My experience dealing with Fibromyalgia as a hospital inpatient

Living Creatively with Fibro | Dealing with Fibromyalgia as a hospital inpatient

How I found myself in hospital

In this post, I’m going to talk about my experience dealing with Fibromyalgia as a hospital inpatient. On Friday 30th September 2016, I went to bed as normal and then woke up after midnight when everything stopped being normal, to say the least.

I’m not going to go into too many gory details but things started going wrong when I had to make a mad dash (well as near as I get to dashing) to the bathroom. Yes, this has happened before, I would even go as far as saying semi-frequently (I have IBS as well as Fibro). I felt like I was burning up and pouring with sweat – attractive I know, these also have happened but something was different. When I finally got back into bed about 5 minutes later I felt so ill, I was shivering even with 2 duvets and a fan heater on. Michael rang 111 and had a word and they arranged for someone to call me back. After Michael took my temperature and was worried by the result he called them back and they booked me into a nearby walk-in centre at 4:15 am. I think I may have had a few cat naps waiting for this but bless him Michael stayed up watching over me and arranging a lift from my brother down there.

Attending a Walk in Centre

For a walk-in centre on a Friday / Saturday night they were remarkably quiet there was just one person before me in the queue. The Doctor did a few tests and decided I needed to go straight to the hospital (high blood pressure, fast pulse, a raised temperature as far as I remember) luckily my brother who drove us to the doctors had waited outside and took us straight there rather than waiting for an ambulance.  Apparently, the doctor pulled Michael aside and told him to request a porter with a wheelchair if needed at the hospital and seemed quite concerned.

Arriving at the Hospital and Dealing with Fibromyalgia as a hospital inpatient

At the hospital, I was originally in the assessment unit within A & E and they finally managed to get a cannula in me,  my arteries and veins are not very cooperative with needles at the best of times and even less so when I am dehydrated. They also took some blood from the other hand so I got a BOGOF deal with the needles. Once the saline began running I certainly started feeling a little bit better.

Saturday Morning

At about 8 am I was sent up to the surgical assessment unit with a stop off for an ultrasound of all of my stomach area to see if there was anything else going on as well as the gall stones I already knew about. The conclusion later was they couldn’t see anything else. Once on the ward, I was put into an isolation room (due to being within 48 hours of having diarrhoea) which had its own private toilet. The only problem being that the saline bag was fastened to the bed instead of a separate stand so every time I needed the bathroom I had to ring a bell to be disconnected which I felt really guilty about and most definitely was able to see the frustration on the face of the Health Care Assistants who had to keep coming to connect and reconnect me. At some point in the afternoon, a senior nurse was going to get the drip stand changed from this one that had to go through the machine to a free flow one that I could just carry but this took a few hours to organise.

hospital 834152 1920

Saturday afternoon

I was seen by a doctor at some point who stated that I was able to eat and drink but as it was not a proper ward there were no meals so I was given a sandwich at (late) lunchtime and Michael had to remind them I hadn’t eaten later in the evening.  The doctor stated that Michael did not need to bring my medication in as he would prescribe it but the nurses were not too happy about this as they did not have it readily available. Once again this was just a simple matter of better communication and coordination of information.

The next night

At about 12:30 in the night a porter came and moved me from here to a proper ward (but still within an isolation room) this was one of the few times that staff care really dipped, we arrived on the ward where three staff were sat at the station he told them my name and a nurse said bed 22 and that was it. I was left in the room to sort out where the light switches were and as there was no toilet facility to go and find the main toilet. I’ll admit I had a bit of a wobble before getting myself back to sleep. At 2 am the HCA came to do my observations, she introduced herself, she was very friendly and answered any of my questions so I was able to get back to sleep feeling a bit better about everything. Throughout Sunday things were pretty much the same, I continued to receive IV antibiotics as well as the drip and was using the Ward toilets even though I was in an isolation room. When the evening medication rounds were done at 10 pm I was given my Amitriptyline, I did explain that at home I always took it at 6 pm to give it time to kick in and allow me to wake up less drowsy in the morning but the Sister told me that the Doctor had prescribed it for 10 pm so I had to take it then.

Monday and the midweek staff

On Monday morning the weekday team arrived and I could instantly see the difference of the extra staff. I had a commode brought into the room (which I should have been using since I arrived) and the cleaners were doing extra jobs. During ward rounds, the consultant said I would be having my gall bladder removed on Wednesday if nothing else turned up on a CT scan. I was also taken for my CT scan during the morning. After the many times, I have seen the big “Polo” scanner on TV it seemed surreal that I would be going through one as I always associate them with “life and death” critically ill people rather than just poorly ones. The process began with a dye going through my cannula after a flush which really stung as it had not been used for several hours. The dye gives you a hot sensation and I was informed that I would feel like I was going to wet myself was perfect timing as I was already crossing my legs nearly, however, all was well and no mishaps occurred. I had already been given a box of tissues after more unexpected sniffles in the waiting area… When I returned to the ward the HCA was very reassuring and asked me more about Fibromyalgia as she had never cared for anyone with it before. If you would like to know more about Fibromyalgia you can check out this post here.

