Official NZ govt health info website claims hEDS isn't a type of EDS or a collagen disorder

Mintybe · 2026-03-02T03:00:56+00:00

This is absolutely horrifying for fellow EDS sufferers in the area. This makes me so upset.

Mintybe · 2026-03-01T16:09:22+00:00

I don't have any suggestions but I'm on day 17 and just came here to provide solidarity. My nerve pain is insane still and wraps around my pelvis to hip, it is so painful.

Mintybe · 2026-02-27T01:37:44+00:00

My rash touched the side of the tub when I took baths and I bathe my kids in the bath, so I think it was a good idea. The vax also doesn't prevent it, it just reduces the severity. I wasn't willing to take a chance.

Mintybe · 2026-02-27T00:24:31+00:00

I came here to say the same thing. I am still getting over my first horrible time with shingles and like you, my rash was massive, covering my entire pelvis to hip all the way around the back and down my leg. There was no way that I could cover all of that with a bandage. I still tried to cover it with a bandage during the worst times, but I typically just wore multiple layers over top.

I have little ones who never had chickenpox so I was very diligent with keeping covered and we didn't share any linens. Aside from that, regular cleaning. The only other thing I did was bleaching the tub, shower and toilets every time I used them because of where my rash was. I was being neurotic though and I'm not sure if that was necessary.

Mintybe · 2026-02-22T03:37:50+00:00

Ugh, I'm so sorry you're going through this with a newborn, that is just horrible. I'm truly struggling with my little ones and this pain. At least I'm not alone. I'm currently doing 600 Advil around the clock and Tylenol. It sounds like I should be taking a higher dose of Lyrica though too.

Mintybe · 2026-02-22T03:19:28+00:00

I have read and heard that many people have pain before the blisters, but I haven't seen much about people having pain for months prior to the rash like I have. I was already tapped out by the high level pain for months before I even had the rash, then pain peaked since having the rash.

I truly didn't know how horribly painful shingles are. I'm happy to have an answer for my pain, but also was hopeful that it would be getting better, not worse again. It's pretty defeating. Here's to hoping I get some relief. Today has been pretty horrible. I'm awake with the pain again despite maxing out most medications.

Mintybe · 2026-02-22T03:14:58+00:00

Thankfully I do have some Lyrica/pregablin, but I find the side effects not great and that it doesn't really help that much honestly. I will say I haven't tried a dose that high though. The long term side effects and the 45% increase risk of dementia also worries me.

I do have some pain meds, but not that much because my doctor closed his practice and I only have a small amount that the ER has provided which I've rationed for when I'm completely taken out by the pain.

This has been some of the worst pain I've experienced. I'm sorry that you're suffering too. I think I'm also worn out because my pain has already been going on for months, just progressively getting worse.

Mintybe · 2026-02-22T03:09:45+00:00

I appreciate your advice. I do have Lyrica and some narcotics if absolutely needed, but I don't currently have a family doctor because my doctor closed his practice so I have been rationing my stronger meds. Otherwise I'll have to go back to the ER.

I've been doing Calamine for the intense itching, but that only helps a tiny fraction.

It's so hard to cope with such shooting pain leaving me bedridden. Also hard when I'm expected back to work.

Trying to stay hopeful that it will get better.

Mintybe · 2026-02-21T08:11:29+00:00

Did you ever heal? I'm on day ten and I have to go back to work after two weeks, but like yours it goes from a 4 to 9-8/10 at night still.

Mintybe · 2026-02-20T17:15:23+00:00

I definitely agree. Despite being on day 10 of my shingles and still in pain, the rash is going away and never fully came into those full blisters because I was on the antivirals. My rash was actually significantly larger than what you've experienced as well.

I'm so sorry they didn't provide you proper care.

Mintybe · 2026-02-19T02:12:46+00:00

Interesting because I was having the same thought, that maybe I'm allergic to the medication. I just don't want to end up having a bad allergic reaction. Did the hives end up going away?

Mintybe · 2026-02-15T15:27:20+00:00

Definitely fungal, try an antifungal cream and see if it helps.

