Turning 29 & Reflecting On The Past Year With Fibromyalgia & Chronic Fatigue

Yesterday I turned 29, though admittedly I’m a little bit in denial about the fact I’m now into the last year of my twenties! I always get reflective around my birthday and this year it’s really made me think about my health; how far I’ve come and what I still want to achieve. It’s been a while since I’ve really sat down and written about me, so I thought this would be a good time to do just that– especially as I know I have new followers who might not know my story. So grab a cuppa and let’s have a catch up. I hope what I write inspires you to believe in the possibility that things can get better for you too.

This time last year

It actually amazes me to think about where I was this time last year. For my 28th birthday I celebrated by visiting the Enchanted Forest. I had to hire a wheelchair to enable me to go. I had literally hit a wall a few days earlier; one day I was at work feeling like I was progressing in the right direction, the next I couldn’t get out of bed. It should have come as no surprise really, as it had happened to me in the July and all I did from that point was push and push to try and get back to normal. What I inevitably did was make the situation a whole lot worse and the crash I experienced in October left my health in an even worse state. I was completely in denial at that point though and played down how I was feeling a lot of the time.

The truth was I was really ill– I was completely exhausted and felt so unwell– and it hasn’t been until I’ve started to feel better that I’ve really appreciated how sick I was. The level of exhaustion I felt at times is like nothing I have ever experienced in my life. I find myself thinking back to that time and questioning how I even coped. I guess the answer is you just do.

I was desperate to get better and get back to work. I was told there was nothing more I could do. The sad thing, is that I found myself starting to accept and believe that. I knew there was nothing more my GP could offer me and I felt as though I had tried everything else to no avail. I reasoned that perhaps it was time to stop fighting and that this was just how it was going to be. I was sick and I had an illness that had seemingly progressed to a debilitating level and perhaps there was just no way back up. I now look back and feel so saddened by that thought. It was a life no one should have to lead and unfortunately I was far from being alone in what I was experiencing. I connected with so many amazing and incredibly supportive people online who were also suffering. At that stage I needed some help with self-care and spent every second of the day feeling truly awful. The only two people who really knew how bad things got for me were my husband and my mum. I continued to downplay things to everyone else.

Yet, despite all of this, I wasn’t depressed. I was actually in good spirits and coped with it all. I have no idea where I found the strength to be like. I think I have my mum, husband, dad, close friends and those lovely individuals I “met” online to thank for that. Don’t get me wrong, there were times when I got upset and frustrated. But overall, I found myself feeling happy and content in myself. All I can really say is that happiness was the choice I made for myself, helped along by the people in my life. At the end of the day I guess I didn’t want to be miserable.

The impact of the book “Suffered Long Enough”

In the November an email popped into my inbox. I was asked if I would like to review a book called “Suffered Long Enough” that was written by a doctor in the U.S. called Dr. William Rawls. In all honesty, the idea of reading a book about fibromyalgia was the last thing I wanted to do. However, I felt excited that this person had read my blog and subsequently reached out to me. I therefore accepted and went on to review the book. I was filled with hope and positivity after reading that book but kept it in check with a healthy dose of scepticism.

Being an incredibly generous man, Dr. Rawls followed up my review by speaking with me over Skype and he offered some much needed advise and encouragement. I felt inspired by his words and I decided I had nothing to lose by trying out his protocol. I took to Amazon and ordered some of the herbs he suggested.

The first couple of weeks were admittedly difficult. I had a herx reaction and I believe I also experienced sugar withdrawals. I wrote about my first month on the herbal protocol here. Despite feeling worse in the beginning, I knew deep down that this was the right thing for me to do and I persisted. I reached out to Dr. Rawls due to the difficulties I was having and he suggested that I add homemade ginger tea to my daily regime. I did just that and really felt the benefit.

Slowly things started to pick up and improve. I began to feel stronger and doing things started to become a little easier. My husband and mum started commenting that I was looking and moving much better. I was starting to feel really positive about this new protocol. So much so that I decided I wanted to stop taking the drug I was on at the time (which was gabapentin). I didn’t really feel like it agreed well with me and I guess my intuition knew I would be better off without it.

The process of coming off gabapentin was horrible. With each decrease in dose my pain skyrocketed. My sleep was disrupted and the numbness and tingling returned in my left leg. However, I also started to feel more with it, less foggy (my memories started coming back), less nauseous and I also felt less anxious– which I didn’t even realise I was feeling until I stopped the drug. I can thankfully say I am glad I gave it up and I’m now far better off without it than I ever was on it.

