I have been thinking about writing a blog about my journey with Fibromyalgia for such a long time but kept putting it off until I had found a miracle cure!! I am still working on that!
As a Reiki Master and Healer it is quite hard to get your head around the fact that you can have an illness that they say has no cure.
This blog is not about me moaning about my symptoms and how debilitating Fibromyalgia is, it is about my journey and what I am doing to improve my health day by day.
I was officially diagnosed in August of 2015 by a Rheumatologist at Northern General Hospital in Sheffield. For years I had been suffering with various symptoms of the condition but no one had ever put them all together and come up with a diagnosis. I was feeling like a hypochondriac and wondering if I would just always have these different things going on with me for life. My turning point in leading up to my diagnosis was when my 19-year-old niece was diagnosed with it, this then started me on linking all of my separate symptoms together.
So I went along to the doctors with a list of my symptoms and was told Fibromyalgia is very difficult to diagnose, the pain you have is muscular and I will refer you to a Physio. No referral for me to be diagnosed.
I went along to the Physio who examined me and told me she didn’t think I had Fibromyalgia. I then went back to the doctors and insisted on being referred to a Rheumatologist, the doctor said she would but she didn’t think I had it either. I had to go away and write a list of all my symptoms so that she could send this with the referral. I wrote a 2 page A4 letter with my symptoms on.
I wrote a 2 page A4 letter with my symptoms on.
This is what I wrote:
Please find below a list of my symptoms and pain points in order for me to be referred to a Rheumatologist.
- I started with lower back pain around 12 years ago. This goes across both sides but is worse on my right side and extends to my hips. The pain ranges from spasms to shooting pains. This back pain has been there for 12 years and never goes away.
- When I have a bad flare up which can happen two to three times a year the pain goes into my buttock and I find it very hard to sit down for any length of time. The pain also then goes all the way down my leg and into my foot. This can be in both legs and feet. There is not always a trigger for when it flares up sometimes it just happens. If someone touches it like during a massage this can make it flare up. I find that this kind of flare-up can last anything from two to three months. During a flare up the pain is constant including the shooting pains and spasms. Most medication does not help with the pain.
- Around 7 years ago I started suffering with pain in both my ankle bones. I was finding it hard to put my feet flat on the floor when I got out of bed in a morning. I struggled to walk down the stairs properly. The backs of my ankles were extremely tender. I still struggle now when I get out of bed to put my feet flat down as my ankles feel like they have seized up. I often struggle to wear shoes/trainers that are high up the foot as it rests on the ankle bone and aggravates the pain. There was no medical explanation for the pain. There is no trigger for this sometimes it just seems to be worse than normal.
- About 4 months ago I noticed that when I walk for around 10/15 minutes I get a burning sensation up the ankle and calf of my right leg.
- I have shooting pains from my wrists that go up my arm from both hands. Again no medical explanation for it. I can’t remember how many years ago this started but it must be over 10 years ago.
- I have pain just below my shoulder blade on both sides but is worse on my left side. This feels like a dull ache. This gets worse when I have been sat in a chair that doesn’t have a high back. Also when I am doing Reiki on a client I can’t hold my arm out in front of me for long as the pain starts in my shoulder. It often feels like it is tired, like it has done too much even if I haven’t done much physical activity.
- I frequently get cramp in my calf and toes. On two occasions the cramp pain stayed in my calf for over a week and I struggled to walk at all with the pain.
- My arms often feel very heavy and I get pain from the top of my shoulder down to my elbow. Plus pain from my elbow down to my wrists. This can get worse when I have been using the computer or having to lift my arms up like drying my hair. Again it just feels like my arms are tired and have done too much when I haven’t really done much at all.
- I have pins and needles that go from my feet and up into my legs. I also get this in both arms too. Again no trigger it just happens.
- If the weather gets a little bit cold my feet go numb. When I am driving for any length of time my left foot goes numb, this happens in cold and hot weather too.
