Chronic Pain with Chronic Illness

I get my medication each week in a dosette box made up by my local pharmacist. I take so many medications that when I am not well I find it hard to work out what I have taken and what I still need to take. I now don’t need to think about what I take, I just pop them out the relevant space and swallow them down in one.

Today I noticed something though. There were 5 unopened pods from this last week. The 5 unopened pods were all my lunchtime doses of pain killers. I had not been aware of deliberately not taking them but because I was not aware of not taking them then that means I was not in pain and needing them.

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Chronic pain is one part of my health that I shunned for so long. I had always had this perception that I was weak because I was in pain and also was very aware that the Dr’s may think I was just attention seeking or drug seeking. I think I thought this because of the number of times I have seen and heard the conversations had when people come in to hospital with abdominal pain with no real cause and the suggestion of it being psychological or drug seeking.

For many years I lived with pain in my chest specifically the left side of my chest/lung. Part of me didnt want to acknowledge it and if I didnt then I would be ok but then it was harder and harder to function due to the pain I was experiencing. It was one hospital admission when I was in ICU and due to staffing I was being looked after by an ICU advanced nurse practitioner. I think her experience of being a nurse and seeing patients in pain she could tell what was real pain. I had not been asking for pain killers but she could see me wincing and struggling. It was only after she spoke to me about it that I finally admitted to the pain and feeling I had when I took a breath in, the pain was not nearly as bad when exhaling but felt like something rubbing and stabbing when I inhaled. It was from then I spoke up about it and we looked into what was causing the pain. From then I have reluctantly taken painkillers regularly.

Further investigation was done into the area of my chest where I had the worst pain. X-rays showed I had previously fractured some of the ribs- most likely occurring due to coughing and my slightly weaker bones but it didnt show anything major that would explain the sharp, rubbing pain I would get when breathing in but didnt hurt if you pressed on it. I had a CT scan which revealed why I was so sore. A lot of scarring in that part of my lung but also the pleura didnt look normal and the Dr thinks this is what is causing the pain and rubbing feeling. I have never really had a bad bout of pleurisy but the Dr said the way I was describing it the pain made them think it was pleuritic even though I didnt have the infection etc to go with it. I was told that the cause has most likely been due to the infection, trauma and recurrent asthma attacks over the years that have never really had much time to recover before the next thing hit.

Managing pain with a lung condition has really been a big struggle. Certain drugs are out of the question- non-steroidal anti-inflammatory drugs are a total no no and I learnt the hard way when I decided to try ibuprofen gel on my skin but had a full allergic reaction to it (I thought it was just if I took the pills). The aim with pain control is to eliminate pain and allow everyday function which is what I tried to achieve but have never been able to do. To get optimal pain control meant side effects which often meant feeling dopey. I got onto a regime using co-codamol and nefopam which helped although during the week I would use a lower dose of co-codamol due to it making me feel like my head was in the clouds but this meant by the end of the day I was in so much pain. It would feel like the outside of my lung was on fire- no matter how gentle you were you when you took a breath in the pain was the same. To control this part I had oral morphine that I could take at night before doing nebulisers and physio. I went with this regime for a few years until I saw a Dr who decided I should be switched to prolonged release morphine rather than the nefopam, co-codamol and oromorph mix. I was reluctant about this as had a handle on what I was doing and although the pain was never gone it was far more bearable.

The Dr who thought outside the box was a consultant who I had not seen before but was a respiratory consultant. He asked me about the pain and what it felt like, and also what was important to me about everyday function and that if I could I didnt want to be taking painkillers you can get addicted to! I was only 30 at the time and was already taking more painkillers than I liked and it was a worry for the future if I did something that needed pain relief I had this image that they would think I was a junkie because would need a higher dose of painkiller than I should. The Dr said his main concern was getting the pain under control for me to function and be relatively pain free but I should not be on prolonged release morphine etc due to it suppressing your respiratory effort which I can afford to do. I was so happy to know I wouldn’t be taking the MST anymore but a little worried about what I was going to be taking as could not go back to the pain I once had.

The Dr suggested lidocaine patches to wear topically on my chest where it hurts to see if this helped the main as he felt there is most likely nerve involvement and the whole area is constantly irritated which is why it is always sore. He did joke that you cant rest your lungs like you can a sore leg to let it get better!!

