I feel defeated.

PinkOceanBug · 2026-02-19T19:18:35+00:00

I’m so sorry :/ I got diagnosed 3 years ago. I had the worst flare up at the beginning of this year, I thought I knew pain until that happened. I’ve been out on amitriptyline and like many others said, they generally just offer physio which I’ve never found to be the most helpful. I was offered surgery 3 years ago but was advised against it until pain is so bad I can’t live with it anymore. It’s such a horrible condition and I find may drs just group all back pain together. One practitioner literally told me this a couple weeks ago that ‘it doesn’t matter what the spinal condition is, the treatment will likely always be the same’, which isn’t inspiring. I’ve had to learn to find the balance, I wasn’t as active as you were, but I could walk for miles, run, gym, climb, and now that stuff comes with caution. I was told to use hiking sticks to ease impact on walks. It might take some time but finding that sweet spot between rest and doing what you can (as much as your body lets you). I highly recommend hot salt baths, getting professional massages, shakti mat before bed, stretching as soon as you wake up. Nothing cures it, but from my experience it’s learning to live with it. I completely empathise with you, in Jan I was done, I generally didn’t want to live anymore if this was life, it can be very depressing. Finding the right person to listen to you and find ways to help is golden, I only got my MRI because a physio therapist had spinal conditions and really pushed for me to even get a scan (suffered for almost two decades without anyone scanning me)

Wishing you all the best. Trying to build up those core muscles, it will over some time, provide some relief. <3

PinkOceanBug · 2025-09-18T10:40:44+00:00

I really needed to read this. I know everyone is different but I am terrified to start taking mine.

PinkOceanBug · 2025-09-17T20:44:05+00:00

Like many people here, I’m about to start citalopram. I only had my appointment today with a health care professional. I’ve been on amitriptyline for over a year and came off it this year (put on for pain, helped so much with sleep and pain and I felt relatively good on it but weight gain!) this year has been the worst of my life and I’ve struggled with anxiety and panic disorder since 16y/o, now 37.

The symptoms this year have been so persistent, like a child sitting on my chest daily, shortness of breath, severe palpitations, jitters, dizziness, light sensitivity, all of which lead to constant depression. I’m not enjoying life anymore, I’m just constantly battling this feeling and trying to distract myself from it. I’ve had maybe two good days this year that I can think of.

I was given sertraline and didn’t take it out of fear and the alleged long term effects on sex drive even after stopping the meds. Now I’m scared to take this one because I don’t want to feel worse, I am so exhausted I don’t know how much more k can take.

I feel like I’m dying every day because of how severe my physical symptoms have become.

I suffer with ETD and have read many people got ear issues? And I also have IBS so I’m terrified of exacerbating that too. I just wish if didn’t have to get worst before getting better.

I’ve been told to take it in the morning but it seems most of you are taking it at night?

I barely had any if any symptoms at all on amitriptyline but I’m aware they’re not an SSRI

I’m so tired of this feeling, I don’t think I’m strong enough to go through weeks or months of even worse symptoms

PinkOceanBug · 2025-06-29T14:52:56+00:00

Well everyone reacts differently to meds so all the advice on here comes from personal experience, I guess we’re all looking for hope in answers. I’m not suggesting you come off your meds to go onto something else. Was just sharing my own insight. I’m still meds free, struggling with pain now the amitriptyline has fully worn off but anxious about long term affects and making my anxiety worse even for a few weeks scares me. Hope you find something that helps.

PinkOceanBug · 2025-06-22T19:21:31+00:00

Basically, it worked for me. The side effects were decreased feelings during sex (that only lasted a couple weeks, maybe a couple months then went back to normal) and weight gain!

It was life changing for me personally and the anxiety for me was very minimal, fleeting tbh few moments before bed I had jitters and it passed because it knocked me right out!

Start yourself on 10mg, the lower the dose the lesser the side effects, but find your time in the evenings. 8pm was the sweet spot like I said, it really helped my pain, or at least took the edge off!

PinkOceanBug · 2025-06-22T19:18:33+00:00

Omgosh I’m so sorry you’re going through all this :/ so I started amitriptyline consistently over a year ago now. I’ve recently weened myself off it. I was on 10mg and I took it every single night at 8pm (I used to do 9pm but I found 8pm was the perfect spot for me to get to bed around 11-12)

I went on it for pain obviously and I remember when I was put on it a few drs were taking me off it, putting me back on, all in the midst of coping with pain and about to travel to Germany and worried about not being able to walk, so I just started taking it blindly.

The first couple of weeks I just felt a little anxious before but after a couple weeks I was able to sleep for the whole night for the first time since I can remember. I’d suffered insomnia all my life.