- I often have a sense of something crawling up my legs but when I look there is nothing there. This usually happens on the front of my legs.
- I get a sensation in both my legs usually from the ankle up to the knee which feels like a wavy sensation. A bit like pin pricks up my legs. It is very difficult to try and describe but it is like something is running up and down my legs. It doesn’t last for long but frequently happens with no trigger.
- When I wake up in a morning my body is stiff and it aches all over, it often feels like I have done a work out the day before when I haven’t.
- I have very dry eyes and was referred to the hospital many years ago about this. This can cause headaches and blurred vision.
- I have had insomnia for as long as I can remember. Have trouble getting to sleep and constantly wake up during the night.
- When I do sleep for 8 hours + (usually with some sort of medication) I still feel tired when I wake up the next day.
- I am frequently fatigued and often would like to go back to bed during the day which I try to refrain from doing.
- I suffer from a lack of concentration and struggle to read a book for any length of time. This normally tends to happen in the afternoon after I have been working for a few hours. It affects my work as sometimes I just can’t be bothered to do anything.
- I mix my words up and get them backwards and forget questions that people have asked me or names of people who I know.
- Sometimes I have a sense of feeling spaced out, I really don’t know what triggers this.
- I have been diagnosed with IBS which would probably be around 20 years ago. This varies from constipation to uncontrollable bouts of diarrhoea.
- I frequently have to go to the toilet around every two hours.
- I have tried to come off the contraceptive pill on three separate occasions and each time I have fainted due to the period pain.
- I have suffered with Depression and Anxiety for many years.
- I was found to be severely low on Vitamin D and now have to take two tablets a day.
- I have a dust mite allergy which I found out about last year.
- I frequently have bouts of all over body itching, again it can’t be explained. The episodes can last for a couple of months and then die down.
- My niece was diagnosed a couple of months ago with Fibromyalgia.
So quite a lot of symptoms as you can see.
I eventually got my appointment through to see the Rheumatologist who said to me after reading the list that I had just about every symptom of Fibromyalgia there was. He explained that they do not know what triggers Fibromyalgia and there is no cure.
I felt elated that I had finally been given a diagnosis for all of the pain and brain function problems I had been suffering with over the years, however the elation did not last for long as I soon realised that through my research there was no cure.
One of the things that seemed more apparent than anything was based around diet and what we put into our bodies. Well my diet was rubbish, I had massive sugar cravings and would ram a full box of Jaffa Cakes down me in one sitting just to try and feed the habit. It was an addiction and not only was it feeding the Fibromyalgia it was also making me put on weight – In August of 2015 I was the heaviest I had ever been so I knew I had do something, I couldn’t just sit back and let this thing beat me.
So I started working with a herbalist and gut psychologist Jan Cassels. I was told by Jan that it appeared I had Fibromyalgia and Adrenal Fatigue – double whammy. So I set about on a very strict diet where I cut out sugar, dairy, wheat, grains and anything else that I enjoyed eating!! Including alcohol !!!
I did this very strict diet for around 5 weeks, I wasn’t noticing much difference in my symptoms but I did lose over a stone in weight – I can tell you that alone felt great. As I predicted inevitably I fell off the wagon in terms of diet and started stuffing my face with all sorts of nasty things and the sugar cravings came back with vengeance and my energy levels have dropped considerably, the fatigue is very debilitating and stops me from doing a lot of the things I want to do.
So now I have taken stock and realised that I have to take care of myself on the inside and outside. I am currently looking into B12 deficiency and all sorts of different supplements and diets
I think I have probably bored you enough already so I will continue with my findings on further posts.
I would love to hear about your Fibromyalgia journey and what works for you. Please don’t ever feel like it is all doom and gloom as there are lots of things we can do to make our lives better and manageable.
Let us KICK the ASS out of FIBROMYALGIA
Love & Light
Reiki Master, Teacher and Healer