So a new regime of painkillers started which was the lidocaine patch, co-codamol 4 times a day and then the oromorph for when my chest is really bad (they also use it for breathlessness to). Since starting on this regime I have been stunned at how the patch has worked. It doesn’t take the pain away totally and the Dr said this is good as it means it will let you know when to stop!!!

Most recently since moving to my new consultant and being kept on the higher dose of prednisolone the pain in my chest has been no where near as bad. Instead of going through 2 bottles of oromorph a month I don’t even use a whole one and as I noticed last week I have not been needing my lunchtime dose of painkiller either. I am so happy about this. I have always had at the back of my mind I want to get off all painkillers so having a week of less pain and not needing the painkillers is great. When I see my consultant next I am going to ask if we can maybe just drop down on the dose of painkiller with a view to stopping them and just having the patch and maybe the oromorph for emergencies!

The lidocaine patch has been life changing- I do not understand how it works really but it works so I don’t care. I try not to wear them at the weekend to have a break and just keep them for work and weekends when I have lacrosse or something.

With each day that goes by just now I am in no doubt that I made the right decision to move consultant. If I didnt I am pretty sure I would have been in hospital by now. Staying on 20mg of prednisolone has got me through a chest infection without needing to increase the dose just a few extra nebulisers and antibiotics. Obviously 20mg of prednisolone long term is not good but I am hoping that as the mepolizumab starts working I will notice the difference and we can reduce the prednisolone!!

When is it going to start working??

One thing I have found since starting mepolizumab is I am constantly questioning myself and am almost preoccupied thinking about what results I may see and how my asthma will improve.

Its hard because with this drug unlike others there is no knowing when you will start getting the benefits and if you will get the benefits. If your chest is tight and you take some salbutamol your airways will relax and you can breath again without so much effort, or if you have a chest infection and given high dose prednisolone you notice the effects of it both positive and negative (I’m talking about the insomnia, restless legs, hunger) but with this I have no idea when I might start to feel better.

I track my peak flow and keep thinking I am seeing it trend upwards and wonder if this means the mepolizumab is working but then today I came crashing back down to earth. It was a bad night- up every hour, coughing, wheezing and getting more and more irritated with the noise coming from my chest. I knew before I blew my peak flow and it would not be good and I was right. It dropped- a whole 150l/min.

I know that just because of the mepolizumab I am not always going to have great peak flows and my chest will still have hissy fits but I guess what I am struggling with is knowing if my chest is just more stable (I have not been allowed to drop my steroids yet either) or its more stable because of the mepolizumab. Its a bit of a guessing game.

By the time I have my next injection in a few weeks I will have a lot more data and will have been able to capture a month of peak flows 3 times a day and will be able to get the average peak flow compared to previous months.

For now I guess I just need to watch this space!!

New drugs, new start?

I haven’t written in ages and I apologise for that but I really did not know what to write and how to write without getting myself angry and upset as I feel the last 8 years have just been a total waste.

I wrote a while back about changing consultant and hospital because I was really finding the relationship I previously had with my consultant was no more and my health was getting worse, I was getting put on more and more drugs and constantly riding a rollercoaster of feeling well and being on high dose steroids to feeling rubbish because my steroids were reduced.

So lots has happened since switching consultant. My first appointment I finally felt someone was going to do something to help. I was put forward by my consultant at their MDT meeting to see if another consultant would agree to me being a candidate for mepolizumab. Due to the cost of the drug you need meet certain criteria and have a second consultant agree to it. Thankfully another consultant agreed and the wheels were in motion for me to start.

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I didnt really know what to expect. Its not like other drugs you get by injection like any sickness or steroids where you notice a difference pretty quickly. This one it can take a few weeks before you notice positive effects from it but Im not sure what I will feel and what the positive effects will be. Will it be the nights are better and I won’t wake up so much needing meds or will my peak flow be increased or able to do more during the day with less symptoms??

Time will tell how it goes. For me because of the steroids I am on they are going to use my maintenance dose of steroid a marker for effect of the mepolizumab so if I can reduce this then we can move forward and continue on the mepolizumab but if I cant reduce them without my chest getting worse then I won’t stay on it and will be back to square one and trying to find something else to help me.

Speaking to the nurse they seem to have had really positive effects and not many people have had to stop. Also the side effects have not been too bad apparently. A bit of a headache and back pain seem to be the most common. My head has been killing me but it is easing off and if that is the only side effect I cant really complain because a headache is the least of my worries as the pain and suffering from my chest over all these years far out weighs a sore head!!!

There is deep seated feeling of anger in me which I need to get over but I just cant shake this feeling of having wasted my time with my old consultant. Everyone told me she was the best but I guess the best is not always what works and it really didn’t for me. I asked so often to try different things anything to try and get some stability even asked to stay on the higher dose of steroid as I knew this was what my lungs were happy with but it was always a no and just had to persevere and would get there. Clearly that didnt work as every attack I ended up in ICU or HDU and so much time off work. If it was not for understanding bosses I would be out a job and have no purpose or aim to try and get myself well. I am really angry that it took a horrible admission to hospital and me essentially getting so upset that I was getting no where and people asking me if I had tried x,y and z and all I could say was no and they look quizzically at me like I am mad because my asthma is so uncontrolled yet I have not even been considered to trial some of the more medications till now.

I need to keep myself grounded though. Even though the results of this drug in others has been fantastic I really don’t want to be disappointed and pin all my hopes on it to then be totally devastated that it doesn’t work or it doesn’t work well enough to justify keeping me on it. Even with the best results there can be from the mepolizumab my lung issues won’t totally be cured as the years of uncontrolled asthma have caused a lot of airway remodelling and scarring which cant be reversed.

Fingers crossed the next three months are full of good things and I can stay on the mepolizumab as I desperately want my life back or even just some of my life back where I don’t have to spend all the time I am not working resting to make sure I am then able to work the next day.

Will keep updating as I go and if I see effects from it.

New horizons- not knowing how to feel!

In March/April for me my asthma care hit a wall and I could no longer continue as I  was. Despite my consultant being one of the best in the field of difficult to control asthma I was getting no where, I was feeling lost, totally out of control and no idea what I was doing other than trying to keep myself as well as possible. Something had to change and in my opinion it could only be change for the good because I felt things couldn’t get much worse.

That hospital admission changed everything back in April time. By the time I was discharged I had a new team and although I had not met with them yet I felt more confident about my care, who was looking after me and positive about the future. Once discharged home I eagerly awaited my outpatient clinic appointment to find out what would be happening and where I would be going with my care. It took a while to come but yesterday I had my clinic appointment. I spoke with my new consultant on the phone and discussed various things including monoclonal antibody treatment which the allergy people were also keen on. It was decided I would wait and see the consultant once a decision was made on it.

I pinned a lot on yesterdays appointment and the new treatment I would be starting. I kept trying to tell myself to not put all my eggs in this basket as things may not change at all and I might yet end up the same as I am and no further forward in getting my asthma under control. Recently I have felt well and managing my asthma quite well. It is because of the high dose of oral steroids I am on and using nebulisers fairly regularly but it has kept me well. People have commented on how well I look and sound. Again the security blanket of prednisolone the drug we all love to hate but right now I am loving it because I feel so well (come 3am when I am up with insomnia and restless legs I am not so fond of it but cant win them all).

So what happened yesterday….

Well not what I wanted but despite this it was a positive appointment. We did not start new treatment. 2 reasons- my chest was not quite good enough. The recent weather has caused a bit of havoc and I have found it more difficult to remain stable but also he wants to use a different drug but the same type of medication.

He is hopeful that my asthma will get better. He did say and many consultants have said it before I will never be free of asthma and may still need hospital help but I should not have to rely on steroids like I am to be able to function and live some sort of life. I long to just be able to plan things and know where I am with my health from week to week or day to day.

Having faith in a tea is so important and to feel listened to. I went with a list of questions and things I wanted more information on such as a plan of what to do when I am not well because being on unlicensed doses of inhalers and oral steroids there is no where to go when things get bad other than the hospital and that is not needed just for extra medication so to have a plan for this at home would be really helpful.

