Tag Archives: chronic pain

Weighing up the benefits

I’ve written previously that, although recovered from anorexia, I continue to struggle with body image and thoughts about my weight etc. I currently have a very difficult decision to make that brings up an important issue frequently faced by people with chronic illness.

Balancing benefits with side effects of medication.

I’ve been on many psychiatric medications in my time, some more beneficial than others. Each time I’ve been up against the decision to try something new, I have point blank refused to take medication with a common side effect of weight gain. A lot of psychiatric medications have a side effect profile that impacts the gut/brain axis, nausea, diarrhea or constipation are very common. Many psychiatric medication increase appetite, which in turn leads to weight gain. Some medications appear to have a near 100% incidence of weight gain as a side effects and I know this would have an incredibly negative impact on my mood and overall mental wellbeing.

I’m currently very mentally well. However, it’s my physical health that’s letting me down! Due to degeneration in my spine I get a lot of pain in my neck, back, across my shoulders and down my arms. This pain, at times, is near unbearable – I say “near unbearable” because, I can bear it, I do bear it, every single day, I get up, get dressed, go to work and most people wouldn’t know I’m in any pain at all.

Painful spine

When I was last seen in the pain clinic (in May) I was advised to try new medication and I was put on the waiting list for anesthetic and steroid injections. I hoped the injections would provide a longer term solution that would mean I wouldn’t have to rely on daily tablets so I decided to hold off making decisions about new mediations. Unfortunately, other than making me feel as though I’d been run over by a sewing machine, the 24 injections I had in my neck and back had no impact! While I await further advice about further intrusive management, I feel I have no option but to review my medication regime.

Medication in hand

The fact that I do bear my pain, doesn’t mean it’s easy – it feels, at times, as though I’m on the edge of coping. What I’d love to do on the majority of days is stay in bed, close my eyes and sleep the pain away; but one of the cruelest things about chronic pain is that it stops you sleeping! Just when your body could do with the time to rest and repair I get a mixture of gnawing/gripping, stabbing (as though I’m actually being stabbed) and electric shocks of pain across my back and down my arms. The best thing I do each day is just get on with my life and keep distracted!

The problem I have with weight gain is difficult to put into words, except to say, it would feel as unbearable as the physical pain I feel in my back and shoulders.

For the neuropathic pain I experience (caused by bone spurs pressing on nerves), a group of drugs called gabapentinoids is recommended.

I’ve read studies quoting between 10-80% people taking gabapentin experience weight gain. This is via a variety of mechanisms: decreased metabolic rate, water retention, increased appetite and decreased motivation to exercise being the major causes. Even in the worst case (a study looking at high dose gabapentin for epilepsy), there’s still a 20% I will not experience weight gain but this may require high levels of self-discipline not to eat more than my metabolism requires and to maintain my exercise regime. But I cannot hold onto this as a guarantee, the maths isn’t on my side!

Maybe I can use this as an opportunity to value my quality of life over what I think about my body? Maybe I can use this as an opportunity to stop valuing myself based on the number on the scale? I know this would be the ideal but it’s not as though I can flick and switch!

Stepping on bathroom scale with tape measure

The struggle is that, the gabapentinoid may not even decrease my pain! I may agonise over this decision, try the medication and it have no or little impact! Worse still, I may experience side effects without any benefit!

People with chronic illness are often faced with decisions such as these. Do the benefits of the treatment outweigh the costs? Common side effects that need to be considered include: drowsiness, headaches, weakness, insomnia, constipation or diarrhea.

Symptoms of chronic illness are usually fairly complex and the question of balancing side effects generally isn’t straight forward. For me, the question is:

“Is my back pain bad enough to risk sides effects that may cause a different type of pain and impact my mental health?” Or can I keep going with the status quo? As much of a struggle as it is, I know where I stand.

Trying to manage symptoms of irritable bowel syndrome can involves multiple medication. One may reduce severe pain and bloating, meaning it’s possible to get out of bed and function but the side effects of urgency (when you need to go you need to go) may be incredibly inconvenient. Of course, one symptom of IBS can be urgency so is it possible to know the drug is causing the symptom?

Painful bowel symptoms

Taking a medication for chronic migraines may mean the sufferer is no longer confined to a quiet darkened room for 1-3 days twice a week but are the side effects of drowsiness and poor concentration 24/7 an appropriate pay off?

Weighing up the benefits against the side effects can be a laborious process that involves a lot of trial and error. The process is often complicated by the side effects being similar to the symptoms of the illness! Just because you experience something new, doesn’t automatically mean the medication is producing the symptom or that the medication isn’t working! There are horror stories of (for example) psychiatric medications causing suicidal ideation but instead of fearing the sensationalistic and inflammatory headlines, what we need to remember is that close monitoring by medication professionals is important when introducing new medications.

Please don’t be put off trying new medications. Of course we need to consider the side effects but even common side effects usual only affect 1 in 10 people.

I’m going to try the new medications and my GP is going to help with close monitoring of the impact, I’ll keep you posted!

“You’re so lucky!” Really?! Am I really?!

