My Fibro & M.E. History
Updated: Jun 26, 2019
Age Now: 47 (well, next week)
Age Symptoms started: 41
Age Diagnosed: 42
Diagnosed: 7th August 2014, Rheumatology @ Queen Alexandra Hospital
History, Lifestyle and Symptoms
I have always had a reasonably active lifestyle. Training regularly at the gym for over 15 years, cycling for pleasure and at times 38 miles a day to get to and from work, walked the dogs for miles, jogged, attended regular dance classes, learnt the trapeze etc. I was also a very social person, always up for a night out no matter if I had work the next day! (naughty me).
When the symptoms started, I thought they were general aches and pains to be expected at my time of life, especially with the party type of lifestyle I had. Overtime the aches and pains became worse. I found standing for more than a few minutes painful, general movement was stiff and painful. In January 2014 I woke with a headache that progressively got worse and didn’t stop for several months! During this time, I become very light and sound sensitive which effected my concentration levels.
After seeing my GP who was as much use as a chocolate kettle (that’s a whole new story) I changed GP’s and was immediately referred to Rheumatology. In the meantime, my new GP treated me for Fibromyalgia or ME and signed me off work for a month. I was not happy about being signed off work, but I had to admit defeat!
Returning to work was troublesome. My GP advised “light duties and regular breaks” which my employer reluctantly agreed to. After a few weeks this was reviewed, and my employer felt the special treatment I was being shown set a president within the team! The special measures were withdrawn. Despite researching and advising my employer of help centres, offering to work from home, asking for Occupational Health to assist (which was denied every time it was requested), I was finally signed off work again by my GP. The work situation had served to perpetuate my symptoms!
After many months of trying to negotiate a return to work with my employer they decided to sack me, or in their words “release me from my contractual obligations”. Therein started the battle for justice, which again poured more fuel on the Fibro fire. I’m glad to say I won my case… yay
Fibromyalgia and ME had a significant impact not only on my professional life, but also my personal life. Close friends became distant, my partner could not fully understand the implications of the illness. I was psychologically struggling with swift unwelcome changes in my life leaving me feel depressed and anxious, not able to leave the house, unable to walk up a flight of stairs without being in burning pain, not able to drive, unable to dress, wash, shower, shave. Not able to prepare food in the normal way. The lowest point was receiving the letter of dismissal from my employer, who I had worked so hard for. The sky was black that day and I am ashamed to say that I no longer wanted to be part of this world! I was lucky, as someone was with me who, after many hours was able to talk some sense into me and I thank them from the deepest reaches of my heart.
I was constantly worried about the future, overwhelmed by changes I had no control over and extremely concerned about my professional and financial future.
At times the pain and fatigue were so severe I was unable to get out of bed for several days. The pain was constant and all over my body, from the souls of my feet to the top of my head, especially in my hands, hips, legs and feet. I was unable to stay on one position for too long as the pressure would build up and make the pain worse. Wearing clothes was painful, socks hurt my ankles, waistbands on trousers too painful. A duvet was too heavy and would increase the pain, so sleep was out of the question. I would be awake for up to 48hours at a time, sleep for a few hours and up again for 48 hours. Eventually my body would give up and I would sleep for 18 hours, waking in excruciating pain and the cycle would start all over again.
The constant unrelenting pain, fatigue, worry and inability to achieve anything had a negative effect on my self-perception and worth. Depression become worse, with mood swings like being on a roller coaster!
I attended a 10-week pain management course, but that did not help. I also tried Chiropractors, Acupuncture, Physiotherapy, meditation, self-help books, relaxation techniques and a whole host of other things. Nothing worked.
I was invited to try a new treatment called Physiokey. I was very sceptical as I had got used to how wonderful all these miracle treatments, pills and potions are for managing or curing Fibromyalgia and ME which were all unfounded and basically did nothing!
My first treatment was 16th February 2016, I was not holding my breath for anything amazing to happen. How wrong could I have been!
When arriving I was unable to walk more than 5 meters even with crutches. I had 2 days of intense Physiokey treatments and walked away without crutches and able to walk up a flight of stairs. It was amazing to say the least.
Since that first treatment until now I have seen consistent improvements in the Fibro and ME. I studied and passed all my professional exams to become a Physiokey Practitioner and now run my own business helping others with their pain relief.
Within 5 to 6 weeks I was off all medications apart from some paracetamol and a much lower dose of Venlafaxine.
After following all the advice my GP and specialist from the Pain Management team gave me, taking 40 tablets a day, wearing a morphine patch for 18 months, and not seeing any improvement it was great to finally take back control and be the master of the Fibro and ME.
Now I want to take the next step and claw back some of what has been taken away and increase my physical ability. I know it will be a slow journey, but my aim is to be as fit as I can be by the time I am 50, that’s 3 years of work and enough time to achieve the dream.
That journey has started and with the 30-day movement-fitness challenge starting on 8th July I think it will motivate me to succeed.
I have listed below the medical team who looked after me for so long before my Physiokey Treatments along with a list of medications, most of which I took daily! Looking at the lists, it amazes me the amount or money and resource spent on just one person.
· GP – Local Doctors Surgery
· Dr Joanne R – Consultant in Pain Management
· Mrs Penny R – Specialist Pain Team Nurse
· Mrs Jo T – Specialist Physiotherapist in Pain Management
· Dr Andy J – Clinical Psychologist in Pain Management
· Mrs Sue B – Specialist in Pain Management
Medications: taken daily but not all during the same time
· Naproxen 1000mg
· Omeprazole 20mg
· Tramulief 200mg
· Paracetamol 4000mg
· Amitriptyline 10mg
· Zapain 4000mg
· Sertraline 200mg
· Mebeverine 1080mg
· Gabapentine 3000mg
· Fybogel 1 sachet
· Metoclopramide 30mg
· Venlafaxine 150mg
· Zopiclone 10mg
· Zolpidem 10mg
· Colofac 405mg
· Clenil Modulite 100mcg
· Buprenorphine patch 35mcg per hour
· Fentanyl patch 25mcg per hour
I had severe side effects from some of the medications, especially Gabapentine. I lost the ability to talk properly, suffering with slurred words and poor memory, unable to formulate complete sentences and thought processes. I also suffered from fits and episodes of non-clarity. The medical Team thought I had suffered a stroke, after testing it was established it was the side effects of Gabapentin. While the symptoms massively improved when I stopped taking the medication, 3 years on they persist from time to time. This is most evident when stressed or tired.
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