Fibromyalgia and the future

lilminx

Hey all

Having experienced bouts of pain and lack of mobility since my teens, I recently was encouraged by a new GP in the practice to tackle the issue of a diagnosis. Without going into my complete history, I woke up the morning of my Junior Cert results with major swelling of my knee joints and my back locked. It got so bad that I used a wheelchair for a number of weeks while I was a lab rat in hospital. Lupus, Auto-Immune and number of other diagnoses were discussed until the final opinion was Juvenile Arthritis *not rheumatoid as not showing up in blood*

What followed was a number of hospital stays over the next few years while they tried every sort of test to figure out what was wrong and I got sick of the arsing around and discharged myself from hospital. They gave a diagnosis of fibromyalgia, but to be honest I thought it was a crock of the proverbial and disregarded it as such.

A number of years after that, having gone from pain killer to pain killer, steroids, anti-inflammatories etc, finally zydol for 2 years, I took myself off every drug and tried to fight it myself. I was convinced it was all in my head and if I just had the right attitude I'd be okay. Now I suppose having a number of years without the amount of pain I had up to that point been living with, I was happy with just muddling along.

Fast forward to this year. Having worked for 8 years to get what I thought was my dream job, I felt myself increasingly stressed and vulnerable to chest infections, then the pain started getting worse, then the insomnia, nausea and of course the fatigue. Then the depression and lack of motivation. I was out sick for a few weeks, back to work, out sick again, back to work. I couldn't cope with work and after a particularly stressful month, resigned.

The following week, my GP having gone through the whole rigmaroll again, diagnosed fibromyalgia. And now it's nearly 4 months later and i'm still out sick. My GP has been great, supportive, giving me lots of information and advice and has been patient with me as I try and cope with all that the diagnosis entails.

I worked with people with disabilities for 8 years and now I find myself in the same vulnerable place I found them. I'm finding it hard to cope. I'm finding it hard to accept the diagnosis and I'm finding it hard to explain to my friends ad family. My parents are amazing, don't get me wrong - and I know it's partly my fault they don't understand - I don't want to worry them, so I downplay to a certain extent, but that was when I thought i'd be off work for a few weeks.

I'm bored. I want to go back to work - although I know I couldn't possibly do the same as before. My GP today told me I wasn't ready to go back to work. Full time or part time. She's encouraging me to go for CBT. Is this any good? Has anyone experienced this? Any advice?

I'm just tired of thinking it's all in my head. I'm tired of feeling useless. I'm tired of staring at the ceiling til 5am some days and others not being able to get out of bed til 3pm.

Where do I go from here?

I'm sorry this is so long and I'm not sure it even makes sense.

dsg

Hi. I noticed nobody replied to you so just wanted to let you know at least someone has read your post! I'm currently trying to get a diagnosis myself. I'm convinced i have fibromyalgia but my own gp is quite happy to ignore me and tell me its all in my head. How can so much pain and such a large number of physical symptoms be in my head? Anyway there are some very knowledgeable and helpful people on here so i'm sure someone will point you in the right direction. Have you done some research yourself in the meantime? It's a chronic condition but there's lots you can do to help yourself so take this time off work as an opportunity to investigate further and take control of whatever you can, the likes of diet and exercise etc. I'll get back to you with any info i manage to gather but for starters have a look at www.fmnetnews.com at their frequently asked questions.

imokyrok

Hi lilminx

I've just read your post today and thought you seem pretty down. I've been there - when I became too ill with FMS to work I really got depressed. It wasn't so much boredom as I was just in too much pain to care about that but I really had a hard time coping with the loss of identity, self esteem my job gave me. Oddly enough I worked in the disability field also!

It took some time before family and friends came aroubd and were supportive and that was hard too. I'd advise you not to hide how you are feeling from them and to educate them as much as possible about fibromyalgia - you will need their support and they need to realise that FMS is a life-altering illness. That last statement probably makes your heart sink , but if you definitely have FMS then learning to live with it instead of trying to live in spite of it is a set of coping skills which are better coming to terms with sooner than later. I did it the hard way and pushed and pushed against it. It just made things worse.

CBT can be very useful and it's one of the many things I've tried, however it's difficult to find someone with the skills in both CBT and coping with longterm illness. My therapist had the former but not the latter. Still I would say go ahead if you can find someone who will at least will read up on FMS and long term illness - tbh just having someone to talk to outside of the familiy was great. FMS is so isolating The best intervention I've had did have a cbt element to it - it was the pain managment programme in the Mater. It look place weekly for two hours over 10 weeks and I'd highly recommend it for learning coping skills and gaining an understanding of chronic pain. Hope that's useful.