Sensory Integration Disorder, experiences and coping?

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I've been unofficially diagnosed with Sensory Integration Disorder by my geneticist. The reason it came up is because she said she has a few patients (including me) with my condition (Ehlers-Danlos Syndrome) that seems to be in twice as much pain than her other patients. The reason being is that there is some sort of sensory issue going on that is worsening the pain. The nervous system becomes overloaded from outside stimuli and causes a pain response. Then I talked her about how lights and sounds etc affect me and she said it definitely sounds like I have this problem. I already do some things to help me cope with it. I have various degrees of amber tinted glasses and wear hats, well, one hat that pretty much become my security blanket. I feel naked without it. I carry around earplugs, but I need to find small ones, the regular ones are too big for my little ears and I'm 26. I did find a brand that makes small ones--Mack's SafeSound Jr. (yes, jr...lol). My boyfriend said he would order them for me, my local drugstore doesnt carry them. I also want to make myself a weighted blanket. I figured out how, just need a little money so that I can make it.

Anyway, I'm curious about other adult/young adults that deal with this. What are your sensory issues and how do you deal with them.

I had six months of occupational therapy for my sensory integration disorder and it helped a lot.

Really? I've looked into it, but my sis said she didn't know anyone that treats adults in our city. The cost factor makes a difference as I know our insurance won't pay for the sessions and I would have to drive about an hour to get to the nearest possible therapist.

So have the effects of your treatment been longlasting then?

I've also been told that doing OT for SID wouldn't be helpful for adults, or that it can be really hard to find an OT that would treat an adult.

I had it when I was a kid so I was given occupational therapy for it. It helped a lot and now I hardly have sensory issues.

Woo-hoo! Do I remember you mentioning Ehlers-Danlos before? I think it was in the thread I talked about long fingers and the probability that either some sort of variant of that or Marfan syndrome run in my family, along with ADHD and sensory issues. The two definitely seem tied.

In my case, the sensory integration issues seemed to die down a lot and almost disappear by the age of 10. I still have overly sensitive spots I can't stand touching on my body (small spot on my head, heels of feet, etc.), but nothing major like lights and sounds. As a child, it was loud sounds that got me. I think my parents trained me out of that with their rampant love of loud music, though. Now I love it, for the most part, unless I feel touchy and irritable. I think that's normal, though.

I'm still emotionally sensitive, though, and I suffer from the unofficial MVPD/S (mitral valve prolapse dysautonomia/syndrome), so my problems lie more in that my nervous system seems to deal with chemicals and emotional stress terribly. Basically, it's genetic propensity to deal poorly with hormones, namely stress hormones, as far as I know. But I wouldn't doubt the two conditions we have are similarly linked. After all, the nervous system is one continuous network, and it all depends which connections are borked.

hey Orbyss, I do have Ehlers Danlos. I'm officially diagnosed Hypermobility, but I have some crossovers in Classical and Vascular. I also have a type of Dysautonomia. It affects everything for me. As far as the heart I have Postural Orthostatic Tachycardia Syndrome (type of dysaut.). My heart rate is extremely sensitive and I have a low blood pressure (a good day is 100/65). MVP is very common in EDS and Marfans. I have a slightly marfanoid habitus. Which just means that I have some Marfan skeletal abnormalities.

My geneticist said that she has a handful of patients with heightened pain/sensitivity issues and they believe it has to do with SID. I really would love to see a study done on it. I wouldn't be surprised at all if they found links between the conditions and SID, and even ADD/ADHD (which I also have). I'm distracted by everything. It's very hard for me to carry a conversation with someone with so much other sensory input.

I love music, even metal, but there's a fine line between being able to handle the volume. I truly believe that metal is meant to be loud!! ! Most music I feel is best when loud. But I can only have the music playing and I tend to close my eyes when I listen to it. In the car, for instance, I prefer to have the music a bit louder, it helps me focus when I am driving. I'm completely fine going to metal concerts because the people that go there are either mucisians, or music nerds (I fall into the latter category). They don't cramp you, they are very nice, and they actually want to HEAR the music. lol. I'm referring back to a Blind Guardian concert I went to a few years ago. By far the best concert I have ever been to.

It's so amazing how the nervous system works, or doesnt work.

A lot of SID in the setting of EDS can also be because of hyperadrenergic POTS (Dysuatonomia characterized by spikes of adrenaline)

I have this. (Don't have EDS - well, friend who is a physio says I am slightly bendy; but I am not so severely affected that I require a diagnosis)

In my case, it's been weird. As a child, I would moan that I can hear my dad's alarm go off at 4.30am each morning. Their bedroom door was shut and their room was opposite mine. At the age of 11, I had what was believed to be an epileptic seizure. After said seizure, the hearing sensitivity had gone (no idea why) and I became highly sensitive to light. To the stage where going out when it's sunny is physically painful - even with a sun hat and glasses on. I spoke to an eye doctor about this. She explained that some people who have this, have no other diagnosis and it's not the cause of some serious underlying eye or brain condition.

