Am I losing my spine or am I losing my mind?

This week Amy is in conversation with her sister Elle, talking about the back problems she has been suffering with over the last few months.

It all really started at the end of January. That’s when I first started having lower back pain, but it wasn’t severe at this point. It was on the 23rd of January, on a Friday, that I woke up and thought “this has got a lot more serious.” I was particularly concerned because the pain was in my lower back, not in the shoulders/neck area which is where I usually suffer with tension.

I decided to check my urine (I am a nurse bear in mind) to check for any signs of infection, it was completely clear…

What are the signs of a urine infection? (well this is a health blog after alll…)

Nitrates in your urine. Leucocytes in your urine. Protein in your urine. Mine was completely clear (and I did two samples because this is the sort of person I am…)

So let’s get back to it…

Yeah so anyway I continued to go back to work, but mentioned to the staff that my back was hurting. By the end of the shift I was in severe pain. The only way I can describe it was that my whole back was like a brick, and that there was a fist wrapped around my spine at the bottom.

My partner Adam, who has suffered with back problems himself, was looking worried when I got back to the flat. We decided to go to the walk in centre but there was a 4 hour wait and in panic, I rang 111. They basically said you know “just go home and rest it off.”

The pain got really bad that night. I mean I couldn’t sit down or lie down, I just had to stand all the time. I rang 111 again and they got me an appointment with the GP collaborative. The GP I saw said that they suspected I had a muscular strain and prescribed me some high strength cocodemol. I was also signed off work for two weeks.

So how did you feel after the two weeks off?

I continued to be in pain.

What was the pain like, can you describe it?

For the first week it was just very very tight, like I was sat in a corset that was being tightened. I just was never not in pain. The cocodomal wasn’t really working either, so then I was put on diazepam.

After a while, my pain started to ease off in the mornings, but grew worse in the afternoon. I was in a cycle of taking my medication and ringing 111 for support.

Mentally it was difficult too. I felt like I had lost control of my body. You know, I couldn’t do the things that I could always do. I was very scared, I was very worried that it was going to be like that forever. I had known of people slipping discs and having to take months off work and I was worried it was going to affect my career. I don’t like being sat in my own thoughts in my own flat.

After the first couple of weeks, I started to go back to work which was on reflection a mistake, but I was taking a GPs advice. I did one shift, came back and I couldn’t walk like normal. I had to be guided to bed by Adam.

After this came the spasms. They felt like I was being electrocuted down my entire body, from my back down to my legs. The combination of these and the palpitations was horrific. It felt like a prickly porcupine was wriggling up my back. I couldn’t sleep properly and I was exhausted. I was ringing my GP every couple of days for more help, but they just said to continue to take the medication for now.

I was struggling to cope at this point, I was panicking; I felt I was locked in a room and I couldn’t get out. All I wanted was to be back to normal, you know I couldn’t get in the bath on my own, I couldn’t dress myself, I couldn’t pick anything off the floor, I couldn’t do any house work.

Not that you did much anyway…

Haha I know. But for that to happen to me, as someone who has always been independent and powered through difficult situations, was very difficult.

 

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A relaxing foot mask

 

Do you think that the mental effects of being ill had an impact on the physical symptoms?

I do I think it made the pain worse in a way. I was constantly having dark thoughts and being out of my routine of work did not help. I had really irrational thoughts as well like, what if I am paralysed? Am I going to be like this for the rest of my life? Crying for no reason, you know just crying!

And now you sound like me!

Hahaha I know! But really it was like my body was saying you have to cry, you are in too much pain not to be crying.

My symptoms changed after this point. I got more syatic pain; numbness, pins and needles, tingling down both legs and a numbness down below. It was very on and off. I had started to go to physio which was helping.

Do you think that part of the fact you were getting better at this point was that someone had taken more concern over your problem?

I think part of it was that and I think part of it was the fact he (the physio) had, through deep massage, literally got the spasm out. You know, for a while during and after physio my muscles were really relaxed.

To be honest the following few weeks were like a rollercoaster. One good day where I could walk a lot and be active was met by another terrible day where I couldn’t do anything. And there was conflicting advice; some people said to keep active, others said don’t do too much. I was in a  whirlwind of contradictions to be honest and was the whole way through this experience. Every professional I met, the physios and the GPs, told me different things. I was lost. In the end I just listened to my gut and did what I felt made me feel better at the time.

 

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Soaking my feet really made me feel better

 

After about two months, I felt I was getting somewhere and I went back to work. Unfortunately after about two weeks at work I had a flare up, which involved biolateral leg pain in both legs, feet and my bum. I also had arm pain and was starting to have spasms again. I thought I was back to square one.

After weeks of not contacting them, I rang 111 again, in desperation really. I’d never had leg pain in both legs. The numbness down below was getting more and more intense; I felt like I was needing to wee all the time. The pain in my legs was excruciating. I couldn’t sit for more than 10 minutes. After a few days I was referred to a muscular specialist who then referred me for an MRI scan, mainly due to my caudaequina symptoms, normally highlighting a more severe problem.

At this point I was off work again. There was one night where, I am sure you remember Amy, we ended up in A&E because I was so scared of what I was feeling.

It must have been about a week later that I got my MRI scan. I just couldn’t believe the results. I had no abnormalities, with either my neck or my spine. I burst into tears on my doctor, I just couldn’t believe it.

The GP explained how complex the back was, and she felt it was most likely a muscular problem. She told me that muscular pain can be just as bad and that if it had occurred in a certain area of my body, that it can push on the syiatic nerve.

So reflecting on these quite surprising results have you any thoughts?

I explained to my physio, who was very surprised by my results, that I have suffered with severe anxiety and part of my condition is overthinking things. I have had help with this for many years, but obviously this experience you know, was completely knew and different to anything I had gone through before. I do believe that the stress and anxiety that I was under, worrying about my career, my life, having to have surgery all these things which had become very real and apparent just exacerbated the symptoms.  I think part of this was also because I wasn’t on the right medication.

So to conclude I think you should delve into your coping mechanisms throughout this experience…

Well apart from the support network that I had, I turned to Art. Through being creative I felt like I was doing something productive and I didn’t have to move much to do it which helped! Walking and generally going out when I could, helped. I had regular baths and magnesium flakes really worked well for me as well. Also heat patches.

Oh my God the heat patches…

Yeah, the heat patches that I wasn’t meant to put directly onto my skin which I didn’t realise until last week or something! But yes, the help of my boyfriend Adam, the exercises I was told to do like palates on the swiss ball. Because of my low mood as well, nothing really interested me but sweet foods- muffins, cream cakes, chocolate éclairs- so in many ways I comfort ate.

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What I will say to end it is that you have to go with your gut instinct and I am now taking amatriptoline which is helping me tremendously with the nerve pain.

 

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Some great exercises to help strength your core and back

 

 

 

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