Never-ending need for physical tension in my body...
February 11, 2017 2:31 AM Subscribe
Ever since I can remember, I have needed to have physical tension in my body/limbs in order to be comfortable/without pain. Does anyone else get this? What is it? Some Freudian craving for swaddling? Dr Google suggests potential Fibromyalgia, but hopefully not! It doesn't seem like restless leg syndrome, does it? Happy to answer questions! More details below.
I always need to be leaning on something, crossing my legs, jiggling my legs, stretching, clenching/unclenching my fists, cracking my knuckles, crossing my arms (and squeezing tight), hands in pockets, holding something, one arm holding the other, arms crossed behind my back, biting my nails/cuticles. I always rest my chin/mouth on my hands when in meetings.
I can't lie in one position in bed for long because it's very unconfortable, but it's not like my legs are always moving (like I understand restless leg syndrome to be). I can't be seated on a chair for long without crossing my legs with my hands holding each other.
Trying to stand up straight and relaxed makes me quickly become very restless/uncomfortable almost to the point of pain. Sometimes I suddenly become aware of the crushing effect of gravity on my body and can't get comfortable even after I sit or lie down.
I do have fatigue and sleep issues as well, if it's relevant. I am currently on medication for sleep and for chronic pain in my feet (which doesn't help the standing up issue), but the feeling predates any medication. I'm 34, male and otherwise healthy. This does not impact on my day to day functioning other than being a bit annoying at times.
One possibility came to mind while writing this - could I just be quite fatigued, and doing these things/feeling this tension keeps my muscles/nerves 'busy' so I don't feel the physical tiredness? But if that's the case, shouldn't I be more exhausted than I am?
I always need to be leaning on something, crossing my legs, jiggling my legs, stretching, clenching/unclenching my fists, cracking my knuckles, crossing my arms (and squeezing tight), hands in pockets, holding something, one arm holding the other, arms crossed behind my back, biting my nails/cuticles. I always rest my chin/mouth on my hands when in meetings.
I can't lie in one position in bed for long because it's very unconfortable, but it's not like my legs are always moving (like I understand restless leg syndrome to be). I can't be seated on a chair for long without crossing my legs with my hands holding each other.
Trying to stand up straight and relaxed makes me quickly become very restless/uncomfortable almost to the point of pain. Sometimes I suddenly become aware of the crushing effect of gravity on my body and can't get comfortable even after I sit or lie down.
I do have fatigue and sleep issues as well, if it's relevant. I am currently on medication for sleep and for chronic pain in my feet (which doesn't help the standing up issue), but the feeling predates any medication. I'm 34, male and otherwise healthy. This does not impact on my day to day functioning other than being a bit annoying at times.
One possibility came to mind while writing this - could I just be quite fatigued, and doing these things/feeling this tension keeps my muscles/nerves 'busy' so I don't feel the physical tiredness? But if that's the case, shouldn't I be more exhausted than I am?
My daughter has sensory seeking Sensory Processing Disorder, and a lot of what you wrote rang a bell for me. I'm mentioning this not to pathologise your experience, but to tell you that there are a LOT of well-known ways to address these needs. Most of what you read about SPD is related to diagnosis and treatment of children, but a lot of the "treatments" are probably easily adapted for adult usage. She worked with an occupational therapist for a Sensory diet, so if you're looking for "what type of professional helps SPD," that's the main source for helping children. (My only experience is working with her on this, so I don't know the adult equivalent.) There are several different kinds of SPD, sensory seeking is one (have to move my body, bite my fingernails, feel interesting textures), sensory avoidant is another (e.g. "Socks feelnweird and I hate loud noises").
Some of her treatments:
- wrapping up in a blanket, burrito style, or using a weighted blanket
- "heavy work"-- things like carrying heavy grocery bags
- we were told a weighted vest might help her
- her absolute FAVORITE thing is a yoga swing (kind of like a fabric hammock, but hung like a swing) which encompasses her completely-- she can curl up in it and it presses her equally all around her body
- swings in general are great-- she loves a porch swing, for instance
If you're curious about this and want to get a feel for whether this might be applicable to you, see if your library has a copy of The Out of Sync Child Has Fun, and imagine back to your younger self- would you have loved these activities? (Many of them appeal to me even now as an adult!) This same author has another book more focused on recognizing/diagnosing different kinds of SPD in kids, The Out of Sync Child, which is also great.
