Melanie

Brief Outline:

Melanie was diagnosed with fibromyalgia in 2012 after experiencing pain for several years. She has found ways to adapt to and manage everyday life better after going to a rehabilitation centre and seeing occupational therapists from her local council.

Background:

Melanie lives with her wife and young son. She is currently unable to work due to her disability. Ethnicity: White British

More about me...

Melanie started to develop pain which gradually got worse. Initially, she thought that she had arthritis but she was diagnosed with fibromyalgia in 2012 after several visits to the pain clinic. She feels it is just a ‘label’ and has never agreed with the diagnosis. Melanie believes she should have received more thorough investigations to establish the cause of her pain.

Melanie has pain in different parts of her body, which can vary from day to day, and describes herself as forgetful. She has experienced depression and anxiety due to a traumatic event in the past, and also has other health problems.

Melanie has tried different treatments over the years. She found that hydrotherapy eased her pain. She also benefitted from going to a rehabilitation centre, which helped her adapt to everyday tasks. Melanie attended a six-week pain management programme, but did not find this helpful as she could not participate in all the activities due to the set up of the programme. She also feels that she has not received appropriate mental health support. Melanie has been prescribed medication for pain relief and depression. Although she feels that these medications do not really work and is concerned about their long-term impact, she is concerned about how she would cope without it.

When Melanie was initially diagnosed with fibromyalgia, she had never heard of the condition. She looked up information on the internet, which suggested that the pain is “in your head”. Melanie feels that healthcare professionals and the public can be judgemental; she has experienced people questioning why she needs a wheelchair, and has found her GP to be unsympathetic in the past. Melanie emphasises that it is important to feel understood by healthcare professionals; not being believed that her pain is real has made her reluctant to open up. Although she feels she had to fight for most of the support she has received, Melanie has found her local council and occupational therapists very helpful. They provided various household adaptations, such as a fitted bathroom, bed and wheelchair. This support has enabled Melanie to manage everyday life better.

Fibromyalgia has negatively affected Melanie’s life in many ways. She has had to give up her paramedic training and her work for the ambulance service. She is restricted in her mobility and needs to use a wheelchair most of the time. She cannot cook for her family anymore, something she previously enjoyed. Melanie finds it difficult being unable to support her wife more with household chores and looking after their young son. Parenting has been a challenge for Melanie, though she tries to be a “normal mother” as best as she can.

Trying to stick to a routine enables Melanie to cope better with fibromyalgia, especially her memory difficulties. She enjoys the activities she can do with her son. When she is able, she tries to relax with crocheting and colouring. Gaming also helps her to switch off and allows her to do things she cannot do in real life, like running. Melanie facilitates a Facebook group for fibromyalgia and regularly connects with group members.

She advises people with fibromyalgia to “be kind to yourself, don’t beat yourself up, relax when you can relax and ignore those thoughts in your head because they’re just enemies.”

Melanie feels that fibromyalgia is just a ‘label’ and has never agreed with her diagnosis.

I can’t really remember that far because I think I was, I was so hazy about it because I just, “What the hell is fibromyalgia?” I don’t remember what she said to me about that. I went home and I researched it, that’s how I find out what fibro was, and then I felt offended after I read about fibro on the internet and I thought, “Fair enough, she must think I’m an hypochondriac”. Where else, what is fibro? Fibromyalgia is a label that you put on somebody who has chronic pain and no physical appearance to why it’s happening, so that’s how you’re left, you’ve got to deal with that.

So how did you feel about you know, this whole kind of diagnostic process?

I thought it was a copout, I thought they didn’t want to investigate fully what was going on with me because they just gave me this label and treated me accordingly, which meant upping my pain relief and giving me amitriptyline. I was also on gabapentin as well at some point, but the GP in this area said it’s not good for me to be on gabapentin so I was taken off that, and I was fine without that.

So the pain clinic consultant diagnosed you …

They diagnosed and discharge you.

And back to the GP?

Yeah.

So what did the GP think about that?

Nothing, just happy to prescribe me with the pain relief, that’s all, they don’t talk about it, they just send you home with your prescription and let you get on with it.

So there was no kind of discussion about …

No.

… that kind of, okay.

So she was surprised when I turned up in a wheelchair one day and, you could tell by the look on her face she was judging me, making herself opinions that, “Why the hell’s she in that wheelchair you know, there’s nothing wrong with her?” you could tell that’s what they were thinking.

How did you, you know, that process and then you know, what you just described you know, how did that make you feel you know, being, referred on and being diagnosed, back to the GP and then really feeling like, “They’re looking at me”, how does that make you feel?

Well you’re just made to feel like you’re lying, like you’re making this thing up, that you’re searching for sympathy or something, I don’t know, I don’t know. I don’t really get, gain anything from saying that I’m in all this pain, it doesn’t make me any better off.

So did you then you know, after that and you got the prescription, did you feel like, “I’m agreeing, okay, it makes sense”, or “Actually I don’t really agree with this diagnosis”?

