Sensory Processing Disorder, Chronic Pain and Fatigue

Issues relating to disorders which are related to, or which may occur as a consequence of HMS. Including but not limited to: Ehlers-Danlos Syndrome, Marfans, Osteogenesis Imperfecta, Sticklers Syndrome, arthritis, depression, chronic fatigue syndrome. To include everyday problems such as IBS, eyes, teeth, etc.....

Sensory Processing Disorder, Chronic Pain and Fatigue

Postby sheppeyescapee » Sat Jun 25, 2011 3:29 pm

I have been told that my sensory problems are probably bad enough to warrant a separate diagnosis other than ASD. The thing that I was wondering about is something that was mentioned in my report from Stanmore from Dr C who mentioned that my sensory problems could be feeding into the chronic pain/fatigue. From what I can gather that the pain increases the sensitivity which then increases the pain and so on. Anyone else experience this? :think:

I tried to find a thread about this but it all seems to be aimed towards the childrens section, so if I've missed an appropriate thread I do apologise.
J - 28,student,married to the lovely Em and live with 2 cats Bilbo and Pippin. Diagnosed with Aspergers, Dyspraxia, Dyslexia, EDS-HM, Mild Asthma, Chronic Pain, Chronic Fatigue, POTS, Syncope
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Re: Sensory Processing Disorder, Chronic Pain and Fatigue

Postby madmum » Sat Jun 25, 2011 4:35 pm

My son was told this. His rheumy said it is pain amplification. He had desensitising treatment as part of his intensive physio. He also has to take regular pain relief. Not sure if this helps.
Mum to son with hms,pain amplification,migraine,plantar fascitis,ibs.lactose intolerant,hayfever and numerous allergies. I have hms,arthritis,migraine,p.o.t.s,allergies,and others too numerous to mention. Acused of being mentally ill hence.....madmum.
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Re: Sensory Processing Disorder, Chronic Pain and Fatigue

Postby Flora » Sun Jun 26, 2011 9:03 pm

I have auditory processing problems, and although I have never really thought about it, it does ring a bell for me. The days where I am struggling with pain control, are the days when I hear worse, and get overloaded with too much noise far more easily than when the pain is better controlled. I have noticed a strong link to tiredness and fatigue, and the pain issue fits in well with that. :think:
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Re: Sensory Processing Disorder, Chronic Pain and Fatigue

Postby BendyBoff » Wed Jul 06, 2011 4:18 pm

I don't have any major problems and have not ever thought about it before so have not spoken to any medical types about it but reading your post has made me think. If I am really tired/having a bad day then I need the TV to be on a much lower volume as it actually 'feels' too loud to my ears.

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Re: Sensory Processing Disorder, Chronic Pain and Fatigue

Postby Jess » Sat Jul 09, 2011 9:46 pm

I have audio proccessing disorder. when i'm more ouchy i find I have to put subtitles on the tv or turn up my ipod a wee bit more.
Though I do find having music on to turn out the pain after awhile does help, or a audiobook to try and concintrate on.
I feel like a bowl of Rice Cripsies!! I'm snap, crackling, popping everywhere!
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Re: Sensory Processing Disorder, Chronic Pain and Fatigue

Postby realrosie » Sun Jul 10, 2011 2:13 pm

I am super sensitive and even touching my skin can hurt me. I put subtitles on the t.v.too! How fun when someone gets it.My Drs. don't believe me,so I can't get pain medication to break the pain and the nerve signals just so I can get up again when the pain has me down and out. I am so happy to see parents speak up for their child. I am 52 and just got my diagnosis of EDS. I would be a different person now if I had had help when I was young. Take Care ! :)
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Re: Sensory Processing Disorder, Chronic Pain and Fatigue

Postby sheppeyescapee » Wed Nov 14, 2012 7:09 pm

Yesterday my support worker from the NAS gave me a Pearson Adolescent/Adult Sensory Profile self-assessment form to fill in. I have filled it in and I couldn't resist not looking at the scoring sheets. The questions had a symbol next to each one which corresponded to the 4 different parts of the scoring (Low Registration, Sensation Seeking, Sensory Sensitivity and Sensory Avoiding) which could then be scored on the Quadrant Grid. The results from the Quadrant Grid are then transferred to the Quadrant Summary which shows how your score compares to the average (Much Less Than Most People (--), Less Than Most People (-), Similar to Most People (=), More Than Most People (+), Much More Than Most People (++) )

My scores for the Quadrant Grid were

Low Registration (54)
Sensory Seeking (37)
Sensory Sensitivity (67)
Sensory Avoiding (59)

Quadrant Summary was

Low Registration - Much More Than Most People (++)
Sensory Seeking - Less than Most People (-)
Sensory Sensitivity - Much More than Most People (++)
Sensory Avoiding - Much More than Most People (++)

This can then be transferred to a Quadrant Profile Chart. I tried to scan it on to the computer but my printer doesn't want to co-operate.

