I was always a sickly child. And I grew up to be a sickly adult. I was the type of person who always had something wrong with them, so much so that if I would complain about an ailment, people would say ‘oh, what now?!’ I never thought much of it – that’s just who I was. My mum and I always joke about my ‘bad genes’.
But in 2016 things became more serious and I started to take notice. Throughout this time I was desperate for information, and to find someone like me. I found this difficult. What would I even search for? And when I did come across information from others I found that it was mainly from those in other countries, and the navigating the NHS (National Health Service) in the UK is very different and comes with its unique challenges. So 6 months after my diagnosis I wanted to write the post I was looking for.
*Reader Warning* – the journey was long, which means this post is long too! Hope it helps others feel they’re not alone. Here’s my story…
I began having severe sciatica pain on my left side, reaching all the way down my leg and underneath my foot on my worst days. I’d had a previous episode of sciatica in 2014 which cleared following physiotherapy and so I implemented the same physiotherapy exercises hoping this would help the problem.
Sadly the pain had increased. I went to my GP and explained about the previous episode and current symptoms. I was prescribed Codeine which made me feel so spaced out. Even taking half a tablet was too much. I was studying to be a Social Worker at this time and was driving to my placement each day and so I couldn’t afford to feel this way and not be able to drive. I informed the doctor and never took it again.
Saw my GP again and he said he would refer me to the Musculoskeletal Clinic at the local hospital. I went for an initial triage assessment to decide who I would be seen by. I was examined and told I had a prolapsed disc in my spine. It was decided that I would be seen by the team’s Physiotherapist.
I started seeing the Physiotherapist. I found the appointment exhausting as he got me to do a series of exercises to see my range of movement. He gave me some exercises to go away and do each day (mainly to strengthen my core) and asked me to come back in 3 weeks.
The GP prescribed amitriptyline for my pain – again I tried this and felt very dizzy and sick. I sometimes feel lightheaded when standing up and this started happening more frequently. And then, I fainted. Not just onto the floor mind you. I managed to faint and fall onto a clothes horse. This hit my stomach and I fell onto it and then back, whipping my neck. In the days that followed I was so bruised and could barely move my head and neck. Four days later (two weeks after starting amitriptyline) the side effects weren’t easing and so I stopped taking them. The following week I continued feeling light-headed and developed jaw stiffness and pain, nausea and sensitivity to light. I spent four days in bed in the dark feeling hopeless. The only thing I could find to take the edge off these feelings was travel sickness tablets.
I returned to the GP who prescribed Gabapentin instead. He took my blood pressure and said there were no problems which might lead me to faint.
Another Physiotherapy appointment and he could see some progress, so he increased the intensity of my exercises. He began trying to manipulate my back to free it up – it was agony!!
Two weeks later and another appointment, I told him that after the last session I wasn’t able to do anything for three days after as my body was so sore. I also explained that I was really struggling to complete all the exercises and that my pain levels had increased. The Physiotherapist said to go back to my original exercises.
Back with the Physiotherapist and there was no progress. In fact my pain had worsened again even though the intensity of the exercises was reduced back down to what I was able to do originally. The Physio appointments themselves were leaving me exhausted, light-headed and shaking and I was struggling to walk home from the hospital. The Physiotherapist made the decision to discharge me from his service as it was making things worse, not better.
I had another triage appointment in the Musculoskeletal Clinic. It was explained that practitioners’ examinations had led to the assumption that the problem was a prolapsed disc, however they would expect this to respond to physiotherapy. As it had not, they would authorise for me to have an MRI so they can actually see what the issues are with my spine.
The MRI could not be done at my local hospital so I had to drive to the next town. They have a mobile MRI machine in a trailer in the car park (it’s more professional than it sounds!). I had never had an MRI before and was terrified. The staff were very friendly and explained to me what was going to happen. They asked me if I wanted some music on because the machine was so loud; I said yes and was given some headphones. As I was put into the machine the first time, the headphone cord got caught around my neck and started to tighten! I pressed the panic button and was pulled back out.
It took another two times before I was put in the machine correctly as the person doing this was new and was not sure how to align me. We’ve all been new at something, but this didn’t help my nerves! I felt quite claustrophobic in the machine. I just tried to breathe deeply, hum along to the music, and ignore the thumping sound of the machine. It’s so hard to stay still when someone has told you you’re not allowed to move – but I did it. I said to myself that if I keep still and stay in there it will be over quicker than if I need a break. I came out relieved and my boyfriend drove me home.