Sorry for only being able to offer kid references!
posted by instamatic at 3:30 AM on February 11, 2017 [7 favorites]
Some of her treatments:
- wrapping up in a blanket, burrito style, or using a weighted blanket
- "heavy work"-- things like carrying heavy grocery bags
- we were told a weighted vest might help her
- her absolute FAVORITE thing is a yoga swing (kind of like a fabric hammock, but hung like a swing) which encompasses her completely-- she can curl up in it and it presses her equally all around her body
- swings in general are great-- she loves a porch swing, for instance
If you're curious about this and want to get a feel for whether this might be applicable to you, see if your library has a copy of The Out of Sync Child Has Fun, and imagine back to your younger self- would you have loved these activities? (Many of them appeal to me even now as an adult!) This same author has another book more focused on recognizing/diagnosing different kinds of SPD in kids, The Out of Sync Child, which is also great.
Sorry for only being able to offer kid references!
posted by instamatic at 3:30 AM on February 11, 2017 [7 favorites]
Cross-posting with terretu to say that hey, both my daughter and I are also hypermobile! She also has proprioception issues as part of her SPD, and that is also an issue with hypermobility. Here's an online test for hypermobility.
posted by instamatic at 3:34 AM on February 11, 2017 [1 favorite]
posted by instamatic at 3:34 AM on February 11, 2017 [1 favorite]
And to double down on the cross-posting, I also definitely have some sensory (as well as visual/auditory) processing issues, though not formally diagnosed. The need for my body to "feel right" is a lot stronger as a drive than the rational desire to protect my joints by not overstretching them.
posted by terretu at 4:12 AM on February 11, 2017 [2 favorites]
posted by terretu at 4:12 AM on February 11, 2017 [2 favorites]
I'd say see a doctor, not because I'm assuming you're in any danger but because this is obviously bothering you and a doctor will probably have better odds of sorting it out than we will.
It may well be a problem in your posture or the way you sit, and the right, targeted stretching exercises can help you feel better. I bet a good physical therapist could help.
posted by Ursula Hitler at 4:23 AM on February 11, 2017 [1 favorite]
It may well be a problem in your posture or the way you sit, and the right, targeted stretching exercises can help you feel better. I bet a good physical therapist could help.
posted by Ursula Hitler at 4:23 AM on February 11, 2017 [1 favorite]
This actually doesn't sound like Fibro to me, other than the generalized pain. There is no test but the first thing a doctor will do is check for pain in certain pressure points. A rheumatologist is who you'd want to see to confirm a Fibro diagnosis. Good luck, pain sucks, especially when you can't find the cause.
posted by Room 641-A at 4:24 AM on February 11, 2017
posted by Room 641-A at 4:24 AM on February 11, 2017
I too thought sensory processing disorder in your proprioceptive system -- that's your body's sense of itself in space, and some people need to be moving or leaning/pushing/tensing all the time for their body to get enough feedback from the environment to keep track. As you can imagine, your brain is very unhappy when it can't tell where its body is, and the unconscious, automatic compulsion to solve that problem is overwhelming. (I've been told it's literally #2 behind breathing; your brain is like, "AM I FALLING OVER? Better check and be sure not.")
posted by Eyebrows McGee at 4:38 AM on February 11, 2017 [2 favorites]
posted by Eyebrows McGee at 4:38 AM on February 11, 2017 [2 favorites]
This actually does sound a little like restless legs syndrome. In RLS, it's not that the legs are constantly moving on their own, but that there's a vague weird sensation (people describe it as cramping, tingling, creepy-crawly, etc) that is relieved by movement. Typically just in the legs and typically just at night, though, which yours doesn't seem to be. Akathisia is also a possibility, but I'm only familiar with that as a med side effect, not on its own. The sensory processing disorders might fit, too, esp if it's been there your whole life.
[IAAD, IANYD, etc]
posted by basalganglia at 5:53 AM on February 11, 2017 [1 favorite]
[IAAD, IANYD, etc]
posted by basalganglia at 5:53 AM on February 11, 2017 [1 favorite]
I'm like this, too! When I went to special ed teacher college I learned as others have noted, this is A THING to do with the way your brain takes in sensory information and regulates where you are in space. Our brains CRAVE that input. Be proud of this because it's a fairly amazing survival tool.
I am an EPIC leg crosser, fidgeter, jiggler. I used to be exhausting to watch because I rarely stopped moving and my brain almost feels itchy sometimes.
What helped was learning about a sensory diet to compensate for those itchy feelings. I exercise really hard every morning, eat a LOT of raw carrots, I'm almost always playing with a pen, I sometimes wear ankle weights all day, I chew gum or hard candy, I often wear a necklace with calming aromatherapy oil in it, I sleep with a very heavy blanket year round, I usually wear some type of cardigan that I'll pull tightly around me and I do a lot of yoga to help feel centered.
