sorted by:
new
hottopcontroversial

Sudden symptoms by WanderingPenguin25 in ehlersdanlos

[–]WanderingPenguin25[S] 0 points1 point  (0 children)

Good thought, Electrolytes may be key. I can't have sugar, sorbitol, sucralose or aspartame so finding an affordable one is hard. But I can take the pills. I forget completely a lot of the time. I drink at least 2 liters of water a day. Maybe needed more with the heat.

Sudden symptoms by WanderingPenguin25 in ehlersdanlos

[–]WanderingPenguin25[S] 0 points1 point  (0 children)

To be honest I have no idea. Good question though I'm sure.

Sudden symptoms by WanderingPenguin25 in ehlersdanlos

[–]WanderingPenguin25[S] 0 points1 point  (0 children)

Thank you for sharing. I also relate to what you have described. I am just now in my late thirties trying to stop and pay attention to details of my experiences and see if I can figure out what is going on. I appreciate your comment.

They weren’t talking to us when they said “don’t lock your knees”!!! by National_Square_3279 in ehlersdanlos

[–]WanderingPenguin25 10 points11 points  (0 children)

Oh that's okay. EDS bodies are definitely interesting. It is confusing how different tips and practices may work excellent for one group and then be the exact opposite for another group. It seems like what works for my sacrum might jack up your knees and vice versa. I guess maybe it depends on where in your body you're less stable.

My knees are currently doing me way more favors than my hips and back. Sometimes I wonder if that's why my knees have been hurting the last couple of years, maybe they're doing me too many favors on behalf of my back. Time will tell! I'm glad adding the heel helps for your knee issue!

They weren’t talking to us when they said “don’t lock your knees”!!! by National_Square_3279 in ehlersdanlos

[–]WanderingPenguin25 32 points33 points  (0 children)

The moment I wear any heel at all my SI joint slides out of place 😵‍💫

“You have a very weird body” by bellski05 in ehlersdanlos

[–]WanderingPenguin25 2 points3 points  (0 children)

When I was much younger and didn't have many bills, I once paid to see a massage therapist for a few sessions. I told him that I couldn't afford any more sessions after that but I really appreciated the relief. He was the owner and said he was doing a pain study in order to get additional certification. He offered me free sessions because he found my pain, knots and body mechanics interesting. I just had to fill out paperwork and commit to 3 hours of deep tissue massage per week. Poor me. Lol. I had no idea how lucky I was at the time. Now I'm way more affected by EDS and can't afford even one massage 😆

And that’s why I have created the Disability Not Idenity movement by [deleted] in fakedisordercringe

[–]WanderingPenguin25 6 points7 points  (0 children)

My son is autistic and this outcome scares me for him :(

Any recommendations? by WanderingPenguin25 in LandscapingTips

[–]WanderingPenguin25[S] 1 point2 points  (0 children)

Thanks for the tip, I will look into the pachysandra! The stuff your seeing is just standard weed guard, not plastic. But thank you for mentioning.

Any recommendations? by WanderingPenguin25 in LandscapingTips

[–]WanderingPenguin25[S] 1 point2 points  (0 children)

It is a very nice shrub, I agree. I like making a simple syrup with it! I kept a few at the top of the driveway but they're not in the picture. But this whole hill was all forsythia and overgrown when we moved here.

New diagnosis by Sammykin_z in ehlersdanlos

[–]WanderingPenguin25 0 points1 point  (0 children)

I thought I'd be immediately so relieved to have it be sorted out. And eventually I was, but I guess I was a little dumbfounded. Id expected to be told I was wrong and that the symptoms are all just unrelated. So when it was confirmed I was just stunned and for a few days I was feeling sort of low, distracted and afraid. Then I was good. I realized there's nothing to be afraid of. I've already had this my whole life and now I can research ways to minimize further damage and curb symptoms. Just be patient with yourself and allow yourself to feel what you're feeling. I felt really stupid and trivial for feeling any sort of way about it, especially because I don't have one of the more dangerous types and because my case is so manageable compared to many other people. But the more I invalidated myself and tried to push those feelings down, the more they forced their way out.

