Fibromyalgia is a chronic condition that causes widespread pain, fatigue, and other symptoms. No one knows what causes fibromyalgia or why people get it. Diagnosis is difficult, with many doctors still not even acknowledging that it exists.
Fibromyalgia can be treated, but there’s no cure. Although fibromyalgia is sometimes categorised with arthritis, it is not arthritis as there’s no physical wear and tear on joints as with osteoarthritis and it’s not an autoimmune disease like rheumatoid arthritis. Fibromyalgia predominantly affects the nervous system.
Despite fibromyalgia still being very much on the realm of controversial medical debate, there’s little doubt its a condition that’s on the rise with many celebrity sufferers such as singer and actress Lady Gaga and TV, actress Lena Dunham and TV and Radio presenter Kirsty Young, helping to raise awareness of the condition.
Carly Mullane, a 36 year old civil servant and mum of one from Coventry and engaged to fiance James, has suffered from fibromyalgia for five years. Carly’s first symptoms of fibromyalgia were bloating and digestive problems and disturbed sleep.
“I know many people with fibromyalgia can suffer with symptoms for years before being diagnosed, but I was diagnosed relatively quickly thanks to private medical care.
I first started experiencing digestive problems in August 2013, mainly bloating and diarrhoea, which is characteristic of the condition, coupled with difficulty sleeping, and then in October I contracted a virus. Already tired from the sleepless nights, the virus completely wiped me out. There were days when I couldn’t get out of bed I was so tired. I also had unsightly, itchy rashes all over my body.
The virus ran its course but I was left with pain in both of my shoulders. At first doctors suspected a form of reactive arthritis triggered by the virus but I wasn’t convinced. I was in too much pain and I was constantly tired.
By January 2014 the pain and subsequent swelling had spread to my hands and fingers. The swelling was always so much worse in the morning and sometimes so my fingers were so swollen by the time I woke I couldn’t grip anything. I used to have to hold my hands in water to try to reduce the swelling before I could even think about using them. Again doctors suspected arthritis but I didn’t agree. I know arthritis can affect people of all ages but there was so much more going on than just the swollen fingers and a painful shoulder. I felt absolutely awful but I was made to feel as if it was all in my head. The pain was constant and at times so overwhelming I simply couldn’t move, my stomach was still playing up and I was absolutely shattered.
I’m not one to mope but there were times when I just wanted to be left alone; I didn’t want to see anyone and I certainly didn’t want to be seen. I’d gone from having an active social life, going out at least once a week with friends and family, go-carting at weekends, ‘going ape’ or just meeting up with the girls once a week, to being a prisoner in my own home, a prisoner of my own body. The physical problems were bad enough but living with a condition like this affects you mentally too, it’s difficult for it not to. I was irritable and snappy and kept thinking ‘surely this can’t get any worse?’
It was difficult for my fiancé James to see me this way because I’m usually so bubbly and outgoing. But he has been incredibly supportive. I know it has been hard on him to see me in pain. When I’d lie there crying, physically unable to get up, he’d promise me it would get better. My friends have been amazing too and work has been very understanding.
In April 2014 I went to see a private rheumatologist and he was excellent. He listened to what I had to say and as the session progressed he carried out a series of pressure point tests for fibromyalgia. This is where relatively mild pressure is applied to potentially ‘responsive’ areas of the body, like the insides of knees and elbows. A person with fibromyalgia might find this particularly painful – I was in agony. The pain was so intense I almost cried. Following the outcome of this, blood tests and an ultrasound on my hands to rule out anything else, and basing his assessment on what I had told him of my symptoms, my consultant diagnosed fibromyalgia.
I’m not sure how I felt at the time. I had heard of the condition but I didn’t know too much about it. Part of me found it difficult to accept I had something that was never going to go away. My doctor explained there is no cure as such, but that with the correct medication it was something that could be managed. In some ways I think I thought maybe I was just going through a bad patch with my health and that things would get better of their own accord but of course that wasn’t going to happen.
I was prescribed codeine for the pain, alongside amitryptiline but my blood pressure went through the roof. Doctors said it was dangerously high and insisted I came off. They then tried me on pregabalin, a drug used to treat epilepsy but I gained 8lbs in two weeks. I was then prescribed duloxetine but the side effects were so horrendous I could only manage one tablet.
My pupils dilated, I was sick and I didn’t sleep for a full 36 hours. All this time I had I continued to take codeine for the pain but now I was having trouble breathing. I had taken it for so long it had triggered respiratory depression, which meant I was stopping breathing in my sleep and waking suddenly to catch my breath. No longer able to take codeine, doctors moved me on to tramadol in October 2017, which is highly addictive and not something I’m at all happy about taking. I have also tried deep tissue massage for the pain, which does help momentarily, but the effects aren’t long lasting.
It was my brother-in-law who suggested I try Actimas Celafen. He had read how a lady suffering with fibromyalgia, also on tramadol for the pain, had managed to reduce the number of painkillers she was taking thanks to the cream.
Having gone through hell and back with four different medicines I was highly sceptical a £10 cream would be able to help. But as James said, what did I have to lose? We ordered the cream and when it arrived James applied it to my lower back and shoulders. Within twenty minutes I was able to lean forward without my muscles screaming at me. A simple movement that anyone else would take for granted, but for me, being able to do this without being in any pain was monumentous. I was so relieved I cried. Up until that moment I had either been in some degree of pain or stiff from anticipating pain. But now I was moving freely again. I asked James to rub the cream in all over my back and the effects lasted for a good few hours.
I continued to use Celafen on a daily basis and gradually I began to regain my life back. I was able to shower unaided, I was able to take a walk to the shops, I was able to do the normal day to day things. By Christmas 2017 I had noticed such an improvement that when family and friends asked what I wanted for Christmas, I said Celafen.
I’ve been using the cream for about eight months now and I feel so much better. Friends and family have also seen a marked difference in me; I’m much happier and can talk freely, I’ve even got a bit of a social life back and see the girls every couple of months.
Don’t get me wrong, I still have bad days. Celafen isn’t a fibromyalgia cure, but it has been an enormous help to me. I still have nights when I wake up in pain, but when I do, I apply the cream and it relaxes me back to sleep again. My movement range has improved considerably. I’m not fully mobile by any means and I imagine it will be a while before I’ll be able to ‘go ape’ again but the cream gives me a break from the pain and allows my muscles to form different memories. I no longer anticipate pain as much as I used to which is hugely liberating.”
Celafen is available exclusively from Skin Shop; visit www.skinshop.co.uk