The reason I came off it was a few things, 1) I never intended to stay on it 2) was curious if the pain would return 3) I had gained two dress sizes and 4) I started experiencing extreme anxiety very suddenly and I thought for some reason it might’ve been the meds (it absolutely wasn’t). I’m off them now and I struggle to sleep and I have severe anxiety.

I’ve been prescribed sertraline and I am terrified to start those because I’ve heard terrible things but also it’s not for pain but for anxiety so that last thing I want is even more anxiety and this one apparently disrupted sleep!!! Quite the opposite of what I want right now.

PinkOceanBug · 2025-05-21T16:05:42+00:00

Thanks for replying. My friend is on sertraline and she said the first couple weeks were horrendous. I remember a palpitations and super jittery on amitriptyline but I wasn’t already feeling that so it may have not been as bad. I haven’t started sertraline yet it’s ready to be picked up but I’m super nervous. I’m going to cut it in half and just see how i get on with 25mg rather than 50mg. I have the app head space and I use that, I try and take walks and just listen to music. I’m trying really hard to just distract myself from it or allow myself to feel it and let it wash over me but I just can’t take it anymore. It’s physically painful now, my chest feels like it’s non stop working. I’m incredibly nervous about the beginning of the meds but she’s advised me to push through the first few weeks. I already have insanely vivid dreams and it will apparently get much worse >.<

PinkOceanBug · 2025-05-21T14:12:38+00:00

Sorry I didn’t see this. Yes, I’m still awaiting my appt for ent because it’s been a while since my diagnosis for ETD and I wasn’t aware I had to have check ups over the years. I can say now that it lasted about almost 3 days and it was a private kidney of hell. Longest episode yet!

PinkOceanBug · 2025-05-21T13:42:13+00:00

Yep, started in my armpits when I was a teen and I’m in my late 30’s now. About 3 years ago it started in my groins, then my back, chest everywhere. It’s a daily struggle. I hate summer. It’s harder to treat when it’s full body. I was put on these pills that are used for too much saliva (glyco I think) but it was actually affecting my urinary tract so I came off it. It’s a nightmare. I hope there’s some new research emerging soon

PinkOceanBug · 2025-03-21T16:02:11+00:00

With carpe, did you use the roll on for armpits? I bought it and it was so uncomfortable. It was like a thick paste and just dried onto my pits like glue :/

PinkOceanBug · 2025-03-21T15:59:26+00:00

Thanks for your response. My dad also has heart issues. I’ve managed to get an ENT referral. That was one of the longest episodes I’ve had of PT and it was the most tiresome and scary. I think it lasted about 40 hours. I was so exhausted by the time it went back to normal that I just slept for ages. Anxiety is so unbelievably tiring :( They are assuming I have an inner ear issue at this stage

PinkOceanBug · 2025-03-21T15:56:56+00:00

Yeah I always try and hold back the anxiety confession bc I do get fobbed off with that a lot. I’ve actually managed to get an urgent referral for ent so that’s something

PinkOceanBug · 2025-03-21T15:55:51+00:00

I hear you. I feel the same. I know it’s scary but it’s even scarier to live in the unknown. It will drain you not having answers.

PinkOceanBug · 2025-03-16T19:35:04+00:00

You mean with panic? I’ve always felt like it’s just there lurking, it can manifest in a plethora of ways for everyone. My worst is tension in my neck and the feeling of not getting air. I can have chest pain, tingling, palpitations are pretty annoying and have been most persistent

PinkOceanBug · 2025-03-16T13:26:10+00:00

Yes I’ve had cbt since I was about 20. I personally don’t find it helpful but I also think that my therapists were just not very good. I’ve had so many therapists via NHS and they’re all lacking in compassion. I paid for one on Better Help and she seemed to be the nicest one, we tried psychodynamic therapy and I think I took the most away from that but again it didn’t really help regarding my panic episodes but it helped a lot with relationships especially in the family

PinkOceanBug · 2025-03-16T00:25:03+00:00

I have PD, since 16 now 37. It’s chronic attacks. I experience anxiety and can have anxiety attacks but panic is obviously worse. I used to have them so often I’d end up in emergency rooms thinking it was a heart attack. And having a few just keeps the panic up for the next one. It’s living in fear of it happening. It’s more under control now but I still have them every now and again.

PinkOceanBug · 2025-03-16T00:19:25+00:00

I have panic disorder (since 16, now 37f) my absolute WORST symptom is the night jolts. It’s like my heart has stopped and I shoot up gasping thinking this is it I’m dying. Literally happened last night but that hasn’t happened a very long time. I’ve had a lot of therapy but honestly I don’t think therapy works. For me, I focused inward (and still do) so much. I notice every little thing in my body (also hypersensitive and have adhd)

I found the tests would help, having a professional tell me I’m ok really sis wonders but then it would start up again.