It may not be perfect but I feel more confident in having someone who I can speak to, I almost ended up crying when I was there as I am so frustrated at my asthma and everything it has cost me and stopped me doing. I try to find the positive and focus on the positives things I have done as a result of asthma but there is the still wonder of what would life be like if my health was to become stable.

I was really shocked when after my appointment I felt so drained and then in the middle of the night I woke up and was so angry. I think it sunk in that there is going to be a change. It may or may not work but something is being tried and nothing has been tried in as long as I can remember. I felt so angry that I have been left sitting for years just going in and out of hospital, up and down on steroids and nothing more was being done so had resigned myself to the forever of life being like that until the attack came that would finish it all. I was angry that only because of a bad admission and really throwing my toys out the pram that something has changed and may help. Im not sure how I will feel about the last decade if this new treatment has a positive effect.

Life has been very busy with various things particularly research and PPI which I love and so thankful to have it to fall on when I asthma is stopping me from doing everything else in my life!!!

Asthma Death in Children

There is so much research into asthma just now looking at a cure for asthma, better management, getting asthmatics to comply with treatment better but research into asthma death, often a taboo subject to talk about is vital to make any change in the shocking asthma statistics.

Ann an children’s asthma nurse specialist is also one of the PhD students at the Asthma UK Centre for Applied Research. Her PhD is looking to speak to parents of children who have died from asthma.

The importance of this I think is two fold.

Initially the whole concept of this PhD came from one of the Patient and Public Involvement Leads at AUKCAR whose own daughter died from asthma. Having a PPI member come up with the research idea and the centre then backing it really highlights just how much AUKCAR values the patient and public group by implementing project ideas that come from them.

Secondly this PhD is so vital. Only a few months back it was revealed that across Europe, the UK has the worst rate of asthma deaths and a rate that we all hoped would improve after the National Review of Asthma Death (NRAD) was published in 2014. However this is not the case.

In the UK death is very much a taboo subject. People don’t like using the term death or died. You see the term passed away or lost- you don’t lose someone if they die because if you go looking you won’t find them again. Asthma death is just that and I know people who have had family members die from asthma also do not like the term lost.

For the first time research is being undertaken by an asthma nurse specialist who deals with a number of people with severe and life threatening asthma. Rather than speaking to medical staff, Dr’s and nurses Ann is going to be speaking with those directly affected by asthma death. Ann wants to speak to parents or carers whose child has died as a result of asthma. Speaking to you will mean we can learn from your experience and make a change for the future.

Have you been affected by asthma death in the last 10 years (in or after 2008)? Has your child died between he age of 5-24 and you were there with them. Would you like to speak to Ann and help make a change for the future?

All you need to do is email Ann: ann.mcmurray@ed.ac.uk or by phone/ text on 07976582297. You will have a single face to face chat with Ann in a place that you are comfortable which will last no longer than 2 hours.

The study has been reviewed by the West of Scotland Research Ethics Committee 3 (WoSREC3) and Patient Public Involvement volunteers of the Asthma UK Centre for Applied Research (AUKCAR).

 

This weather and managing with it.

The last few months Scotland has experienced some of the hottest weather it has ever had. So many people are loving the sun, warm weather and having the ability to wear shorts, t shirts, hair down and enjoy BBQ’s. Most of my friends and family are and I envy them so much as they can sit comfortably out in the sun and just enjoy soaking up the vitamin D giving the peelie wallie Scottish skin some colour.

I think I truly am the grinch just now as find this weather unbearable. So many people loving the hot weather, willing it to stay and I long for the cool weather, some wind and way less humidity even some snow wouldn’t go a miss!! I always have been a fan of the winter months- even before my breathing was bad. My love of the snow, mountains, fresh air and skiing will never leave me as I long for it everyday. Over a decade down the line I still resent what happened in Canada and the destruction it caused to my life. All the if’s. If I hadn’t gone to Canada maybe I wouldn’t have go the infection, would not have been helicoptered from one hospital to another, would have not had so much damage to my lungs but I cant dwell on this. I can long for those times again.

Now though my love of snow and winter is not for the skiing but for the air, lack of humidity and comfort. This weather just now I feel is suffocating, it is like having a pillow held over your face that you cant get off. Breathing air which just feels too thick to get into your lungs. It is a hard sensation to describe, almost like you want to water the air down yet it is the water in the air that is causing the problems.