A few weeks later and I was told there was nothing showing on the MRI, but they had only scanned my lower back, and would now like to scan my upper back just in case. I was very annoyed. I would have to take yet more time out of university which would have to be made up and this wasn’t going down very well on placement. Why hadn’t they just scanned everything in the first place?
I was sent to another hospital this time even further afield. The environment was nicer and the machine was bigger as it was not a mobile machine, so I did not feel so claustrophobic inside. This time they asked that I have an MRI ‘with contrast’ which meant they put a needle in my arm which pumped a dye through my body and helped things show up clearer on the MRI. Sadly there was nothing to see on this MRI either. This upset me as I knew that if there was no physical cause it would be much harder to treat (if it could be treated at all).
As if I wasn’t feeling dejected enough, I then began having severe pain in my fingers, hands and wrists. It hurt to type which I needed to do for my job. Every time I moved my fingers I experienced a dragging pain through the hands and down the arms. I was getting really fed up of being prodded and poked and just getting worse all the time.
By this point I was getting very frustrated. It’s approaching a year since me having this pain every day and now others symptoms are creeping in too. As I was having to keep a track of my symptoms and report back to health professionals I was taking much more notice of how I was feeling. This drew my attention what I mentioned earlier about my ‘sickly’ nature. I realised that every symptom I had was investigated in isolation and when it went away GPs essentially said ‘problem fixed’. But the symptoms would just come back again at some point.
I felt determined that someone should take a more holistic view and so I accessed my medical records and started to compile a list of all the symptoms I had experienced over the past two-year period. I also included all the things I had considered too trivial to go to the doctors about. When I sat back and looked at it I was shocked. To look at it all together was frightening and I thought ‘this isn’t normal, something must be wrong with me’.
So back to my GP I went armed with my collection of symptoms. I was worried he would label me a hypochondriac and laugh me out of the surgery – we didn’t have the best relationship. But when I asked him to look at it he said ‘oh’ and paused. He explained to me that tests had shown no physical cause for my pain and looking at that alongside these other symptoms would lead him to believe this was neuropathic pain. He increased my gabapentin medication and referred me to a pain specialist at a private pain clinic.
My appointment came through quickly and I went to yet another hospital to see the pain specialist. I went through my symptoms with him and he examined me – more poking and prodding. He then asked me what I thought was wrong with me. I said I didn’t know. People had started to tell me about others they knew with particular conditions, but I hadn’t looked them up. I didn’t want to worry myself. He then asked me to stand up and started touching certain points on my body. I jumped out of my skin and fought back the tears – it hurt so much. After this he showed me a body map on his computer with those some points highlighted. He explained that these were trigger points and people with Fibromyalgia tend to experience pain there.
The pain specialist said that in his opinion I have Fibromyalgia. But he wasn’t prepared to give me a diagnosis stating he didn’t see the point in putting labels on people where there’s no cure for a condition. Particularly where the person is young. I was so confused. He asked me what difference a diagnosis would make for me. I explained that I wasn’t bothered about the label, but other people were. It was proving a barrier to support at work, university and in health appointments by not having a diagnosis. And then he said “you’re going to have this for the next 70 years, so you just need to get used to it”.
Unsurprisingly my mental health took a nosedive from here. Was this my life now? Endless appointments, no help and constant but changing pain that is hard to plan for? My GP advised that I could refer myself to the Time to Talk service and should ask them about the support they offer specifically for people who need to come to terms with having a long-term health condition.
The pain specialist wrote to my GP suggesting my medication be increased. He also suggested I be referred to a Rheumatologist and a Neurologist for further investigation. The Neurology referral never happened as I was told the waiting list was too long.
I had a phone consultation with Time to Talk so they could decide which of their services I should receive. It’s very impersonal, telling a stranger my deepest fears over the phone. I had to take the call in a meeting room at work wondering who nearby could hear me. I was told that I can’t have the support for people with long-term health conditions as I don’t have a diagnosis (ironic after my last appointment!). They suggested I go on the waiting list for the generic counselling service. I’ll be offered 6 sessions of about 45 minutes. They said they’ll write to me when they have a space available. I just said OK, taking what I could get.
I visited the GP and told him of my new symptoms. He prescribed me vitamin D to take for just 30 days. When I left the surgery I realised that I had not spoken about the most important and severe symptoms – the pain and fatigue – which had been getting very bad. This upset me as I had even gone in with a list of things to talk about, but my concentration had become affected so much that day that I just couldn’t follow it. So I wrote the doctor a letter to add to my file explaining this. I explained the symptoms I had not discussed and how they were affecting me. I stressed that things had become so bad that I couldn’t manage the 4-hour car journey to see my family (even as a passenger). Therefore I was not able to see those who could support me.