Look up SPD in adults and find strategies that work for you. Welcome to the club!
posted by yes I said yes I will Yes at 6:53 AM on February 11, 2017 [4 favorites]
I am an EPIC leg crosser, fidgeter, jiggler. I used to be exhausting to watch because I rarely stopped moving and my brain almost feels itchy sometimes.
What helped was learning about a sensory diet to compensate for those itchy feelings. I exercise really hard every morning, eat a LOT of raw carrots, I'm almost always playing with a pen, I sometimes wear ankle weights all day, I chew gum or hard candy, I often wear a necklace with calming aromatherapy oil in it, I sleep with a very heavy blanket year round, I usually wear some type of cardigan that I'll pull tightly around me and I do a lot of yoga to help feel centered.
Look up SPD in adults and find strategies that work for you. Welcome to the club!
posted by yes I said yes I will Yes at 6:53 AM on February 11, 2017 [4 favorites]
Magnesium may help. Look at "natural calm"
posted by kbbbo at 8:02 AM on February 11, 2017 [3 favorites]
posted by kbbbo at 8:02 AM on February 11, 2017 [3 favorites]
Seconding magnesium.
posted by yes I said yes I will Yes at 9:00 AM on February 11, 2017
posted by yes I said yes I will Yes at 9:00 AM on February 11, 2017
Thirding magnesium, and possibly B12. Some of these things got much better for me when I figured out I was low in B12 and started supplementing.
posted by schadenfrau at 9:05 AM on February 11, 2017 [1 favorite]
posted by schadenfrau at 9:05 AM on February 11, 2017 [1 favorite]
Hypermobility is what popped into my head while I was reading your question, and then I see terretu's response which very well describes how I'm constantly feeling! I think of myself as loosey-goosey, floppy, or a Gumby; does that resonate with you?
If it is hypermobility, there's not much you can do to change the nature of your body's looseness, but stabilizing (i.e. strengthening) the muscles around your joints can help you to feel more solid rather than feeling like you're just flopping about, especially the ones that support your shoulders, spine and pelvis - i.e. the ones that support good posture. There may also be compensatory tightness in certain areas, which would benefit from stretching. I agree that a qualified physical therapist may be able to help out with this kind of thing.
Also, I completely get that need to shift and tense and clench, but try to be mindful about any one thing that you might be doing very often, because you may be stretching yourself out in one specific area over time. An example is resting your chin in your hands: if you're in that position too much, you could be shifting your (already loose) jaw and causing TMJ issues down the road. (So can having constant bad posture, which hypermobile folk have an easy time settling into!)
posted by sweetpotato at 9:55 AM on February 11, 2017 [1 favorite]
If it is hypermobility, there's not much you can do to change the nature of your body's looseness, but stabilizing (i.e. strengthening) the muscles around your joints can help you to feel more solid rather than feeling like you're just flopping about, especially the ones that support your shoulders, spine and pelvis - i.e. the ones that support good posture. There may also be compensatory tightness in certain areas, which would benefit from stretching. I agree that a qualified physical therapist may be able to help out with this kind of thing.
Also, I completely get that need to shift and tense and clench, but try to be mindful about any one thing that you might be doing very often, because you may be stretching yourself out in one specific area over time. An example is resting your chin in your hands: if you're in that position too much, you could be shifting your (already loose) jaw and causing TMJ issues down the road. (So can having constant bad posture, which hypermobile folk have an easy time settling into!)
posted by sweetpotato at 9:55 AM on February 11, 2017 [1 favorite]
I have hypermobility in knees and hands but never thought much of it beyond "what a cool thing to be able to do." Then, in my 40s I was working at a hospital and showing off my thumb hyperextension and a passing Physical Therapist said (yelled) "DON'T DO THAT." She explained forcefully about stretching the ligaments and tendons and what that does over time. She explained it all so forcefully that I stopped immediately and haven't done it since. She also recommended strength exercises to build up muscle around the joints to help keep everything in place, and NO stretching of those joints. All of this has helped my joints (except for damage done in accidents) and my arthritis is progressing much slower than it might have. And I take B3 and magnesium (as others have recommended). Best of luck.
posted by MovableBookLady at 10:10 AM on February 11, 2017 [2 favorites]
posted by MovableBookLady at 10:10 AM on February 11, 2017 [2 favorites]
Hey, I had no idea that this was a Thing, but like other commenters, I have these habits and am also have hypermobility related issues. I had always associated my fidgeting (I'm always needing to chew gum and/or shake my leg, tap my foot, do things with my hands) as being ADHD related, and it may well be.
But like you, I also always have my legs crossed or one or both legs folded under me, or I'll have my hands underneath me or arms crossed or what have you. I also can't sleep unless I'm surrounded by pillows on both sides, pressed right up against me.
