Nelson, Walega and McCarthy, from the Department of Anesthesiology, Northwestern University Feinberg School of Medicine, Chicago, Illinois, have recently looked at pain and pain management in people with Marfan syndrome. Their findings are strikingly similar to those the HMSA found in 2012 amongst people with EDS / JHS.
Working with the Marfan Foundation the researchers were able to survey 993 patients. Here’s what they found:
- 67% (two-thirds) reported pain in the preceding 7 days.
- The “average daily pain” was scored at 4 on a 1-10 pain scale; and “worst pain” on average at 7.
- The “worst pain” experienced was ≥4 in 93% of respondents.
- Analgesic use to control pain related to Marfan syndrome was reported in 56% of respondents. However half of these patients felt that they were not getting good pain relief from these medications
- Few patients underwent interventional procedures (e.g. spinal injections) for pain control, despite intractable back and joint pain being common.
- A majority (52%) of respondents rated “chronic pain care” from their physicians as either “poor” or “fair”.
The researchers conclude that pain in Marfan patients is underestimated and likely under treated. They propose a need for improved patient and medical provider awareness of pain management options, including the development of effective algorithms to treat pain in Marfan patients.
I would add that this conclusion is supported by similar observation in EDS / JHS, and that in general there is a much greater need for awareness of chronic and complex symptoms and their impact on well-being in all the hereditary disorders of connective tissue.
Dr A Hakim. Trustee and Chief Medical Advisor, HMSA. February 22nd 2015.
Nelson AM(1), Walega DR, McCarthy RJ. The Incidence and Severity of Physical Pain Symptoms in Marfan Syndrome: A Survey of 993 Patients. Clin J Pain. 2015 Jan 6. [Epub ahead of print]
Hakim A. A Patient Survey of Treatment Outcomes in Joint Hypermobility Syndrome. HMSA Newsletter, 2012. p.25.
Many readers will have picked up recent news of a study from the USA that suggests there may be a link between taking anti-histamines long term and developing dementia.
The HMSA is aware that Members may be on anti-histamines for a variety of reasons.
An excellent summary of the recent news, the nature of the study, and advice for anyone concerned is provided by NHS Choices and can be accessed by clicking on the link provided at the bottom of this Post.
The HMSA Office advises that the article is read carefully before deciding whether it is necessary to consultant with your GP.
In the conclusion NHS Choices authors note that the main concern is with following medications:
- xybutynin chloride, 5mg
- chlorpheniramine maleate, 4mg
- olanzapine, 2.5mg
- meclizine hydrochloride, 25mg
- doxepin hydrochloride, 10mg
To read more please click HERE
Dr Alan J Hakim, Trustee and Chief Medical Advisor
The HMSA would like to thank members and readers for their support with this study. Recruitment has now closed following a huge response. Best Wishes, HMSA Office.
Patients’ perceptions of Cognitive Behavioural Therapy for managing chronic pain in Hypermobility Syndromes
The HMSA is pleased to endorse the following research and seeks your participation. Thank you to all those who have completed the study so far – but we really need more of you to join in.
Leoni Majer is conducting her research as a BSc Occupational Therapy student at the University of Cumbria. The aim of the research is to establish the effectiveness of Cognitive Behavioural Therapy (CBT) in helping people with Hypermobility Syndromes to manage their chronic pain. The results will be used to inform professionals who might refer to or provide psychological services in the treatment of Hypermobility Syndromes.
Leoni has devised an online questionnaire enquiring as to experiences and opinions of CBT and how this has contributed to pain management.
The HMSA gives a huge thank you to Members and readers. There was an over-whelming response to this advert, and the research team has already exceeded the number of participants needed. Best wishes, The HMSA Office.
The HMSA is happy to endorse a study being undertaken through Edinburgh Napier University. Alicia O’Neill is an undergraduate student from the School of Life, Sport & Social Sciences at the University. As part of her degree she is undertaking a research project entitled:
Life events and the Psychosocial Experience of Chronic Pain: a Qualitative study
Want to take part in research investigating the relationship between mental health symptoms and the body?
The HMSA is pleased to endorse a research project looking at the relationship between mental health symptoms and the body. The study is being undertaken through the University of Sussex and will last approx. 2 hours and will involve completing some tasks on the computer whilst having your heart rate and blood pressure recorded. We will also ask you to complete some questionnaires. You will be reimbursed for your time. This project is a collaboration between the Sussex Partnership NHS Trust & Brighton and Sussex Medical School (BSMS).
The research team are seeking male volunteers aged 18 to 65.
If you are interested please contact: Dr Jessica Eccles
firstname.lastname@example.org 01273 873818