Fibromyalgia Frustrations Life Fibromyalgia Community

This post may prove to be somewhat controversial but it comes from my heart and I believe I would be doing a disservice to my fellow “warriors” if I were to let it go unsaid.

When I was first diagnosed 15 years ago, I was relieved that having already suffered for 10 years my condition was very real and had finally got recognition and more importantly a name. I remember leaving my doctor’s surgery and going home, heading straight for the computer.

I wanted to know all there was about Fibromyalgia, it was something I had never heard of before and those around me had never heard of it. I wanted to learn what it was, what caused it, and more importantly how I was going to manage it.

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After many hours on search engines, I finally switched off the computer feeling totally down, demotivated, and totally despondent. All I had learned from my fellow sufferers was how to claim disability allowances, how I should stop working, what were the best drugs and plenty of pictures of people posing happily with their wheelchairs and walking sticks.

On that very first day of diagnosis all those years ago, I made the decision that this was not and never would be my route in dealing with Fibromyalgia – there had to be a better way and I was determined to find it. So over the years, there have been ups and many downs with this condition but my determination to find a way to manage it positively has remained steadfast.

Since committing myself to the goal of reaching out to fellow sufferers, I have stepped back into the world of Fibromyalgia communities and online support groups and have to say in the majority, there are some great sources of advice and help. There is a thriving community of people who come together and share their stories safe in the knowledge that there are others who understand them and can relate. The internet I feel has helped us all become much more educated about our condition which can only be a good thing.

Therefore, you may wonder where is my frustration and the point of the post?

I think sometimes, those of us with Fibromyalgia can be our own worst enemies. The frustration at the lack of support from family, friends and yes, even medical professionals makes us vulnerable to hosting our own pity party. In the absence of outwardly obvious symptoms, the pages of “normal” tests results, and our grossly misunderstood diagnosis, we quickly become paranoid and confused to the point whereby a broken nail is blamed on Fibromyalgia and our plight appears hopeless.

Sadly, I see hosts of people on these forums searching for answers that clearly our doctors can’t or won’t provide, I see them grasping for any bit of information that may explain away their constant headaches, their unexplained bruising, their restless legs along with a host of other weird and not so wonderful ailments that plague their daily lives. I too have been guilty of putting every little ache and pain down to Fibromyalgia when in reality it could potentially have been something more sinister.

I find myself staying away from the doctor’s surgery, probably down to the years of doubt and disbelief that there was anything wrong with me, the fear that I will be labeled a hypochondriac or once again, be sent off for tests that only ever come back normal. I dismiss many ailments as “it’s just a flare” and crack on as usual.

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I resisted the offer of medication back when I was diagnosed in 2000, for me, strong painkillers and antidepressants were not the routes I wanted to take if I could help it. I had to learn more about what I was dealing with as opposed to just giving in, rolling over, and accepting the first treatment protocol I was offered. A doctor many years later, told me that if had accepted those drugs back then, it is unlikely that I would have the life I have now, it would have changed……..for the worse! My body would have gotten used to the doses over time and my prescription would have been increased several times to enable me to have had the same effect.

Please don’t get me wrong, I am not saying that medication is bad, it was just not for me at the time and I have never reached a time (yet) where I am ready to hand myself and my pain over to drugs. Maybe I am a fool and possibly there is the chance that I could have led a relatively pain-free existence for these past 25 years, my fatigue could have been controlled and I could have led a different life. In my defense, I also suffer from hemochromatosis so it is important that I protect my liver where possible.

When I read the stories from fellow sufferers, I could cry. It seems that the medical professionals are only too happy to hand out the prescription drugs like smarties as a first resort as opposed to the last. I have found that there is another way and for me, that doesn’t include medication. I only wish I had found out earlier that changing my diet and including yoga and mediation in my life would have such a massive impact on symptoms. My 20’s, 30’s, and 40’s may have had a different story to tell.

I see the forums crammed with people who have a whole host of ailments and conditions all laid at the Fibromyalgia door, they have prescribed a cocktail of drugs including morphine for symptoms that potentially may have nothing to do with Fibromyalgia. Whilst this condition is very real and affects our lives greatly, the reality I feel is that the GP’s use it almost as one net catches all. Are our complaints ever really investigated or are we written off as the nuisance that is constantly in the doctor’s office?

My own doctor fobbed me off with a physio appointment recently, only for me to be told by the physiotherapist that he couldn’t possibly work with me as there wasn’t one area that needed attention but my whole body. He was fuming that in 25 years I have had to find my own way and I have never been offered the support that he thought I was due – he subsequently wrote a rather abrupt letter to my GP.

So, I guess at the end of this, what I am trying to say is that we as Fibromyalgia sufferers have to take more responsibility for our conditions, we have to research the alternatives to the strong drugs which will turn us into zombies barely functioning and we have to be honest with ourselves.

Whilst we have to treat Fibromyalgia with respect, we must also be open to recognizing that it possibly isn’t the reason for every little thing that goes wrong with us. Arthritis can come with age not necessarily because you have Fibromyalgia, issues with digestion won’t always be IBS.