Hypermobility and joint pain
March 9, 2016 2:45 PM Subscribe
I've never gone to a doctor for anything like this before. Please walk me through the steps.
I was diagnosed as a kid as hypermobile (and still meet the requirements). As a child, all that really meant for me was "don't sit that way." But now I'm 33.
I have wrist and finger joint (and occasional minor elbow) pain from typing, and knee pain from biking and walking. I bike and walk for transportation, so I'm well-fitted to my recumbent bike and I use gears appropriately. I'm going to be working online and it's basically my dream job so I hope I can keep typing. I try not to load my backpack past 15% of my body weight when walking, but it doesn't always work out that way (like that megasale on staple foods at the grocery store the other day). Do I need to get one of those folding shopping carts or something similar? If so, are there any that are well-built for walking long distances (and bonus points if I can carry it like a backpack when it's empty)? I live in a city and not biking/walking at least 3-15 miles in a day for transportation aren't really options for me unless there's some other sort of human-powered transportation I'm overlooking. And biking is already supposed to be one of the best exercises for your knees.
When I try searching the internet, everything just says to build up the muscles around the joints. But this doesn't make any sense to me!? It's the joints with built-up muscles surrounding them that experience the pain! I use my finger muscles to type! I have amazing quads! So I don't really understand this.
I think I probably need to spend some time with a physical therapist who understands hypermobility. I have no idea how to find one. I had no insurance until they started legally requiring it and now I have a pauper's health insurance (US). It covers only the most basic of basic stuff, I'm not sure what exactly or how to find out. I know that once I went in and said "hey can I get tested for vitamin levels (had chronic migraines that were finally fixed by vitamins so I wanted my vitamin levels checked, people on MetaFilter get these tests done for free through their insurance)" and my doctor suggested some other clinic where I could pay out of pocket because insurance wouldn't cover it. On the other hand, I got a mole I thought was bothering me removed for free and when my doctor thought there was a lump in my breast, I didn't have to pay to go to the hospital to get it checked out. This information is just as sort of a rough metric for what my insurance seems to cover, in case that's useful to those of you who have experience with using insurance. I'm generally healthy so you now know almost my entire medical history.
I've considered taking up (for examples) yoga or martial arts or water aerobics or kayaking lately, but I feel like at this point before I start anything I need to understand my body and how it works so I know what does and doesn't make sense for my body. So it would be good to know what to ask with respect to hypermobility and preventative maintenance, too. Also, if there's a definitive book that talks about hypermobility and preventative maintenance, I'd love to know about it.
So I'm guessing that what happens next, based on what I've read on Metafilter, is that I go to the doctor, say "my knees sometimes hurt but not this instant," ask for a referral to a generic physical therapist, and then maybe I get a visit paid for by insurance? So I figure if I'm going to go through all this time and energy of going to a general doctor just to get referred to a physical therapist who I probably won't get much time with, I should know as much as I can before-hand.
Please hold my hand, spell it out, tell me the obvious and the obscure. Whatever you think I need to know before I go in (and anything else that might be useful or relevant to me). Thank you.
I was diagnosed as a kid as hypermobile (and still meet the requirements). As a child, all that really meant for me was "don't sit that way." But now I'm 33.
I have wrist and finger joint (and occasional minor elbow) pain from typing, and knee pain from biking and walking. I bike and walk for transportation, so I'm well-fitted to my recumbent bike and I use gears appropriately. I'm going to be working online and it's basically my dream job so I hope I can keep typing. I try not to load my backpack past 15% of my body weight when walking, but it doesn't always work out that way (like that megasale on staple foods at the grocery store the other day). Do I need to get one of those folding shopping carts or something similar? If so, are there any that are well-built for walking long distances (and bonus points if I can carry it like a backpack when it's empty)? I live in a city and not biking/walking at least 3-15 miles in a day for transportation aren't really options for me unless there's some other sort of human-powered transportation I'm overlooking. And biking is already supposed to be one of the best exercises for your knees.
