How to cope with joint issues/pain in general

  1. purpleclouds
    Hi friends!

    (tl,dr : main questions bulleted at end)

    So it has recently been established that my Joint Hypermobility Syndrome--JHS (not just "being flexible"--Very similar in nature to EDS hypermobility type--I'm actually on the list for a geneticist to check for EDS since I have the dysautonomia, pain, etc that comes with it as well so my rheumatologist suspects it and say makes sense but I've been told it can only be properly diagnosed by a geneticist and they all have huge wait lists however that won't change much treatment it's okay! ) is causing my pain.

    So for the first time ever....I wasn't told "just fibro." I've had this dx (the JHS) for a few years so idk how they're just realizing it now *facepalm*... but basically, rheumatology says the JHS caused the fibro, bursitis, the back issues, the other structural could be causing my neuro symptoms if by chance a nerve is being pinched in my neck or back but basically every joint hurts now.

    My wrists/hands/fingers/shoulders/knees/neck/ankles are the worst right now. I asked if they would check my rheumatoid factor again to rule out that type of arthritis....but basically, she says it's they hypermobility causing damage and I need a geneticist. So for the time being I'm trying to figure out what to do. I still have the muscle pain and tender points. The doctor tried to explain how the joints caused that but I can't remember... As well as some crappy nerve damage that no one has offered options for other than accupuncture.

    What I've tried:
    • I'm on NSAID and nerve pain I have been. None of that change.
    • steroid injections for my hips
    • PT is out because I've done it 2-3 times (like 10 weeks each time) and the last time they said I was in too much pain and now with the dysautonomia type symptoms it's out. When I was there though they did this super helpful massage thing and heat and e-stem and I wish I could go and just have that and not the risky stuff? I should ask....
    • I REALLY REALLY want to do therapeutic yoga and they do it at my PCPs office (she suggested it) and I went once to an individual thing with the yoga therapist and I was totally fine! but I think they're worried I'm a liability.
    • I'm trying accupuncture at the same office. It hasn't done much for pain...but it is incredibly calming

    What I want to try/questions as to if you have tried these things
    • kinsesio tape! I know people swear by it. I have no idea how to use it or if I would need a professsional to show me how...I thought I had bought some but can't seem to find it.
    • braces...I have a prescription back brack that I'm going to ask if I should be wearing again. It is SUPER uncomfortable. I hate it. I feel like my wrists/knees/elbows/ankles need braces (especially because my ankles are rolling when I walk...)...but I'm thinking it would be weird to BRACE EVERYTHING. Like I don't know how to approach (of afford that)
    • someone from a complex care clinic that I was too old for called me back and she suggested I see a Physiatrist.....not a physical a physical medicine doctor. so wondering if anyone had experience with that?
    • I use heat sometimes. I thought about getting a TENS unit. At this point I kinda have to run everything by my doctor because somehow weird things seem to impact other health issues.
    • They're trying to get me back into pain will be a challenge to get them to understand with psych history and stuff....and that I have an odd tolerance to most pain meds.
    • Any other suggestions!

    Pain has been getting to the point of tears which scares me. I don't usually cry. Those are rarities...I'm pretty sure my other health stuff is exacerbating it but idk. Was just wondeirng if any of you found anything helpful?

    I know you aren't doctors and cannot give medical advice but I also know a lot of you struggle with some form of pain or injury.

    for anyonein pain today.

  2. weepingwillow
    It frustrates me when something that they dxed long ago suddenly seems to sink in like this. Like, they've been treating you for how long since the dx? It is nice to have a little bit of validation though even if they can't help a lot.

    NSAIDs and gabapentin seem to help with nerve pain. I have noticed though that not all of the pain is "nerve" pain. Like, the joint itself will hurt because it's damaged and the nerves are going crazy. This may make no scientific sense, but it seems like it works this way for me. The "structural" stuff needs heat, exercising, and stretching for me. I could take all the NSAIDs on the planet and that will still hurt. Recently a couple of doctors have gotten me to try ice, which in cases of swelling helps. idk when that's safe or not though. I tried steroid injections on my neck and it didn't go well, but I do know people that have gotten relief from them. We have different stuff going on, so I don't want to scare you off of them. It's just not the cure all they tried to convince me it was.

    My chiropractor does stim and some traction stuff with me. They also do like an ultrasound massage and a bunch of other little things like that. Some pt places do that stuff here too, I guess. I would ask, maybe some of this stuff will help a little with pain at least. I got an at home TENS unit and it helps a bit, but I have trouble keeping the pads stuck to me. I guess you're not supposed to get up and do anything while it's on. I was told yoga can be dangerous in cases, like your hypermobility could be a problem for you, but as far as I know they usually just tailor exercises and it's therapeutic yoga, so they deal with medical issues.