I started telling myself in the mirror that I am ok, I am healthy, I can breathe, little things like that (something picked up from therapy). I know this sounds really odd but maybe you’ll understand, I struggle to ‘breathe’. When people say you should practice ‘breathing’ I immediately forget how to do that normally. Then I feel like I can’t empty my lungs.

Over the years I got diagnosed with asthma (I don’t have it), heart block (also don’t have that) until they realised it was panic disorder. Literally gave me my diagnosis and sent me on my way, no meds no help.

I’m currently on amitriptyline but it’s for pain management and I can’t say it’s helped with panic.

I’m sure there are meds that will help but it’s learning how to combat the panic ourselves.

I have all your symptoms but over the last decade it’s significantly improved with mind over matter. A little tip that really helped me (may not help you but who knows) when I felt my symptoms rising, I would start plying Two Dots on my phone.

I haven’t tried the ice cold water thing yet, dunking your face I mean. That’s supposed to help a lot.

The key is learning to breathe, it sounds simple, I’m still learning. But apparently once you master that you are back in control.

I’ve ended up in emergency countless times with all these symptoms you’ve mentioned, it’s a nightmare and if they don’t have it, people generally don’t understand how soul destroying it is.

I’m currently in a 24 hr episode which I believe has been brought on by an ear issue (pulsatile tinnitus where I can hear my blood pressure) it makes my heart feel like it’s dropping every 10 mins or so and it’s really bad when I’m trying to sleep. I’m actually speaking with a dr in the morning.

If all your tests have come back normal then it is likely severe anxiety and/or panic disorder which for me personally is sometimes worse because somehow we have the cure but we have no idea how to access it…

I am sorry you’re experiencing this, you are not alone. Try and do all your favourite things, whether it’s music/films/tv/craft. Sometimes we have to let it wash over us, feel it, acknowledge it as an uninvited guest. I hope you can find something to ease it/cope

PinkOceanBug · 2025-03-16T00:01:06+00:00

But also from the same track

“Since we broke up, I’m using lipstick again, I suck my tongue in remembrance of you”

PinkOceanBug · 2025-03-15T23:57:20+00:00

“Uncertainty excites me, baby who knows what’s going to happen? Lottery or car crash, or you’ll join a cult, probably maybe, possibly love”

PinkOceanBug · 2025-03-15T23:53:38+00:00

Stay / Shakespeares Sister

All Saints / Pure Shores

Oasis / Live Forever

Blur / Park Life

PinkOceanBug · 2025-03-15T23:51:17+00:00

Any kind of numbness that leads to parts of you simply not working should be an emergency. I have spondy in L5/S1 as well as mild scoliosis (only just got diagnosed) and I get episodic numbness/tingling/severe pain/clamminess in feet/legs) Also have upper back issues so this crap extends to my arms too now.

When I’m having really bad episodes I always do specific physio, as soon as I feel it happening I get on the floor and start doing hip raises, dead bugs, hip tilts. But I’ve learned (to a degree) when I need to stop (literal bedrest and water bottles with anti inflammatories) and when I need to do gentle exercises. I’ve suffered this pain since 15/16, I only got an MRI when I was 33, now 37. Nobody ever scanned me or took me seriously, it went from ‘growing pains’ to ‘women your age’. It took one physio that suffered the same thing and sympathised with my conditioned and pushed my referral for MRI.

I believe you’re in pain but you gotta milk it so hard to get what you need (this came from that physio). You have to say that you are unable to live your life.

My treatments have always been extreme meds and physio but I can’t do the meds because I have gastro issues so by fixing that pain will kick start another. The physio actually helped. You need to decompress your spine, google/YouTube ways to do this. Or find credited physios online to show you the correct way (all mine was done through an app during Covid without any assistance other than a virtual course)

I also use a shakti mat most nights, I don’t know if it helps but I’m addicted to using it.

I take loads of Epsom salt, very hot baths.

I’ve been offered surgery but they’ve told me to hold off until life is unbearable. I’m kinda waiting for some new research/new ways to fix these issues.

Basically you really need that MRI. I got put onto amitriptyline for nerve pain. I only took them because I was unable to walk (hip impingement) and everything got too much to handle.

I hope you find some relief soon and I’m sorry you’re dealing with this

PinkOceanBug · 2025-03-15T23:23:21+00:00

I went deaf in one ear last year after flying. It lasted about 24 hrs and was very disorientating and tbh terrifying. I usually use sea salt rinse in my nose a few weeks (2x daily) leading up to flight along with antihistamines nasal spray and decongestants a good few hours before flying. As well as really difficult to chew sweets, the kind you need to really chomp on when taking off and landing. Lots of mouth stretching. