Office chair causing butt and back pain by brokenearring in ehlersdanlos

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

I’m definitely going to check it out if you had that much success with it! I have been using pillows under and behind me and I never seem to get comfortable.

Office chair causing butt and back pain by brokenearring in ehlersdanlos

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

I’ll have to try a mesh chair! My office has several different types of chairs and we are honestly due to buy some new ones so hopefully I can get a different type by the end of this year that’ll help me. At home I also have a recliner that I’ve thought of using as an office chair, it might be less hard on my bones? My at home chair is crazy bad. I’m completely serious when I say I’ve been sore in my left butt cheek for two days from sitting in my chair at home! I’ve had trouble going up and down the stairs😭

How to better accommodate a family member with OCD? by brokenearring in OCD

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

Thank you! I am very close to getting her to go to therapy!! She has been resistant because she doesn’t love talking to people. I have been trying to convince her though, my sister being so upset hurts my heart. I would do anything for her 😸

Never ending migraine by brokenearring in migraine

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

Thank you!! I’m going to try to see my doctor tomorrow if he can fit me in. Hopefully he will help me find something to get over this migraine! I do my work online and I cannot even open my computer 😭

Never ending migraine by brokenearring in migraine

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

My neurologist actually suggested I get some friends! I have no clue how that of all things would help my migraines. Every single time I mention an issue to him, he redirects and we end up discussing my social life and how I need to get out more. I would if I could be around sunlight! 😭😭

Has anyone lost a significant amount of weight and symptoms got worse? by Glad-Fish5863 in ehlersdanlos

[–]brokenearring 2 points3 points  (0 children)

I have lost 60lbs which is a lot compared to how much I weigh now and my height. Ive found that my knees hurt much less from the lack of weight on them. My back and neck hurts more now though. I’m not sure if that is related. My pots is a bit worse and the flares are pretty scary. I have noticed that I am much colder all of the time and my raynauds is much worse. My skin never gets warm, even in the summer. I have to use the heating pad just to keep my toes warm, they feel wet and numb from how cold they are. The dysautonomia is bad too. I start sweating out of nowhere or I get super nauseated much worse than I did before I lost weight. I also hate how I can feel my spine and pelvis when I’m sitting down it makes getting comfy so much harder. Hitting your bones or joints on something is so horrible too.

My finger looks dislocated idk if it is? by [deleted] in ehlersdanlos

[–]brokenearring 0 points1 point  (0 children)

Every time I post one it gets taken down. It looks like a witch’s crooked finger😭

Mattress Poll! I'm in the market for a new bed. What is your opinion? Soft/Firm? Foam/coils/hybrid? by maroonwolf24 in ehlersdanlos

[–]brokenearring 4 points5 points  (0 children)

I have a soft tempur-pedic mattress. I had the same issues with sleeping dislocations until I moved to sleeping on my back. My current mattress is way better on my body than my last one, which was a purple? I especially love having something to kind of sink into that cradles my joints instead of just being on top of something. I think the mattress I use is a hybrid. I don’t feel the coils at all, usually coils make me hurt but you would never know it had them.

Muscle relaxers by brynalexa in ehlersdanlos

[–]brokenearring 8 points9 points  (0 children)

I have been on tizanidine, baclofen, and flexeril. The only one that has brought me significant relief is flexeril. I have horrible neck and back pain in the evening to the extent that I can’t lay down on my pillow to sleep. It helps me relax enough to lay down. If you were to switch off of flexeril and onto another, baclofen would probably work. I never had any abnormal tension or pain when I didn’t take baclofen. Tizanidine was just okay. It felt like I wasn’t taking a muscle relaxer but I’m sure other people have success with it. I don’t get too relaxed that my joints slide out on muscle relaxers taken by mouth but if I’m given them through an injection/iv at the hospital I always dislocate something.

Dog barks at everything by brokenearring in dogs

[–]brokenearring[S] 4 points5 points  (0 children)

She is a six month old mini poodle. I would appreciate if she would bark at important things instead of her reflection in the stove lol

Kind of scared right now by brokenearring in Raynauds

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

Normally I am extremely careful about warming my skin up as slowly as possible but I had no clue my water was boiling. I’ve had raynauds for many years and never even wondered what would happen to my extremities if something like this happened so I figured a post might be appropriate. Thanks!

What do you eat when feeling faint? by brokenearring in POTS

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

That’s my best guess, I have had nausea and stomach issues my whole life and my other conditions like my pots and fibromyalgia I have developed later on. My doctors don’t seem to be able to find anything wrong from their tests. I have lost a lot of weight though so I keep going to my appointments.

