You don’t often cover more elderly people with ME/CFS – so I’d like to pass on a note of warning about a serious health condition that causes ME/CFS-like symptoms. My wife, who is in her early sixties, started to have really quite severe muscle and joint pains and in places – shoulders and hips – where she didn’t normally have pain. We put it down to ME/CFS to start with and so did the GP. But when the pain got worse, and painkillers weren’t working, the GP did some blood tests – one of which showed a high level of inflammation – and she was diagnosed with an inflammatory muscle condition called Polymyalgia. Is polymyalgia more common in people with ME/CFS? And is this something that should be ruled out in elderly people before a diagnosis of ME/CFS is being made?
Firstly, I’m very sorry to read about your wife developing polymyalgia in addition to ME/CFS. This can be a very painful and disabling condition and, as you correctly point out, it has muscle symptoms that can overlap whih can mean the diagnosis is not always made as quickly as it should be.
In the ME Association's ME/CFS/PVFS Clinical & Research Guide (also known as the ‘purple book') I include polymyalgia in the list of conditions that need to be considered when a diagnosis of ME/CFS is being made, or when someone with ME/CFS in an older age group has a deterioration in muscle-related symptoms for no obvious reason. As far as any direct links between ME/ CFS and polymyalgia are concerned – there is no research evidence to indicate that polmyalgia is more common in people with ME/CFS, or that there is an increased risk of developing polymyalgia if you have ME/CFS.
Finally, prompt use of moderately high steroid medication (which is often continued for a prolonged period of time) is a very important part of the management of polymyalgia. And if symptoms are not under control, this should trigger a visit to the GP or consultant to discuss the situation and check whether the current dose is appropriate.
Key Facts on Polymalgia Rheumatica
The most common symptom of polymyalgia rheumatica (PMR) is pain and stiffness in the shoulder muscles developing quickly over a few days or weeks. There may also be pain in the neck and hips. Both sides of the body are affected. Stiffness is worse first thing in the morning and improves after about 45 minutes as activity increases Other symptoms may include feeling very tired, loss of appetite and weight loss and depression.
When to get medical advice:
See your GP if you have symptoms of pain and stiffness that last longer than a week. When to get immediate medical advice: Contact your GP immediately, or call NHS 111 or your nearest urgent care service, if you have been diagnosed with polymyalgia rheumatica (or it’s suspected) and you suddenly develop a severe headache, pain or cramping in the jaw muscles, pain in the tongue when chewing or visual loss/disturbances. These symptoms may indicate a more serious condition called giant cell arteritis/temporal arteritis.
Information provided by The ME Association should not be construed as medical advice. Don't assume any new or worsened symptoms are simply the result of having ME/CFS or Long Covid. We recommend that any information you deem relevant is discussed with your NHS GP as soon as possible. It is important that you seek personalised medical advice from the GP who is in charge of your care and who knows you well.