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 🙂

The Many Variations of You

It’s been a while since I’ve posted anything – I think the reason for this is that there has been quite a lot going on since my last post. I’ve always been more of a retrospective writer as I find it hard to get my thoughts coherent and in writing when I’m in the midst of things, but I’ll try and work at that and be more consistent.

So what’s been happening? Well as you may be aware I was trialling the AIP diet for around six weeks over October/November time. Full disclosure; I had some slip-ups here and there with food, but nothing major. Over the course of that time I lost a stone in weight… this was never a goal of mine, but the weight loss could be due to a combination of reasons – the new meds, losing muscle mass from decreased exercise, and the AIP diet itself. Although I don’t feel that AIP is a miracle cure it certainly has proven to have some benefits – before starting my new eating regime I was experiencing bouts of what I describe as deep stomach aches and stomach cramps, one attack was so severe that I was writhing around on the bathroom floor and vomiting for half an hour before it subsided. I’d say the deep stomach aches lasted maybe another three weeks on and off once I started AIP but since then I haven’t experienced any, even over the Christmas period where I was allowing my self to indulge a lot more in food. Now, this is quite a big thing for me because I do struggle with my digestion and the fact that I was indulging over Christmas and, other than some bloating, I had no other major issues, inclines me to believe that AIP has done me some good. Did some healing start in my stomach while I was on it? I certainly wasn’t getting bloated and uncomfortable like normal so I’d like to think so. There were some negatives, other than the initial hunger, I did notice that my skin was a lot more spotty and oily to begin with, but changes in your diet can affect the skin and, as it only lasted a couple of weeks, I felt that it was a small price to pay in the grand scheme of things.

Unfortunately it wasn’t all positives over this time; I mentioned in my last blog that I was signed off from work for two weeks towards the end of November due to severe fatigue, vomiting, lightheadedness and new issues with my legs, meaning that I needed my pain medication increased. My GP felt these symptoms were a combination of issues; the vomiting and lightheadedness was likely caused by starting the Hydroxichloroquine, the intense aching in my legs was likely due to my low iron levels, however the pain I was experiencing in them and the increased pain in my hands was most likely to due a flare up of the autoimmune condition. So there was a lot to process. Not least the fact that this was the first time I had had to take time off directly because of my condition. Since then I have developed more stiffness and pain in my hips which is completely new. I recall a friend saying to me a while ago it’s good that you can still physically exercise because sometimes that’s just not an option. I entirely admit that I couldn’t grasp the concept that at some stage, for a period of time, I would struggle even to do gentle exercise. Don’t get me wrong, I’ve had periods of weeks where I’ve been ill and not able to do much, but I can always manage something gentle. Well I discovered that this wasn’t always going to be the case, there has been a period of around three months where I haven’t done any real exercise because my body physically would not allow me to do so. During this time I also started to come up in new rashes. Initially they began on my feet and chest, would disappear for a while then reappear in a slightly different place before covering most of my arm. The rashes themselves weren’t itchy but during this period I had the most intense itchy legs which would flare up mostly when I was trying to sleep. Of more concern to me though has been the issues I’ve encountered with my memory and concentration; I keep tripping over my words and forgetting what I am talking about mid way through, or just simply saying something completely nonsensical. Having read other blogs and through doing some internet research I know that “brain fog” is a known symptom of certain autoimmune conditions, so this appeases me slightly. Someone commented on one of my previous entries that when you encounter these symptoms you go through a process similar to grief, in that you grieve for the person that you used to be. I totally understand that this may sound dramatic to some of you reading this, but it absolutely resonated with me. I’ve always been fascinated with the concept of identity and the self and what this actually means, and at times, when I’ve been at my lowest I absolutely question who I am, when did I become this person? why can’t I get myself out of this feeling of uselessness? The biggest question for me that has arisen is if I wasn’t around any longer have I made a difference? I know as I write these down that they’re irrational thoughts but in the interest of being as open and honest as I can, I feel that they’re worth sharing and that once you come out of that dark place, and you will come through it, things become clearer and for me I begin to rationalise what has passed. The truth is as people we are constantly changing and evolving. I personally believe that there is no individual self but many selves and identities depending on where we are in our lives. 34 year old me is not the same as 20 year old me, so why should I expect 33 year old me to be the same as 32 year old me?