And I've also always had some (undiagnosed) sensory processing issues. I'd never really connected these issues (hypermobility, need for tension/compression, fidgeting, sensory processing issues), so it's interesting to hear that others have this constellation of symptoms.
In terms of the "swaddling" behaviors, I honestly wasn't even aware of this until relatively recently, although in retrospect I can see how I always did this. Like, as a kid, when I would go to bed I would pile up stuffed animals all around me in the same way that I now do with pillows. I remember hearing about Temple Grandin inventing a "hug machine" to help people with autism, and so when I became aware of doing this myself, I figured maybe this was a related impulse (I'm not on the spectrum, that I know of, but again, I have some sensory processing issues which is also something people with autism experience.)
Now, I'm not sure how helpful any of this anecdata is. However, since you mention chronic foot pain, I did want to mention that I have found the superfeet green orthotics to be truly life changing. I've always had chronic foot problems, and I started to wonder if maybe this was in some way tied into my hypermobility (flattening out my arches or something), and the superfeet are very solid with significant arch support. I put these inserts into running shoes mainly, but even less comfortable footwear are improved with these orthotics. I have a job where I have to spend hours on my feet, and after a couple hours I would be in absolutely excruciating pain, and it would persist for the rest of the day and often the next day. Now, I can be on my feet for 10 hours a day, and I have some pain, but it's very much bearable, and it goes away pretty quickly once I get off my feet.
I've also found that compression wraps like this one help with my knee pain that I assume is hypermobility related. Someone on ask mefi also recommended these fingerless compression gloves which help with the pain I get in my finger/hand joints. Also these plantar fasciitis compression wraps for my feet/ankles.
For awhile I also did some strengthening physical therapy exercises to help build up muscle support for my joints. I didn't actually see a physical therapist for reasons, although I'm sure that would have been a good thing to do. I used the exercises that I found here. I have problems with basically all my joints so I basically did all the exercises (knees, hips, ankles, rotator cuff) for both my right and left sides. They did seem to help, although I'm bad at sticking with things, so I kind of gave up.
posted by litera scripta manet at 10:32 AM on February 11, 2017
But like you, I also always have my legs crossed or one or both legs folded under me, or I'll have my hands underneath me or arms crossed or what have you. I also can't sleep unless I'm surrounded by pillows on both sides, pressed right up against me.
And I've also always had some (undiagnosed) sensory processing issues. I'd never really connected these issues (hypermobility, need for tension/compression, fidgeting, sensory processing issues), so it's interesting to hear that others have this constellation of symptoms.
In terms of the "swaddling" behaviors, I honestly wasn't even aware of this until relatively recently, although in retrospect I can see how I always did this. Like, as a kid, when I would go to bed I would pile up stuffed animals all around me in the same way that I now do with pillows. I remember hearing about Temple Grandin inventing a "hug machine" to help people with autism, and so when I became aware of doing this myself, I figured maybe this was a related impulse (I'm not on the spectrum, that I know of, but again, I have some sensory processing issues which is also something people with autism experience.)
Now, I'm not sure how helpful any of this anecdata is. However, since you mention chronic foot pain, I did want to mention that I have found the superfeet green orthotics to be truly life changing. I've always had chronic foot problems, and I started to wonder if maybe this was in some way tied into my hypermobility (flattening out my arches or something), and the superfeet are very solid with significant arch support. I put these inserts into running shoes mainly, but even less comfortable footwear are improved with these orthotics. I have a job where I have to spend hours on my feet, and after a couple hours I would be in absolutely excruciating pain, and it would persist for the rest of the day and often the next day. Now, I can be on my feet for 10 hours a day, and I have some pain, but it's very much bearable, and it goes away pretty quickly once I get off my feet.
I've also found that compression wraps like this one help with my knee pain that I assume is hypermobility related. Someone on ask mefi also recommended these fingerless compression gloves which help with the pain I get in my finger/hand joints. Also these plantar fasciitis compression wraps for my feet/ankles.
For awhile I also did some strengthening physical therapy exercises to help build up muscle support for my joints. I didn't actually see a physical therapist for reasons, although I'm sure that would have been a good thing to do. I used the exercises that I found here. I have problems with basically all my joints so I basically did all the exercises (knees, hips, ankles, rotator cuff) for both my right and left sides. They did seem to help, although I'm bad at sticking with things, so I kind of gave up.
posted by litera scripta manet at 10:32 AM on February 11, 2017
Also, I should really have added that I would recommend seeing an actual doctor before embarking on any of this physical therapy exercise type things. I also always used the compression wraps when I did the exercises, and because of the hypermobility, I had to be really cautious about any stretching I did.
