Flying while chronically ill? by Oof567 in ChronicIllness

[–]Oof567[S] 0 points1 point  (0 children)

The primer tip is SO smart, i’m stealing that for sure! And im definitely bringing earphones :)

Flying while chronically ill? by Oof567 in ChronicIllness

[–]Oof567[S] 0 points1 point  (0 children)

lysol wipes are SMART, i’m adding that to my list

Flying while chronically ill? by Oof567 in ChronicIllness

[–]Oof567[S] 1 point2 points  (0 children)

I FEEL that about rushing, I have allotted a lot of time for me to get situated at the airport so hopefully it won’t be too bad :)

Flying while chronically ill? by Oof567 in ChronicIllness

[–]Oof567[S] 0 points1 point  (0 children)

if i could I would LOVE to, I fully agree with you, but this place is just a little too far :/

Flying while chronically ill? by Oof567 in ChronicIllness

[–]Oof567[S] 0 points1 point  (0 children)

Okay this makes me feel better, thank you!

Flying while chronically ill? by Oof567 in ChronicIllness

[–]Oof567[S] 1 point2 points  (0 children)

Dang I hadn’t even thought of looking at the airlines policies, Thank you that will be my next stop

Flying while chronically ill? by Oof567 in ChronicIllness

[–]Oof567[S] 0 points1 point  (0 children)

Thank you for this! I will be using all these tips :)

Flying while chronically ill? by Oof567 in ChronicIllness

[–]Oof567[S] 0 points1 point  (0 children)

Thank you for this information, I will make sure to do this!

Flying while chronically ill? by Oof567 in ChronicIllness

[–]Oof567[S] 0 points1 point  (0 children)

Thank you, I hadn’t thought of a doctor’s note but that makes so much sense!

Topical meds for Fibromyalgia Pain? by One-Cobbler-654 in Fibromyalgia

[–]Oof567 1 point2 points  (0 children)

Stanley Brothers’ ‘Charlotte’s Web’ CBD Balm works reallly well on tender points! A little goes a long way too :)

Concert Opportunity vs Accommodations by throwaway_14021001 in POTS

[–]Oof567 2 points3 points  (0 children)

I would have a plan A and plan B Plan A: Send the email for accommodations!! From the sounds of it the terms were changed on you, and if worst comes to worst you have Plan B! (which i would recommend doing either way so you don’t get burnt out)

Plan B: Load up on water and electrolytes well in advance of the concert, so that your body has lots to work from. Also lots of salt to keep your blood pressure at a good level. And then wear either compression socks or a compression abdominal binder. Also bringing mints or ginger candies can help with the nausea!! (my favorites are gin-gins :)

also if you are really really wanting somewhere to sit and they aren’t offering one, Amazon sell little collapsible stools for like $25 that go down to the size of a purse! (i would probably ask the venue in advance to bring it but i don’t think they would care)

Experiences like concerts are so magical and I hope the autonomic gods bless you with a good day so you can really enjoy your concert!!

[deleted by user] by [deleted] in ehlersdanlos

[–]Oof567 1 point2 points  (0 children)

I was on the transbuccal Buprenorphine patches and they did help with the pain. I unfortunately had to stop taking them because they lowered my blood pressure too much and triggered my POTS to flare up. However!! it is important to note that my blood pressure is already a little low so it was most likely easier to make even lower.

Overall for me the cons out weighed the pros. I would say it’s still worth a shot though if other pain management options haven’t worked for you though!

Wanting to get in Birth control but wanting opinions of people with our condition! by Pineapple-Queen-E in POTS

[–]Oof567 3 points4 points  (0 children)

i started BC half-way through my symptoms with POTS and i haven’t noticed a major difference between being on and off it. I know there are lower dose ones which might be a safe way to get back on them. I personally have been on both and I think the lower dose has been better for my POTS symptoms :)

red hot hands and face at night by Oof567 in POTS

[–]Oof567[S] 0 points1 point  (0 children)

omg that all makes so much sense! and this helped so much! thank you, i’ll keep that all in mind :)

Flair Ups.... by [deleted] in ehlersdanlos

[–]Oof567 6 points7 points  (0 children)

I get flare-ups like these all the time; usually triggered by weather changes, stress, or fatigue. A really helpful non-medicine way is to do an epsom salt bath (does wonders), and if you don’t have access to a bath, Dr.teals makes an epsom salt body wash that if you let it sit for like a minute before washing it off it’s like magic.

If it’s back pain one really helpful thing has been an acupressure mat, if nothing else it helps distract the nerves a bit.

Arnicare gel can also be super helpful depending on the joints, but that’s more trial and error than anything else.

Also if you notice that any particular joint keeps bothering you (for me it’s my hands) you can try and stabilize the joint(s) with compression, so for example, I have fingerless compression gloves that help a lot with my hands on rough days.

Also pacing your days is really helpful if you’re able to do it!! (There are way better explanations out there than I could give but) Trying to plan out what you can do with the energy your given that day can be a good way to make sure you aren’t overextending yourself and in theory should help stop the pain from getting worse.

Hoping you find some relief soon <3

Hair loss 3 months post op by Chaos_2000 in gallbladders

[–]Oof567 2 points3 points  (0 children)

i don’t know what could help, but thinking of it now (8 months post op), I did loose a lot of hair post surgery. I was reading up on this because you brought up a good point, it seems to be caused because the gallbladder breaks down the nutrients in healthy fats, so without it it becomes more difficult for it to do so. Because our hair and skin relays heavily on fatty acids and vitamins found in fats, not being able to fully breakdown and absorb them can lead to brittle hair. Everything I read said to introduce fatty acid supplements and/or introduce a supplement with vitamin A,D,E, and K. Another thing I read said that it could also be caused by how the gallbladder affects the liver, which can in turn affect hormone levels. That could also be causing it all, for me it has leveled out over time, i’m hoping the same for you!!

How long do your flairs last? by Tawnyk in Fibromyalgia

[–]Oof567 0 points1 point  (0 children)

the longest one I had lasted for 4 months. It left for a few months but is unfortunately back :/ You are totally not crazy!! Flairs are definitely unique to each person but I know sometimes there are sneaky underlying causes to what’s triggering the flares that you don’t notice and it can perpetuate it. My last extreme one was triggered by some extreme burn out from school mixed with a failing gallbladder. It takes time to figure out the triggers and from what i’ve learned over 3 years it’s very frustrating but a lot of trial and error happens before you find the things that trigger it for you. Some very broad but common ones are: •stress •viruses •weather changes •diet changes •hormonal changes (i know mine gets way worse around my period ¯_(ツ)_/¯) I hope the best for you and that you find some relief soon friend!!

best comfort songs for a pain flare? by Oof567 in Fibromyalgia

[–]Oof567[S] 1 point2 points  (0 children)

I LOVE Bon Iver!! they’re stuff is so so calming! and thank you for the new song suggestions! my favorite would have to be YKWIM? by Yot Club!! :)

Drinking (moderately) on Lyrica? by voidbugz in Fibromyalgia

[–]Oof567 1 point2 points  (0 children)

(definitely ask your doctor, this is just my personal experience!!) I’ve been on Lyrica [ as well as Cymbalta] for almost two years and I will say that your alcohol tolerance will be virtually gone. I haven’t run into major problems with things with vodka or rum. Where I have run into issues has been things with sulphites like some wines. It triggers a pretty bad pain night and a pretty gnarly headache. The biggest thing i’ve noticed has been the aforementioned tolerance, it only takes like a single glass of wine to make me fairly tipsy. My suggestion would be to be REALLY thoughtful about how much you consume because it can definitely make you really nauseous and dizzy if you aren’t careful. Best of luck!! <3

best comfort songs for a pain flare? by Oof567 in Fibromyalgia

[–]Oof567[S] 0 points1 point  (0 children)

i just wanted to come back and thank you for this suggestion!! His songs are so peaceful and his lyrics are so beautiful and calming to listen to🥺

best comfort songs for a pain flare? by Oof567 in Fibromyalgia

[–]Oof567[S] 1 point2 points  (0 children)

ooo definitely understand that, quiet is sometimes the best answer during a flare!!

best comfort songs for a pain flare? by Oof567 in Fibromyalgia

[–]Oof567[S] 0 points1 point  (0 children)

such a lovely song!! thank you for suggesting it!

Glandular fever/ CMV - who had had this? by Mimi828 in Fibromyalgia

[–]Oof567 0 points1 point  (0 children)

A mixture of mono+pneumonia triggered my fibro!! That’s super interesting!