When I try searching the internet, everything just says to build up the muscles around the joints. But this doesn't make any sense to me!? It's the joints with built-up muscles surrounding them that experience the pain! I use my finger muscles to type! I have amazing quads! So I don't really understand this.
I think I probably need to spend some time with a physical therapist who understands hypermobility. I have no idea how to find one. I had no insurance until they started legally requiring it and now I have a pauper's health insurance (US). It covers only the most basic of basic stuff, I'm not sure what exactly or how to find out. I know that once I went in and said "hey can I get tested for vitamin levels (had chronic migraines that were finally fixed by vitamins so I wanted my vitamin levels checked, people on MetaFilter get these tests done for free through their insurance)" and my doctor suggested some other clinic where I could pay out of pocket because insurance wouldn't cover it. On the other hand, I got a mole I thought was bothering me removed for free and when my doctor thought there was a lump in my breast, I didn't have to pay to go to the hospital to get it checked out. This information is just as sort of a rough metric for what my insurance seems to cover, in case that's useful to those of you who have experience with using insurance. I'm generally healthy so you now know almost my entire medical history.
I've considered taking up (for examples) yoga or martial arts or water aerobics or kayaking lately, but I feel like at this point before I start anything I need to understand my body and how it works so I know what does and doesn't make sense for my body. So it would be good to know what to ask with respect to hypermobility and preventative maintenance, too. Also, if there's a definitive book that talks about hypermobility and preventative maintenance, I'd love to know about it.
So I'm guessing that what happens next, based on what I've read on Metafilter, is that I go to the doctor, say "my knees sometimes hurt but not this instant," ask for a referral to a generic physical therapist, and then maybe I get a visit paid for by insurance? So I figure if I'm going to go through all this time and energy of going to a general doctor just to get referred to a physical therapist who I probably won't get much time with, I should know as much as I can before-hand.
Please hold my hand, spell it out, tell me the obvious and the obscure. Whatever you think I need to know before I go in (and anything else that might be useful or relevant to me). Thank you.
Also, I brace my knees frequently for support, at the slightest hint of pain, and that really helps. Wrist braces might help with the typing. I always wear a knee brace when walking long distances, and occasionally use an Ace bandage for the office. I also keep a little camping chair under my desk to elevate my leg as needed. It's my left knee that causes me the most pain, but lately my right knee has been acting up, too, so the camping chair lets me elevate both.
posted by Ruki at 3:20 PM on March 9, 2016
posted by Ruki at 3:20 PM on March 9, 2016
It's not just the big, obvious muscles you need to build up. In fact, those can overwhelm the little ones and leave you doing silly things to your joints because you're trying to use a blunt instrument where finesse is called for.
My route into PT for similar issues (my ligaments are fine; it's the bones that don't fit together tight enough) involved about three months of telling progressively more specialized healthcare practitioners exactly how bad it hurt and how that impacted my life before I got to an orthopedist who said, yeah, I could definitely see surgery helping but let's do PT first. Don't downplay your pain just because it isn't constant; that'll often just get you a bottle of NSAIDs. Focus on describing what does make it hurt and how that limits your activities. Even things like "I have the stamina to bike twenty miles but because of my hip I can only do fifteen" count; it doesn't have to be "I can't stand long enough to cook". Also, have numbers in mind for your average pain and the worst it ever gets, and be sure to mention if there's any residual irritation even if you aren't feeling "pain" per se. Basically, every little bit of description helps your provider understand the problem and justify their referral/PT to insurance.