And of course, IANAD/IANYD/IANAPhysicalTherapist or any kind of medical professional.
posted by litera scripta manet at 10:34 AM on February 11, 2017
And of course, IANAD/IANYD/IANAPhysicalTherapist or any kind of medical professional.
posted by litera scripta manet at 10:34 AM on February 11, 2017
Another note: yoga can be great for sensory processing issues, especially proprioception related ones. If you're hypermobile, the strengthening/stabilization/proprioception part is amazing, but you have to be careful about overtaxing your ligaments and tendons. A good yoga teacher should be able to work with you on this.
posted by instamatic at 10:50 AM on February 11, 2017 [2 favorites]
posted by instamatic at 10:50 AM on February 11, 2017 [2 favorites]
I have a friend with a connective tissues disorder called Ehlers Danlos, who has described the same symptoms to me (along with the hyperflexiblity / double-jointedness that others are describing, so if it's not relevant to you it may be to one of them). There's not much by way of treatment - just symptom-oriented stuff like PT - but it can also implicate heart problems so it may be worth getting checked regardless.
posted by Lady Li at 1:43 PM on February 11, 2017
posted by Lady Li at 1:43 PM on February 11, 2017
+1 for hypermobility and strength training. Until I started weight lifting, i always had to be sitting on one leg to stretch my hip, stand on one leg in "tree pose", rotate my legs inwards...
Serious weight lifting with a trainer (to make sure I had the movements right, since it's very easy for me to go way too deep into a move and injure myself) changed all that. Highly recommended.
I also had to scale wayyyyy back on my regular yoga classes until my muscles were stronger and my joints more stable. Before that, I would go super deep into poses without realizing how bad it was for me (it was encouraged for everyone else, and feels great!).
Go see a good physiotherapist if you haven't already.
posted by third word on a random page at 2:17 PM on February 11, 2017 [1 favorite]
Serious weight lifting with a trainer (to make sure I had the movements right, since it's very easy for me to go way too deep into a move and injure myself) changed all that. Highly recommended.
I also had to scale wayyyyy back on my regular yoga classes until my muscles were stronger and my joints more stable. Before that, I would go super deep into poses without realizing how bad it was for me (it was encouraged for everyone else, and feels great!).
Go see a good physiotherapist if you haven't already.
posted by third word on a random page at 2:17 PM on February 11, 2017 [1 favorite]
Interesting how much overlap there is in the answers! I was going to suggest looking at sensory processing issues, especially proprioceptive and sensory seeking. My 4 year old has these issues and has been in constant motion since he was a few months old. The PT also said he has some muscle weakness (which is really not apparent to us) and that's part of why he moves so much - it takes more energy/strength to hold his body in a still position then to kind of roll with gravity.
And magnesium for some of the vague muscle joint pain. I actually have to also avoid getting too much calcium because it will cause me to have body and joint pain, trouble sleeping (because of discomfort/pain), and fatigue.
Something else you might look at is orthostatic intolerance. I have a variety called postural orthostatic tachycardia, which basically means that when I'm upright (sitting or standing) my body has trouble pumping blood up and so my heart works extra hard. One of the unconscious coping strategies people have so fidgeting, moving their legs, and other movements that contract the muscles in the legs which helps push the blood up. Memail me if you want more info on that. It sounds less likely then the other things with the symptoms you described but possibly a thing - especially with the fatigue.
posted by pennypiper at 3:15 PM on February 11, 2017
And magnesium for some of the vague muscle joint pain. I actually have to also avoid getting too much calcium because it will cause me to have body and joint pain, trouble sleeping (because of discomfort/pain), and fatigue.
Something else you might look at is orthostatic intolerance. I have a variety called postural orthostatic tachycardia, which basically means that when I'm upright (sitting or standing) my body has trouble pumping blood up and so my heart works extra hard. One of the unconscious coping strategies people have so fidgeting, moving their legs, and other movements that contract the muscles in the legs which helps push the blood up. Memail me if you want more info on that. It sounds less likely then the other things with the symptoms you described but possibly a thing - especially with the fatigue.
posted by pennypiper at 3:15 PM on February 11, 2017
POTS is also an EDS issue. Wow, it's really fascinating how all these different pieces interweave.
