Today I thought I would share some advice for the newly diagnosed. Learning to live with Fibromyalgia is not easy I’ll be honest. There are times when you may feel lost at sea and not even recognise yourself anymore. For me, there were two choices, to bury my head, wish the world would go away and feel sorry for myself. Or, adapt to my new way of life and make the very best out of what I had left. For anyone who knows me the first was never really an option. Don’t get me wrong I have had wobbles and continue to have them but I prefer to look for the positives in life.
There is a good chance you may find this article before you have been diagnosed. As I read on someone else’s blog, or possibly a forum when I was on the journey to diagnosis you usually know you have Fibromyalgia before you are officially diagnosed. The perspective I am talking about concerns living in England, medical procedures and routines may be different elsewhere in the World.
My journey towards Diagnosis
My symptoms began about two weeks after my honeymoon. I am not even going to go there in terms of mentally what this did to me at a time when everything was new and exciting and plans for the future were being dreamt of. But practically speaking the first few months consisted of several rounds of blood tests. I am (I have to admit) not fantastic with needles. It is not that I am completely phobic I just have the habit of at best, going light-headed and at worst passing out. I also had a visit to a rheumatologist. With hindsight, this was the least helpful pit stop on my journey. The rheumatologist I saw only considered one of my symptoms and ignored the rest. He actually said that he didn’t believe in Fibromyalgia and was always arguing this with his colleagues. (The fact I had to take from this with later reflection was that other medical practitioners of his level did believe in it!).
Some false light in the middle of the tunnel
To begin with, I felt really positive about his diagnosis of widespread Tendonitis and tried to do the exercised he had given me. However, not only did nothing get better but things got worse. I fully remember from my pre-Fibro days that when you start a new exercise routine things ache (not hurt but ache) but the ache decreases as the muscles strengthen. This was not the case with these exercises they actually hurt and although I tried to keep doing them in small doses it was just not practical. Let’s face it they always say if an exercise causes pain not to do it!
I was not able to see that Rheumatologist again as his parting words to me were there is no point seeing you again, either you have done the exercises and will be better or we will be having the same conversation again.
Looking for other answers
At this point, I started reflecting on the fact that he was in disagreement with his colleagues and asked my GP if I could be referred to one of them instead. She was genuinely shocked by what he had said and agreed to sort out a referral. However, about a week later she called me back with good news saying that there was a change in legislation. Primary Care Practitioners were now able to diagnose Fibromyalgia themselves. At this point, it was about eight or nine months since my symptom first began. At that stage, the NHS guidelines said you would need to have had the symptoms for at least six months before a diagnosis could be made basically everything else needed to be ruled out first, having looked again today it now says three months so diagnostic skills must be improving!
Learning to Live with Fibromyalgia
Getting a Support Network
One of the first things I can recommend is to find some places to get the answers you need. I found the Fibromyalgia Action UK board quite useful to read about others experiences and answer some questions. The other thing you will need is a good support circle. I am very lucky to have a fabulously understanding and helpful husband, I can’t imagine how I would cope at times without him. If you are not so blessed there are great support networks like My Fibro Team where you can get lots of support and find like minded individuals.
Finding the right supportive aides
The best mattress you can afford
There are a few things I would simply not be able to live without right now (well more exactly my quality of life would be unbearable) number one is a first class mattress we use the N:rem one, I am well aware this is a considered purchase but they do some excellent flexible payment plans and their mattresses are designed in such a way that you have moveable blocks and can create softness where you need it and support where that is preferred. I am so glad Michael found this (and no, I am not getting paid to promote them)
Make yourself comfortable
Michael bought me this wonderful Queen Rose ZZZ’s U Shape Support Pillow for my birthday. It has been an absolute godsend. Even with the mattress, I was having some problems sleeping getting support for my shoulders and this seems to have fixed this problem.
Natural Aides to accompany medication
I have become a major fan of essential oils for treating symptoms. You can read more about this in my post on that very topic. In fact, I am even using essential oils for cleaning and all sorts of other uses. This is partly due to my semi-obsession with Melissa Maker’s YouTube Channel Clean my Space…
Working out your limits
Learning to pace yourself it one of the most crucial skills to living with Fibro. The very best way to explain this is to refer you to Christine Miserandino’s very helpful Spoon Theory which I have mentioned before. Read, digest and use this as your guide. Pretty much everytime I am having a little moan I can guarantee I have used too many spoons!
Find your happiness
However bad things can be we all need some happiness in our lives. I have had to restrict mine. Before Fibro, I was actively singing in a choir and performing in stage productions. I do not have enough spoons for these anymore. However, I continue to be creative through my crafting which gives me happiness (even if the bank account is less understanding of this) hence the creation of this blog – living creatively with Fibro. My creativity comes in the form of the greetings cards I make as well as the simple mindfulness colouring I enjoy relaxing with.
If you are new to the world of Fibromyalgia do stop by and say hello I would love to hear from you.