Paul's Story | CIDP

We've been sharing weekly stories, old and new, from our supporters trying to highlight the wide impact of Inflammatory Neuropathies. This week, we're looking back on Paul's experience of Chronic Inflammatory Demyelinating Polyradiculoneuropathy - also known as CIDP.

Round 1

Difficult to know where to start really, so I guess the place would be where I first noticed something hurt! I’m not one to run to a doctor at the drop of a hat, but after a few days of muscle ache all over but then localising in my legs and becoming more severe and pins and needles in my thumb and first 2 fingers, I took myself off to the doctor. Bloods were taken and I was advised to drop my prescribed Statins as this is known to aggravate muscle pain. Now to wait for blood test results.

That was Monday 18th November 2019.

Thursday 21st November, we had booked lunch with friends to celebrate Beaujolais day.

My calf, thigh and upper leg muscles were very painful when I woke so I took a hot shower to ease the pain and, determined not to let down friends, we set off. Whilst I was in a lot of pain the moderate amount of alcohol I consumed did ease it to some degree.

It was at end of the day when we were about to leave I struggled to stand from the table and in the hotel reception the sofa was just too inviting to sit on whilst the ladies popped to the WC.

As the sofa was quite low, I found I could not stand! Others thought this was due to the wine and Guinness but at that point I knew I was in trouble.

I was ‘helped’ to my feet, and I staggered to the car, upon raising one leg into the footwell my remaining leg could not support me! So, laying in a car park in the rain I gave up and declared exactly the amount of pain I was actually in.

Luckily, our guests for lunch were my wife and I’s best friends, one of whom is a Nurse Practitioner and her partner an ex-paramedic. I was instantly examined for stroke and heart attack and deemed that this was not the issue and fit enough to get home and see how I was there.

Once home, advice was sought from NHS 111 which did not help as the nature of the call (from NHS111) was too scripted. It was decided at this point to go straight to A&E in Bournemouth. Our friends introduced themselves to A&E reception and suggested that I should be seen straight away so I was through the doors very quickly and assessed within 20 minutes and given some pain relief and placed on a drip.

A few hours later I was moved into a side ward for further assessment. The consultant on duty understandably suggested I should be seen by the Rheumatology team who examined me and placed me on 40mg steroids per day and listed some blood tests that should be completed. I lost count of how many bloods were taken on one visit 10 vials were taken and I am sure at least 3 other visits were made.

I was then moved to the Acute ward from where I was taken for a chest x-ray, CAT scan and MRI Scan all on a Saturday (I started to really appreciate the quality of the NHS and it’s hospital staff).

The Steroids started to kick in and the constant pain started to dramatically reduce within a few days, but it had left my legs very week and painful to the touch. All blood test and scans came back clear! I spent the rest of the weekend learning how to use a walking frame but determined not to take it home I started to use a walking stick and left hospital on Monday evening.

After week at home and lots of exercise I was getting stronger and with the help of physiotherapists I stated to learn how to walk properly again. Further tests based around muscular problems these also showed no real issues.

I started to reduce my steroids by 5mg per week until finally finishing them mid-February 2020 and I was now almost back to ‘normal’.

The discharge diagnosis was Myositis

Round 2

Friday 21st February, we had dinner with neighbours where I noticed pins and needles in the front half of my foot and toes.

Thinking nothing of it I continued through the weekend. At the start of the following week I started getting pain in the small of my back and later in the week it started again in my thighs.

By Friday morning I had to leave work early due to the pain. Through the weekend the pain started getting worse, being stubborn I ‘put up with it’. Worked from home on Monday but Monday night was terrible, by Tuesday morning I again became too much, so we called NHS 111.

Having some history on me they dispatched an ambulance which arrived within 30 minutes and started pain relief, fluids and numerous other tests. Under their advice I was transported to Bournemouth Hospital, straight into A&E and more pain relief and tests before being moved onto a side ward.

During the Consultants examination I strongly urged him to investigate a neurological issue (despite my previous diagnosis) as I now had pins and needles in my whole hands as well as my feet. The Consultant visited me quite a few times with a few questions each time before declaring ‘we might be onto something’.

I was then moved to the Acute Medical Ward (AMU) later that day.

I walked into the ambulance that took me to Bournemouth Hospital on Tuesday morning, but by Tuesday evening I could not lift my legs off the bed let alone stand or walk. I was soon seen by the neurology team and put on 30mg steroids per day, max dose of Codeine and Paracetamol, then later oral morph by request when required which was mostly during the night.

