EDSers - help me brainstorm?

[nanookmama]

If you have EDS, I would really appreciate your input!

I'm 34 weeks pregnant, and starting to lose mobility. I feel fine when I wake up (sleep on my sides all night) and walk fine. But after I sit for a few minutes, I really struggle to walk. There is pressure and pain between my seat bones. After I've been up for a while it starts to dissipate, but staying on my feet long enough to counteract 15 minutes of sitting is not an option. I can't complete the task. And as soon as I go back to sitting, the pressure and pain are gone.

But I'm not sure exactly what is happening, so I don't know how to fight it. My first suspicion is that when I sit, my pelvic bones are spreading. They've been very loose this pregnancy. The good news is that I no longer feel the pubic joint moving when I walk :tu. That's good progress. If my bones are actually spreading, then I would think maybe squats and lower body lifting might help strengthen the musculature enough to support the joints. Hopefully.

But, if this is actually stretching due to the weight of the baby or my own weight gain this pregnancy, I don't want to further strain the muscles and might need to attend those muscles differently.

Also, could this be related to constipation? :scratch I ate JUNK for a few days at the end of last week, and struggled with constipation on Sunday. My own fault, but that's when this pressure and pain started. But it doesn't seem to be 'roids. :shrug3

Any thoughts? I'd love some help with this.

[ThreeKids]

Type III?

[nanookmama]

Probably. My official diagnosis was Hypermobility Syndrome before it was rolled into EDS. I haven't sought a new diagnosis because our health insurance hasn't been stable - ever.

I have no indications that it could be vascular or the more dangerous manifestations, with the exception of a minor, explained hemorrhage after DD1 was born. Required no transfusion, no IV, stopped quickly, and was clearly related to the placenta being pulled off the uterine wall as DD came out.

So I assume Type III.

[ThreeKids]

It does sound like Type III. Somehow, not being sure convinces me it's Type III because that's what I often hear with type III.

There's a doc not too far from me who is starting to question if all of Type III belongs in the EDS diagnosis. Where EDS's description is purely about genetics influencing a defect, it seems women with Type III can experience worsening of symptoms in the childbearing years while boys can improve. And the women also experience ups and downs in the symptoms.

I was experiencing my joints getting looser and looser. My sister has been experiencing the same. The story of having a dramatic improvement in joint pain when going gluten-free is a common one. But I also have improved in my EDS symptoms, almost to the point I'd say I was in remission as far as joints and ligaments go, since going grain-free. I'm totally serious about this. I went from thinking I was just going to keep falling apart until I wasn't able to walk anymore to thinking of myself as almost typical jointwise.

I think there's a hormonal component to the worsening symptoms and of course pregnancies are really rough on joint loosening. Hit the cal/mag supplements consistently to try to keep the hormones as even as you can. It's a losing fight with pregnancy, though.

Stay away from post-partum yoga. Two months post-partum is NOT close to enough time for an EDS'er.

When my pelvis was doing poorly during pregnancy, I had one pregnancy where pushing a cart or stroller helped me get some exercise without aggravating my symptoms. I'd even push an empty stroller while carrying ds sometimes. I had another pregnancy where it made it worse. This issue is so confusing.

Inflammation plays a big part in this. When the symptoms are at the worst is when the inflammation is at its worst and one of those two things can cause some fatigue. Ibuprofen gives me a break from those problems. Pineapple would be an anti-inflammatory you could have during pregnancy as long as you're not worried about its cervix-softening effects causing pre-term labor.

[nanookmama]

:think

Sometimes, I would rather live in complete denial than deal with the mountains of uncertainty that surround EDS. I did notice a significant overall physical improvement when I went off gluten early in the pregnancy, but I had assumed that was mostly due to the cessation of constant vomiting. I should try eliminating again to see if it helps with the inflammation. That's a good idea.

I have a cal/mag supplement, but I think it's a lower dose than the one I was using before. Keep meaning to check, but the kitchen is a black hole. I walk in, nothing gets done, and it takes me forever to walk out. :shifty

I've always seen an increase in flexibility and pain towards the end of my pregnancies, but this specific musculature issue is new. And since I don't understand what exactly is going on, I don't know how to even research to find ideas to fix it. And I have 6 weeks left, so I can't just give up and lay down and wait for the baby to slide out. Though I'd like to, for the record.

I've mostly had to ignore my MW's desperate please for exercise during and after all three pregnancies. I do what I can, but the joint instability makes most exercise completely out of the question. Swimming, even if I could afford it, makes my shoulders and ankles miserable for days. Swimming. There's no hope. And after birth? I'll get to it. Eventually. ;)

[ThreeKids]

The inflammation can come with a lot of cortisol. Exercise can exacerbate that. I think I did more damage than good trying to force myself to exercise when I was fatigued from the health problems. The pregnancy where I was walking a lot, I was serendipitously gluten-free and nearly grain-free. I ate so much healthy food I didn't have room for gluten, but wasn't thinking about gluten-free specifically.

[Chaos Coordinator]

subbing since this seems to be relevant here as well.

peridot posted a list of supplements in my thread...fish oil, b and d vitamins...?