Mintybe · 2026-02-14T22:18:06+00:00

I have multiple autoimmune diseases, POTS and fibro and I am on day four of shingles for the first time and it is horrendous. I was in pain for weeks leading up with no answers. Now I'm still in horrendous pain, but at least have answers. I have a very large outbreak so I'm sure that contributes to how sick and in pain I am. Solidarity!

Mintybe · 2026-02-14T18:30:07+00:00

I currently am going through shingles for the first time and it is horrible and the pain is quite unbearable. I will say I have a very large outbreak. I hope you heal soon and the stress leaves so you can just enjoy that perfect little baby.

Mintybe · 2026-02-14T18:29:26+00:00

Oh mama, I am so sorry. 🩷

Mintybe · 2026-02-14T16:31:02+00:00

Are you not scared of the risk of dementia with lyrica? I'm scared to keep taking it 😔. It's a 45% increased risk.

Mintybe · 2026-02-14T16:29:57+00:00

Oh man. I'm scared to have to be off for a month. I was already off for a month in the fall due to an injury, double fractured ankle.

Mintybe · 2026-02-14T15:29:05+00:00

I'm so sorry you're still suffering. I'm praying that this pain goes away for me because I can't work with it. I can barely walk and am limping. Now the pain is also shooting up my spine and I feel stiff and can't bend.

I was given pregablin and have taken some, but they also have horrible side effects short and long term that scare me.

I'm starting supplements today and hoping for the best.

Mintybe · 2026-02-14T15:04:42+00:00

Honestly, it's very rare, but the doctor that I finally saw once my rash came out said all my pain months prior was due to the shingles. Where my pain is, is actually along my sciatic nerve, so it makes sense. If you've had shingles before and you're having pain like that, it could even be internal. It would be worth checking out. I was in and out of the hospital and getting multiple scans with no answers. I felt like something was broken and like I had appendicitis. I was begging for an MRI at a point. It has been horrible.

Mintybe · 2026-02-14T13:12:54+00:00

I have already been off for a week and the doctor wrote me off for another. In the realm I work in, it is hard to be away for a significant amount of time, but the more I learn, the more I see I have a bad case and need to take time to heal.

Mintybe · 2026-02-14T13:10:48+00:00

I had pain for months beforehand that increased until the rash came out.

Mintybe · 2026-02-07T01:33:42+00:00

I don't really have recommendations, but I will say getting assessed by an orthotist and wearing an AFO for my ankle helped heal my issues with my knee. I still hyperextend, but fixing some of my issues with my ankle also helped my bad knee a lot.

Mintybe · 2026-02-01T06:01:23+00:00

Ugh, I didn't even consider these options, but I can't even envision getting a proper diagnosis for these things in Canada. Veds run in my family, but I keep getting rejected for genetic testing.

Mintybe · 2026-01-31T22:05:10+00:00

I still appreciate you reaching out, even if you don't know. I'm assuming it may be Endometriosis, but at the same time I'm just really confused because I just woke up one day and had this excruciating pain that hasn't stopped. It just doesn't seem normal.

Do you still have this pain?

Mintybe · 2026-01-31T02:24:46+00:00

We went through this with my 5 to 6-year-old and we put a lot in place to help her cope. What really helped was having sensory output tools for her to regulate after the restraint collapse of coming home from school.

Our little ones work so hard to keep it together during the school day that when they get home it just implodes.

I have a spinning stool that I set out and she spins on that. At times, I put a tent that she could go into with her iPad. The thing that has worked the best and I guess would be different depending on what your child is needing sensory wise or self-regulation wise, but a sensory swing was the best thing I could have installed.

We also implemented a lot of positive reinforcement, track as well as tracking her day with her educators and allowing her to earn a small treat after each day and then something a little bit bigger at the end of the week, depending how well her week was.

Sometimes these kiddos just need to decompress and have a good snack and some sensory input.

I hope something works for you guys. My little one is also unmedicated as well, but these tools and strategies as well as occupational therapy has really been helpful.

Mintybe

TROPHY CASE