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.
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.
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!
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?
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!