I don’t mean to make my life sound all doom and gloom because I’m very lucky to be able to say it isn’t at all, this stuff is just a small part of my life. True, unfortunately at times it has a large undesirable impact, but it’s just a small bend in a path I’m very grateful to be on. My next appointment at Guy’s is at the beginning of February and, although I have the normal anxiety, I’m really hoping we are on the path to finding some more answers. Right now I’m in a good place – I’ve started running, (well, I say running – plodding and walking is a more accurate description), and I’ve started doing yoga and strength work at home again, so hopefully the medication is beginning to have a positive affect. After taking some time off I’m back on a variation of the AIP diet but rather than cut out alcohol completely this time I’m just looking at limiting the amount I drink. In terms of food on a day to day basis I’ll be strict, but should we go out to eat or over friends then I’ll look at loosening it a bit. What I’ve learnt throughout this process so far is not to let it consume you, I need to be careful not to become obsessed with eating within very restrictive guidelines and cutting out things completely. Some discipline is great, but I think for me it’s more important to find the right balance and ensure I’m helping myself both physically and mentally. Right now I’m working on keeping myself motivated to get out and run when I get in from work rather than taking a nap. In my next blog I’ll be discussing where I am with my fitness levels and how I plan to progress.

AIP and the Devilishly Delicious Doughnut

I mentioned in my last post about the Autoimmune Protocol (AIP) diet that I’m following – before I talk more about my experience so far, I think I should state that this has not been recommended to me by any medical professional, I have done some research and decided it was a route I wanted to try. I’m neither recommending nor discounting it at this point.

Having experienced some frustration and delay with starting new medication I wanted to do everything that I could to help myself, so I began looking at how diet may impact autoimmune diseases. I found quite a lot of information stating that no one knows exactly what causes autoimmune diseases and that there isn’t anything dietary, other than normal healthy eating, that will assist. However, I also came across a lot of information on the AIP diet, and how it’s believed that autoimmune diseases begin in the gut; basically bad bacteria is leaking through the gut lining and essentially poisoning the body. The purpose of the diet is to exclude a lot of foods, which could be reactionary or causing inflammation, for a set period of time and then gradually start to reintroduce food groups and see if you can identify anything which increases symptoms. It’s basically an extreme version of the Paleo diet and it essentially consists of meat, vegetables, and lots and lots of coconut based foods. When I first looked at the list of foods that are not allowed I was horrified! I have a Mediterranean background, and like all good Mediterraneans my family and I like our carbs, not to mention the fact that pizza is my absolute favourite food, how the hell would I survive!? Well, I’d say for around the first four days I was a complete food zombie, it was literally all I could think about, and I’m pretty sure it’s all I spoke about (Carys has since confirmed that it was indeed all I spoke about). Walking around the supermarket my senses were far more intune to the smell of things like fresh bread, it would literally make me salivate, I liken it to how a vampire must feel when they’re bloodthirsty. Still it made a change from constantly thinking about pain. Another issue I encountered during the first week was a headache around the back of my head whenever I moved suddenly, it would pound for a few seconds then ease. I think this may have been the coffee withdrawal, I’ve moved over to green and herbal teas but I don’t think the caffeine in the green tea is akin to the caffeine that was in the ridiculous amounts of coffee I would drink in a day.

After about four days my body and my mind started to get used to the new food and drink situation and I actually settled into it quite easily. I was definitely in a better place mentally as I felt I had a semblance of control. My main concern was how to make sure that I was taking on enough carbs, especially as when I’m able I like to workout and was starting to run again after a long time off. After some research I found that foods like Plantain, Cassava Root and sweet potatoes (normal potatoes aren’t allowed as they’re in the nightshade family) are high In carbohydrates. I adore sweet potatoes and Carys makes me the best sweet potato roasties, I could literally eat them everyday. So these have now become a staple dietary necessity in our household. We have an interesting green Okra sitting in the kitchen waiting to be prepared, at present neither Carys or I have a clue what to do with it but exploring new foods and dishes is definitely a benefit. So, after the initial hunger had passed and I got used to it all was going well, that is until a colleague and friend of mine presented me with an absolutely huge vegan doughnut. Now you have to understand, it would have been rude for me to refuse this, as it was bought as a thank you and I know that these doughnuts are not exactly cheap, not to mention I was salivating more than my husky drools when presented with a meaty sausage. So I unapologetically but very gratefully devoured it in a matter of seconds, it was delicious, alas it was not AIP compliant but I think totally worth it, after all we all deserve a little treat now and then. As it happened my stomach wasn’t too bad I just felt very full for a good few hours after eating the offending doughnut but not overly bloated, so no real harm done.