It is helpful to have distractions

There is no denying that one of the things that got me through this stay was my technology, especially when I was over the worst. Michael had tethered my tablet to my mobile phone so I had access to the internet and no one seemed to mind me plugging my devices into charge. Luckily a couple of days before being admitted we had discovered and created an account at Readly which is fantastic as it allows me to see all my craft magazines as well as lots of other magazines of interest so I was able to have some creative ideas as well as becoming somewhat hooked on the game Cascade…

Tuesday and I continued to improve

On Tuesday, I was liberated again from the commode and informed I was a free range patient, with this, came the realisation that if anyone else needed isolating I would be moved out. Tuesday was probably my best day I began feeling quite a lot better I had caught up on my fluids and sleep and was wanting to get home. During ward rounds, the doctor explained that as an inpatient operations were regularly moved for emergencies so I was informed it might be done later rather than Wednesday but it was up to the consultant. During the afternoon the nurse came and said lucky me she had two injections for me (more needles, this time in my stomach) she never did explain what they were for, though… At about 9 pm I had my final move as they needed my isolation room for someone else, I assumed it would be within the ward but it was to a neighbouring one. Michael had packed everything up for me and we were sat waiting for about 45 minutes whilst they chased my new bed, in the end, it turned out the bed was ready but there was no porter available so Michael carried my bags and we walked around there as he didn’t want to leave me until I was settled. It was very strange going into this ward as at that point all the bed’s bar two others were empty. When it came to evening drugs rounds I pointed out again that at home I take my Amitriptyline at about 6 pm but on the previous ward they only let me have it10 pm10pm as that was the time they had it prescribed for. She was shocked and said it would be no problem maintaining my usual routines, in fact, because it was my usual medication she left it with me in the draw for me to self-administer rather than being locked in the medicine box. Two nurses of the same rank but different opinion, I’d love to know who officially was correct….

My last night dealing with Fibro as a hospital inpatient

This night was terrible I have to admit, the room had slowly filled up with other patients until 11 pm/midnight and in amongst them was an elderly lady who kept calling out throughout the night. After having the previous rooms to myself this was a big shock to the system and it took me some time to wake up in the morning. Given the fact that I still didn’t know if I would be operated on that day the nurse advised a small breakfast just in case as she didn’t know either.  I was prescribed a new drug to protect my stomach. I was given it at the morning medication rounds which overlapped with breakfast but was not told that it had to be taken at least 30 minutes before food so I spend the rest of the morning feeling queasy. Thanks to a friend on Facebook who is training as a nurse I was given this information which stopped a repeat performance during future days. Mid morning I was informed that the operation would be done in the coming month or so as an elective and I could go home.

Summing up my experience dealing with Fibromyalgia as a hospital inpatient

I would round the experience up as having received some excellent acute medical care by some lovely caring individuals very much in the right job. The treatment from the NHS is truly wonderful and it is very easy for us to forget how lucky we are to have a National Health Service which is free to use for all citizens. On the negative side, I was very much passed pillar to post and not really always informed what was happening (there was an obvious lack of staff during the weekend and I was pretty much informed of this) and until the last nurse, my own routines that help with the Fibromyalgia were ignored. I feel it is safe to say that even within the hospital environment there was not a great deal of knowledge about what Fibromyalgia is and how to manage it.

Until next time,
Gentle Hugs,

4 responses to “My experience dealing with Fibromyalgia as a hospital inpatient”

  1. Rebekah avatar

    Unfortunately it doesn’t surprise me that your fibro wasn’t treated very well in hospital. I’m a nurse myself with fibro, and when I was diagnosed my friend (who is also a nurse) said to me “I thought it was just an excuse to be lazy, but only because I know you as a person I know that it isn’t you so it must be real”. Education in the condition is extremely lacking. I’m crossing my fingers for more and more research so that we can find a cure. Also I’d say the second nurse who let you have your own routine was correct. Patient centred care is important. However there are nurses that sadly believe if it’s written down by a Dr it must be done that way. You can tell a difference between nurses when they were trained. Nurse no1 was old school for sure! Also if a patient is able self administer meds they should be allowed to. The nurse just needs to go through them and ask that you’ve taken what you should and mark it down. It’s really not that difficult to give decent nursing care but when there’s not enough staff it is. It’s such a shame that the nhs doesn’t get the opportunity to be what it could. It breaks the staffs hearts as well. Going home feeling like you’ve not done enough is really tough. Hopefully any admissions you’ve had since this have been better xx

    1. Susan Pearson avatar

      Thank you so much, Rebekah, for taking the time to write such a thorough and thoughtful comment, thankfully I haven’t had to go into hospital since. You nailed it when you said that your friend only understood because she knows you as a person, I can’t really comment because, hand on heart, before diagnosis I may well have had this view of a stranger. It is also sad that there are still lazy people out there who are not sick but chooses to use symptoms of hard to diagnose conditions to hide behind, not only do they add to people with real conditions to be labelled lazy but no doubt contribute to the lack of urgency in researching these conditions. My Fibro or Faker post was inspired by some of these thoughts. It made me smile when you mentioned that the first nurse was old school, I used to have similar thoughts when I was in teaching, length of time in an occupation is not the only factor that makes you good at it. Great teachers knew that whether they were highly experienced or newer not so good ones couldn’t see it xx

  2. Lee Good avatar

    Hi Susan, thanks for this thorough article on being in hospital when you have Fibromyalgia. I have the dreaded gallstones too and many stomach/allergy/food issues and live on an extremely bland diet. I found it interesting that the hospital staff did not know much about Fibro as it is so common now. Hope you are recovering from this and feeling a bit better

    1. Susan Pearson avatar

      Hi Lee, Yes it was quite a surprise the lack of knowledge of Fibro. When I was first being diagnosed my GP had to research the condition. I was in the hospital in October and I am still on the waiting list to have the gall bladder removed. Luckily it has not caused me any more problems since.

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