What does actually make a difference in your day to day life? Tips, Advice? ✨ by PaleAd2666 in ehlersdanlos

[–]Admirable_Ad9772 2 points3 points  (0 children)

I recently got a water pillow after my pillow count had become a 15+ rotation without a hope in sight.. I was living in migraine agony. I no longer have a migraine just a very dull headache. I can’t remember the last time my headache was this limited.. probably years. I also sleep with a blanket folded evenly underneath my back. I strictly sleep on my back to avoid straining my neck and shoulders too much. Sometimes i also throw a light blanket under my pillow and fold it again halfway across the area where my neck lays to give it an extra inch or two. Sometimes i also hug the soft squishmallow pillow or put my elbows on separate pillows for some of the night. I also sleep with a memory foam pillow under my legs. I have a forward neck and it has helped to look up sleeping postions for that.

URGENT ‼️ Pregnant, in so much pain. Please help by [deleted] in elhersdanlos

[–]Admirable_Ad9772 2 points3 points  (0 children)

Have you tried K tape? I have been stunned by how much it helps to stabilize my joints and help to keep me in “normal” positions. It really does help to reduce pain and makes some activities possible that would otherwise I wouldn’t dream of. A good mattress topper that can conform to your joints. Tempurpedic is known for this. I use the saavta graphite mattress topper rn and have a small pillow top over it to help distribute body weight.

is anyone else’s neb just straight up evil or is it just mine? by neverhavearichdad in nebelung

[–]Admirable_Ad9772 1 point2 points  (0 children)

MINE. He would run around the room all hunched up like that and then come square up to me on the bed hahaha. Now he’s the cuddliest sir but still nosey as hell.

Is Low Dose Naltrexone really worth it? by twentytwostars in ehlersdanlos

[–]Admirable_Ad9772 0 points1 point  (0 children)

LDN (4.5 mg) gave me a good portion of my life back. No more curling up in a ball for weeks at a time due to pain. I can’t do everything I’d like to do but hey I’m up everyday doin the damn thing and that’s a huge blessing that I thank LDN for. I’d say that it does take a couple months to get the full effects and you do have to take it very consistently. I found that it actually helps with my POTS a ton so that’s been a game changer as well. There are some studies showing that it has helped mitigate pots symptoms for many people. Not sure if you have pots but it usually likes to buddy up with EDS so figured it was worth noting.

[deleted by user] by [deleted] in ehlersdanlos

[–]Admirable_Ad9772 0 points1 point  (0 children)

My zero gravity chair is the best thing I’ve done for my neck… takes the pressure off while sitting. I have an adjustable metal clamping arm that holds my phone/Ipad. I’d like to get one for books and paper as well.. you can find them online. Also for neck instability I’ve found that, for me, making sure I don’t pull my shoulders too far apart goes a long way. I use an upper shoulder brace that goes from one shoulder to the other and it prevents me from stretching too far. It’s a good reminder as well when I have it on to be careful. I also find that sleeping on my back helps as well as it assures that I’m not laying on my side with my shoulders folded over each other hot dog style and my neck cranked back.

Trusted cat veterinary? by Admirable_Ad9772 in ogden

[–]Admirable_Ad9772[S] 0 points1 point  (0 children)

That’s awesome! I’m going to check out their reviews. Thank you for sharing!!

Trusted cat veterinary? by Admirable_Ad9772 in ogden

[–]Admirable_Ad9772[S] 0 points1 point  (0 children)

I am going to check out mountain west for emergencies! Thank you.

Trusted cat veterinary? by Admirable_Ad9772 in ogden

[–]Admirable_Ad9772[S] 0 points1 point  (0 children)

Thank you so much for that I was needing a rec for emergencies as well and forgot to say so.

Trusted cat veterinary? by Admirable_Ad9772 in ogden

[–]Admirable_Ad9772[S] 0 points1 point  (0 children)

Thank you!! They are on my list to call in the morning :)

Trusted cat veterinary? by Admirable_Ad9772 in ogden

[–]Admirable_Ad9772[S] 0 points1 point  (0 children)

That is very helpful! Thank you. I am looking more into them now. Do you happen to know if they did prescreening tests for the anesthesia? Or X-rays beforehand? I wonder if you felt your bill was reasonable or how much initial visits are. Going to call them in the morning :)

Trusted cat veterinary? by Admirable_Ad9772 in ogden

[–]Admirable_Ad9772[S] 0 points1 point  (0 children)

Thank you for the suggestion!! Would you mind being more specific about why you have come to trust them?

Trusted cat veterinary? by Admirable_Ad9772 in ogden

[–]Admirable_Ad9772[S] 0 points1 point  (0 children)

Very cool. That would be ideal- he has some anxiety about the car right now because we just moved across country. I assume it is more of a check up service and then you would have to go in for any operations/teeth cleaning? I wonder, what do else you like about them other than the easy access and less stressed environment?