    I've never tried accupuncture, but have always been curious. Glad that it seems to at least be calming you.

    I thought the idea of k tape was ridiculous, but my pt had me try it anyway and I'm so glad he did. Seems to really help me, keep stuff in line the way it's supposed to be. A couple things though I learned, if you have any hair in the area the tape probably won't stick. Learned this the hard way. The ends were pulled too tight one time and it actually caused me friction burns/blisters. Any time I feel anything weird like tingling I check on it immediately now. Hasn't happened again, but I'm not taking chances. Being warm makes it stick better too, so I'd put a heat wrap on my neck over the tape and it helped it stick for me. It gets to be expensive too, since you use lots of pieces at a time, but it can stay on for multiple days as well. There are all kinds of online tutorials for how to apply it, but with your medical problems I would ask someone. I know you can cut off circulation and things like that if you apply it wrong.
    I have a love hate relationship with braces. They help, and there are some days I can't get around without them, but at the same time over wearing them weakens the joint which can just make the problem worse. It looks ridiculous to brace everything, and I try not to do it, but it happens. Until the shoulder thing it was usually my wrists and knees that were worst. I buy them at like rite aid and stuff. They're not cheap, but they tend to last. The prescription braces always seem to make you miserable. I hope you can figure out a way to make it more comfortable. I would definitely check about this too because circulation can be a problem when you have all your joints wrapped up in spandex.

    Something else they used that really helps is bio freeze. It works kinda like icy hot does. It's not necessarily a huge relief, but I find it helps.

    I have never heard of a physiatrist. Wonder if it's similar to a DO here?

    As far as pain management, I've got nothing helpful to say. They frustrate the daylights outta me. I have been lucky though that most of the people I've dealt with in the office have been ok.
    For me the biggest thing is to stay moving, but I know that is just not an option for you right now. I'm not able to do much atm and I'm noticing it for sure, I couldn't imagine not being able to really sit up.
  3. purpleclouds
    Thank you Willow

    So I *think* a physiatrist is a physical medicine. From what I've told, they are MDs....not sure how it works. I haven't found one yet-- it was just a suggestion. I need actual referrals...and I have gotten a ton of those but so many doctors have wait lists.

    It's been such a mess trying to coordinate treatment. It seems like a lot of my issues are things usually diagnosed EDS (which they suspect) and POTS and some other stuff...but because of trauma crap like yeah nope no proper medical care in that sense at least. So basically when looking at complex care centers....a few have said I was 1 year too old. But then if you look at adult places they either don't treat what I have OR they expect you to already have a diagnosis. And like I need everything coordinated--not just the pain (GI, endo, GYN, neuro, etc....) since I have a crappy number of comorbid issues (which could all be explained by EDS or another genetic condition). So I'm basically coordinating my own care with this new PCP who is great.

    I started a spoonie group/chronic illness on here since this group is focused more on pain stuff? I guess in case anyone wants to talk about coping with chronic or invisible illnesses--anything from GI to endo to cardio...anything. Because those often make pain worse and trauma symptoms.

    I remember at 17 the rheumatologist diagnosed me with CFS, fibro, some back thing that showed up in a xray but doesn't have a name, a bulging disc and JHS and bursitis...I'm 22 the heck did it take her so long to figure out that, no, it was not just "fibro," and that the JHS SHE DIAGNOSED actually CAUSED EVERYTHING ELSE.

    like what ????

    it was like an "Aha" moment for her. I hate when doctors have those. a lot. BUT pain management wise--they are more likely to medicate me since there's a cause. Problem is they don't seem to want to give me pills and definitely not pills that will do anything, it looks like some patches *might* work but most don't work if nerve damage is involved, I have literally gone so far as to ask if a pain implant is even plausible...they will probably think I'm crazy. But what's better.....1/300th the dose of morphine going directly into your spinal fluid in a programmed time implant that doesn't alter your state of mind....or a ton of highly addictive pills when they think I'm a SUI risk and I want to function in society? Tell me I sound crazy....what's more rational? like it sounds extreme....but I can't function right now.

    Every year i've accepted and adjusted...and every year things just got WORSE. my whole body...just ugh.

    Whether I have the genetic marker or whatever for EDS or not the JHS is very similar so that alone and the comorbid stuff causes enough damage.

