Research study establishes the link
It will come as no surprise to many with HSP, their families, loved ones and others who care for them that fatigue, pain and depression occur frequently and often severely in HSPers compared with healthy, non-HSP-affected people.
The statistical difference between the 2 populations is at a ‘highly significant’ level.
This supports the findings of an earlier study from 2009 where it was found that over half the population of HSPers in the study were depressed. That study also linked severity of depression with loss of mobility.
Even though these results seem self-evident, don’t underestimate the importance of this research as it establishes an evidence base for these outcomes associated with having HSP. Your doctors as well as allied health professionals such as your physio now have a good clinical reason to treat, or refer for treatment of, these outcomes of fatigue, pain and depression.
These results also change the nature of any request you might make of your doctor or allied health professional to investigate these issues when you report them, now that they are medically established by this research as different from non-HSPers reporting fatigue, pain or depression.
BACKGROUND AND PURPOSE:
Non-motor manifestations are frequently overlooked in degenerative disorders and little is known about their frequency and clinical relevance in SPG4 hereditary spastic paraplegia (SPG4-HSP).
Thirty patients with SPG4-HSP and 30 healthy controls answered the Modified Fatigue Impact Scale, Epworth Sleepiness Scale, Brief Pain Inventory and Beck Depression Inventory. Student’s t test was used to compare groups and linear regression was used to assess correlations.
Patients had higher fatigue scores than controls (31.0 ± 16.5 vs. 14.5 ± 16.0, P = 0.002) as well as pain (3.4 ± 2.7 vs. 1.0 ± 1.6, P = 0.001) and depression (12.7 ± 8.9 vs. 4.4 ± 3.8, P < 0.001, respectively). Fatigue was associated with depression and possibly with disease severity (P = 0.008 and 0.07, respectively).
Fatigue, pain and depression are frequent and often severe manifestations in patients with SPG4-HSP.
SOURCE: Eur J Neurol. 2016 Feb;23(2):408-11. doi: 10.1111/ene.12839. © 2016 EAN. PMID: 26806216 [PubMed – in process]
Non-motor symptoms in patients with hereditary spastic paraplegia caused by SPG4 mutations.
Servelhere KR1, Faber I1, Saute JA2, Moscovich M3, D’Abreu A1, Jardim LB2, Teive HA3, Lopes-Cendes I4, Franca MC Jr1.
1Department of Neurology, University of Campinas – UNICAMP, Campinas, SP, Brazil.
2Medical Genetics Service, Federal University of Rio Grande do Sul – UFRGS, Porto Alegre, RS, Brazil.
3Neurology Service, Federal University of Paraná – UFPR, Curitiba, PR, Brazil.
4Department of Medical Genetics, University of Campinas – UNICAMP, Campinas, SP, Brazil.
Thank god I have the mild form of Hsp, it has only affected my legs so far, but can not run anymore, but can walk and work so far, but have noticed in the last year that my balance is not so great now and have just started new job and have noticed a lot of people have commented are you limping and my comment back is that it is just the way I walk with my hsp. But those people who comment have the guts to say, as I have gone through a lot of jobs and do not understand why they knock me back, but that could be employers that do not know me and notice me maybe limping or something and do not know why and do not ask. But I do not mention my disorder as I think I am capable of working even though I maybe not as fast as when I was young but that is my age now but I know the job really well as long as I do not have to run around and lift heavy things[work in kitchen jobs]. Have noticed I do get tired more frequently but thought that might be other reasons, as I am going through menopause and stress can cause a lot of issues. Nothing wrong with a nanna nap in the arvo and it does wonders. It is hard to explain and understand by loved ones but I trudge on with my hsp and discover new things all the time about how to cope, but I am a very positive person and will not let anyone bring me down. But I know not everyone is like me and everyone copes their own way and I intend to keep informed about it as I used to be very active but not now and have to cope with that. Good luck everyone with what you have and I hope you all cope with what you’ve got.