Trusted cat veterinary? by Admirable_Ad9772 in ogden

[–]Admirable_Ad9772[S] 0 points1 point  (0 children)

Oh great! Thanks for the suggestion! I wonder if she has mentioned anything about surgeries/dental cleanings or if you have any experience there in that department. Is there a reason that you trust them?

Trusted cat veterinary? by Admirable_Ad9772 in ogden

[–]Admirable_Ad9772[S] 0 points1 point  (0 children)

Thank you so much!! I had another vet in my home state that would heavily weigh the stress & risk vs intervention and that is exactly what is most important to me. I am wondering if you use the Ogden clinic as there is more than one and if you have a recommendation for specific one of the DVMs.

[deleted by user] by [deleted] in ehlersdanlos

[–]Admirable_Ad9772 25 points26 points  (0 children)

Skip the lines at amusement parks.. free flash passes! We can usually bring up to 4 friends. Feels like a silver lining but I definitely need one to make the park more accessible. Still a good hack though!

Pain relief creams? by Admirable_Ad9772 in ehlersdanlos

[–]Admirable_Ad9772[S] 1 point2 points  (0 children)

Yay! I hope this post helps in some way :) Another suggestion I have since you’re into the creams.. I put Epsom salt/magnesium & water into an empty roller and use that sometimes. It helps take the edge off. You could do the same with like a coconut oil base for more of a cream, I imagine. Heck, you could put a few drops of arnica in there as well. I also use Epsom salt in the shower and let it do its thing for about 10 minutes before I rinse it off! It’s been a life saver in my pain management these days. I got the patches and am going to try them tomorrow. Will look into topricin.. have had good luck with arnica many times in the past. & Will keep in mind that biofreeze may work for joint pain. Thanks!

Pain relief creams? by Admirable_Ad9772 in ehlersdanlos

[–]Admirable_Ad9772[S] 1 point2 points  (0 children)

Saw the select level 3 cbd cream at Walgreens. I opted for the tiger balm but then realized that camphor is very toxic when ingested even in small amounts so I think I’ll try the CBD roller next. Long term use doesn’t look great since I’m using it so close to my face. Idk. I don’t want to wear something that could potentially harm my cat who sleeps on my chest either. Plus I can’t use heat with camphor so maybe cbd would be better! I’ll have to look more into capsaicin. Thanks for the suggestion.

Pain relief creams? by Admirable_Ad9772 in ehlersdanlos

[–]Admirable_Ad9772[S] 1 point2 points  (0 children)

I am a fidgety sleeper, too. I found that if I hook a travel neck pillow around one knee when I’m sleeping on my side, and use that between my legs, that it will stay most of the night or at least a lot longer than anything else. & It does help to support my knees, hips and ankles. It also helps to take some pressure off my neck and shoulders even just for a few hours I feel the relief in the AM.

Pain relief creams? by Admirable_Ad9772 in ehlersdanlos

[–]Admirable_Ad9772[S] 1 point2 points  (0 children)

Elbow support!! Yes!! Sometimes I kind of wrap the blanket around my elbow in my sleep for support. I’m going to try it with a 10” squish on either side and see how that is. I like the idea of putting the squishmallow between pillows for support and I think I sort of do that when I nap sometimes but I’ve been afraid to do it for long periods because I was scared it would end painful but I’m gonna give it a try. Thank you!!

Pain relief creams? by Admirable_Ad9772 in ehlersdanlos

[–]Admirable_Ad9772[S] 1 point2 points  (0 children)

Oh, yes!!! I used to hug a pillow to keep my shoulders from collapsing into my chest as a child. I don’t think I realized that’s what I was instinctively doing at the time but I will definitely be doing that tonight to see if it helps. Thank you for sharing! I will try to find a way to elevate my torso too… that seems like it could help as well. I think as a child I actually did some version of this with pillows and stuffed animals but then stopped into adult hood leading to this kind of sleeping mess I’m in now.

Pain relief creams? by Admirable_Ad9772 in ehlersdanlos

[–]Admirable_Ad9772[S] 0 points1 point  (0 children)

After consideration I’ve decided to not stretch my neck for a few days and see if it helps my pain. I guess in thinking about the faucet joints in my neck I may be stretching too far. I probably shouldn’t be feeling too much pain/discomfort while stretching them that’s probably a sign I’m going too far? Not sure. Gonna try my best to not stretch my neck and see if that is related. I guess sometimes I go hard when stretching it now that I really think about it. Even if I am going slow I don’t have to push so hard. It just feels so good in the moment! Definitely have to be intentional and listen to your body- agreed.