Nobody

Nobody Understands My Fibromyalgia, CFS/ME Part 2

In Blog by Alyssa Reid0 Comments

If you are feeling like ‘nobody understands my fibromyalgia, CFS/ME and chronic pain, know you aren’t alone. Those of us with fibromyalgia, CFS/ME – and in fact all invisible illnesses are hard enough to get our heads wrapped around – and we are the ones who have the illness to begin with! And if you don’t understand yourself, how is anybody else going to understand you?

Every body is unique, so is yours

Every body is unique, so is yourseither, how do you expect anybody else to understand you?

As I mentioned in Part 1 of this blog, as a recap:

Every person on this planet is unique unto themselves.  Although hey may have knowledge of your experiences as well as have a grasp about your illness(es) – and they may even have the same illness…but your personal experience of things like pain, sleep disturbances, fatigue, mood and day to day quality of life is something only you and you alone can understand.

‘It’s Just Your Fibromyalgia…’

It's all in your head

It’s all in your head

How many times have we heard, ‘It’s just your fibromyalgia/CFS/ME’ from medical professionals?  And instead of carrying out the relevant investigations, we are tarred with the ‘fibro brush’. To me, hearing this is pretty much saying, ‘It’s all in your head’.

The underlying issue is that in the UK, being treated by the state, and with an almost bankrupt NHS, getting more expensive investigations carried out doesn’t happen without pushing for many of us with these conditions.  (It took me 9 yrs to get an MRI, which I had to go private for (thank you Mom, not exactly a dream birthday gift but most appreciative and grateful!) .

It Wasn’t All in My Head…

It was in my neck.  The MRI finally showed that something – or in fact many things that were mechanical were going on from bone spurs (one that’s decided to take residency up in my spinal cord), bulging discs, nerve compression, spinal cord compression…the list goes on.

Bottom line was – it WASN’T my fibromyalgia.  And you know what?  When I got the MRI results in a letter, I cried.  Because there was finally evidential cold hard facts that was a condition with no tests to prove I WAS IN PAIN. My hands were going numb for a reason. My headaches were off the scale. And my neck feels like it has been broken as the only way to describe it. And I had to push relentlessly to be investigated and heard.

 Gain Back the Control Over Your Health

Gain control

Gain control

Being able to  track, monitor and record our experiences is critical for all of us in regards to understanding our bodies, both physically and mentally.

Nobody, including our medical professionals, will ever truly understand us…but by providing them with detailed (yet fast and easy to read and comprehend) reports of our daily experiences, provides both you and them with the platform to work from in getting the care, support and treatment that you need. Now, more than ever before doctors simply do not have the amount of time that many of us with complex conditions need for appointments.

We Need Easy to Use Tools for Our Complex Conditions

We need to find the right tools to help us to help ourselves – and to help our medical peeps, too. And it was these reasons that FibroMapp App was created.

8in1 award winning app for fibromyalgia, CFS/ME.

8in1 award winning app for fibromyalgia, CFS/ME.

When we start to understand ourselves, our triggers, patterns and medications/supplements, we are able to start taking back more control over our health.

Medical professionals may be able to diagnose and treat us – but they need to have the background knowledge in regards to what you are going through in order to be able to help you as best as possible (or get a different doctor!). As well, they need to see what side effects you are having as well as pinpointing areas of concern.  Case in point – it seems many of our pets get better attention from the vet than we get from our doctors!

 

Getting to the Root of the Problem is Part of the Battle

The root of the problem

The root of the problem

You see,  the thing is that I KNEW that something else that was serious was going on.  But if the pain clinic, (who was my last hope to get an MRI) refused to even give me an x-ray and were happy to shoot steroids into something that a) they didn’t actually know WHAT the problem was and b) didn’t know WHERE the problem was, then, even though I begged (for the x-ray, let alone the MRI!).  The two consultants I was seeing were convinced this was ‘just fibro’.

This is after years of being shunted from pillar to post in the hopes that a specialist would refer me. My GP wasn’t able to refer me for an MRI – and even sent me to the hospital A & E one time with the hopes of getting one done, because she knew the importance of getting it done.  So trust me, I have been there, done that, got several t-shirts and a lot of vent up anger over the whole situation…The situation being my well-being and health.

Sadly, I Am Not Alone…

And I know that this is the case for so many of us when we know something isn’t right with our bodies and our medical professionals tar us for being lazy, overweight, hypochondriacs and more!!!  But the point of the matter is – without knowing what the root cause is of a problem, then how the heck can anybody actually treat us for issues that are outside of our conditions – or indeed part of our condition but not investigated or treated properly to begin with?

What Might Help

Stand up for yourself!

Stand up for yourself!

Start making a noise! When it is your medical professionals who aren’t listening, they need to be told!  COMPLAIN!!!! They have a duty of care to ensure that you are getting the best possible treatment, investigations and advice.  We need to stand firm in our resolution to blow the whistle when we aren’t being taken seriously.

On top of my own experiences, some of the stories I have read about in support groups is just jaw droppingly shocking. Some of these people need to be pulled to the side, educated and given a course on dealing with patients compassionately and with care.

The truth of the matter is that if they are treating you poorly, they will be treating others the same way – others who might not have the capacity to complain.