I’ve never agreed with the diagnosis, I just settled with it, I’ve always said I’ve got arthritis and I still believe I do. I feel like the x-rays that they took of my knees; I don’t believe that they were normal. You put your hand on my knee and I can stretch my leg out and you’ll feel everything crunch, it really isn’t fibromyalgia, not, I’m certain of it.

They, that’s what I said, they just put a label on it and left you to deal with it because they don’t want to find out what’s going on, they just want to let you deal with the symptoms of it.

Melanie has tried different treatments over the years. She found that hydrotherapy eased her pain.

I did get given a water therapy, hydrotherapy at the hospital, and that was really good. Unfortunately, driving to the hospital creates the barrier because the pain relief has to be reduced, and then I’m doing an activity, that brings on more pain, but I really enjoyed the hydrotherapy, it was good.

In regards to the physical pain, I mean I’ve found that just my hydrotherapy is the one thing that helps. I’ve learnt by myself that if you use stuff like Epsom salts it can help, but I’ve had to find that out myself. If there was healthcare professionals that could give you lifestyle tips, that would probably help people live a more pain free life, because there’s also a lot of stigmatism on if you exercise it makes the pain less, but when I exercise it hurts, and when it hurts I don’t try because I know it’s going to hurt. But people are saying that you just have to keep trying and it helps, but how can you when you’re in that circle?

Although Melanie feels her medications don’t really work, she’s worried about how she would cope without it.

And, it’s very hard to tell the doctors exactly how you feel because there’s no support, there’s no mental support at all. I was advised to be on cognitive behaviour therapy, but I never got given that. Instead I am on, an antidepressant called fluoxetine, and I’m also on another one that is combined for pain relief, which is amitriptyline.

None of these really work, so you are left with how much pain would I be in if I didn’t take these things, and how would my quality of life be affected? I just don’t know and I’m scared to find out. So I take the pills and I hope that I’m doing the right thing and I’m, I hope it doesn’t shorten my life too much because I want to be there for [my son]. I want to walk into school and see him graduate of course. He’s just my little miracle, so he keeps me going.

Trying to stick to a routine enables Melanie to cope better with fibromyalgia, especially her memory difficulties.

And I think some, some guidance of some sort that can give you a bit of structure as well, and I think routine is important for the fibro fog. Since I’ve had [my son], I’ve noticed that routine has helped a lot, because I know what happens, because I’m so forgetful, I even forget my medicines, I have to have timers for that and, since [my son], he is your timer [laughs] he really is, and he keeps you in that routine.

I mean normally I would’ve like, I wouldn’t have an alarm set for what time I wake up, I just drift in and out of sleep throughout the night and most of the morning, but because I’ve got [my son], I don’t want to miss out on him but I want to make sure I have enough sleep that I can be around him. So I routinely wake up at 10.00 and routinely go to bed at 9.30, so that helps.

And when I go to bed I don’t just go to bed and sleep, I will read a book or I’ll watch a TV programme and, so it’s sort of relaxing me into my sleep because it can be quite painful, especially when you’ve woken up in the middle of the night in pain. And then again, I do the reset thing, I watch a programme or I read for an hour and then I go back to sleep again, and that seems to work for me. So I really do think routine’s a lot better.

Melanie had to give up her paramedic training and her work for the ambulance service.

Just before the pain started to affect me I was working as a patient transport, person and training to be a paramedic at the time, and the pain got too much and stress increased as well, and I think the stress increased the pain. Before long I wasn’t coping at work so I ended up losing my job because my operator, she noticed that I was not coping very well emotionally so she had to let me go, and that was very difficult to hear.

So thinking about another job I knew was pointless, but I was mourning the loss of the job that I left behind because I had some really, really good days there, really good, some of the rescues [laughs] they could you know, I could talk forever about what I enjoyed about that job, it was so rewarding.

So when I think about that job, I think of what I lost and what I could’ve been, and even now I think if I was able to go to work what could I do? Could I, where would I have been if I’d have carried on being able to work with the Ambulance Service?

Playing computer games helps Melanie to switch off and allows her to do things she cannot do in real life, like running.

I sit here all day most of the time. I try and do a little bit of console gaming, that takes my mind off the pain and, it makes me feel like I can do something that I can’t do in real life, like I can run around, I can fight, I can jump, I can fly, I can do whatever I want, I’m nothing, I’m invincible. And, so it’s nice to switch off from reality for that little while, and I can spend a lot of time doing it because it’s so therapeutical for me, but it’s so annoying for my partner so obviously I have to balance it out.

So to make things a little bit normal for her I like to do some colouring, she just sees it’s just colouring [laughs] like a little kid, but, for me it’s just a way of focusing my mind on something else.

If I’m not doing, I’ve, like I’ve always got to be doing something, if I’m not doing one thing I’ve got to do another thing, and I think that’s the main thing about it, because if I’m given too much time to dwell on it I start feeling sorry for myself, that’s, that can’t happen, it just can’t.