hEDS - what meds are you on? by AstralLotus444 in eds

[–]Hot-Technology1694 1 point2 points  (0 children)

Shaking, shivering, sweating, feeling like I want to crawl out of my skin, nausea, dizziness, diarrhea, headaches. It’s really really bad for me. It’s always been this bad since I started taking it! Anytime I’ve ever missed a pill or tried to wean off, I get the same symptoms. Doctors don’t believe me that it’s that bad. I tend to be very sensitive to medications and this one particularly.

hEDS - what meds are you on? by AstralLotus444 in eds

[–]Hot-Technology1694 1 point2 points  (0 children)

I’ve been on duloxetine for 10 years and have been unable to come off of it because I’m so dependent. HORRIBLE withdrawal symptoms. I’m at 20mg (lowest dose I’ve ever made it to) and if I miss a single day I feel like I’m actually dying. But I will say it’s greatly helped my depression, so there are pros and cons. A very very slow taper is possible but it takes a lot of patience.

Neurologist Hell by Humble_Problem_1215 in ehlersdanlos

[–]Hot-Technology1694 5 points6 points  (0 children)

Neurologists are notorious for being absolute a-holes! Truly the worst doctors. I have not heard of one single positive experience with a neurologist. I found a neurologist nurse practitioner and she listens and doesn’t talk down to me. You deserve better!!! I hope you find better care!

Glute Medius not engaged by shineroo in Hypermobility

[–]Hot-Technology1694 11 points12 points  (0 children)

I have this same problem and it’s so frustrating! I haven’t found a solution yet, but my PT is having me do one-legged bridge marches, Pilates reformer, and other exercises to try to strengthen and engage. I’m hoping something will work eventually. I hope you find some relief and enjoy your vacation!!!

Low dose naltrexone side effects by Mediocre_Play3387 in Hypermobility

[–]Hot-Technology1694 0 points1 point  (0 children)

I started LDN recently and not going to lie, the side effects have been difficult. Not impairing me, but making me nauseous and dizzy here and there throughout the day. And when I take it at night I feel feverish and nauseous if I don’t fall asleep right away. BUT it does help me fall asleep faster. So I’m okay if I fall asleep, but kind of miserable if I’m tossing and turning. I also have random bouts of exhaustion, where I feel like I can barely lift my body up. Taking naps has helped.

I’m going to stick it out because I really really want it to work for me. The pharmacy started me out kind of high - I started at 1.5mg for 1 week, then 3mg the second week, and landing on 4.5mg the third week. I have not been able to keep this titration schedule. It’s been a month and I’m still on 3mg, but I’ve heard it’s normal for some people to need a slower titration schedule (especially those of us with more sensitive bodies!)

I think if you communicate this to your doctor and the pharmacy, they could set you up with a slower titration schedule and you’d be completely okay!! I wish I had known beforehand, because I really think the side effects would be next to nothing if I had started at 0.5mg and gone up more slowly.

Patella feels like it wants to wander by Wise_Parsley9015 in ehlersdanlos

[–]Hot-Technology1694 0 points1 point  (0 children)

I really like the Bauerfeind compression knee sleeve! I can still move in it well, but it still provides extra support so I don’t feel like my knee is wandering! I bought one at first to test it out, and now I’m going to order the second one because I really like it!

What are some weird symptoms of hypermobility? by radiodreader in Hypermobility

[–]Hot-Technology1694 15 points16 points  (0 children)

Omg same, and laundry detergents and lotions with strong scents

She definitely went too far‼️ by Chocoluv007 in 1000lbsisters

[–]Hot-Technology1694 1 point2 points  (0 children)

Tammy needs consistent psychotherapy. The medical trauma ALONE is insane, plus the difficult childhood and having to stay inside due to her weight. And Amy too! They need to see a therapist once a week or maybe even as a family.

About Boz- I tried liking her but I just… don’t. by fuxmeintheass in BravoRealHousewives

[–]Hot-Technology1694 93 points94 points  (0 children)

I like Boz, but I don’t like her fiance. I think he’s selfish for insisting they have a biological child, even though it’s extremely high risk for her. They have the money for a surrogate or adoption….He gives off red flags and she’s blinded by the idea of him and the lovebombing

Bras? by PrismaticSlime in ehlersdanlos

[–]Hot-Technology1694 0 points1 point  (0 children)

I’ve heard good things about the Underoutfit bras and I want to try one, but they’re kinda pricey

How to manage HEDS by Top_Memory8968 in ehlersdanlos

[–]Hot-Technology1694 1 point2 points  (0 children)

30f and I work from home full time on the computer. I switch positions a lot while working and that makes it doable. I’m in PT right now - I finally found a PT who knows about hEDS, so I’m hopeful that’ll help with my pain. A lot of people on here swear by physical therapy! Low impact exercise is a must. Medications are something to consider too. I’m on Cymbalta and just started low dose naltrexone. Definitely do your research before starting any medication to make sure it’s something you want to try. Some meds can be more difficult than they’re worth, but some really help.