Rather than spending my time out in the sun I have had the curtains shut, windows open in a bid to keep my flat cooler. Fans are going full blast which I really could not be without. Cool showers have been an essential as well. Something that comes up a lot with asthma and post attack is that you look ok and when you don’t do much you are able to breathe a lot easier but the moment you go to do anything it is an uphill battle. This is the part that no one sees and this is the most frustrating part because I don’t feel unwell when doing nothing yet feel like I am tasing for breath at the slightest thing. Unless you have been through it I really don’t think you can understand what it is like.

The most frustrating part is unlike with a chest infection or an attack there is medication you can take to help alleviate symptoms but when the weather is involved there really is not much you can do, no amount of steroids are going to make the air less humid and easier to breathe. How I wish there was. My one sanctuary is my car which has a fantastic air conditioning system in it and I am really appreciating it right now. I am currently sat in my car with the air con on as I write this. The nights are long and a night when you cant sleep is always made to feel longer especially when you cant breathe too. If this weather is to become a regular occurrence I may need to sort my flat out to help with these conditions.

Right now one of the really frustrating things is the lack of control. I cant control any of it, no one can make it better and I am having to miss things because of my breathing particularly at night when the humidity is so much worse.

I know I am not alone in how I am feeling and how the weather is effecting my breathing. There will be hundreds of others with all sorts of long term conditions who are struggling to cope with the weather to. It would be great to hear from anyone who has found good ways of coping and making their life easier!

Feeling well….

……is a strange feeling sometimes. For so long now I have felt like it has been a constant battle for good health and wellness. It may sound strange but for so long I have hated how asthma has made me feel. I really resented having it at times and all that it has stopped me doing. Now though everything seems a little different.

What has changed???

I changed consultant as my relationship had just broken down and I really couldn’t communicate with them very well and just felt the aim was to get me off steroids no matter what. So an admission in April changed everything and a change in consultant.

Back almost a decade ago now when I was living down near Southampton the specialist I saw was a fan of using a split dose of prednisolone. I would take one dose of 40mg in the morning and then another dose of 20mg early afternoon. Gradually I would wean it down to my maintenance dose of 15mg once a day which along with a syringe driver of subcutaneous terbutaline 24/7 would keep me fairly stable. Back up in Scotland they never used a split dose of prednisolone (or subcut terbutaline in a syringe driver), so I eventually stopped asking about it.

This last admission though a new consultant suggested we try a second dose of prednisolone as I kept getting worse in the late afternoon early evening (the same reason I was on a split dose in England). It took a few days but we could see the change in my peak flow which didnt vary nearly so much.

Adding a second dose of prednisolone has had such a positive effect on me and how my lungs have been feeling. I have been monitoring my peak flow regularly and thanks to bluetooth the results are sent to my phone. For the first time in ages I have had a really good pattern and very little variation.

E600E13B-09AA-4E64-B47A-2919FAD0574FThe bottom part of the photo shows the variation in my peak flow over a week which is really minimal.

I know though that I cannot keep going on this prednisolone regime long term despite how well it is making me feel because it is causing havoc with my body, weight gain, high blood sugars, thin skin, thinning bones, poor concentration. All the side effects I think have been worth it to even just give me this short period of feeling well. I have at least another two weeks of being on this prednisolone regime which equates to 35mg a day split between 15mg in the morning and 20mg at lunch. Part of me is slightly scared to see my consultant as I know we will need to address reducing the prednisolone although this will coincide with starting new treatment so fingers crossed that works and I can continue to feel how I do.

At first I thought the extra dose of pred was not going to do much but as I felt better I started to second guess myself and wonder if I felt better because something else was being done and I had a new consultant etc, but I think it is the prednisolone because so many people have commented on how well I look just now compared to before so it has to be that. I still have bad days when the weather is not great, humid or it is too hot and airless making breathing harder but I don’t find I get quite as bad as I did before.

I wish there was an alternative to prednisolone that had the same good effects but didnt give you the side effects that can really cause more problems than the asthma does.

I am hoping this period of stability continues and after so long of fighting for it, I would hate to go back to where I was before when I didnt know how I would be from one day to the next and would have attacks that come just straight out the blue for no reason.

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