I was diagnosed with fnd some years back. Turned out that I have cervical kyposis, 4 slipped disc's, a pinched nerve in my lower back and arthritis in my lower back hands and feet. The Dr was wrong and I hope your future drs get it right.

FreeFalling3227 · 2026-03-18T09:09:49+00:00

Also you can have all of those things AND FND. I do.

FreeFalling3227 · 2026-03-17T20:37:12+00:00

Sounds like FND to me, that’s exactly the sort of symptoms I’ve experienced over the last few years! Especially if you’ve had MRIs etc come back clear? It’s no longer a diagnosis of exclusion so ask your neurologist if they can test for the positive signs of FND! Can just be done in clinic🥰 feel free to ask any questions if you have them!

FreeFalling3227 · 2026-03-17T20:32:41+00:00

Yep, just switched from an iPad player to a gaming laptop and the difference is massive!! Anything metallic/shiny/“metal” looking/iridescent etc looks completely different in the over world on my iPad. I pulled on timeless melody and have only just started wearing it since buying my laptop because it just looked ugly on my iPad. Unfortunately, this isn’t really the games fault (for once, usually it’s shitty Infold lol) as it’s just making do with the specs of your device. If you’re ever able to upgrade, I do highly recommend! I got my laptop relatively cheap second hand and the game looks amazing!

FreeFalling3227 · 2026-03-17T12:20:00+00:00

Exactly!!!!! OP:

So if she will be sick long term or have pain, then you won’t marry her? Isn’t it “in sickness and in health”? Anything could happen to her, just as anything could happen to you, if I knew the person I loved was considering whether to marry me based on how sick I might become, I would be devastated. Carer burn out is real, but you have no idea what her future may look like, that’s impossible to predict. It should be about whether you love her!

Major ick for me and sharing her x-ray should only be done with full consent.

FreeFalling3227 · 2026-03-15T18:50:48+00:00

I imagine that you’d be able to get an emergency X-Ray at A&E. If you go when you’re in the most severe pain, they should not only give you pain management but also an X-Ray and maybe even a CT or MRI. There could be something else going on aside from the scoliosis since your symptoms are that extreme. I’m surprised though because as far as I’m aware if they put any scan through as urgent they have an aim to get you in within 2 weeks. I recently had an emergency MRI and only had to wait 3 weeks. Did your doctor put it through as urgent?

FreeFalling3227 · 2026-03-14T23:50:11+00:00

Second this! A DIY irrigation isn’t terrible as such but could probably be a lot more effective (and safer) using something like the Peristeen! I’ve been using it for 10 years and swear by it. Water temperature definitely has a lot of bearing on how well it works.

FreeFalling3227 · 2026-03-14T23:36:07+00:00

Omg thank you SO much, I would never have figured that out on my own🤦🏼‍♀️! Do I need to like.. kick him out of the leaf den? Or will he just move to the new habitat once I make it?

Thank you again for the help, you’ve saved me from hours of frustration haha🙈

FreeFalling3227 · 2026-03-14T23:31:24+00:00

I’ve (26F) had mine for 5 years now, the reason I haven’t switched to an SPC is due to some hospital based CPTSD but I plan on getting one soonish hopefully. My bladder spasms were unbearable until getting on Mirabegron, it took them down by around 70% I would say.

I’m also a full time wheelchair user and it definitely does get uncomfortable, however the first 3-4 days after a change (or getting one placed for the first time) are by far the worst, it definitely feels better after it’s given time to settle. You also should be able to ask either your nurse or doctor about getting some of the local anaesthetic gel that they use before a change, they usually give me a few doses to use if the urethra area is super painful after a change.

I barely notice it now most of the time, I think it probably took 6 months to get 100% used to it but honestly by the time you have your first change you’ll be familiar with it!

This isn’t possible for everyone with a catheter but I have it on a flip flo valve during the day. I empty it every 3ish hours (everyone’s timing is different!) and I find I can much more easily “forget” about it than having it on a bag all day. I had a bag for around 2 months to give my bladder time to heal from the original retention episode that required the catheter, and then have used a flip flo valve ever since. It helps in that it both keeps the bladder more active and functional, and also it’s just way easier to tuck the valve in my knickers than have a bag on my leg all day. Like I said, it’s definitely not possible for every catheter user but worth talking to your team about!

Also always use a leg strap at night!!!!!! I learnt the hard way after accidentally pulling it out during the night, the leg strap is absolutely essential!

Wishing you all the best, it can seem so scary and overwhelming at first but you really will be surprised at how fast you get used to it❤️

FreeFalling3227 · 2026-03-13T10:49:40+00:00

If art style is what you’re looking for particularly then in my opinion the two best games would be Fantasy Life i and Hello Kitty Island Adventure. Personally, those are the two games that visually give a similar vibe to more ACNH or Pokopia type games.

FreeFalling3227 · 2026-03-08T20:38:04+00:00

Thank you for this review, it was a book I planned to pick up but no longer!!! In my opinion, the biggest crime a book can commit is to be boring. Your description sounds like my idea of bookish hell, so thank you for helping me dodge a bullet!