posted by teremala at 4:28 PM on March 9, 2016
My route into PT for similar issues (my ligaments are fine; it's the bones that don't fit together tight enough) involved about three months of telling progressively more specialized healthcare practitioners exactly how bad it hurt and how that impacted my life before I got to an orthopedist who said, yeah, I could definitely see surgery helping but let's do PT first. Don't downplay your pain just because it isn't constant; that'll often just get you a bottle of NSAIDs. Focus on describing what does make it hurt and how that limits your activities. Even things like "I have the stamina to bike twenty miles but because of my hip I can only do fifteen" count; it doesn't have to be "I can't stand long enough to cook". Also, have numbers in mind for your average pain and the worst it ever gets, and be sure to mention if there's any residual irritation even if you aren't feeling "pain" per se. Basically, every little bit of description helps your provider understand the problem and justify their referral/PT to insurance.
posted by teremala at 4:28 PM on March 9, 2016
My folding shopping cart suggestion is a Reisenthel trolley. I have the "foldabletrolley" which juuust fits in my shoulder bag when it's collapsed – both Amazon and Container Store should carry it. Anyway, I'm hypermobile and have mostly ignored dealing with it, so I'll be following this.
posted by quarterinmyshoe at 5:30 PM on March 9, 2016
posted by quarterinmyshoe at 5:30 PM on March 9, 2016
I'm hypermobile too. I've had PT for a bunch of stuff at this point. I typically see an orthopedist first and they'll usually prescribe the PT before doing more invasive or pricey tests. One time I actually just skipped the orthopedist altogether and went right to PT because I knew that's where I was going to end up. Just because you have strong quads or whatever doesn't mean much. As stated above there are a lot of tiny muscles that are really important and a PT will help you sort out what needs work to help your specific joints that give you trouble. Also look into braces. I have good knee, ankle, and wrist braces now and they are worth the money if you can find one that works for you.
When you go to the doctor be prepared with the level of pain (1-10 scale), where it occurs, about how often, what triggers it, and what helps it, and what activities in your life are interrupted because of it.
We can't really help you with the insurance stuff that much because every policy is different. If you don't know what is covered or how much you can be expected to pay out of pocket you should call them or log on to their website if they have that. My current insurance gives me 60 PT visits a year with a $30 copay for each. My prior insurance didn't have a limit but I had to pay a much higher copay and the insurance required that they approve any PT visit prior to it occurring (my current one doesn't have to approve). Your insurance may or may not cover it, may require a referral, may or may not have a copay, etc.
posted by FireFountain at 11:26 PM on March 9, 2016
When you go to the doctor be prepared with the level of pain (1-10 scale), where it occurs, about how often, what triggers it, and what helps it, and what activities in your life are interrupted because of it.
We can't really help you with the insurance stuff that much because every policy is different. If you don't know what is covered or how much you can be expected to pay out of pocket you should call them or log on to their website if they have that. My current insurance gives me 60 PT visits a year with a $30 copay for each. My prior insurance didn't have a limit but I had to pay a much higher copay and the insurance required that they approve any PT visit prior to it occurring (my current one doesn't have to approve). Your insurance may or may not cover it, may require a referral, may or may not have a copay, etc.
posted by FireFountain at 11:26 PM on March 9, 2016
I saw this huge linkspost about EDS/hypermobility on tumblr literally yesterday. Here it is: http://spoonsandstripes.tumblr.com/post/118488743480/what-is-ehlers-danlos-syndrome-eds-and-could-i. Lots of helpful information on a lot of the things you're asking about. I don't even have this condition and I found it a really fascinating read! From what I could gather, you're absolutely right to want to understand this better and think proactively about how to avoid further joint damage. It also sounds like you need to be careful of information about how to strengthen joints if it's aimed at people with non-hypermobile joints. Hope this is helpful, anyway.
posted by Acheman at 4:38 AM on March 10, 2016 [4 favorites]
posted by Acheman at 4:38 AM on March 10, 2016 [4 favorites]
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And a bit of obvious/obscure advice - don't chew gum. I found out I was hypermobile when I was at my oral surgeon, being treated for TMJ. He grabbed my thumb and bent it to my wrist, which was startling, and literally said "Aha!" Gum chewing is bad for the hypermobile jaw.
posted by Ruki at 3:14 PM on March 9, 2016 [1 favorite]