Elsie
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Elsie experienced pain for several years before being diagnosed with fibromyalgia by her rheumatologist. She and her friends started a support group after feeling that “there was nothing much being done” to support people with fibromyalgia in their area.
Elsie is 58. She had to give up her work due to ill-health. Ethnicity: White English
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Elsie describes her journey with fibromyalgia as being quite complex. Several years ago, one of her colleagues noticed an abnormal swelling in her hands. She also had very sensitive skin, like “sparkler burn feelings” and pain in various parts of her body. At the time, Elsie put it down to her debilitating arthritis. However, when painkillers weren’t helping, her rheumatologist suggested that it might be something else and mentioned fibromyalgia.
Over a few months, Elsie experienced “horrendous” fatigue. It soon seemed evident to her that she had fibromyalgia, and she was referred to the pain clinic. However, Elsie was frustrated that the health professionals running the 12-week course had no personal experience with pain. While she found some of the information useful, Elsie would have liked one of the facilitators being “somebody that knows what it’s like every day to not be able to get up or not go out…somebody that gets it”. She also thinks that specialist nursing support and a “fibro buddy” system for people who are newly diagnosed with the condition would be useful.
Fibromyalgia has impacted Elsie’s life in many ways. Although she tried to keep her long-established career as a senior social carer, she had to give up this work as it became too difficult. Having the condition also ended her relationship with her partner. Despite a medical certificate stating that she had fibromyalgia, she describes how he just thought she was “being lazy”. Further, Elsie finds it difficult to plan for social events with friends as her symptoms vary on a daily basis. As a result, sometimes she has to cancel – something that she feels “causes social problems” and is not helped by fibromyalgia being an invisible condition.
Although Elsie believes she will never get better, over time she says you do get more able to cope and manage fibromyalgia and that “…there is hope at the end”. She also feels that people are more understanding about the condition than they used to be.
Elsie and a group of her friends with fibromyalgia have set up their own “amazing support mechanism”. They regularly meet up and each have a phone buddy who they can contact for support. They started the group themselves after feeling that “there was nothing much being done” to support those living with this condition in their area. Her advice to other people with fibromyalgia would be “Don’t suffer on your own, get help… Be vocal about it, don’t hide it”.
One of Elsie’s colleagues noticed an abnormal swelling in Elsie’s hands. At the time she was also experiencing pain in various parts of her body and “sparkler burn feelings” across her body.
One of Elsie’s colleagues noticed an abnormal swelling in Elsie’s hands. At the time she was also experiencing pain in various parts of her body and “sparkler burn feelings” across her body.
Okay. My journey with fibromyalgia was quite complex. I worked in social care for 20-odd years as a senior carer, and one of the nurses had noticed a swelling in my hands that was abnormal, really quite firey-red, sausage fingers. And it took two years to get diagnosed because I wasn’t A-typical, but I had arthritis and it was quite an ongoing debilitating arthritis, but I stayed at my work for about three to four years, you know, during that. But with about six months into having this arthritis diagnosis, I was at a rheumatology appointment, and I’d been having horrendous pain. Painkillers weren’t even touching it, it was just awful. And I had very sensitive skin to touch, it was dreadful, and a very sensitive spot between the shoulder blades, at the hips and halfway down my legs. And at that time, I just put it down to having the arthritis and that’s what it was, but when I was seeing the rheumatologist, he said, ‘Well, no, because the drugs you’re on should help with your arthritis, and actually your arthritis is not under control but it’s better than it was.’
So we looked at other things that it could be, and it was evident because I was – we waited for the next two-or three-month meeting, and then it was evident from… I had horrendous fatigue, I was, but with this fatigue, it wasn’t like a normal fatigue. I could be okay in the morning and by dinner time, I could be wiped out and having to go to bed. And when I mean I get this horrible feeling that comes over me, and you have no energy, and I mean you can’t even hardly move one foot in front of the other. And if you sleep – because you have to, you think you have to lie down, even if it’s only for 20 or 30 minutes, just to get you refreshed, it doesn’t work. It’s not like a fatigue you can ever recover from; it’s a debilitating fatigue. What used to take me five minutes to do anything, can take me up to two to three hours now. It’s really frustrating.
And from somebody who had always been active and been the person that did everything for everybody, I really struggle with people having to do everyday things for me. Up to even just having a shower became impossible. I couldn’t get in my bath, I couldn’t lift my legs up, I used to get horrendous cramp in both thighs and get spasms, horrendous spasms. That was definitely the fibro and not my arthritis.
The sparkler burn feelings that I sometimes get, sometimes, are very painful. They’re one of the sorest things you can get. And luckily it doesn’t last for too long, but god, when it does, it is really, really, really painful.