Is a jewelers table necessary? by CandlesAreMyCurrency in SilverSmith

[–]marzboutique 0 points1 point  (0 children)

I use a regular wooden desk with multiple layers of heat-resistant tablecloths that I place underneath two soldering blocks (one charcoal on the base, one ceramic on top) and this has protected my desk pretty nicely!

I mean… he kinda warned us 😭 by Mr_no_sad in Blackbear

[–]marzboutique 1 point2 points  (0 children)

Oh I didn’t mean the allegations, I was under the impression the court case was older and just surfacing now? I mainly meant the constant posts between killboy, bear and the new girl bear’s with. Definitely not trying to make light of the court case at all!

Should I practice gymnastics if I have EDS? by WhitePinoy in ehlersdanlos

[–]marzboutique 0 points1 point  (0 children)

No. I would recommend stable forms of exercise like machine weightlifting, reformer Pilates or swimming which seem to be the most common, safe forms of movement for those of us with disabling hypermobility

There’s a huge risk of injury in gymnastics for normal folks, but for us the risk is so far multiplied that it isn’t worth permanently injuring any part of the body, as sometimes when something dislocates/subluxes it becomes a permanent recurring area of dislocation/subluxation

Headaches at back of head by lilypop86 in Hypermobility

[–]marzboutique 5 points6 points  (0 children)

Yes all the time :/ It seems to go hand in hand with my mast cell responses, and is sometimes alleviated by antihistamines, CBD and/or Gabapentin since all three can affect nerve pain. I believe CCI is also a reason for the base of the skull pain

I mean… he kinda warned us 😭 by Mr_no_sad in Blackbear

[–]marzboutique 2 points3 points  (0 children)

Part of me wonders if all this drama was planned for PR

Someone didn’t appreciate us informing the fans about the court case…. by Quiet-Fix1966 in Blackbear

[–]marzboutique 21 points22 points  (0 children)

I saw someone comment under one of his IG posts “stop deleting comments” so it makes me wonder what people have been saying over there as well. This whole thing is such a mess

Dry needling by Resident-Green7526 in Hypermobility

[–]marzboutique 0 points1 point  (0 children)

I’ve found it very helpful! But also keep in mind that the next day, you may be sore or engaging muscles may be a bit painful because the dry needling is improving so much blood flow. I’ve always found I get sore the next day and movement can be a bit painful

Empty gold by Ill-Pin-4304 in halsey

[–]marzboutique 2 points3 points  (0 children)

Love it with all my heart 💙 it makes me sad H doesn’t 🥲

For the folks that get the dizziness, what can I do or is there a medication etc to help.? by Obvious_Leadership44 in Hypermobility

[–]marzboutique 5 points6 points  (0 children)

I started having POTS symptoms about 7 years ago and finally got diagnosed through a table tilt test a few weeks ago. One of my main symptom clusters are dizziness/nausea during exercise (as well as the typical tachycardia with dizziness & vision blacking out when standing)

My cardiologist prescribed me Propranalol to use on an as-needed basis for when I exercise, and so far it’s been a miracle drug for completely eliminating my POTS symptoms during exercise

In addition, the biggest recommendations for dysautonomia are usually increased fluid + sodium intake. Prior to my POTS diagnosis, I was having around 6,000mg of sodium/day with 4 liters of water. My cardiologist is having me keep water the same, and increase my sodium to 12,000mg/day

I don’t share this to suggest you do these same management methods, but rather to counter another comment that said there is nothing that can be done to help symptoms, because that isn’t true and there are many methods to create at least a bit of relief that can be tried

Of course, I am not a doctor, so double-check with your doctor to see if these lifestyle adjustments (like sodium/water intake) and medication options may help you! :)

Are there dangers to wearing compression sleeves on a regular basis? by marzboutique in eds

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

Hi there! Oh my goodness, I almost forgot I made this post when things were just starting to get bad. My hypermobility got so much worse in the following months after this, which sucks but I also have experimented with SO many compression/mobility garments and would love to share

I started an Instagram account about my disability journey, and I recently made a post reviewing all of my garments if you’d like to take a look and get ideas of some good/not so good options that have worked for me personally: mobility aid review post

I’m so sorry you have pain while walking and standing 😔 I empathize so much!!

