We have considered previously both the positive and negative role that food can play in the lives of people suffering CRPS and other forms of chronic pain.
Certainly, there are foods which can be beneficial and others best avoided altogether. Weight gain is a common problem for many suffering chronic pain and we have also considered food in the context of dental health and the particular problems faced in this regard by people suffering CRPS.
However, for the reason explained below, our client Paul, a CRPS sufferer, experienced significant weight loss and this resulted in its own very particular problems.
Following an accident at work, Paul developed CRPS affecting his left foot and lower leg. Like most, following considerable trial and error, he eventually found the cocktail of medication that provided him with optimum relief of his symptoms.
To a greater or lesser extent, each medication came with its own particular side-effects, which was to be expected. However, when Fentanyl patches were added to the mix, Paul experienced something completely unexpected.
“I’ve always had a really good appetite. I could eat anything and not put any weight on but I’ve always been very active and I suppose I burn it off quickly” he said.
With limited mobility following his accident that changed rapidly and he started to gain some weight.
“For the first time ever I was having to watch what I ate, which I found very difficult. But then I started on the Fentanyl patches. At first they put me on quite a low dose, I think 13.5 microgram patches, which looking back now didn’t affect my appetite, but then they fairly quickly increased the dose to 37.5 micrograms and my appetite just disappeared. I tried to eat but I had basically no appetite at all. At the time though, I hadn’t put two and two together and didn’t realise it was down to the Fentanyl.”
What is Fentanyl?
Fentanyl is a potent, synthetic opioid which is around 100 times stronger than morphine. It is commonly administered for pain relief by way of skin patches.
Side-effects from taking this painkiller can vary considerably between individuals but loss of appetite is reported by some.
As soon as he started on the increased dose of Fentanyl, Paul’s weight began to plummet. From being around 13 stone, within a relatively short time he was down to a little over 9 stone. “I was skin and bone. Everyone was worried, particularly my wife” he said. “I had no energy and this was also making my mood far worse. I felt unwell which was probably down to my body not getting the nutrients it needs.”
An additional factor was that a few months before starting on Fentanyl, Paul had had a spinal cord stimulator implanted. As his weight reduced, the loss of so much of the body tissue surrounding the stimulator meant that it now protruded considerably and noticeably. He was unable to tolerate any pressure in the area around the stimulator, which was compounded by the fact that as it was protruding, it was knocked easily.
In addition, the electrical leads running from the stimulator to his spine moved and started to bunch under his skin. Having lost pretty much all of the modest pain-relieving benefit he had gained from the stimulator, ultimately he accepted the advice of his pain specialist to have it removed.
Early referral to a dietician did not really help. Advice regarding the type and quantity of food needed to gain weight is of limited value if you don’t have the appetite to eat it. Even specialist, high-energy shakes failed to address the problem.
Ultimately, his consultant made the connection and he was advised to stop taking the Fentanyl. “It took a few days to get it out of my system but it was incredible; my appetite came back quite quickly. By then the Fentanyl wasn’t having much of an effect anyway, more like a small top up, so from a pain point of view it wasn’t a big problem to stop it.”
Paul’s food intake and his weight have increased quickly and he has recently passed 12 stone.
“I’m now pretty much back where I was and having to be a bit careful again about what I eat. Getting around is still a big problem so any exercise as such I get is fairly minimal – certainly only a fraction of what it used to be. In myself, I’m feeling far more with it and have more energy. I’m also less snappy with the family which has got to be good thing!”
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About the author
Leading Complex Regional Pain Syndrome (CRPS) solicitor Richard Lowes co-founded the first legal team in the UK specialising in representing people suffering CRPS and other debilitating chronic pain conditions. Richard is a popular speaker on the subject of chronic pain in litigation and remains an inveterate blogger. You may contact Richard direct at firstname.lastname@example.org