A new year and a new plan

In the beginning of January of this year I decided to invest in the Vital Plan Restore program. The Restore program is the herbal protocol that was designed to follow what Dr. Rawls outlined in his book. After my first month of taking herbal therapies I was convinced that they were key in helping me to recover. Purchasing the Restore program simplified things and allowed me to take a greater number herbs, which would have been too costly to buy individually.

Once I started the Restore program I steadily continued to feel better with each day. Then I had my first setback in the middle of January– I woke up and felt like I had been hit by a bus. I remember being so upset. It turned out to be caused by a cold virus and it had knocked me for six. I worried that the virus would leave me feeling ill for weeks (going by past experience). However, I overcame it quicker than I expected and this setback made me reflect and realise just how far I had come in such as short space of time.

Once I was over that virus (which, touch wood, has been my one and only one of the year) things continued to improve. I started to be able to do simple things– such as sitting up at my computer– that I hadn’t been able to do before. I began to feel well at rest and everyday things, such as getting out of bed, getting washed and dressed and walking up the stairs became less of an issue. Hell, I even hoovered my living room one day!!

My pain also improved and my allodynia reduced. I can’t tell you how amazing it is to go from a pain level of 6/7 every single day down to around a 2/3. It’s something I am incredibly thankful for. I have no idea how I even managed to function when I was in such high levels of pain previously. Other improvements were noted too; the pins and needles I experienced began to lessen and my mental fatigue also improved.

Returning to work and the subsequent setback

I felt more well than I had in a long, long time. So much so that I made the decision to try a phased return to work. I was desperate to get back to work and so worried about losing my job that– with hindsight– I got too far ahead of myself. I reasoned that a slow phased return would be manageable and that I could slowly build up what I was capable of doing. Unfortunately I didn’t realise at that point that I still had a long road ahead of me in terms of my recovery.

I lasted two 3 hour shifts at work where I did nothing but sedentary work. To be honest I was beat before I even started– the commute was enough to do me in. Sadly returning to work so soon caused a big setback. I felt really low at that point. It was hard accepting that I wasn’t ready to return to work.

My pain was off the scale again after this, and the fatigue was awful. It wasn’t as bad as the relapse in the previous October but it was still hard to take.

Despite how I was feeling, I think I was still partly in denial. I remember forcing myself to visit a spa with my mum the following week. I probably shouldn’t have gone but it had been booked for a while and I didn’t want to face the disappointment. It was meant to be a treat for my mum and was my way of thanking her for all the help and support she had given me. We didn’t stay very long as my mum knew I was pushing myself to go and she was worried about me. However, even though it was a struggle, I’m glad we went. The treatment I had– plus a little time in the hydrotherapy pool– helped to get my pain back under control, which was a massive relief.

I tried to continue as normal after a few days of rest but the fatigue persisted relentlessly and continued to get worse. My body seemed to over-react to everything I asked of it and I reached the point where I was struggling with everyday tasks again. I also started to experience some new symptoms; I couldn’t stand or sit up normally without my heart racing, feeling off-balance and my vision even sometimes “blacked out”. Being up on my feet gradually caused a worsening of my fatigue and these symptoms and eventually I would be overcome with the urgent need to lie down. Without thinking I naturally adapted to combat these problems; I was moving between positions very slowly and allowed my body the time it needed to adjust. I also favoured being in a lying down or reclined position as much as possible– the only relief I got from these symptoms was when I was pretty much horizontal.

Trying to get back on my feet

Due to these problems, I rested up again for around a month and then I decided I needed to start moving for fear that if I didn’t I never would. By this point my symptoms had improved a little, thankfully, but I feel this was perhaps the start of some mistakes that have stopped me progressing as much as I potentially could have these past few months.

I would go out for short walks with my mum and our dog but I really struggled. It basically became a routine of going out walking a few days in a row and then spending a few days resigned to my bed. Some days were better than others but typically I was exhausted after these walks and couldn’t do anything else for the rest of the day. I think having the end goal of returning to work in the back of my mind made me push myself more than I should have. My job role requires a lot of walking and I was determined to be able to do more. With hindsight I wish I had allowed myself more time to rest and that I had reached the point where I felt well at rest before trying to progress but you live and learn.

That said, I was making progress but it was very slow and I think the main reason was because I was simply pushing myself too much. The other problem I had was that I was making comparisons between what I was currently able to do and what I could do before my return to work. Instead of appreciating how much I was improving, I saw what I was doing as “not very much” and would put my efforts down. To me, my body seemed to overreact to what I was asking of it and I felt as though I should be able to do more. Despite being able to make myself go out for walks, doing so caused an increase in symptoms and my body still disliked being upright.

