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

Hypermobility & Ehlers Danlos Syndrome

ME Essential Spring 2023

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

ME Essential Spring 2023

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

ME Essential Winter 2022

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

ME Essential Winter 2022

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!

Symptoms: Joint Pain and Irritable Bowel

ME Essential Winter 2021

I know that in addition to all the classic diagnostic symptoms of ME there are a considerable number of other symptoms that can sometimes occur. But should we always go and see our GP every time a new symptom appears? Or when an existing symptom changes character or gets significantly worse? In my case, after several years of having ME, I’ve now developed intermittent joint pains (without any swelling or redness) and bowel symptoms (mainly loose motions with occasional stomach cramps and bloating) that sound like irritable bowel syndrome. I haven’t yet mentioned these symptoms to my new GP – who tends to blame everything on ME! I don’t want to be seen as a hypochondriac, turning up at the doctors every time I don’t feel well. At the same time, I don’t want to find that a new and treatable medical condition is being missed

Dental: Pain

ME Essential Summer 2021

I’m very prone to pain in my teeth. When I mentioned this to my OT she said that she hadn’t heard of that before as an ME/CFS symptom but could be connected to the central nervous system. My dentist tends to say that if there was a problem it would be obvious in a particular tooth or it could be tooth grinding especially at night. I don’t feel it is this as I tend to sleep with my mouth open and I don’t wake up with pain usually but it will come on during the day. Symptoms are varied ranging from a general tension and pressure, generalised aching pain in either the top or bottom teeth, or throbbing pain in certain teeth. The deep throbbing does tend to be in “ vulnerable “ teeth i.e. ones with deep fillings.

Sometimes I will get a very bad pain e.g. back molar on right lower side then the exact same tooth throbs on the other side. Of course I realise I need to discuss this again with my dentist at the next check up. However, I wondered if people with ME/CFS are more susceptible to tooth pain generally? Have even wondered if it’s stress? It’s been particularly bad these last few months and I can’t say I’ve been any more stressed than usual!

Addison's Disease

ME Essential Summer 2020

I was interested to see the item on Addison’s disease in the Winter issue of ME Essential as I have a close friend with this rare disease and it obviously has some interesting symptom overlaps with ME/CFS. So is there any evidence that adrenal gland failure, and steroid hormone production, could also be involved in ME/CFS? If so, would it be worth looking at steroids as a possible form of treatment for ME/CFS?

Symptom: Nerve Pain

ME Essential Winter 2020

Like most people with ME/CFS, pain is a fairly constant and frustrating symptom. But this has become more persistent and severe over the past few months. My GP has prescribed various pain relieving drugs – including low doses of amitriptyline and gabapentin – none of which has had much effect. As well as the pain, which often has a burning quality to it, the areas around it sometimes feel numb and strange. I’m starting to feel quite depressed as a result – is there anything else that could be done to help?

Treatment: Drugs and Weight Gain

ME Essential Spring 2018

Although taking a low dose amitriptyline has been very useful in reducing some of my pain and helping to correct my very erratic sleep pattern (frequent wakening during the night) I’ve put on a considerable amount of weight since taking this drug. My GP says that weight gain is a well recognised side-effect with this type of drug and that it can also occur with other drugs that are used for pain relief. I know from talking to other people with ME that weight gain can be a major problem with some drug treatments for ME. But why is this so? And are there any solutions?

Heel Pain

ME Essential Spring 2017

I've been suffering from quite a lot of pain in the heel area of my right foot over the past few months. It's often worse when I wake up. The left foot is OK. I also have muscle pain but don't have any joint pain.

Could this be related to ME/CFS?

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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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). 

Please note: The answers comprising Medical Matters were accurate at the time of printing. A publication date accompanies all listed entries. We will endeavour to keep Medical Matters updated as information changes, but if you would like to comment, please email: meconnect@meassociation.org.uk

MEDICAL DISCLAIMER

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.

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