In fact, I am *really* glad to have read this thread, because I have known for a long time that I have orthostatic hypotension (I brown out when I stand up), but my Apple Watch and I just discovered that I also have POTS-- lying down pulse of 67 and standing up gets me to 104 (a difference of 30bpm indicates POTS). My hypermobility has gotten worse in the last few years, and it's probably time to take my GP's advice and talk to a genetic counselor.
posted by instamatic at 3:57 PM on February 11, 2017 [1 favorite]
In fact, I am *really* glad to have read this thread, because I have known for a long time that I have orthostatic hypotension (I brown out when I stand up), but my Apple Watch and I just discovered that I also have POTS-- lying down pulse of 67 and standing up gets me to 104 (a difference of 30bpm indicates POTS). My hypermobility has gotten worse in the last few years, and it's probably time to take my GP's advice and talk to a genetic counselor.
posted by instamatic at 3:57 PM on February 11, 2017 [1 favorite]
Ack, I wish I hadn't used the link I included above. (That will teach me to only read part of an article before linking it.) After finishing it, it is a little alarmist and scary. This Wikipedia POTS entry may be a better bet.
posted by instamatic at 4:08 PM on February 11, 2017 [1 favorite]
posted by instamatic at 4:08 PM on February 11, 2017 [1 favorite]
Response by poster: OP here. First off, many thanks to all commenters for your thoughtful responses - I very much appreciate it, and it seems to have been helpful to others as well.
Responding to some of the comments now:
- I'm not even slightly hypermobile, which narrows things down (but thanks to those who suggested it).
- SPD / sensory seeking / proprioceptive system is an intriguing suggestion. I certainly think that this is part of the issue - and it's really helpful to know that it's something 'legit'. Treatment-wise, I don't think there's much that would assist me, as I don't really suffer from sensory overload. Perhaps some fidget tools... I feel like I have instinctively compensated for SPD over the years, so it doesn't impact as much as it could. Similarly with the ankle weights and heavy blanket / sensory diet idea - it's probably not quite what I'm looking for, but I will think on it further.
- I could see a doctor about this, but I'm currently dealing with the other issues and I don't really want to muddy the water. It may be something I mention when I see the pain specialist/neurologist as it may help diagnostically, but I don't feel that physical therapy is really a necessity. It bugs me, but not so much as the other things I'm going through! I do have postural issues that I should probably look closer at.
- Fibro doesn't seem to be on the cards, thankfully, as I don't have any of the painful pressure points. I'm hoping for a rheumatologist referral in any event, just in case.
- Restless legs syndrome does seem close, but no cigar... akathisia seems quite likely but I agree, that seems to be a medication side effect rather than anything else, so I'm not sure what to make of it!
- Exercise and yoga - I will think seriously about this. It's not the first time yoga/pilates has been suggested for me, so I should probably give it a go. Strength training might also be worth considering.
- Magnesium/natural calm - great suggestion, have purchased some on Amazon Prime and will experiment
- B12 - I've previously had B12 injections without any effect, so it's probably not that. I won't rule it out though... (B3 too).
- Superfeet orthotics - thanks for the suggestion, I'll ask around about this locally.
- Ehlers Danlos/POTS doesn't fit me (no blood pressure changes or hypermobility), although orthostatic intolerance is something I've considered before.
Two other things I've thought of that may be relevant/ related:
1. When I close my eyes, they sometimes (maybe 5% of the time) roll back in my head in a painful way and I have to open my eyes again to 'reset' them. This causes some distress.
2. Potentially SPD related, or possibly just a lifestyle issue - I am constantly trying to plan and book in experiences (movies, theatre, travel, parties) which means I get quite overwhelmed with being so busy, and yet I find it incredibly difficult to stop. The thought of several nights in a row at home doing nothing (well, watching television/internet surfing/reading) is distressing to me - even though I'd consider myself to be an introvert and actually enjoy that type of evening. I'm obsessed with being busy.
Thanks again!
posted by NathanAlder at 4:10 AM on February 12, 2017
Responding to some of the comments now:
- I'm not even slightly hypermobile, which narrows things down (but thanks to those who suggested it).
- SPD / sensory seeking / proprioceptive system is an intriguing suggestion. I certainly think that this is part of the issue - and it's really helpful to know that it's something 'legit'. Treatment-wise, I don't think there's much that would assist me, as I don't really suffer from sensory overload. Perhaps some fidget tools... I feel like I have instinctively compensated for SPD over the years, so it doesn't impact as much as it could. Similarly with the ankle weights and heavy blanket / sensory diet idea - it's probably not quite what I'm looking for, but I will think on it further.
- I could see a doctor about this, but I'm currently dealing with the other issues and I don't really want to muddy the water. It may be something I mention when I see the pain specialist/neurologist as it may help diagnostically, but I don't feel that physical therapy is really a necessity. It bugs me, but not so much as the other things I'm going through! I do have postural issues that I should probably look closer at.