This will then go off to the OT who will do the scoring and produce a report. It will be interesting what they have to say about those results! None of it looks that surprising to me though :lol:
J - 28,student,married to the lovely Em and live with 2 cats Bilbo and Pippin. Diagnosed with Aspergers, Dyspraxia, Dyslexia, EDS-HM, Mild Asthma, Chronic Pain, Chronic Fatigue, POTS, Syncope
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Re: Sensory Processing Disorder, Chronic Pain and Fatigue

Postby mahdryburgh » Sat Feb 02, 2013 8:29 am

Ooh, interesting! I think I am sensitive beyond just any pain sensitisation that comes with fibromyalgia/chronic pain/pain sensitisation.

I really like the idea of the "highly sensitive person" although some of the stuff written about it tips over the edge into pseudoscience for me.
It draws toghether a lot of stuff i experience, both mental and physical:

*emotional sensitivity (anxiety, depression, increased startle response, emotional lability, strong emotional response to certain drugs including getting hypomanic on corticosteroids)
*intellectual sensitivity (see the stuff on giftedness and "overexcitabilities")
and
*physical senstivity
-pain sensitivity and fibro
-muscles which tighten incredibly easily (remarked upon numerous times by various health professionals),
-Irritable Bowel Syndrome and food intolerances
-allergy to the "friendly" bacteria which live in everyone's respiratory systems
-irritable/overactive bladder
-photosensitivity (esp when i get migraines but also at other times)
-probably some degree of Auditory Processing Disorder that results in not being able to deal with multiple noise sources etc.
-caffeine hypersensitivity
-heat and cold intolerance

Also, the major finding of my sleep study was that my brain kept trying to wake me up, resulting in continuous "microarousals"? (no wonder i'm always tired despite not actually having a probelm with falling/styaing asleep on the macro level.)
*JHS dx'd Nov2012
*congenital scoliosis
*chronic pain+fatigue, fibromyalgia
*inflammatory arthritis, recurrent tendinitis/bursitis/plantar fasciitis/nerve compression injuries
*Crohn's Disease, GORD/IBS/fructose malabsorption
?dysautonomia, endometriosis?
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Re: Sensory Processing Disorder, Chronic Pain and Fatigue

Postby gila » Sat Feb 02, 2013 1:02 pm

hi mahdry :D
re the sleep thing ( and some other things in your "list") - I think you and probably your sleep doc would find this v interesting
http://vimeo.com/35766364
it s one of the talks given by various EDS/HMS specialists at the american EDS colloquium and it s on "clinical autonomic and sleep disorders in EDS" - and yep that doc, pocinki, also found that we can "wake up" ( often with us not noticing) many times a night=sleep isnt restorative and he thinks it s to do with malfunctiong autonomic system.
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Re: Sensory Processing Disorder, Chronic Pain and Fatigue

Postby mahdryburgh » Sat Feb 02, 2013 11:14 pm

gila wrote:it s one of the talks given by various EDS/HMS specialists at the american EDS colloquium and it s on "clinical autonomic and sleep disorders in EDS" - and yep that doc, pocinki, also found that we can "wake up" ( often with us not noticing) many times a night=sleep isnt restorative and he thinks it s to do with malfunctiong autonomic system.


I know, right?! I was like, "omg that's me" - the sleep architecture described looks exactly like my sleep study results. I actually don't have a follow-up with my sleep specialist (we decided to leave things as they were for now as there'd been some improvement) but I'm thinking of making one to discuss the hypermobility diagnosis and the implications of Dr Pocinki's work! (I also think I have other signs of my autonomic NS being a bit b****r, but I'm not sure how to get anyone medical to take them seriously...)
*JHS dx'd Nov2012
*congenital scoliosis
*chronic pain+fatigue, fibromyalgia
*inflammatory arthritis, recurrent tendinitis/bursitis/plantar fasciitis/nerve compression injuries
*Crohn's Disease, GORD/IBS/fructose malabsorption
?dysautonomia, endometriosis?
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Re: Sensory Processing Disorder, Chronic Pain and Fatigue

Postby steelyvix » Tue Jul 23, 2013 9:59 pm

Interesting post, I think my dd might have SPD and me too, I often have to put the subtitles on but I have never noticed if this is due to pain issues or not. I did neuropsychology at university so when I am not tired I shall go have a look at how this interaction could occur, as it kind of stands to reason. There is a theory of excitatory aggression, the more anxious/in pain/upset/worried etc you are the less likely you are to cope with other stimuli, but this usually pertains to being aggressive means you react more aggressively to lower threshold stimuli than you would if you were not already annoyed.

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Always happy to help and share, but it is not substitute for actual medical advice.
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