MEDICAL MATTERS
- Medical Matters features questions asked by Members of the ME Association on health-related topics.
- Dr Charles Shepherd and the ME Association's other advisers answer these questions by sharing their expert knowledge.
- Medical Matters is based on the popular ‘Ask the Doctor’ series in ME Essential magazine.
- It is a free resource that supplements the detailed information contained in the full range of literature that can be found in the website shop.
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Questions in the Category: Pain
Allodynia – increased sensitivity to touch and movement
I have just been told that as part of ME I have a condition called allodynia which, as I understand it, affects the brain and nerves. As a result, my brain is detecting pain which is often caused by touch or sometimes movement. The painkillers that I'm currently taking – ibuprofen and paracetamol – don't really help. Is allodynia more common in people with ME? And are there any other drug treatments that I could try? I should add that I also suffer from occasional migraine-type headaches.
Neuropathic pain
Please could you explain what is meant by neuropathic pain? Is it different to ordinary pain? And is the treatment any different?
CBD oil for pain relief
I keep reading about people with ME/CFS who are using cannabis oil (CBD oil) for pain relief – with varying degrees of benefit. My GP said that he isn’t allowed to prescribe cannabis oil for pain relief and he wasn’t convinced by the claims that are being made. So is there any evidence that CBD oil can help with pain relief? And given the link to cannabis is it safe to try if you have ME/CFS?
Bone pain and ME/CFS
I have just been reading the new MEA information leaflet on pain management. This covers muscle, joint and nerve (neuropathic) pain ME/CFS. But why isn’t there any mention of bone pain? I have hip pain that was eventually diagnosed as being due to osteomalacia and vitamin D deficiency – which I understand is more common in ME. This is now being treated because my doctors felt I was at increased risk of having a fracture in the hip bone.
Pregabalin (Lyrica)
I have been reading some disturbing newspaper reports about the misuse of pregabalin and it looks as though there may be further restriction on doctors about prescribing this drug. I know that some people with ME/CFS have had major problems with side effects. But there are others like myself who have found pregabalin to be very helpful for pain relief where other drugs have failed. Do you think that my GP will be able to continue prescribing it?
Alternative treatments: Flotation tank
A friend of mine who has a painful rheumatic disease has been using a local floatation tank to help relieve her pain. I have quite a lot of ME related joint and muscle pain and the drugs that have been prescribed are of very limited benefit.
Is this something that’s worth trying for pain in ME? Are there any potential side-effects?
Hypermobility & Ehlers Danlos Syndrome
My daughter, who is now in her early twenties, has had ME/CFS since being a teenager. We have always felt that her joints are more flexible than normal. She often has strains and sprains and has dislocated her knee in the past. Her doctor is now querying whether she may now have a hypermobile joint condition called Ehlers Danlos Syndrome. Are there any links between hypermobile joints and ME/CFS? Or is this just a coincidence?
Test: Synacthen
A blood test has shown that I have a low level of the hormone cortisol. As a result I am now being referred to hospital to have a synacthen test to assess my adrenal gland function. As this test involves the use of a drug that stimulates steroid production is it likely to cause any problems for someone with ME/CFS? Or could the use of a steroid be a way of treating ME/CFS?
Treatment: Bromelain
I have read several newspaper articles about the use of this natural plant-based treatment for pain relief, especially in arthritis and muscle soreness. But is there any evidence that it can help to reduce muscle pain in ME? Because none of the drug treatments that I have been prescribed by my GP have helped.
Post-Viral Fatigue Syndrome, Myalgic Encephalomyelitis or Encephalopathy, Chronic Fatigue Syndrome, and Long Covid
Please can you define what PVFS, ME/CFS, and Long Covid mean. I am having difficulty determining if they are the same disease or different. Thank you!
Dr Charles Shepherd
Dr Shepherd has been Trustee and Hon. Medical Adviser to the ME Association for more than 40 years. He is integral to the charity's activities and provides information and support based on his professional knowledge, personal experience as a doctor with ME/CFS, and the understanding gained from helping many thousands of people with the condition. He was a member of the comittee responsible for the 2021 NICE Clinical Guideline and is a recognised expert on ME/CFS in the UK. His knowledge extends to Post-Viral Fatigue Syndromes (PVFS), Myalgic Encephalopathy/Encephalomyelitis (ME), Chronic Fatigue Syndrome (CFS), and Post-Acute Sequelae of SARS-CoV-2 infection (PASC) or Long Covid.
If you have questions about ME/CFS or Long Covid, you can:
- Review the free information in the What is ME/CFS section of the website, and the free Covid-19 and Long Covid information in the website shop.
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- Join the ME Association as a member and you'll receive the highly-rated ME Essential magazine, and you can ask questions of the charity’s expert advisers including Dr Shepherd.
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Medical Matters is based on the popular ‘Ask the Doctor‘ series featured in the highly-regarded member’s magazine, ME Essential, and in the healthcare professional magazine, ME Medical. Both are produced by the ME Association and published as hard-copy magazines every 3 months and sent to members and healthcare professionals by post to home or business addresses.
If you are an HCP you can sign-up here to receive ME Medical magazine (people with ME/CFS can also nominate their HCP by completing the sign-up form).