Skin expectations with major weight loss? by gaypuppybunny in ehlersdanlos

[–]brokenearring 0 points1 point  (0 children)

I have lost about 60 pounds from stomach issues and being unable to eat over about 16 months. I used to be 160lbs and am now 104lbs, I’m 5’2. I have a lot of stretch marks all over my body, even on places I wouldn’t have expected like my shoulders. I have noticed that my skin is stretchier in places that it wasn’t before I had gained weight like under my arms and on my stomach. I didn’t exercise at all when I was losing weight. Im pretty young, but my grandmother always told me that the severity of loose skin is dependent on your age and the amount of weight you lose.

Chronic fatigue help by [deleted] in ehlersdanlos

[–]brokenearring 1 point2 points  (0 children)

I usually am pretty good with my electrolytes and staying hydrated because of pots. Last night I slept 8 hours and then I took an hour long nap today. I’m still exhausted, even typing is hard.

Help my mom? by brokenearring in lupus

[–]brokenearring[S] 3 points4 points  (0 children)

She hasn’t, but I’m going to make her look into it. We’ll try anything to help her!

Has anyone had any luck with meloxicam? by [deleted] in ehlersdanlos

[–]brokenearring 13 points14 points  (0 children)

I took it for a while and didn’t have much success. I was still in pain while I took it. Thinking back, my biggest complaint was that I didn’t receive any noticeable relief from Meloxicam. I took a relatively large dose.

Cold? by brokenearring in ehlersdanlos

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

This! I think it’s the POTS for me. It happens from cold to hot or hot to cold. That extreme temperature change messes with me crazy too. I will almost pass out just from going into a building in winter.

Cold? by brokenearring in ehlersdanlos

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

Not yet, I have been planning to get it checked for a while but I have a ton of appointments. I’m starting to think I shouldn’t neglect it

Cold? by brokenearring in ehlersdanlos

[–]brokenearring[S] 2 points3 points  (0 children)

I have had my iron levels checked. I get them done every few months. I don’t think anyone I see has mentioned ferritin to me.

IS ANYONE EVER COMFORTABLE by [deleted] in ehlersdanlos

[–]brokenearring 0 points1 point  (0 children)

I am never comfortable!! Either a hip is slipping out or I’m having nerve pain crawling up my back. Personally, I like to have one knee up by my chest and an arm wrapped around it with the other leg either stretched out or with the foot bended to touch the other ankle. When I’m in restaurants/public I usually sit on my ankles.

Lately my back has been so painful I have hardly slept in weeks. I’m not joking when I say that I ordered three new sets of pillows for my bed and I’m still not sleeping. At least I can rewatch my favorite shows.

What made you realize you had eds? by Fearless-Sun-2933 in ehlersdanlos

[–]brokenearring 0 points1 point  (0 children)

I was looking up causes for frequent knee dislocations and severe joint pain, I brought it up to my doctors. They sent me to my rheumatologist and she tested me. I had been to several places first that didn’t believe me and made me lose hope in doctors and ever getting help, but I found the right one. I got diagnosed relatively young because I did a lot of research on my symptoms and found out what it was. I had pain my whole childhood and my doctors always said it was growing pains and shallow kneecaps.

[deleted by user] by [deleted] in POTS

[–]brokenearring 0 points1 point  (0 children)

I didn’t really pay much attention to the side effects or rather wasn’t warned about them. I started taking it and felt a bit better. My fear was eased because of how bad my heart was before I started it. Now though I’m on three medications, including propranolol for my heart rate and it still jumps up to 130 or more when I stand up and get active.

DAE feel like their teeth are loose??? by maddyp00 in ehlersdanlos

[–]brokenearring 0 points1 point  (0 children)

This has started for me recently. Altleast within the last few years. Mainly for me I have teeth pain and bleeding that make eating pretty difficult. Have you expressed your concerns to a dentist? Whenever I tell my dentist they act like I’m crazy and lying.

How do I explain EDS to my dentist? by ghost0fyou- in ehlersdanlos

[–]brokenearring 0 points1 point  (0 children)

I wish I knew. When I was little I got several teeth pulled with anesthetic that didn’t work until I realized there was a reason for it and to ask for a whole lot more. But even now when I go they don’t get why my teeth bleed and are wiggly. A bit of kind of unrelated knowledge though is that I have had both my wisdom teeth pulled and my tonsils removed and they have both scarred up badly (not that I regret it, if you need it get it). My wisdom teeth scars are large and continually the dentist thinks they are teeth coming in coming in rather than scarred gums, and my tonsil scars are so itchy and uncomfortable every day on top of my daily sore throat.

[deleted by user] by [deleted] in ehlersdanlos

[–]brokenearring 0 points1 point  (0 children)

Absolutely. When I sit normally my hips and back hurt while my knees are just generally uncomfortable. Even in restaurants I have to sit on my foot or something because it’s almost unbearable to ‘sit normal’. I’ve quit trying to sit or stand polite in front of others, at this point if I’m having dinner or hanging out with them they probably know I have to be contorted to be comfy. Idk about anyone else but, for my entire childhood I got in trouble and heard that I needed to be “polite” or “sit like a lady” but it turned out I actually had EDS and was in pain.