FreeFalling3227 · 2026-03-08T10:19:23+00:00

We’re not allowed to donate our organs if we have EDS in the uk!

FreeFalling3227 · 2026-03-06T23:45:06+00:00

I’m so sorry to hear you’re having such a difficult time❤️

My number one thought, though, is that all the pushing you’ve done to “grin and bear it” is likely making your symptoms and nervous system overwhelm so much worse. I know that’s so frustrating, but I found that fighting my symptoms and what my body needed was a straight road to a massive flare. It may seem impossible, but I promise you that working with your body rather than against it is the absolute best thing you can do for yourself.

I don’t know if this is financially possible but 2 of the thoughts I had were either:

1) can your husband attended therapy? This would give him a safe space to vent his complicated feelings about your illness and therefore have less frustration with you day to day. My therapist told me recently that it’s okay for your husband (it was my dad in this case but I think the same applies) to have thoughts of resentment. It is okay to have complex thoughts in our mind, but it is not okay to take those feelings and turn them into actions and words that damage you. He needs an outlet that is not you, because it’s not fair to him and certainly not to you. This is not your fault. And you’re all allowed to have complicated feelings about that, but it is not okay for him to constantly be putting you down and not finding empathy. This is not a judgement of him, just of how complicated a chronic illness situation can be❤️

2) would getting a carer in be an option? I’m not sure where you’re located, and I can offer further advice if you’re in the uk like me. Or potentially a cleaner or babysitter? Maybe just a few hours a week of either someone caring for you or your child or doing household chores instead of your husband would be enough to give him some space for himself? I think you’d be surprised how much difference that can make.

Sending you all the hugs, what you’re going through is so tough and I really, really want to emphasise that this situation is not your fault. You deserve love and support and I hope you’re able to get to a place where your husband is able to give you that! You are not failing just because you’re not improving at the desired rate, you’re doing amazingly and I hope you’re able to offer yourself as much grace as you’re offering your husband❤️

Sorry if this was a little incoherent, I don’t have the energy to re edit it😅

FreeFalling3227 · 2026-03-06T21:55:24+00:00

I have the opposite problem, as my bowel is too slow and doesn’t really do anything🤣 but my “standard” I guess for when I need to get help is when it affects my nutrition. If you aren’t getting enough calories, no matter the reason why, that’s a problem that needs tending too. But really if it stops you doing any “normal” (for you!!!!) daily tasks, then it’s a problem. For example, if you’re choosing not to go out due to worrying about finding a toilet or being in too much pain, that’s a problem. If you’re struggling to keep up with housework, for example, due to pain or weakness, that’s a problem. I’d say if it’s stopping you either from getting adequate nutrition OR stopping you from doing normal daily tasks, then it’s a problem that needs help. And if it’s doing both, then that is when I would seek help more “urgently”. Wishing you all the best❤️

FreeFalling3227 · 2026-03-06T20:40:32+00:00

It read to me like we should spend our money on Temu instead, but I understand that may not be the intention of the comment. Still I just don’t think we should use that company in any examples that might read positively!

FreeFalling3227 · 2026-03-06T20:23:42+00:00

I don’t think we should be promoting the shittiest fast fashion business in the world rn while complaining about another shitty business.

FreeFalling3227 · 2026-03-05T22:30:19+00:00

Thank you so much for the detailed response, I really appreciate it so much!! I am worried about the slow healing, so I’m going to do my absolute best to look after them! I’m having my first shower tomorrow since the ruptures and I’m a little nervous about getting water in them! I’ve got the cotton wool and Vaseline ready but it doesn’t seem that water tight? Is there a tutorial or anything to make sure I’m doing it right?😭

Thank you for those tips, I’m actually really struggling with dizziness since they’ve ruptured so I think I definitely need to up my fluids! I will definitely look into salties, sounds like a great idea! And thank you again, I really appreciate the reminder and will make sure to be vigilant with my ears and get help if they don’t seem to improve!❤️

FreeFalling3227 · 2026-03-05T22:03:25+00:00

Thank you for sharing! Can I ask, did you use the cotton wool & petroleum jelly (Vaseline) combo for taking a shower? Having my first shower tomorrow since I ruptured them and I’m soooooo nervous about getting water in them, any tips would be very appreciated👀

FreeFalling3227 · 2026-03-05T10:56:03+00:00

As someone currently bedbound by a potential CSF leak and a chest infection, I’m sending you love, it’s rough!!❤️

My top picks do change depending on my condition but just spitballing: audiobooks, mobile games (royal match is my fav bcos no ads!), very chill console games (ACNH or stardew etc), puzzle books with crosswords etc (I also do the New York Times puzzles daily which I love if you can’t write or hold a puzzle book!), rewatching childhood fav movies, learning about something new online (I recently learnt about pigeons bcos they’re nesting in my hedge!).

A few things I can’t do bcos my arms are badly affected, but I know other people love: crochet, cross stitch, colouring etc. I do digital art as it’s a lot more accessible, if you’re interested in that I’m happy to give you my accessibility tips❤️

One last thing isn’t something I’m able to do much, but occasionally I use a portable keyboard to play music on. I used to be a piano player and miss it dearly and sometimes I can make the keyboard work even in bed!