    I take a max dose of gabapentin 3x a day and a max dose of a NSAID prescription 2x a day.... when I was at my PCP the other day they gave me a shot of toroidal which is an NSAID that sort of helped so I believe the joint pain is inflammation related? and then the nerve pain is like a separate issue that's from trauma.

    The yoga at this place--not regular yoga--therapeutic yoga. As in you barely move It's the same office as my PCP and accupuncture. But I see your point--guess the hypermobility does interfere.

    I mean this is gross but my elbow, for example, goes too far when it's if I fall asleep without positioning it differently, I'll wake up and my entire arm will be numb and painful. NOT COOL.

    I was a dancer for 13 years...that probably made the hypermobility worse...throw in the wonder everything is getting worse. If I do have EDS, POTS often comes with that but regardless my eating disorder....yeah, likely did NOT help with the POTS symptoms. How my parents managed my food as a child, yeah nope. The eating disorder also probably didn't help with the GI issues related to preventative measures taken. at all. until now. and I'm playing catch up.

    But you make a good point about circulation. For the POTS, they want waist high compression stockings (ugh) so like I have to clear everything with the doctor....for all I know the back brace I had before will make things worse now or I'll be allergic to tape (I'm allergic to most adhesive...) or a brace will make things worse.

    It's a lot to swallow. A lot of appointments. A lot of new doctors. A lot of unanswered questions and doctors having to speak with other doctors. And limited time....there's too many questions to ask even if I make lists. It's like if I walk into a pain consult I have to explain my psych history and that I'm not a risk, explain my resistance, explain everything I've tried...and then ask about braces and such and then check with cardio that those are ok etc etc etc

    I do want to try the tape though--before braces. It might be less uncomfortable than braces at least for like my hands? I think that would be somethign I ask pain management or if pain management refers me to someone like PT or physiatry or idk....chiropractor would probably be a bad idea with hypermobility maybe? idk professionals know what they're doing...

    It makes me so sad, though. Like you say to stay moving--but with the dysautonomia nonsense....whatever is's not safe. exercise isn't possible because walking/stairs barely is. And I see music videos of dancers and stuff...and my goodness I miss it so much. yoga seems like the closest thing.

    I want to move again so, so, bad. If I could be a dancer again.....I miss it so much.

    That was long, sorry.

  4. purpleclouds
    And willow I can only imagine your pain right now with the surgery and not being able to move and stuff. Like at least I've felt like my stuff has kinda onset gradually over the years and then kinda rapid fired these past 6 months....I couldn't imagine something so acute on top of your other stuff. Like out of nowhere. I have a friend in 3D who had an accidnet recently....also broke her leg.

  5. eagle22
    I am so sorry to read how your pain affects you so very one should have to live this way..
    Just a thought but have you tried self hypnosis for pain? My daughter speaks about how its used in child birth..have no idea if this is valid for you or something you've already tried and discarded but here's a link I found online:

    for all stuck in this awful cycle..
  6. purpleclouds
    oh wow terrible typo--sorry guys that was supposed to say "function in society* " not suicide....sorry if that was triggering.

    Thank you eagle

    I've tried imagery for pain and what not. They were super into that at the trauma center I used to go to. It sort of worked? I'm wary of hypnosis for a few reasons but I will look into it!

  7. weepingwillow
    don't normally edit in here, but I went ahead and changed it for you.

    The waking up with a limb that's numb thing sucks. I get that a lot with my arms too, and I move all over the place while I'm sleeping. (part of the reason I wanted the weighted blanket.) Idk about you, but I worry that I'm doing more damage to it too, which I probably am. Can't really control it though.

    You mentioned that you are allergic to a lot of adhesives, you may not be able to use the tape. I have issues with that stuff too, and the tape doesn't seem to bother me, but something to consider. It sucks that it's taking this long to get any of this coordinated. I hate the phase in the middle where they act like you're just a whiner or lunatic. The symptoms I was having in high school that they told me were low blood pressure and iron deficiency are turning out to likely be something like the POTS. I'm 37, what took so long?

    The broken leg sucks. I hate being dependent on other people so that's a problem for me too.

    for you.

    I used to dance too, I hear you about missing it. I was already a mess, but dancing definitely took a toll on my body too. I still miss it.
  8. eagle22
    Am a believer in natural remedies and read only yesterday about the essential oil Helichrysum Italicum which is purported to be a miracle for those with acute/chronic joint pain...if you feel its worth going down this route please try and get the purest oil you can as so many are hugely diluted.
    Years ago I worked in a plant nursery where we had about 25000 of these curry smelling plants... the smell was overwheming... but maybe anything is worth a go?
    xxxx M
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