Teensy bit of a rant alert…!
If I happen to mention that I work part time, people, more often than not say “wow, you’re so lucky!” When I’m heading out of work early afternoon on a Thursday, wishing everyone a “good weekend”, people say “you’re so lucky” with a tinge of envy.
I must say, I’m incredibly fortunate that my husband and I are in a position where we can afford for me to bring in a part time wage but I’m not sure where luck comes into that. My husband has worked very hard to get a good job and he continues to work hard to bring home a comfortable wage.
I wonder if people forget that I only actually get paid for the work I do, it’s not like my company has said “yeah, we’ll keep paying you full time but you don’t have to come in every day”! I’m not on much above the hourly living wage for, what can be, a pretty full on job – and this is pro rata!
There are many reasons why I am part time, the one that benefits me the most is that I have time to look after my health. I have had serious mental health problems and currently suffer from arthritis and fibromyalgia so I live to constant severe pain and punishing fatigue. Working full time, I had limited time to look after my health, I need to make time for regular exercise/physio session and plenty of time out.
Lots of people can manage their chronic illnesses by taking a few pills – I do have a lot of pills to that but I also have to do regular exercise sessions, this take quite a bit of time out of my day and just like you’d never expect someone to miss a few days of their pills – nor can I miss a few days of my exercise regime.
When working full time, it was really hard to physically fit exercise sessions into my day, let alone feel motivated to do it because work was taking such a toll on my mind and my body. If I did manage to fit in a session, it was usually at the expense of a social engagement or other activity I would have liked to have done.
So, in order to properly look after my health, working part time is our current solution, if I continued full time, chances are, I was heading for a crisis and would have needed me to take time of work sick and when it comes to chronic illness, this may have led to me being off work permanently.
So, if “lucky” is, waking up with fewer spoons than other people, being in constant physical pain, struggling with brain fog and pervasive fatigue (but having to go to work anyway) and having to go to the gym 5 times a week to manage the symptoms of my chronic illness, then yeah, I guess I am, very lucky!

When we stop talking about our pain

The other day, I read something that really struck home:

“You don’t learn to live with pain, you just learn to stop talking about it”

When an injury first occurs or before a chronic illness is diagnosed, we talk about our symptoms, if they’re worrying us, we have no problem saying “I’ve got a splitting headache again” or “My tummy ache’s not going away” or “The cold really affects my joints” but once you’ve got a diagnosis and are managing (with medication or otherwise) as best as you can, there seems little point to keep going on about it…this is something that seems to happen naturally but it’s a tricky thing that isn’t always the best thing.
One of my husband’s friends was having terrible back trouble a while back, as fellow Christians we were praying for him as he made decisions about treatment including the possibility of invasive surgery. After a while, I asked my husband how his friend was, he said he didn’t know – we didn’t know if that was because his back was better (unlikely) or he’d just stopped talking about it.
I have chronic pain in my neck, back and shoulders and have done for many years. This is due to spondylosis in my spine and fibromyalgia affecting all joints and soft tissues. Spondylosis is diagnosed with MRI and is a degenerative bone condition causing pain, including periods of inflammation and osteophyte (bone spur) growth, which press on nerves etc. Fibromyalgia is a condition diagnosed by ruling out all other connective tissue disorders which causes tender/trigger points and generalised pain and fatigue. I also have arthritis in my ankles which causes pain with every step I take.
I used to complain quite a lot, the conditions I have are difficult to manage, especially in someone “so young”, as my orthopaedic surgeon told me! I take regular pain killers, do physio, do regular exercise, get regular sleep and do relaxation techniques.
The other day my husband asked how my pain was, commenting that I’d not said anything about it for a while. I said that it was ‘as usual’ – I hate complaining, and I hate lying so it just is what it is!
I have come to realise I may have a low pain threshold (ie I feel pain sooner than someone else) but I have an incredibly high pain tolerance – I can put up with a lot of pain and still go about my daily life, not that it doesn’t bother me, just that I don’t let it stop me. This, of course, take a lot of energy which contributes to the fatigue I get anyway!
I find it difficult to talk about my pain as most people, when they hear about it, want to help in some way, or at least say something useful, sympathetic or supportive. But there isn’t really anything anyone can say or do to help. If I do mention it, it generally feels quite awkward and I defer to lying, along the lines of “it’s fine, I’m managing ok” or “I have good days and bad days” – which is technically true but my good days are still about 5-6/10 on the pain scale…
Normal for me is pretty bad but who wants to hear that every time I see them?!
If I don’t talk about it, people don’t realise that I’m suffering, assume I’m fine and don’t understand when I need to leave events to go to bed, if I’m distracted or if I don’t offer to help (set up tables, move chairs etc). I worry that people won’t believe me because I ‘look normal’ or they will just think I’m lazy or a flake!
The thing is, I can act normal, as I did the other day in breakaway training at work, but I pay for it afterwards. That evening, I could hardly think, my head felt like it was completely split open, my shoulders and arms were stiff and I coulnd’t move them without excruciating pain. Hot pokers and crushing vices could probably reproduce the pain fairly accurately.
I have read some fabulous books by Paul Brand and Philip Yancy about how we’re meant to listen to our pain, not get angry about it or wish we didn’t have it – it tells us something is wrong, if we didn’t feel it we wouldn’t pull our hand away from the flame or take care of a brewing illness.
Unfortunately when it comes to fibro, the thing that’s wrong is the pain communication system – this means, I feel pain when I shouldn’t. Pain from spondylosis is due to physical degeneration or deformities – I listen to my pain and do not push my body beyond it’s limits too often but it’s incredibly frustrating when my brain is active and wants to be doing, but my body just can’t.
I’m not looking for people to feel sorry for me (that’s fairly pointless!) – I’m just saying it how it is.
So it’s a difficult balance, talking about the pain doesn’t solve anything and makes other people feel helpless or awkward, not talking about it means people don’t know the truth, may think I’m rude or acting strangely.
So, perhaps we should try to remember, if someone has a chronic condition, no matter what it is, diabetes, arthritis, mental illness, bowel or kidney disorders, they are managing it every single day. They may not talk about it but that doesn’t mean they’re fine, it doesn’t mean they’re not suffering just as much as when they do talk about it, all it means is that today, they’re not talking about it.
Sometimes I wish my conditions were more visible but most of the time I’m glad I can choose who I tell. I guess, my health is my business and I maybe I shouldn’t worry about what other people think.