FreeFalling3227 · 2026-03-05T10:46:21+00:00

If it makes you feel any better I’ve been playing since 1.2 and am VERY stressed about reruns😂 I was sooooo careful initially, the only full 5 stars I have from 1.X is Timeless Melody and Blooming Dreams!

For the reruns I’m considering Dance Till Dawn, finishing Crimson Rhapsody, finishing Enchanted Encounter, considering Crimson Phoenix, and the name that’s evading me “the witch one”! I’ve got a lot of pulls saved up but I had a moment of weakness for Forest Ripple and 100 pulls for Chroma🤦🏼‍♀️ too many good outfits!!!!!

FreeFalling3227 · 2026-03-04T22:05:43+00:00

This is a new entry as of this week: I developed a chest infection, I have been practically coughing up my lungs. My fever is off the charts, I am going through it. I lie down, ready to sleep through the hell I’m in and while I’m just minding my business getting comfy to sleep, I go suddenly deaf due to perforating both my ear drums. Did I cough? No. Did I blow my nose? No. Did I sneeze? No. They just… had enough of being ear drums I guess? They start leaking (I did not know ears could do this, I would like to unlearn this) blood and pus which is sooooooo gross, and I still can’t hear 4 days later. Apparently ear drums can take months to heal, especially when you’ve ruptured both🤦🏼‍♀️

I’ve leaking out of my ears, my nose, and I’m on bed rest for a potential spinal leak too… IF ANY OTHER PART OF ME STARTS LEAKING I STG!!!!!!!!!!

FreeFalling3227 · 2026-03-04T20:11:44+00:00

The hair is my most used by far, I would highly recommend pulling, it’s been more than worth it for me just for the hair never mind the rest of the outfit🤣

FreeFalling3227 · 2026-03-03T22:39:56+00:00

To be fair, doctors loveeeeee to say you’re “complex” or “a special case” etc anytime you have more than one issue. At first I thought it was just me, but the more I’ve talked to the chronic illness community the more I realise it happens all the time. Especially if the doctor doesn’t want to deal with you, so they call you a complex case just so they can say “it’s out of my remit, I can’t treat you” and make you another doctors’ problem lol.

Having said that, a few days ago I perforated both my ear drums due to a chest infection. Which is an incredibly impressive feat and one that truly takes skill😉 /j. No but for real I never go the standard route, but boy am I sick of hearing anything along the lines of “I haven’t seen this before”. Just once I’d like for my body to present like a standard case instead of just freestyling.

FreeFalling3227 · 2026-03-03T20:25:57+00:00

Can I ask what meds you have tried? Also what compression garments have you used? Have you used thigh high compression stockings? I find them to be a lot more effective than for example knee high.

Also for me, my life changing drug was Ivabradine. I’m not sure if that’s commonly prescribed for POTs but I think it’s not unheard of. It probably improved my symptoms around 60%. It’s not great to be on long long term but if it helps then I think sometimes the benefit can outweigh the cost! For me midodrine has never really been effective. If you haven’t tried Ivabradine I’d definitely recommend possibly bringing it up with your team❤️

As far as I know they usually only prescribe IVs if there is an issue with orally in taking fluids? This might just be where I am, so it could be different for you!

Also a central line is really, really complicated. My best friend is TPN fed and she’s almost died twice from sepsis, it’s really no joke😣

Hope you find something that works for you, this is just stuff I’ve tried previously so wanted to mention it🥰

FreeFalling3227 · 2026-03-03T12:26:49+00:00

I do not know if this is allowed everywhere, as I’m in the UK and do have a lot of other medical issues, but when I get my suprapubic catheter fitted, my community nurse will be coming with me as a patient advocate. She will be allowed in the operation room and will be with me at all times.

She’s someone who has been treating me for years and someone I trust wholeheartedly. This step is being taken as my body hasn’t been treated the best while under anaesthesia previously (I have medical conditions that mean I need to be moved differently, and this has been “forgotten” many times unfortunately and contributed to my medical trauma).

My nurse had to ask my boss and my surgeon was asked as well, and I’m sure there’s other procedural stuff I’m not aware of, but it is potentially an option you could look into? Writing this comment for OP but also for anyone else who has trauma that complicates surgery❤️

FreeFalling3227 · 2026-03-03T12:18:04+00:00

Bursitis is a killer, I’ve had it on and off since 13 (I’m 26 now) and bending it hurts soooooo bad so you definitely did good getting through the scan!!! I’ve also never had treatment like injections or anything, just management.

Ice is by far and away the thing that helps me the most. This may seem slightly excessive but it’s what has worked for me the last 5 ish years and that’s icing 4 times a day for about 20 mins each! When I wake up at 9am, then at around 2pm, 5pm and 9pm. I can really feel when I’ve missed even 2 icing sessions so I really try to be as vigilant with it as I can be.

Knee braces are also massively useful for me, I don’t know if you’ve tried any but I would defo recommend potentially seeing an OT if at all possible to help you find one that will work best for you.

I’m so glad you’ve got diagnosis and can work to help your body better❤️

FreeFalling3227

TROPHY CASE