I’ve been doing AIP now for over three weeks, to be honest it’s hard to tell at the minute if it’s having a positive effect or not. Unfortunately this last week I’ve not been great at all; a lot of pain, headaches, some vomiting and general exhaustion has forced me to take some time off from work and right now it doesn’t seem to be getting any better. My iron tablets have been upped, which are very harsh on my stomach anyway, and my doctor believes my symptoms are a combination of being very anaemic, reacting to the Hydroxichloroquine, and general autoimmune issues. This is frustrating, particularly as I really felt I was getting back on track and had begun running again after a long break. As it stands I’m having to take some time out from everything again, but I need to get used to letting my body properly rest, no good pushing through and making myself worse. On a positive note I’m hopeful that this is just an interim and that once my iron levels increase and my body gets used to the meds, I’ll properly turn that corner and, with any luck, the Hydroxichloroquine will work well and I’ll be much more like myself in no time. In terms of AIP I feel that it is doing me good, I’m not really missing the alcohol at all, I think if I’m completely honest whenever I had a rest day the following day I felt like I needed to have a drink, and although at the time it does help dull the pain the next day it would only be increased. That’s not to say I won’t drink again; when we meet friends and family in December I will allow myself a drink or two if I feel like it, but will be glad to break the habit of having a drink just because I’m not working the next day. I also won’t be quite so strict with the diet through December as it would make it impossible to eat out, and besides the idea of all of this is to improve my quality of life so there’s no point being too restrictive all of the time, life is for living after-all.

Autoimmune Disease – My Journey to a Diagnosis.

As this is my first blog post I thought I’d start with some background information about myself and how I eventually received a part diagnosis. I’ve been struggling with a variety of health issues for five or so years now. It all began with relatively mild stiffness and pain in my right hand, I then started experiencing pain in my right foot joint and things just escalated from there really; increasing stabbing pains in my fingers (so much so it was waking me up) muscle spasms in my legs, ribs and chest, severe fatigue, stomach issues….the list goes on. I originally got a hospital appointment with a rheumatologist who told me that at the minute there wasn’t anything that could be done as they weren’t sure what was causing it and that it may just disappear. Now at this point it was really only the pain in my hand and it was semi-bearable so I was relieved, and I genuinely thought it would just disappear. Unfortunately that wasn’t the case and things rapidly deteriorated over the next year. I was referred back to the same hospital, had another initial checkup and some blood tests, and then….nothing. I couldn’t get a follow up appointment for about six months and then I was getting several letters pushing appointments back further. By this point I was really struggling, so I asked my GP to be seen by another hospital and I was referred to Kingston hospital where they ruled out arthritis but couldn’t be sure if anything else was going on; my ANA test was consistently positive however the other tests they performed were showing as negative.

This was back in May this year and by this point I was struggling. I had managed to run Nuclear OCR but I had to cut down from the 12k to the 7km and my recovery time was disproportionate to the event. It was after Nuclear that I had to sit down and seriously think if I was doing the right thing for my body. If I was truly honest with myself I knew I shouldn’t have run, I’d been struggling with my chest for a while leading up to the event and I was feeling pretty pants nearly all the time. OCR and rolling around in the mud is a great love of mine and the thought of leaving it behind, even temporarily was not a happy one. However, I’m as stubborn as hell, I don’t like to beaten and I certainly don’t like to admit that I’m struggling, so the fact that I was even contemplating taking a break was proof enough that it needed to be done. In hindsight things had been going down hill exercise wise for around a year – I was struggling to run the distances I enjoyed and despite putting all the effort I could muster I just wasn’t seeing any results. So it was after Nuclear Rush that I made the difficult, although somewhat sensible decision to take a break from OCR. I think this summer was probably my lowest point so far, I was facing a new battle that I fortunately hadn’t really had to tackle before and that was my mental health. I started to suffer bouts of low mood and feeling very anxious, the constant pain and not seeming to get anywhere medically was extremely frustrating. After a particularly hard run of shifts at work and really struggling to walk the mile home from the tube station, I finally limped into the doctors and basically admitted that I wasn’t coping and I really needed help. I was started on a course of Amitriptyline and regular paracetamol, the doctor also advised I write to Guys Hospital, where I had now been referred on for a second opinion as like most autoimmune conditions my symptoms and test result weren’t easy to diagnose, to try and speed up an appointment. I was finally seen at Guys in September of this year and I have to say they were brilliant. Despite running over an hour late they were very patient with me and it was the first hospital where I felt they were really listening to my concerns, and at no point did he dismiss any of my symptoms. I was diagnosed with an Unspecified autoimmune condition, and told that I would be started on Hydroxichloroquine but I would need to go back to Kingston to receive the tablets.