- Fibro doesn't seem to be on the cards, thankfully, as I don't have any of the painful pressure points. I'm hoping for a rheumatologist referral in any event, just in case.
- Restless legs syndrome does seem close, but no cigar... akathisia seems quite likely but I agree, that seems to be a medication side effect rather than anything else, so I'm not sure what to make of it!
- Exercise and yoga - I will think seriously about this. It's not the first time yoga/pilates has been suggested for me, so I should probably give it a go. Strength training might also be worth considering.
- Magnesium/natural calm - great suggestion, have purchased some on Amazon Prime and will experiment
- B12 - I've previously had B12 injections without any effect, so it's probably not that. I won't rule it out though... (B3 too).
- Superfeet orthotics - thanks for the suggestion, I'll ask around about this locally.
- Ehlers Danlos/POTS doesn't fit me (no blood pressure changes or hypermobility), although orthostatic intolerance is something I've considered before.
Two other things I've thought of that may be relevant/ related:
1. When I close my eyes, they sometimes (maybe 5% of the time) roll back in my head in a painful way and I have to open my eyes again to 'reset' them. This causes some distress.
2. Potentially SPD related, or possibly just a lifestyle issue - I am constantly trying to plan and book in experiences (movies, theatre, travel, parties) which means I get quite overwhelmed with being so busy, and yet I find it incredibly difficult to stop. The thought of several nights in a row at home doing nothing (well, watching television/internet surfing/reading) is distressing to me - even though I'd consider myself to be an introvert and actually enjoy that type of evening. I'm obsessed with being busy.
Thanks again!
posted by NathanAlder at 4:10 AM on February 12, 2017
Regarding your second point about the obsession with busy: try yoga and weight lifting with a mindful approach. While performing these activities, really concentrate on the present moment, on controlling the movements and position of your body, and feeling the physical sensations as you move. It sounds a little out there, but it's a nice way to practice being able to slow down and to be with yourself without needing constant outside distractions, while at the same time working on strengthening your body. It's also less daunting than sitting meditation, which can be helpful for what you're describing as well.
Down Dog is an amazing and free yoga app that I use constantly. It's really well made, is aesthetically pleasing, has various settings for difficulty level/type of practice/number of minutes to practice/music. (https://www.downdogapp.com/...sorry I can't get the link to work)
posted by sweetpotato at 4:48 AM on February 12, 2017
Down Dog is an amazing and free yoga app that I use constantly. It's really well made, is aesthetically pleasing, has various settings for difficulty level/type of practice/number of minutes to practice/music. (https://www.downdogapp.com/...sorry I can't get the link to work)
posted by sweetpotato at 4:48 AM on February 12, 2017
There are several different kinds of sensory processing disorders. Especially with your update about feeling driven to overschedule yourself, in addition to your description of fidgeting and moving, it sounds like it might be a variant of "sensory seeking" SPD. (My daughter is a sensory seeking introvert.)
posted by instamatic at 5:42 AM on February 12, 2017 [1 favorite]
Sensory CravingThere are lots of variants and gradients of SPD-- and most people DO figure out ways to keep themselves comfortable and happy. If this rings a bell for you, the only reason to read up on it is if you're curious, or looking for additional ways to help you feel comfortable.
Individuals with this pattern actively seek or crave sensory stimulation and seem to have an almost insatiable desire for sensory input. They tend to be constantly moving, crashing, bumping, and/or jumping. They may “need” to touch everything and be overly affectionate, not understanding what is “their space” vs. “other’s space.” Sensory seekers are often thought to have Attention Deficit Hyperactivity Disorder (ADHD) or Attention Deficit Disorder (ADD). A key factor with Sensory Craving is that when the individual receives more input it does not regulate him/her; in fact, those with true craving disorders become disorganized with additional stimulation.
posted by instamatic at 5:42 AM on February 12, 2017 [1 favorite]
Poop-related warning about magnesium/Natural Calm -- go SLOWLY at first. It really helps to move things along, if you get what I'm saying.
posted by yes I said yes I will Yes at 5:52 AM on February 12, 2017 [1 favorite]
posted by yes I said yes I will Yes at 5:52 AM on February 12, 2017 [1 favorite]
You say out of the gate that you're not even slightly hypermobile, which you might already know for certain. But just in case -- hypermobile doesn't necessarily mean flexible. Just because you are not flexible doesn't mean you're not hypermobile. In fact, constant muscle tension and needing to stretch is a sign of hypermobility. I always have this feeling that I need to engage my muscles somehow... almost like I'm reminding myself that they're there? I constantly feel like I need to stretch my hip and inner thigh area. As in, during the workday I will sneak into unoccupied offices and do NSFW stretches. Here is a post from someone I think is a very smart woman: https://nutritiousmovement.com/hypermobility/
Hypermobility can be a contributing factor to proprioception issues. Having stiff muscles can be a result of (and cause of) needing to work extra hard to be able to just sit or stand still. https://nutritiousmovement.com/beyond-balance/
I'd also think about ADHD if you haven't already. That would account for the constant need for movement and also the mental aspect of the constant need to be doing things, planning things, etc.