Complaints Are Heard if You Can Support Your Case

It was for these reasons as well, that FibroMapp App was created. To have backup information.

A hot tub

A hot tub

I complained about the treatment, disrespect and lack of duty of care…And I had back up data on my app to show the amount of pain I was in, the other symptoms, a journal and much much more including dates of appointments – what specialists had said to me logged on that date (with a witness – always bring another person with you if you can to any appointments!!!).

I thought I would share the highlight of all of my experiences with you…because it is so shockingly bad!

My orthopaedic consultant who spent an hour informing me what fibromyalgia was (yep, knew that stuff already) and why she was not referring me for an MRI (apparently the use as in movement of all 4 limbs disqualified me!) and… the best prescription she could give was…

GET A HOT TUB!!!!!!!!!!!!!!!!!!!!!!!!!

 Complaining is Imperative

Complain for change.

Complain for change.

Thing is that if you have gone through a nightmare with your medical professionals in regards to getting the investigations needed and the treatment, then chances are many others are as well when dealing with these people.

The end of the story about the complaint is that not only did I get a lovely apology letter as well as my health board having to re-write and completely update how fibromyalgia patients are treated as protocol, but apparently the specialists I complained about – and had the backup proof of my physical experiences  – that were IGNORED – are no longer working in my area…(or at all?!). 🙂

We Have Enough to Contend With…

…And not having our medical professionals give us the respect and help we all need – and in quite a few cases being told it’s ‘all in our heads’ is the cherry on the sundae in regards to everything else we have to deal with from financial pressures to raising a family with our conditions.

Because the thing is, we don’t have to prove anything to friends and family.  However, many of us have to prove things in order to be able to get financial assistance, insurance, benefits etc.  And I know that I am far from being alone in regards to feeling some relief when we have proof of what we are going through that isn’t related to our conditions!

On the flipside

On the flipside

Here is a great letter written by a doctor in regards to treating chronic pain and chronic disease.

Final thoughts

Final thoughts

Surrender

By surrendering to the fact that you will never be able to ‘get’ friends or family to understand you- and that’s ok!  This doesn’t mean not to stand up for yourself and inform people that you are unable to do certain things, that you are having a rough time of it, whatever your situaImage result for head walltion is.

This doesn’t mean you are willing to accept negative or poor behaviour either.  Just that these people will never get it.  So trying to drill it into their heads can be a head banging the wall exercise.  (And we already have a headache/migraine to begin with!).

We Have the POWER!

Never give up your power!

Never give up your power!

And that ultimately your health and well-being can be taken back into your own hands is an excellent start.

Take care of yourself. Learn to love yourself.  Make your health be a priority in regards to moving forward.  This means being responsible for ourselves and being PROACTIVE instead of reactive!

Our doctors need as much information about what is going on with us in order to treat us appropriately.  Information is power!

With over 200 co-existing symptoms with fibromyalgia, a 5 minute once every few months visit is never going to provide your doctor with everything that is going on for you in many cases!  This is why having an easy to read report like what the FibroMapp generates makes all the difference in the world – and is excellent to have in your medical files as well.

If you are not getting the care you require – you are the only person who has the control to do something about it!  We MUST PUSH to be taken seriously.  Equally, I believe that we need to also be pro-active and doing whatever we can in order to try to feel better.

Did you know these may cause pain?!

Did you know these may cause pain?!

We are not hypochondriacs, we are desperately looking for relief and a better quality of life. Equally, even in a situation where finances are an issue, there’s no other option for a doctor or specialists let alone treatment…we can start by taking better care of ourselves.

This might mean cutting out gluten, sugar, carbs, dairy or even nightshade vegetables, if we have found they cause pain and flare-ups.  It’s a start!

 

Never lose hope!

Never lose hope!

Never lose hope!

Where there is a will there is a way to start feeling better – whether it is gaining understanding of your patterns and triggers, to deciding to find a better doctor or holistic medicine to doing your research and trying different supplements and products.

We can move forward.  Honest.  All it takes is that first step…

The hardest part of any journey is taking that first step.

The hardest part of any journey is taking that first step.

Wishing you all a pain-free day!

Alyssa x

Written by our volunteer bloggist at Bodymap Apps, Alyssa Reid.  Fellow spoonie and fibromite with many years experience in researching and providing voluntary support for people with fibromyalgia and CFS/ME.

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If you are interested in taking more control in self-managing your health and wellbeing, our FibroMapp App is a double award winning app (Healthline Best Fibromyalgia App 2014/15) and is helping thousands of patients with fibromyalgia, CFS/ME, Lupus, MS and Lyme Disease gain more understanding and control.

Example of FibroMapp screens

Example of FibroMapp screens

By personalising the app to suit you, you can track everything from pain to sleep, medications (with alarms), journal, quick flare up button and more. All of which your data (private) is collated and downloaded into easy to read printable reports.

Both healthcare professionals and patients alike are finding these reports highly beneficial.  These reports are also being used as backup data for insurance and legal issues as well as benefits/welfare.

Nobody understands my fibromyalgia and CFS/ME.  But that’s ok!  The most important thing is that I understand myself – something I encourage everyone to do.

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Bodymap Apps, creator of FibroMapp App, is a not for profit social enterprise specialising in eHealth Solutions.

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