The worst pain was in my lower back at the base of the spine. This was aggravated by the inflatable beds which I understand are great for preventing bed sores but the ridges in them pinched the area of my back which was giving me the most pain.

Cold definitely worsened the pain, I often had to sit on the side of my bed (which was a struggle) and wiggle my back to try to get a little relief, I found that the cold floor would shoot pain through my legs and back.

Thursday I was moved to Ward 14 where I saw the Neurology Consultant who ‘had an idea of the issue’ and after a few questions announced that I had CIDP. What is that? After a brief description, he suggested I look at gaincharity.org.uk [now inflammatoryneuropathies.uk] for more details, but he would return with some information. Gabapentin was added to my list of drugs and a lumber puncture was organised.

A common hoist method of transferring from bed to chair

The pain in my legs and back worsened before it started to improve. I managed to get my bed changed for one the was not inflatable and I managed to get some sleep, not much but some. I stayed on ward 14 for another week seeing doctors and the Neuro Smart physiotherapy team teaching me how to use the equipment to stand and transfer between my bed and a wheelchair. The freedom of a wheelchair was great, it was fantastic just to be able to feel hot running water on my hands, although I did not have full feeling in my hands, just hot and cold, rough and smooth, it was still really nice.

The Coronavirus (COVID 19) was becoming more of an issue and on Friday 13th ward 14 was to be prepared for Corona cases, so I was moved onto the Stroke Ward. The only bed available was an inflatable bed, so back to the old problem.

Luckily, I was only there for the weekend. The good thing was that it was next door to the physios so all the equipment was on hand and I could use the little cycle machine whenever I could.

That was short lived as on Monday I was moved to the Eye Ward, which could be further from the physio department if you tried. The Eye Ward was quiet, and I had a normal bed, so I slept when I could. The main sources of pain were easing but the strength in my legs was still very week, still not able to support my weight. The Eye ward had a new disabled shower and although I was still very unstable my wife helped me shower for the first time in 2 weeks, I cannot tell you how great that felt.

The Coronavirus was now becoming a real threat and the hospital was in the throws of setting up something major. Following chats with the nurses and my Neuro Smart physios, I was now very keen to get home. I tried to set a target for Friday 20th March, it was suggested that Monday 23rd would be more realistic but we would see how things went. Equipment was ordered for home, a Re-Turn (looks like a sack truck) to help me stand and transfer between bed, chair, toilet, etc, a commode and some blocks to go under a seat to make it easier to stand and sit.

Re-turn in action

These arrived at home on Friday morning. I called the physio team and they hatched a plan ‘to get me out’. We finalised the plan just as my wife had arrived about 2:30. The Neuro Smart Team had arranged a car to transport me and they would do a ‘home visit’ and train my wife and two sons how to use the equipment and explain everything else. My medications arrived just in time. So, all was good to go.

At home at last! The training and assessment all good and we were left to ourselves. There was an enormous sense of calm on my part.

As a result of the pain and the CIDP diagnosis I found myself in probably the lowest point in my life feeling and sometimes believing that I would possibly never do some of the things I loved doing along with the possible burden I would be on my wife and sons.

All the things we take for granted like washing yourself, shaving, going to the toilet was just impossible to do.

One thing I shall never forget is how painkillers bung you up after 11 day I was begging for more and more powerful laxatives. When they finally worked my Health Care Assistant (HCA) believed I was due some sort of award!!!

I remained in a wheelchair for about 8 weeks progressing on to a walking frame and later walking sticks then just one stick. Event then showers were a problem due to balance issues.

Physiotherapy was promised but never arrived because of Covid, so we were very much left to our own devices and the internet!

I worked from home for the next 18 months or so due to a suppressed immune system, only working in the office on the weekend when no other staff would be in.

At time of writing, I only work Monday – Thursday 8:00 – 2:30ish and at home on a Friday.

I have tried immunoglobulin (IVIg), which had very little effect on the first dose and adverse effects on the subsequent 2 doses, so we gave that up.

I find fatigue a major factor with CIDP and the inability to walk much more than a mile or so a day without suffering pain for days on end. I still have a nap in the afternoons.

I haven’t heard from my consultant since January 2023 after promising to organise a nerve conductivity test!

He did however suggest that I could get better in 5 -10 year’s time.