My hearing sensitivity came back in February this year. It was due to blocked ears. I then had my ears syringed 2 weeks later (was given some ear drops to soften wax) and have had hypersensitivity since. I have been told it'll go down; no-one can say when.

I do have a funny story involving hyperacusis (hearing sensitivity) and a pub quiz.

Avoidance is the only "cure" I've found (it's not like anxiety that gets worst the more you avoid it. It doesn't get better at all, no matter how much you expose yourself to it. Well, that's me).

But then, you can manifest physical pain for no reason; oftentimes I feel my bones grinding against everything I touch, and it hurts. Same with my skin touching things (then it's more like really rough leather rubbing against you when it's actually a soft cotton shirt). You can't really avoid this.

I'm betting most of those diagnosed with an ASD have SID too.

I have Ehlers-Danlos Syndrome (though it is not nearly as severe as I have seen in others - the only major problem I have is my ankles and hip joints dislocating and sliding back in place, hence why I cannot run to save my life). As a comorbidity of my AS, I too have SPD (there is a debate as to whether or not SID and SPD are the same, so I will type SPD for now, since I was diagnosed as such). I tend to not be able to process pain (with the exception of the constant pain/weakness in my leg, the result of not getting medical attention in a prompt manner after breaking it) to the point that I have had large wounds and didn't even notice until I felt something wet on my clothes, which upon looking to investigate, turned out to be blood. The same thing happened recently when I caught some fragments from a bullet that shattered upon impact on a steel target (it was for research purposes). It didn't hurt, but I spent a good week pulling chunks of metal from my arm.

I have mild hypermobility - never had anything actually dislocate on me, but I'm very bendy, tire easily, and get joint pain. My knees buckle when I'm tired.

I also have sensory processing issues. Loud noises, touch, bright lights, those are stressful. I hate stores at Christmastime! Fortunately, though, it's mild and I can cope by avoiding unpleasant stimuli or wearing a jacket to block it out.

What I've found most helpful is visiting the Snoezelen room at this one center in the town I live in. It's basically a room with a whole pile of things for producing different sensory sensations, and you can pick and choose to expose yourself to exactly the sensations you most enjoy. It's extremely relaxing, and I feel better all day if I go there.

If you can't get any therapy, try checking out the book The Out of Sync Child Has Fun. It's basically a list of activities for OTs to do with kids with sensory issues, many of which are easy enough to do at home. Be careful, though - pay close attention to how you're feeling, because if you pick the wrong activity for your individual sensory makeup, you can get very overloaded by it. (I should not do anything involving touching gooey lumpy things! It made me feel physically ill after awhile.)

I have it & so here are two short phrases that are the bane of everyone who does: "boy racers", "car horns". I'm lucky in this area as noise doesn't cause me physical pain, it does set off my fight or flight response though. I have noticed that it's mainly when I hear a loud noise that I'm not expecting that it goes off. I really hate having sensory processing disorder and in fact I wish no good person had it! As for trying to manage it, I just wait until the noise stops.

Does anyone know any researchers who are currently studying this condition? I've just had an idea to get them to read this thread.

I have Ehlers-Danlos Syndrome (with secondary POTS), and I'm pretty certain I have SPD. I didn't have it as a child. My condition was very well managed until my late twenties when I went to grad school and the stress worsened my condition severely. Over time, my chronic pain got worse and worse, and I started noticing it and other problems could be triggered by various sensory inputs. My biggest issues are conflicting sounds (like someone talking while we're watching a TV program), vibrations, and touch, especially light or unexpected touch.

What I've learned is that years of chronic pain rewires your brain. It sorta becomes convinced that all stimuli is bad rather than true traumas to the body. So it starts overreacting to various inputs. Because Ehlers-Danlos is often VERY painful (though not for all patients), it seems plausible that over time the brain would be rewired this way. Plus many EDS patients have Chiari Malformation, which is a problem with the brain being pushed down to the spinal cord. This can also cause some sensory problems. I'm finally going to talk to my doctor about SPD as well as Chiari. I know that OT is supposed to be less likely to help adults, but I figure it's worth a shot. I imagine there are a lot of chronic pain patients, whether from fibromyalgia, severe injuries, or conditions like EDS, who develop SPD. I often wonder if the sensitivity to artificial fragrances so many fibro patients have is due to SPD.

Hello Katress,

Alll I can think of is: . I really hope you feel better soon. I myself am going for an appointment with my OT in early December to discuss sensory strategies. If I feel the time is right to end my break from this forum, (staying on all the time is too much for me), I'll let you know how I get on.