Dr Rawls got in touch with me in April and I decided to ask his opinion. He suggested that compromised adrenal function could be a possibility — though of course he could only theorise given I am not his patient and he had no access to testing. He suggested I get in touch with my own GP but that I could also try supplementing with licorice for six weeks to see if I felt any improvement. Licorice is a herb you do have to be careful with so I decided to see my GP about my issues first.

My GP told me that fibromyalgia and anxiety were causing my problems but I couldn’t get my head around the idea of being anxious at the prospect of standing up. I don’t doubt that anxiety probably made the situation worse– when you feel ill on standing and your heart goes crazy it does freak you out. But I don’t believe it was the cause. I felt a little despondent and therefore decided to give the licorice a go.

Licorice gave me the boost I needed. I started to manage my walks a little easier but I continued to spend the majority of my day on the sofa or in bed. Slowly, slowly though I was starting to feel better again.

Starting to do more

By June I had reached what I like to call “the frustration phase”. Let’s face it, working on improving your health is boring! I was beginning to get bored with the monotony of my everyday life as a sick person. I had kind of reached the point where I was fed up of waiting to feel better and wanted to start living my life. I was still tired everyday and still felt unwell (though not to the same degree as before). Despite that I made the decision to start saying yes to certain things, knowing full well what the consequences would be. My brother’s 30th birthday party was the first big event that I went to. It was so refreshing to get out of the house and do something– even if I had to sit down for the entire time– but it left me in bed the following week and I’d say it took me a good couple of weeks to truly get over the resulting flare. I wasn’t exhausted to the level I have previously been but I did feel really unwell. Interestingly, by this point flare ups didn’t result in increased pain. In the past pushing myself would cause intense pain and fatigue, as everyone with fibromyalgia can relate to. However, this time it was delayed fatigue (both mental and physical)– also referred to as post-exertional malaise– that was the big issue. Sure, my pain increased slightly after attending the party but it was short-lived and returned to “normal” the next day (which for me is around a 2/3 out of 10 on the pain scale). I took that as a big positive.

It was promising that I had reached the point where I could manage to do things if I decided I wanted to. It was just a shame that I still had unwanted symptoms and doing so caused me to experience post-exertional malaise. However, it was definitely a step in the right direction. Over July, August and September I continued to do the things that I wanted to. I went on a mini-staycation with friends in July, attended my friends’ wedding in August and even managed to go and see the Foo Fighters in September!! I managed all of these things, though they still took it out of me. My bad days, however, were nowhere near as bad as they used to be and I was also noticing that I was getting over them quicker. What previously took a couple of weeks (and even longer in the past) to overcome was starting to take 3-4 days. I had learned what I needed to do to overcome these flares quicker and my body was continuing to get stronger. Though progress had been slow and somewhat tedious, it was definitely in the right direction.

Realising things need to change

At the start of October it dawned on me that the problem I was still having was that I was struggling to get through a typical day with enough energy. I was continuing to ask too much of my body early in the day and I was typically spending half of my day (if not more) resting. I was waking up, doing some gentle stretches, making breakfast, getting dressed and then going out for a short walk with my mum and our dog. Even with regular breaks, doing this still tired me out and I would then spend the rest of the morning on my mum’s sofa. By afternoon I was needing to go and lie down in bed. Some evenings I wouldn’t get out of it because I couldn’t face exhausting myself further by going down the stairs.

I knew that to feel better, I needed to slow down and go back to square one with pacing. This lead me to write this post a couple of weeks ago and I also started supplementing with d-ribose. It has been a positive step and I am finding that I am getting through my day with more energy and I am feeling less unwell. I’ve also started to feel better when I wake up and I am even having moments some days where I am in no pain.

This past week I have started doing Qigong and I’ve been able to do it without seeing an increase in symptoms, which is great. I kind of wish I had taken this approach back in February but life is all about making mistakes and learning from them. I guess I’ve been trying to run before I could walk (figuratively speaking of course). Slowly, slowly wins the race and all.

Overall, I feel I have made some great progress in this past year and I have learned a lot. I am incredibly thankful to Vital Plan and Dr Rawls for all the help and support they have given me. I am going to write more specifically about how my symptoms have improved and how I feel I have benefited from the Vital Plan in another post as this one is already crazy long! For now, all I want to say is that I feel incredibly positive and hopeful about how my health will progress in the next 12 months. I know I will have difficult times ahead and there are big changes that I need to make. But I also know, in my gut, that things are going to continue to get better for me.