My 2013 survey showed just under 80% of people with HSP had back pain, with similar results in my 2018 survey. I looked in more detail at pain in my 2017 survey, where around 80% of people get some pain with their HSP. Of these, over 95% have some pain in their legs, over 90% have pain in their feet, and over 80% of have some pain in their back and hips.
There are a few published papers on this:
Out of 109 people with HSP in The Netherlands with pure HSP in 2020, 72% reported leg and/or back pain: Experienced complaints, activity limitations and loss of motor capacities in patients with pure hereditary spastic paraplegia: a web-based survey in the Netherlands -
Depression and pain were significantly increased in a study of 118 SPG4 patients in Germany in 2020: Non-motor Symptoms Are Relevant and Possibly Treatable in Hereditary Spastic Paraplegia Type 4 (SPG4) - https://pubmed.ncbi.nlm.nih.gov/31646384/
A study of 108 people with HSP in Norway in 2016 reports that those with HSP more frequently report musculoskeletal pain compared with controls: Health survey of adults with hereditary spastic paraparesis compared to population study controls - https://ojrd.biomedcentral.com/articles/10.1186/s13023-016-0469-0
34 patients with SPG4 in Brazil reported higher pain, fatigue and depression than controls in 2016: Non-motor Symptoms in Patients With Hereditary Spastic Paraplegia Caused by SPG4 Mutations - https://pubmed.ncbi.nlm.nih.gov/26806216/.
My 2017 survey showed that most people use medication (either prescription or over the counter) or physical therapy (either exercise, manipulation or massage) to relieve pain.
Heat and cold therapy, relaxation techniques and TENS machines are other methods used by at least 10% of respondents. The average number of methods used to treat pain is 3, showing that most people use more than one method to control their pain.
There were no common trends between the choice of medication and use of mobility aids, with all of the most common methods of pain control being used across the full range of mobility scores.
Furthermore, people who do not get pain from HSP have a better wellbeing than those who get pain from HSP.
My 2019 survey looked at medication. Respondents taking medicine for pain form the second largest group of around one fifth of all the medication being taken (the biggest group being medication for spasticity and spasms). The pain medication being taken falls into two main groups, one group is for pain, whereas the other group is for nerve pain, pain from spasms, and other HSP symptoms.
The first group (pain) includes common pain medication, some of which is available over the counter, e.g. paracetamol and ibuprofen, and others are prescription medication like fentanyl and morphine. Further analysis of that group was not undertaken.
The second group includes some medications that are used to treat effects of HSP, and these include:
Pregabalin/ Lyrica, Duloxetine, Pramipexole, Oxycodone, Nabilone and Nabiximols. Whilst there are no papers reporting these drugs for use in HSP all but Nabilone are indicated as potential treatments on some HSP websites.
Links to my surveys mentioned:
2013: http://hspjourney.blogspot.co.uk/2014/02/hsp-survey-results.html
2017: http://hspjourney.blogspot.com/2018/02/2017-survey-results.html
2018: https://hspjourney.blogspot.com/2019/02/2018-survey-results.html
2019: http://hspjourney.blogspot.com/2020/02/2019-survey-results.html
2017: http://hspjourney.blogspot.com/2018/02/2017-survey-results.html
2018: https://hspjourney.blogspot.com/2019/02/2018-survey-results.html
2019: http://hspjourney.blogspot.com/2020/02/2019-survey-results.html
Until recently pain as an HSP symptom was routinely experienced by people with HSP but there were no published papers identifying this as a symptom to the wider healthcare community.
Fortunately this issue is beginning to be addressed - the 2020 paper from Germany concludes: "We recommend that clinicians regularly screen for depression, pain, and fatigue and ask for bladder, sexual, and defecation problems to recognize and treat non-motor symptoms accordingly to improve quality of life in patients with SPG4." It is my opinion that this approach would work well with other types of HSP as well.
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