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Not really sure if I should go back for a diagnosis?

(2 Posts)
RattieofCatan Mon 15-Jun-15 19:54:05

I'm pretty certain that I have a mild form of fibromyalgia and that I have done for 16 years (since I was 10). I was fobbed off by doctors for years even before I found a name for it (and have been very careful not to name it in case I get fobbed off even more for daring to google). It's all in my head, none of the symptoms are related, I'm too young for XYZ, bladder issues are because I need to train my bladder, there's no such thing as a "foggy" head where you feel between tipsy and drunk, etc etc.

I finally found a good doctor last year who took me seriously and would refer me, but she needed three sets of blood tests done first and they could never get done within 12 weeks of each other and she then moved practice so I gave up again when the next doctor told me that we had to rule out coeliac by me eating gluten again for a month and retesting. A few years ago somebody suggesting trialling not having gluten as my symptoms were similar to some coeliac ones and she'd heard that people with problems like mine can benefit from it. I was desperate and doctors weren't helping so I tried that and the fog went from a daily thing to something that happens rarely, usually after I've eaten gluten when out for a meal with friends, so I know it's a trigger. I decided that I categorically could not afford for the fog to come back then as I was under a lot of stress at work and struggling at the time.

Mum has said for a while that she'll be able to pay for me to get the referral to the CFS clinic done privately when I had time. Now I have got the time and energy and I'm wondering if I should even bother now? It's relatively under control at the moment.

I now work part time and have done since September, I do extra work but it's always on my terms and I can control how much extra I do to factor in busy weeks or times where I'm not feeling great. Through not eating gluten I don't get the fog so much, rarely get it in fact. The bladder urgency issue is much, much better and controlled than it was. My bowels are also much better and whilst the pain is getting worse and spreading, it's not horrendous and is manageable. I am careful about sticking to routines sleep-wise which manages the fatigue along with working much less and I can now go to the gym and exercise gently/swim which is helping with energy levels and joints.

I'm worried that if I don't get a diagnosis now, I won't be believed if I need to get one later. Also, working part-time means that we do sometimes struggle for money so if I got worse and had to reduce my hours anymore we'd need financial help. However, I want to foster in the nearish future as long as my health stays at this plateaued state (respite only, not full time or very regularly) and I know that they would be reluctant if I have a diagnosis on record. I potentially would look into adopting one day which, again, could be an issue.

RattieofCatan Tue 16-Jun-15 07:22:09

Bump? Has a diagnosis made life easier or harder for you with "milder" cases?

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