hoop you’ve been told to—in order to get better—would you not get better?
If you have read my earlier blog posts about my medical journey, you will know that I was joyous when diagnosed with Sero Negative Rheumatoid Arthritis (Rheumatoid Arthritis that doesn’t show in your blood, therefore making it very hard to diagnose.) I’ll tell you why that diagnosis made me happy.
Prior to this diagnosis, I was told that I had Fibromyalgia. I was devastated to be told I had this disease, who’s name had been whispered and who’s symptoms fit so well with what I as experiencing. Let’s see why.
Bear with me through the science bit….
Bear with me through the science bit….
The Science Bit
Fibromyalgia. The name itself is definitive. Fibro-, meaning “fibrous tissues” from New Latin, myo-, “muscle”in Greek , and Greek algos, “pain”. The term literally means “muscle and connective tissue pain”.
A quick Google of the meaning of Fibromyalgia gives you these top description results:
- Fibromyalgia is a neurosensory disorder characterized by widespread muscle pain, joint stiffness, and fatigue. The condition is chronic (ongoing), but pain comes and goes and moves about the body.
- Researchers have found that these people have more of an excitatory neurotransmitter called “substance P” in their spinal fluid. Substance P is involved in the transmitting and processing of pain signals to and from the brain.
- often look well even when they’re in a lot of pain
- often experience widespread pain in muscles
- often experience tiredness (fatigue) and/or
- sleep disturbances.
My next source is the Cambridge Dictionary which defines Fibromyalgia as: a medical condition that causes pain in the muscles and surrounding tissue as well as extreme tiredness.
Arthritis research.org describes the symptoms of Fibromylagia as
consisting of no visible signs of Fibromyalgia. People with Fibromyalgia:
All the above sources say that the severity of Fibro symptoms varies from person to person and from day to day. Some experience flare-ups from when their symptoms turn worse. Fibromyalgia patients often say their fatigue is the worst thing they must deal with, and that their thinking and memory are muddled. This is called fibrofog.
The pain may feel as though it affects your whole body, or it may be particularly bad in just a few areas. Some people find that their pain feels worse in very hot, cold or damp weather. The National Health Service NHS also has a large, all-encompassing description of Fibromyalgia and the various symptoms and related conditions, here.
Now you understand why Sero Negative Rheumatoid Arthritis made me happy.
Fibromyalgia sounds more than pretty legit, no? However, I quoted and surprised all that scientific stuff for a reason beyond knowledge, though, and it’s this:
Why I even have to state the legitimate sources of the information instead of just telling you what the syndrome is all about is annoying. I have to do this because there are small-minded people and people who say they have beaten this disease and doctors who base their opinions on someone else’s instead of the patients in front of them and people who are possibly coming from a good intention yet tell you that it’s all in your head. They say it’s not a real disease/syndrome, and that it can be cured by exercising more, resting more, eating cleaner, cutting-out gluten, seeing a counsellor, cutting-out nightshade foods and the cures go on and on and on.
In the United Kingdom (UK), most doctors, rheumatologists and other medical practitioners are up-to-speed with the results of trials and research. Therefore, it’s mainly the general public—-family and friends— that take to the internet, ignore all the credible sources then latch on to some crazy article that says that Fibromyalgia isn’t real. In the USA, Canada and Sweden—amongst others—I have spoken to sufferers who can’t even find a doctor who understands and believes enough to treat them.
The following perfectly illustrates general public “research”.
In a non-Fibro related group that I joined, a gentleman posted a blog post about his road to diagnosis. The first two comments from readers were: “I cured myself by cutting out gluten. Go on a gluten-free diet and the pain will go away.”
The second comment was, “I developed Fibromyalgia after a traumatic event. I cured myself by seeing a counsellor. You need to get mental health help and then you will get better”.
Well, woweee, we have a cure. But hang on, which cure do I do? The person that was cured by no gluten mentions nothing about mental health, and the lady who says I need help doesn’t say she cut out gluten? How can both cure an apparently incurable condition?
If it is caused by depression, why was I not depressed? When I became ill. I had everything I had ever wanted. I had recently married, honeymooned in Thailand, and spent New Year’s Eve in the warm sea while drinking champagne and crying tears of joy at my new life. Four months later, I was pregnant. I cut out all artificial sweeteners during my pregnancy plus ate healthily and well. I slipped a disc and, in hindsight, my pregnancy became painful and hard. However, I still was over the moon and LOVED every minute of being pregnant. I’d give anything to feel it again and occasionally, if my stomach spasms, I smile and for just a second remember what it felt like to have my baby inside me.
My son’s birth was traumatic not for me, but for everyone else (I’ll tell that story later!) I had a huge amount of family support, though, and four months after the birth, I went on a sunny holiday with my husband and baby boy. That’s when I really began to notice the other symptoms of Fibromylagia—beside pain—creep up on me. The fogginess in my brain and the fatigue, symptoms that made me even wonder about narcolepsy, were insane. I was as happy as anyone can be!
My background as a newborn specialist nanny meant that my working week was 144 hours. No lie. I was on duty and the baby was in my presence, be it sleeping or awake, twenty-four hours a day, six days a week. I had lived this life for years but on another note, I had not worked like that for two years prior to having my son and had taught childcare and nannied the usual hours of 8am-6pm.
The point that I’m trying to make is that I know how tiring it is to care for a newborn. Twins even, newborns with special needs. The fatigue that crept up on when we were on holiday, knocked anything I had ever felt in my life, clear out of the water. That fatigue didn’t come from being burnt out from my job, as I had cut back two years prior. I wasn’t depressed yet I couldn’t walk far, and needed to sleep within minutes of laying down. I was weak and dizzy yet was able to eat and enjoy the all-inclusive menu. I was happy, I was prepared for motherhood; I was eating, resting, taking light exercise and living life to the fullest. If it’s in my head, tell me how?
Tell all that science, too.
Eventually, I lost my marriage and a few of my closest friends.
Eventually, I tried just about everything and then some.
Eventually,I was told that if I ate clean and exercised more (on crutches and using a wheelchair at this point), I would get better.
I juiced. I cut out all artificial sweeteners and went gluten-free. I go to Weight Watchers as the steroids and other meds have not helped me to lose the baby weight. I walk my dog twice a day as it’s important to take light exercise. I look after my beautiful three year old.
I have also seen a counsellor for two years. I’m not ashamed to admit that. Losing everything you know as your life and being in desperate pain is hard to face alone. I used to see a nurse twice a week. Then as I improved, weekly for six months. I’ve not seen her since January. Neither of us are concerned by this.
Despite all of this, I am strong. I am happy. I have an upbeat and healthy outlook on life with the conditions and the limitations I face. My nurse will tell you I am not depressed.
All good that way. Still…
My Fibromyalgia is not better though it seems like it should be, and I have a calendar full of doctor’s appointments. My GP is still fighting the postcode lottery to try to get me approved for a procedure that basically burns some nerves in my back so that they can never send a pain signal again.
So why do we all know it’s Fibromyalgia and not Seronegative Arthritis or any of my other conditions causing the problems?
My other pain can only be accounted for by one thing, defined and proven by countless examples in this piece: Fibromyalgia. It’s real.
This very real illness found me after I lived thirty-two years as a “normal” person (whatever that means!) It has changed my life beyond recognition. But I’m here, I’m fighting with every being of my body and I will not let it win.
Please share this with anyone who is suffering or with anyone who does not believe.
Powered by Facebook Comments