[ThreeKids]

I don't understand the specifics of why joints get looser or better or worse other than a general improvement in the overall condition. Individual joints are just rolling the dice in how bad they'll get in light of the overall condition. I did some of the pubic symphisis dysfunction things to do as well as I could. I didn't do the hip belt thing because I was afraid it would just cause other problems or affect my circulation. A blood clot wasn't going to make me happier.

I've had joints suddenly act like I had an injury when I know I didn't do anything and I've had joints get better when something happened that should have injured me. It's all just such non-sense, but I keep trying to figure it out.

The joints don't even scare me as much. This condition runs thick in my family. I've seen a lot of immune system complications crop up.

One thing I've done to space out my chores and sitting is play Cut the Rope or Pudding Monsters on my phone, then do one chore like unload one rack of the dishwasher or put away one basket of laundry. One level of either game was just the right amount of time to sit without sitting too long.

[nanookmama]

Bump!

[Peridot]

I don't understand the specifics of why joints get looser or better or worse other than a general improvement in the overall condition. Individual joints are just rolling the dice in how bad they'll get in light of the overall condition. I did some of the pubic symphisis dysfunction things to do as well as I could. I didn't do the hip belt thing because I was afraid it would just cause other problems or affect my circulation. A blood clot wasn't going to make me happier.

I've had joints suddenly act like I had an injury when I know I didn't do anything and I've had joints get better when something happened that should have injured me. It's all just such non-sense, but I keep trying to figure it out.

The joints don't even scare me as much. This condition runs thick in my family. I've seen a lot of immune system complications crop up.

.

I personally think hypermobility syndrome belongs in the EDS family. :yes There are some things that I've connected together irt the questions above:

you can absolutely injure a joint without knowing it if you are hypermobile. :yes Where a normal person would have pain with an overstretched ligament- we may not. The pain comes later when the unstable joint starts to cause problems, wearing in one spot, or causing other muscles to ache from taking up the slack, throwing spines out of alignment, you name it.

also, a little bit of inflammation can stabilize a joint. :yes I figured this out in biology last year. A stable joint can cause less problems. :shrug3 So while I have much less joint pain while gluten free- my joints are all looser, and more flexible. Like they were when I was 17. :hunh But there I have the possibility of injury again. :shrug3

as far as the pressure in your pelvis/sit bones- you might try sitting on a yoga block, something not completely hard and not too yeilding either. It is very tricky to find ways to not put pressure in the wrong places when you are hypermobile- mainly I just change positions as often as possible. :shrug3

every joint in me will hyperextend. and if one is injured the rest will take on greater loads, and I end up sore everywhere. Ergonomics help, but go only so far. :shrug3

I also do what you were doing and space out activity and rest. I vary activities as much as possible. Think of the way a toddler sleeps- sideways, backwards, and upside down. :lol when you get your body into as many different orientations as possible, it helps prevent stress from accumulating on one joint.

Nutrition- I'm firmly convinced animal protein is the way to go. I take insane amounts of B vitamins, D-3, and fish oil. I also eat a ton of fat. I go back and forth a bout bone broth- someone had I think it was sweetpeasmommy- said that for people like me, bone broths can cause problems because of the way the components break down. :shrug3 It lined up with what I was experiencing.

Lifestyle- obviously not having been pregnant for 6 years now, I am not dealing with steriods from that. But barefooting made a huge difference in not just me feet, but my ankles, and legs, and knees, and hips- and therefore my back, and everything else. :yes

I know that between there being almost 80 lbs less of me, a high fat/protein grain free diet, and barefooting have made a substantial, sustained, positive change in the way my body functions. I heal faster, cleaner and more completely. I carry a 40 lb bag to school every day. I alternate shoulders. I only rarely have problems. :happytears It's been over 3 years since I sprained anything. :jawdrop :happytears

anyway. sorry . :blush made that AAM. :bag

[nanookmama]

I knelt down today to get something out from under the bed (so, inverted) and discovered that the pressure was SO MUCH better when I stood up. So I hung out with my bum in the air for a while and the pain and pressure is all but gone.

I'm wondering if baby just got his head really low while I was sitting! but moved up out of my pelvis when I was laying down or that I could sometimes work him back up if I was up and walking.

So now I just have to put my bum up whenever I feel him get that low. And to keep him out? Should I try to strengthen a bit?

[Peridot]

that's where a splint or binding cloth of some sort would come in handy. to wrap around your hipbones under your belly, keep the bones together.

[nanookmama]

that's where a splint or binding cloth of some sort would come in handy. to wrap around your hipbones under your belly, keep the bones together.

My belly is LOW. It comes out from about an inch over my pubic bone. Maybe I could wrap it and possibly pull the belly up for support?

[Peridot]

yes, ideally you'd wrap it up and pull your belly up while you tighten it.

[Chaos Coordinator]

i need to start wrapping with my ring sling. belly looks suddenly considerably lower, and i can carry my toddler again, but earlier i sneezed and felt like my pubic joint exploded.

i want to make a list of the supplements you recommend, peridot, so i can try to get them next week. i think OP and i are due around the same time, aren't we?

---------- Post added at 05:20 PM ---------- Previous post was at 05:20 PM ----------

yeah, i'm due 4/10 ish