How I recovered from Fibromyalgia
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How did it start
I was walking around a car boot sale when I felt a throbbing pain in both my hips, by the time I got home the pain had increased. I didn’t think anything of it and spent the afternoon with my feet up. When I woke up the next day my muscles and joints felt so stiff that I could only walk around like I was 100 years old not 29. As the week went on the pain gradually crept up my back and I decided it was time to see my GP. I immediately had 5 blood tests for arthritis, rheumatism and some general blood disorders. Of course they all came back negative.
· Initially a urine infection
· Chronic widespread pain in almost every muscle but always worse in
hips and back
· Regular headaches
· Restless legs
· Joints continually “cracking”
· Very dehydrated
· Exhausted all day, asleep by 8pm most nights & sleeping for at
least 11 hours
I carried on going to work, although as each day went past the pain (which I can only describe as each muscle being yanked in opposite directions) continued to spread into every muscle in my body. Although I was sleeping well each night I was extremely exhausted all day and was usually asleep on the sofa by 8pm. As the weeks went by I was having more and more time off work, which to me, as I am very conscientious found almost more stressful than actually going in.
The blood tests and drugs
Over the course of the next 3 months I had over 40 blood tests, all-negative, 3 x-rays and tried and tested so many different drugs from diazepam to steroid injections none of which worked. I also had physiotherapy for 2 months with no relief. I saw two top specialists in Sussex, the first I saw every week for approximately 2 months. His final words to me were “I am sorry there is nothing more I can do for you, I am sure it will go in its own time,“ – this was the only time in 3 months I had cried. My father had carried me into his office, as the pain was unbearable and to hear a top specialist telling you he had no answer was devastating. Particularly as I had got to the point whereby even the worst news I could accept because then I could plan how to deal with it.
On my final visit to the first specialist he recommended I try Pregabalin – finally my wonder drug that worked almost instantaneously. I later heard from my GP that Pregabalin is often one of the first drugs given to treat Fibromyalgia sufferers and the likelihood is that this specialist did not believe Fibromyalgia exists – there are still a lot of old school GPs out there – always get a second opinion!
I was then recommended another specialist at the Goring Hall Hospital, who was my hero, within 5 minutes of being with him, he said without a doubt you have Fibromyalgia. His simple test was to apply pressure onto the tender points around the 4 quadrants of the body and pain was felt in all 18.
Although the Pregabalin pretty much numbed the pain, my immune system was still extremely low, (I had an abnormally low white blood cell count) so as well as having the virus I was constantly ill with infection after infection (mainly throat and chest) including an infection whereby my ankles were so swollen that I had to be on crutches. I also had chronic IBS and a hiatus hernia within the first month of getting the virus. The other problem I found with having the virus was that any other illness/infection I picked up along the way the GP would always blame it on the virus. For example, even though I complained to my GP that I felt like I had a rock in my oesophagus - my hernia was still undetected for 3 months until I had an endoscopic camera put down my throat.
I have no doubt in my mind that I got fibromyaliga due to the combination of the lack of water in my body, a highly stressful job, drinking heavily 3 or 4 nights a week and my low immune system which meant I became very suspectible to illness.
How I got better
The specialist I saw at Goring Hall advised me to change my lifestyle as I was currently in a managerial position of a Hotel with a “work hard-play-hard attitude”
He was very direct and told me that Fibromyaglia was for life but that I could make the best of it. He said, which has definitely stuck with me, that my positive attitude has kept me out of a wheelchair and advised however difficult to try and keep that positive mentality… which I have.
He reiterated the importance of exercise but as I was so exhausted and in so much pain, I really had use to all my inner strength to motivate myself. He also recommended hydrotherapy, but I was unable to find a pool closeby.
I was recommended an excellent Acupuncturist in Rottingdean who I totally felt helped me on my quest to get better. He had a look at all my blood test results and immediately pointed out (which no doctor had done before) that I had almost no water in my body and that if I continued it could be very serious as all my vital organs were extremely dehydrated. I then told him that I had been drinking about 2 litres (if not more) of diet coke a day, never drunk water and very rarely drunk any other drinks (other than alcohol) for about 10 years. We looked at the holistic approach and I put the following lifestyle changes into action: -
· I gave up diet coke and drank 2 litres of water a day
· I gave up alcohol and cigarettes
· I resigned from my job and worked as much as I could in my
father's company doing basic administration
· Giving up my job meant 2 hours less commuting time in the car and
therefore more exercise in the form of walking
· I tried to go swimming at least once a week.
· I ate as much fruit and vegetables as I could.
· I had acupuncture once a week
As time went on, even though I was on quite a strong dosage of drugs, I felt my immune system was getting stronger and stronger as I was no longer picking up any infections. After being on Pregabalin for about a year I consulted my doctor about decreasing the dosage, which I did gradually to nothing over the course of 6 months. I have now been totally drugless for over a year and I, 100% believe it was changing my lifestyle, which helped me beat Fibromyalgia. In the last year I have had 1 attack, just before my wedding, which showed me how important it is to try and keep my stress at a bay, as this is obviously a trigger.
I am proof that it is possible to beat Fibromyalgia and I am sure you will have the same success as I did. I do try to live by the mantra “positive things happen to positive people.” Although I fully acknowledge it is easier said than done but I hope my story gives you the inspiration!
This recovery story is in categories: Fibromyalgia, Irritable Bowel Syndrome