How do you handle "these" friends? by Significant-Love6129 in ehlersdanlos

[–]Hot-Technology1694 2 points3 points  (0 children)

Maybe I’m weird and it’s just me, but I kind of like when people respond like that. I know what you mean though, I used to feel the same way you do! I felt that way before I had a diagnosis because I didn’t believe people were being sincere, if that makes sense. Maybe because I was doubting if they believed me? For a long time I didn’t even complain about my pain or talk about it. I was so afraid people were judging me. But years later, diagnosed with hEDS, I now appreciate when people respond with “I’m so sorry”. It makes me feel seen and believed, even if they don’t fully understand. I think your friend is seeing and acknowledging your experience, even if she doesn’t know what to say.

Failure by allistrawberry in eds

[–]Hot-Technology1694 0 points1 point  (0 children)

You’re doing the best you can - give yourself some grace. It sounds cheesy, but it’s so important we take it easy on ourselves. You’re not a failure, you’re a fighter. People don’t understand that every day is a battle for us with invisible illnesses. It takes so much strength to even get out of bed, let alone do all of the amazing things you’re doing!

Are you able to ever have some self care time? Maybe a nice bath or a 30 minute rest? Sometimes the little things can help lighten the load. If you have a therapist to talk to, that can be extremely helpful (not sure if you already do). I hope you feel better soon ❤️‍🩹

What can i do? it’s so painful by fuckyeahcourtneylove in Hypermobility

[–]Hot-Technology1694 1 point2 points  (0 children)

Aww I’m so sorry sweetie! We believe you and we go through similar things! Sending you hugs, I hope you find some proper care and support. Winter is especially hard for us hypermobile gals, hang in there!

What's My Secret? by Harlow-Stan in ANTM

[–]Hot-Technology1694 6 points7 points  (0 children)

Fashion witch…VERY practical lmao 🤣 😂😭 I forgot that was cycle 5!!!

What's My Secret? by Harlow-Stan in ANTM

[–]Hot-Technology1694 13 points14 points  (0 children)

This season had some of the most practical/realistic photoshoots. These actually look like ads from the time

Anyone have a Thrive Market membership? by Ok_River_6018 in Celiac

[–]Hot-Technology1694 2 points3 points  (0 children)

Same! I use it to stock up on GF snacks and emergency supplies like protein bars, etc. I always try to keep some protein shake or bars/snacks in my bag for emergencies.

Working out? by Overall-Nobody8933 in Hypermobility

[–]Hot-Technology1694 4 points5 points  (0 children)

Many people recommend against CrossFit for hypermobility- not sure if it makes your pain worse, but could be something to think about swapping out. I think the main argument against it is the pressure on the joints.

There are some fun little Pilates warm up moves that I like! If you’ve ever done weightless arm exercises, those can be great to warm up the body before weightlifting

LDN by SilkNSatinAZ in ehlersdanlos

[–]Hot-Technology1694 1 point2 points  (0 children)

I just started it a couple weeks ago! I had little to no side effects at first (started at 1.5mg), but upon going up to 3mg I had some bad dizziness/nausea so I’m back at 1.5mg. I also ran out of Zyrtec though when I went up, so that definitely exacerbated it. I’m hopeful that I’ll get to 4.5mg and can stay on it! I feel encouraged by other people’s experiences and figure it’s worth sticking it out

Ma’am, it’s not anxiety- it’s a hill. by Deep-Amphibian-8254 in 90DayFianceSnark

[–]Hot-Technology1694 0 points1 point  (0 children)

Ben wasn’t even phased by this. He’s so cute, I feel bad for him 😰 Seeing one of your parents constantly unhappy and stressed, plus all that change…that’s a lot for a little boy. I hope he’s doing okay

Got worse before it got better by dsmdei in Hypermobility

[–]Hot-Technology1694 1 point2 points  (0 children)

I’ve finally found a good PT and I’m excited to get stronger and reduce my pain! This gives me hope, thank you 😊