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!!

What I take and what it all does!

Part of having Brittle Asthma means quite a strict daily medication regime but also the constant quest for the magic inhaler, pill or nebuliser which might just be life changing or not even life changing but give you that bit more freedom and better quality of life.

A common theme between brittle asthmatics when first meeting someone is to ask about what medications they take. Not to be nosy but for that inhaler they take that you might not have tried or something different which might help!!! I have a page where it has my medication but I thought I would do a post about the regime I follow and why I do this and what the point of each medication is.

During a normal day I have four medication sessions so to speak: breakfast, noon, dinner and before bed! As I take several medications more than once a day I am going to explain each medication after my regime.

Breakfast: Salbutamol and Atrovent Nebuliser and a saline nebuliser if needed. Seretide and Flixotide inhaler, Nasonex nasal spray, Prednisilone, Theophylline, Fexofenadine, Citirizine, Calci Chew D3, Lanzoprazole, Cyclizine, Nefopam, Co-Codamol, Laxido,

Noon: Salbutamol and Atrovent Nebuliser (if needed. I don’t always feel the need to take this set of nebulisers), cyclizine, nefopam and co-codamol.

Dinner: Salbutamol and Atrovent Nebuliser, Cyclizine, Co-Codamol, Lanzoprazole and Calci Chew D3

Before Bed: Salbutamol and Atrovent Nebuliser along with saline if needed, Seretide and Flixotide Inhaler, Nasonex nasal spray, Theophylline, Chlorophenamine, Co-Codamol, Nefopam, Amitriptyline and Montelukast

When my asthma is a bit better I substitute the atrovent nebulisers with a once a day inhaler tiotropium and my salbutamol nebulisers with salbutamol inhaler however I rarely don’t take salbutamol nebulisers except during the day when at work.

The nebulisers I take:

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I take Ventolin aka salbutamol in either 2.5mg or 5mg doses. Salbutamol is a short acting bronchodilator which helps to relax the smooth muscles in the airways which have constricted causing wheezing and the feeling of breathlessness. I also take Atrovent aka ipatropium in a 500mcg dose if I am not taking my tiotropium inhaler aka Spiriva. Both Atrovent and Spiriva are drugs commonly used in COPD but are becoming more common in the treatment of difficult asthma. It is an anticholinergeric drugs which blocks the muscarinic acetylcholine receptors in the smooth muscles and stops the bronchi from contracting due to inflammation.

I have two nebuliser devices depending on where I am. I have a mains powered nebuliser called a Pari Turbo Boy which is fantastic but not possible to use when out and about so I use a Beurer IH50 portable nebuliser which runs of batteries and much handier than needing to find a plug for the Pari!

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As well as the nebulisers I also take 2 different inhalers regularly and then a ventolin inhaler as and when I need it. The main 2 inhalers are known as preventers. The first is Seretide 500 2 puffs twice a day increased to 2 puffs 4 times a day when unwell, which is a combination inhaler made up of fluticasone and salmeterol. The fluticasone is an inhaled cortico steroid which dampens down the inflammation in the lining of the airways in the lungs. The inhaler works locally on the lungs and very little of the steroid component is actually absorbed in the circulating system. The salmeterol is a long acting bronchodilator which has a 12 hour working duration compared with the 4-6 hours of the salbutamol inhaler. I also take Flixotide 500 2 puffs twice a day can be increased to four times a day, aka fluticasone which is part of the Seretide inhaler. Due to the doses of inhaled steroid I need I was taking a higher dose of Seretide however was suffering with a lot of cramp due to the higher dose of the salmeterol so I have a second inhaler with only flixotide.

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Twice a day I use a nasal spray due to allergic rhinitis associated with my asthma. The nasal spray is Nasonex aka Mometasone which much like the inhaler is a steroid based medication which acts locally on the inflammation in my nose and sinuses.

Along with my nebulisers, inhalers and nasal sprays I also take numerous tablets.

The most important one is Prednisilone. This is a steroid tablet which again dampens down the inflammation in my lungs. The dose I take varies depending on how well my asthma is controlled. If I have an acute episode I will be given 40mg and then reduce as I see fit normally by 5mg every week down to my maintenance dose of 14mg. This drug is one I love to hate. It is really good for when my asthma is really bad but it does with some awful side effects which I need other medications to control. These are and anti emetic Cyclizine 25mg three times a day, a proton pump inhibitor which protects my stomach from too much acid called Lanzoprazole which I take 30mg twice a day, I also take Calci Chew D3 Forte twice a day which helps t protect my bones as one of the side effects from prednisilone is bone thinning. The D3 Forte part increases the vitamin D level in my blood which many asthmatics can lack. Prednisilone also gives me very bad restless legs which I take Amitriptyline 20mg at night as my restless legs are worse at night.

Other tablets specifically for my asthma are Theophylline (Uniphyllin) which is a slightly old style drug which requires close monitoring as you need to adjust the dose to get a therapuetic dose. Too much can make you toxic and very unwell and subtherapuetic will result in less asthma control. I take 300mg twice a day as it is a modified release tablet and taken every 12hours to maintain your blood serum level. It is difficult to explain how it works. It also has some adverse side effects which I take the above tablets for. Another one is Montelukast (Singulair) which is leukotriene receptor antagonist. It works by blocking a substance called leukotriene, which helps to decrease certain asthma and allergy symptoms.

A big part of my asthma is allergies associated with it and hay fever. I take three different anti histamines. Fexofenadine (Telfast) 180mg once a day in the morning, Citirizine 10mg once a day and at night I take Chlorophenamine 4mg. I take this at night as it has a bit of a sedating effect which is not good during the day.

I also take painkillers everyday at the lowest dose possible although this has to get increased when I am struggling with my chest. I get a lot of pain in my lower left lung where I have had repeated infections and have a lot of muscular pain as well as previous cracked ribs. For this pain I take Nefopam 30mg three times a day. This can be increased up to 90mg three times a day but I don’t want to take a high dose. I also take CoCodamol. During the day I take Co-Codamol 8/500 x2 three ties a day as it can make me feel a bit dopey but at night I take 30/500 x2 at night. I need to take Macragol (Laxido) sachet either once or twice a day as co-codamol can cause you to become constipated.

Its quite a lot of medication. I m really lucky that i have a fantastic pharmacist who has set up a dosette box for me so I don’t need to have boxes and boxes of pills. I just collect a tray once a week from my chemist and it has all my pills in it ready for me!

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Every three months I have a Depo Provera Injections which maintains my hormones at a constant level as we worked out my periods made my asthma worse so by keeping hormones at a constant level this helped.

I regularly require antibiotics such as Amoxicillin or Doxycycline for chest infections and if presenting with an acute attack am given IV Magnesium, IV Hydrocortisone and IV Aminophylline or Salbutamol.

Just now I am at the end of my tether with my health and have asked my consultant in a desperate plea to see if I could try Methotrexate as a steroid sparing agent. I don’t care about the side effects I just want some life back. This medication is known as a steroid sparing drug which can help people come off prednisilone. I need to wait and see if she thinks this is a good idea or not. I need to do something as I can’t stay as I am.