Autoimmune or Fibromyalgia? My Ongoing Journey to a Diagnosis.

A few weeks ago I had a great day, I was absolutely buzzing after pulling out a 5k run from nowhere, only stoping to clear up after my dog and tie my shoelaces. I went out on that run with no expectations, I just wanted to get out and see how we went, but in the end I was even pleased with the 32 mins completion time – given that my PB is 27mins something I felt ecstatic that finally I was heading in the right direction for a sub 30mins once more. With all of this adrenaline coursing through my veins and clearly on the way to recovery I also booked in Rocket Race OCR for April, I was finally going to get back in the mud. As has happened before, and no doubt will again, I was premature in my jubilation and two days later ended up in the Soho walk in centre on a nebuliser as I could not get control of my breathing. Thankfully it all appeared to be caused by irritation in the upper respiratory area rather than in my lungs, but I left the centre with strict instructions to up my Symbicort inhalers and call an ambulance should my breathing deteriorate overnight, as well as no running outside in the cold weather. After a few days I was still struggling with constant coughing and placed on a course of antibiotics and told to take 10puffs of my Ventalin a day.

The above paragraph was written around six weeks ago, when the plan was going to be much more regular with my blog updates, as you probably can tell that’s as far as I had got with it up until now. I’m pleased to say that I am running and exercising again but doing my best to build it up gradually – much easier said than done, and I know those of you who know me will understand 😂 In terms of what’s happening health wise I’m very fortunate to have been assigned a really lovely rheumatologist who has taken a lot of time to sit down with me listen, and explain things. She believes that I might not have an autoimmune disorder or, if I do, it maybe that it’s very mild and won’t require ongoing treatment, instead she believes that it may be fibromyalgia. However, as I am displaying some symptoms of an autoimmune issue and I’m in a really grey area, she wants to be as sure as she possibly can be, so it’s a case of ruling everything out. I had a chest X – Ray which was clear and I’m due in for a lung function test and hip MRI. The Hydroxichloroquine doesn’t appear to be helping so I’m also being weaned off of these, which is good. If all the tests come back clear then it will be a case of staying under Guy’s for two years to make sure nothing develops – which could be an indication of ongoing autoimmune issues, and then hopefully, fingers firmly crossed, discharged. I’m looking on this all very positively, Fibromyalgia is debilitating and extremely painful but ultimately it’s not dangerous.

In terms of my mental health I think I’ve really turned a corner In how I look at and deal with things. I’ve began to accept that things change and I have to change with them, there’s no point pushing and pushing and then ending up not being able to do anything for days on end because I physically can’t, it’s a case of putting things into perspective, realising what I can and what I cannot change and basically picking the battles to fight and those to simply walk away from. That being said I’m sure I will continue to make mistakes and there will be days where mentally I’m not coping so well, but there’s never a miracle cure to these things. I actually mentioned the issues I can have with anxiety the last time I saw my rheumatologist, I took her advice to self refer to Richmond wellbeing centre and have a telephone consultation next week. I’d be lying if I said I wasn’t a bit sceptical about group CBT, which will likely be the suggested outcome, but at the same time it’s worth giving it a go. Stubbornness is definitely a trait I harbour and I will convince myself that I’m coping fine without professional assistance ,when in fact perhaps this isn’t the case. I’d be the first person to encourage someone to get help with their mental health, and maybe it’s time that I take my own advice. I will write a separate blog post with an update on how that goes.

Rocket Race is just over a month away, I’m excited and terrified! I’m scared of being frustrated at myself if I can’t do the obstacles I used to be able to do, or what if I don’t even make it round the course!? Deep down I know that none of this matters, and I plan to just get out there and some fun, do what I can and if I can’t do something then really, who cares? In the grand scheme of things what does it matter? Plus I’m taking a newbie, and it’s always great fun to take someone on their first event. There will most definitely be a separate blog post on this after the event, complete with pictures, so I’ll let you know how we all get on.

In terms of diet, I’m doing a variation of the AIP diet at the minute, but I’m using it more as a detox and cleanse for a few weeks at a time. This seems to work well and, although I have had some issues with my stomach, I’ve not experienced any of the excruciating stomach cramps, so that’s a big positive.

That’s really it at the minute, I know I’ve said it before and most likely I’ll say it again but I really will try to blog more often 🙂