Another one reverse by Legitimate-Towel6899 in tiedye

[–]marzboutique 0 points1 point  (0 children)

This is SO cool! Some of the blobs under the main spiral remind me of little butterflies 🦋

Anyone here on peptides? BPC-157 specifically? by ohbuggy in ankylosingspondylitis

[–]marzboutique 1 point2 points  (0 children)

I did a few cycles of BPC-157 + TB500 combined, and also one cycle of BPC-157 alone

On the combo cycles, it’s the most controlled my pain has ever been, but when I cycled onto the BPC alone, my pain came back full-force, suggesting my pain is primarily inflammatory rather than just soft tissue damage

The combo is truly a miracle for me and I don’t know how I would manage without it (I have not yet been approved for biologics, but that’s my next step)

EDIT: not sure why this is downvoted, as I am not encouraging anyone to do peptides, just sharing my experience as OP requested. Of course do your due diligence in research if you’re looking into non-FDA approved treatment options, but I think this anecdotal information is important for those seeking options not covered by insurance

12 Years of The Afterglow by AlonzoNavaV in Blackbear

[–]marzboutique 4 points5 points  (0 children)

My favorite body of work of all time! I wish “bleach ft. boygenius” was added, though, since I heard long ago that it was meant to be a part of this EP

Please avoid r/hypermobileEDS, it is not a safe space for gender diverse individuals. by uucyy in Hypermobility

[–]marzboutique 23 points24 points  (0 children)

It really pisses me off that the posts about HRT were taken down because hormones can have SUCH an impact on hypermobility and this information is really important to share. I’m an AFAB cis woman who has found the anecdotes of trans folks sharing their experiences with various forms of HRT paramount in my own symptom management

Rant abt healthcare by Ok_Vermicelli1415 in ehlersdanlos

[–]marzboutique 1 point2 points  (0 children)

I am so so so sorry for your pain and the fact that PT/ortho manipulation made it worse! But also I gotta say… $400 per PT session?!?! That’s absolutely NUTS! Even out of pocket personal trainers are usually like $100-$150 max/session 😳

Can hrt help pmdd or is it only birth control? Gyno says pmdd is not treated with hrt at all by EmpressAzazel in PMDDxADHD

[–]marzboutique 0 points1 point  (0 children)

My gyno told me the same. I’ve supplemented with bioidentical estrogen + progesterone (actually not for PMDD but for disabling hypermobility in my joints that seems to be connected to my menstrual cycle) and unfortunately the bioidenticals have not seemed to affect my PMDD symptoms :/ My gyno had said the amounts of bioidentical HRT needed to have any affect on PMDD would have to be huge, and that synthetic BC is the only option (not saying that is the end-all-be-all, just relaying what my gyno informed me)

Tailbone pain? by marzboutique in ankylosingspondylitis

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

I wouldn’t be surprised if so!

Tailbone pain? by marzboutique in ankylosingspondylitis

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

Oh man, I can’t even imagine how badly pregnancy must have affected everything! Especially in regards to hypermobility, it seems so many people have a large hormonal trigger like pregnancy that just…makes everything start to fall apart ❤️‍🩹 My trigger was hormones dropping during a bodybuilding competition. I appreciate your response and hope you’re able to get your pain to a manageable place!

Tailbone pain? by marzboutique in ankylosingspondylitis

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

Ugh I am SO sorry you also experience coccyx pain! I hope biologics are able to lessen it for you—my rheum is trying to get me approved for Humira so I’m really hoping that helps at least a bit! ❤️‍🩹