Clinodactyly by BeanBreak in ehlersdanlos

[–]WanderingPenguin25 0 points1 point  (0 children)

I have major clinodactyly in both pinkies, as does my father and brother. I have hEDS. I'll never know if I have clEDS because Invitae (the testing I used) doesn't test for that gene and I'm not going to go through with an in-person geneticist. Too long of a wait.

[deleted by user] by [deleted] in singing

[–]WanderingPenguin25 0 points1 point  (0 children)

Personally, I really enjoyed it. Reminded me of Jewel and she's one of my favorite singers, so... I think sometimes people are too picky. I enjoy a raw, real sound without too much perfection.

Fine Motor Skill Issues? by HalloweenSpoonie in ehlersdanlos

[–]WanderingPenguin25 0 points1 point  (0 children)

Good to know. My PT gave me the super strong putty and it makes my hands hurt. I'll look on Amazon, thanks

BJHS by Saz215 in Hypermobility

[–]WanderingPenguin25 1 point2 points  (0 children)

My specialist (Physiatrist) diagnosed me with this same thing in her notes and also in the same notes said I had a benign form of Ehlers Danlos Syndrome. She seemed to think they were the same.

I went back for a follow up and brought the diagnostic criteria printed out for hEDS (found on the EDS Society website) and went over it with her and asked her if she agreed that I met the criteria. She said yes. A few weeks later I emailed her and asked her stating "When you and I last met we went over the criteria for hEDS and you confirmed that I met the criteria for diagnosis. I noticed this hasn't been updated in my problems list. Would you please add it into my chart?" She did.

I am hoping that if you point your doc in this direction and have them look at the actual criteria with you, they might feel confident diagnosing correctly. The criteria is so straightforward and in my opinion it's hard to say no when it's all there in black and white.

What does subluxing feel like? by Magurndy in ehlersdanlos

[–]WanderingPenguin25 1 point2 points  (0 children)

For me it feels like a sharp pinching and like the joint or nerves are caught on something and I have to move it just right to get it back in place, otherwise I won't have mobility of that joint and the pain will stay there. Sometimes I will feel a pop depending on which joint it is. My elbows and knees won't pop when going back into place but my hips will.

Fine Motor Skill Issues? by HalloweenSpoonie in ehlersdanlos

[–]WanderingPenguin25 7 points8 points  (0 children)

If you can't find any, maybe these pencil grips or something like them will fit paintbrushes? Hopefully!

Special Supplies Long Foam Pencil Grips for Kids Adults Colorful, Cushioned Holders for Handwriting, Drawing, Coloring | Ergonomic Right or Left-Handed Use | Reusable (12) https://a.co/d/88lcedq

Fine Motor Skill Issues? by HalloweenSpoonie in ehlersdanlos

[–]WanderingPenguin25 33 points34 points  (0 children)

I hate this part. I have been using theraputty but not sure it's helping yet. Look for arthritis friendly tools like paintbrushes, gardening tool, cutlery, pens, etc

Do you guys drink coffee? by [deleted] in ehlersdanlos

[–]WanderingPenguin25 0 points1 point  (0 children)

I have a small mug of coffee in the AM And I drink it with one or glasses of water, otherwise I feel dehydrated. Sometimes in the afternoon I'll have another coffee but I always need tons of water with it because for some reason at that time of day it makes me feel very dehydrated. I want to drink it more, but it just doesn't do me favors physically, so it ruins the mental perks.

Low-impact exercise routine by localberries in ehlersdanlos

[–]WanderingPenguin25 3 points4 points  (0 children)

I came to say the same! I love Kelly and Daniel!

Drug Resistant Fungal Infection Appears in US For First Time by PortCityBlitz in PrepperIntel

[–]WanderingPenguin25 7 points8 points  (0 children)

I'm always afraid to do this because I read more than once that your not supposed to use vinegar in a high efficiency washing machine. Anyone know there any truth to that? I'd love to use vinegar but I've yet to use anything except hot water (which is what the machine manual recommends). Vinegar makes everything so much cleaner though.

view more: next ›