There were only two more days of placement to go until I broke up for Christmas. I would have an assignment to do in the break but I would be able to take it a bit easier. And so I pushed on. Big mistake. The day after I broke up for Christmas I walked into town to buy some presents. I became suddenly very shaky, lightheaded and unbalanced. My arms and legs were trembling and I lost strength in my arms completely. I couldn’t pick up my bag and didn’t know what to do. Luckily my partner who works in town and was on his lunchbreak happened to walk past. He put me in a taxi home.
I spent the next week mostly lying down. I could barely hold myself up. There was a huge spike in my fatigue, confusion, memory problems, brain fog, whole body aches and tenderness and weakness in the body. I spent my entire Christmas break trying to recover and just about got back to a workable level of pain by the time I was due to return.
I returned to the GP and explained what had happened. My partner had come with me to this GP appointment to support me as I was afraid I might forget what I wanted to say like last time. I stressed how difficult it had been to keep up with my personal care. Even to hold a pen some days! Due to the weakness in my arms I was relying more and more on my partner to do things around the house and to wash my hair for me. My mood was worsening and I was experiencing mood swings that were out of this world. I was alternating from screaming and shouting at the littlest thing, to sobbing uncontrollably. It’s a wonder he wanted to help at all!
It was the lowest I’d ever felt. I felt like a burden. I knew I needed to accept that there were things I would not be able to do. Life would be different now. But why should I? I was furious! And I was also terrified. What would the future hold and how would this affect my plans. Something which kept playing over in my mind was that I wouldn’t be able to run around and play with my children. Could I still be a good mum when the time came? I even sat my partner down and told him he didn’t sign up for this, and I wouldn’t blame him if he wanted to leave. I was spiralling.
The GP suggested low mood could be contributing to my pain symptoms and suggested anti-depressants. Having had bad experiences with anti-depressants in the past I was very reluctant. He wrote me a prescription and I said I would consider it. He also told me the local hospital would be arranging my Rheumatology referral and I should call them if I haven’t heard anything. Cue numerous phone-calls being passed from pillar to post as a lot of people told me it wasn’t their department’s responsibility. I didn’t really need this extra stress and it meant my referral was delayed.
A week later I started taking Fluoxetine. If I’m honest, the despair I was feeling and my desperation for change outweighed the fear I had about taking it. I soon called it my miracle pill. I’ve had some unpleasant side effects including intense jaw pain. However, things are much easier to cope with when my moods are more stable. My moods fluctuate a lot, but the lows are nowhere near as low as they were before.
I arrived at the local hospital having been called and asked to attend to see the Rheumatologist. When I got the phone call I was so pleased. I thought I might finally get a diagnosis or some answers. However, it wasn’t a Consultant but a Nurse that called me in. She greeted me with “I hope you know why you’re here today as I can’t make sense of it from the notes!” And I was angry again. She went on to explain that people are usually referred to the Nurse after they have seen the Consultant and she did not know why the appointment had been booked.
So that it wouldn’t be a wasted visit she said she would examine me and take a history. She said this would speed things up when I saw the consultant. I went through everything from the beginning – again. More poking and prodding and I left feeling very sore. My symptoms spiked for the next week.
Two months later and I finally saw the Rheumatology Consultant. Funny thing is he had no record of me seeing the Nurse. I had to give the history, from the beginning – AGAIN! More poking and prodding. And then he just said ‘yes I agree you have Fibromyalgia. I’ll write to your GP’. And it was as simple as that. I was so underwhelmed. No after care. No advice. Just discharged me from the service.
Coincidentally I finally got offered the counselling appointments I had requested back in November. I had one appointment. It was fine, but I wanted to talk about my health and the Counsellor kept probing about family history. Before the second appointment I wrote to say I wouldn’t be taking up the rest. I had needed it when I requested it. Really needed it actually. I felt I might break. But I had been forced to find a way through alone because the support wasn’t there when I needed it. At this point it just felt forced.
Where am I now?
So that’s my journey. The ups and downs along the way to a diagnosis.
Not a lot has changed since this time. I’ve moved to a new area in the county and so need to try and find a GP locally. I expected the support to come after diagnosis but it just hasn’t been there. So I’ve mainly been focused on making changes in my life which make things easier. I’ve finished my studies and I now live closer to my family which is wonderful.
I’m going to focus on educating myself and will keep you all posted during this next journey to be the best self I can be.
Any tips gratefully received! – leave a message in the comments below.