I am hypermobile and I have ADHD, and I probably have some kind of sensory issue. There are actually studies that show that hypermobility and ADHD might be related.
One other thing for the sensory issues -- I was on a Google deep dive that I think probably started with "thunder shirts for people?" after hearing about my friend's dog's thundershirt, and knowing how I love really heavy blankets. I came across the term "deep pressure therapy" which is what thundershirts and the like are for, and when I Googled that and saw the first image that came up I just burst out laughing at myself. I don't think I ever actually did what this kid is doing but MAN DO I EVER get it and feel like why didn't I think of that. It must feel amazing.
posted by thebazilist at 12:23 PM on February 13, 2017
Hypermobility can be a contributing factor to proprioception issues. Having stiff muscles can be a result of (and cause of) needing to work extra hard to be able to just sit or stand still. https://nutritiousmovement.com/beyond-balance/
I'd also think about ADHD if you haven't already. That would account for the constant need for movement and also the mental aspect of the constant need to be doing things, planning things, etc.
I am hypermobile and I have ADHD, and I probably have some kind of sensory issue. There are actually studies that show that hypermobility and ADHD might be related.
One other thing for the sensory issues -- I was on a Google deep dive that I think probably started with "thunder shirts for people?" after hearing about my friend's dog's thundershirt, and knowing how I love really heavy blankets. I came across the term "deep pressure therapy" which is what thundershirts and the like are for, and when I Googled that and saw the first image that came up I just burst out laughing at myself. I don't think I ever actually did what this kid is doing but MAN DO I EVER get it and feel like why didn't I think of that. It must feel amazing.
posted by thebazilist at 12:23 PM on February 13, 2017
Response by poster: Again, thank you all for your comments! I'll look into (mindful) yoga; I think sensory seeking SPD is right on the mark but there's not too much to be done about it by the sounds of it; hypermobility symptoms seem plausible but I'm neither hypermobile nor flexible going by the tests! ADHD is unlikely , I think I'm just a bit high-functioning anxiety-ish right now.
Also I want to sandwich myself into a sofa right now.
Finally: boy, you weren't kidding with the magnesium/Natural Calm warning!!! 'Nuff said!
Thanks all.
posted by NathanAlder at 10:02 AM on February 17, 2017
Also I want to sandwich myself into a sofa right now.
Finally: boy, you weren't kidding with the magnesium/Natural Calm warning!!! 'Nuff said!
Thanks all.
posted by NathanAlder at 10:02 AM on February 17, 2017
One quick follow up - POTS doesn't mean a blood pressure change just a heart rate change (other kinds of OI are different). The "nice" things about POTS is that it's super easy to do a basic at home "test", it's called "poor man's tilt table test" and you just need something that measures your pulse (I have a free smart phone app). Super easy, though if you have POTS it can be unpleasant.
posted by pennypiper at 5:02 PM on February 17, 2017
posted by pennypiper at 5:02 PM on February 17, 2017
Response by poster: Thanks - did the test and hoped for the worst (!) but my pulse remained stable.
posted by NathanAlder at 8:08 AM on February 18, 2017
posted by NathanAlder at 8:08 AM on February 18, 2017
This thread is closed to new comments.
My 100%-non-scientific take on this is that my ligaments are all so loose that my skeleton kinda feels like it's collapsing in on itself (I feel like I'm just sort of hanging unsupported when I try to stand neutrally without locking my knees, if that makes any sense) unless I balance it out by supporting it (which means overstretching). It's definitely contributing to my overall chronic pain and probably damaging my joints more, but I have a hard time not doing it because the alternatives are very uncomfortable.
I also have chronic pain and fatigue; currently trying to figure out how much of that is mobility-related joint damage and how much might be something else like fibro or some kind of arthritis. I've heard that fibro and hypermobility are common comorbid diagnoses, although I don't think the link is well-understood currently.
There are a bunch of fairly easy-to-figure-out-yourself signs for hypermobility (being able to lock the last finger joint is one, being able to stretch your thumb in to touch your wrist is another, stretchier than average skin [grab some on the back of your hand] is a third) if any of this is sounding familiar.
posted by terretu at 3:26 AM on February 11, 2017 [2 favorites]