I naively thought that receiving a diagnosis, even just a partial one, would offer some relief; it wasn’t all in my head, it wasn’t just normal tiredness and “getting old” as people kept telling me. I knew for years that something wasn’t right and I knew that more and more recently I was struggling with basic everyday things, like getting out of bed, going to work, walking the dogs etc. However, the relief I thought I’d feel wasn’t there. In fact I felt kinda weird, I guess there was a little part of me that hoped someone was going to turn around and say “Oh I know what this is, not to worry we can have this sorted in no time” Unfortunately that wasn’t to be the case. In my head I was changing, I wasn’t the person I used to be and I couldn’t do the things I wanted to, I had gone from someone who hated taking tablets to taking daily painkillers and supplements and now more daily medication was on the cards. More and more frequently I was hearing the words “you look tired” ” you should rest more” “what’s wrong, you don’t seem yourself” this really got to me because it meant my cloaking device was slipping, I didn’t want people to notice anything, I didn’t want to admit that I was struggling and the shift work was playing havoc on my fatigued body, I just wanted to carry on as normal. I was also not used to all this negativity swimming around my head. In short I wasn’t in a good place, but I don’t think I wanted to admit that to myself. Sometimes it takes someone close to you to point it out and let you know they’re keeping an eye on you, I’m very fortunate to have that person to keep an eye on me and point out when I may be veering off track.

Trying to get hold of my new meds was another rollercoaster of frustrations. For some unknown reason I had been discharged from Kingston, I couldn’t get hold of anyone to talk to at Guys about receiving the meds. Weeks of messages and being told someone would call me back was not helping my anxiety, so I decided to do some research and find out if there was anything that I could do to help improve my situation. That was when I came across the Autoimmune Protocol diet or AIP for short. At first glance the diet looks terrifying however, having read a lot about autoimmune issues starting in the gut I thought it would be worth a try. The AIP diet is extremely restrictive, no alcohol, no beans (including coffee :-0 ) no legumes, no nightshades, no gluten no this no that the list goes on. The word diet is also not one that sits happily within my vocabulary, of course diet refers simply to what we eat but the word holds so many negative connotations for me and I see so many people struggling with fad diets, losing weight and then piling it all back on. However, as this was for medical purposes and not a way to lose weight for me I thought it would be worth a go. My next blog post will have more about the AIP diet but what I will say is that I finally felt as though I was in control, starting AIP helped me feel that I was doing something for my body, helping myself, rather than just trying to push through with high impact exercising and becoming frustrated when I needed to rest. This marked a real turning point for me and, although it’s only been two weeks since I started AIP, I feel I’ve turned a real corner mentally. My focus has changed, I’ve started running again , albeit very slowly, And I’ve quit the gym in a bid to focus on more OCR based training and get back on course next year. I have also finally started on the Hydroxichloriquine and so far, after a week of daily tablets, have experienced no side effects.

I’ve learnt a lot from this process and no doubt I’m going to continue to learn and make mistakes. Also, in case it isn’t clear, if at any point it seems I’ve been negative towards our National Health Service throughout this post please know that that is not my intention. Autoimmune diseases are notoriously hard to diagnose, even now I still don’t have a clear diagnosis, but I am grateful for all the help I have received and for every medical professional who has seen me and not given up. When you’re in constant pain, and you know that something is not right, it can be extremely frustrating and upsetting, for yourself and for those around you. All I can say is, if you know there is something wrong then persevere, make sure you get the help you need. It may take some time and will most likely be very frustrating, but it will be worth it. In my next post I’ll be looking more at the AIP diet, what it involves how I get my carbs, and how exercise, yoga and dogs, keep me semi sane 🙂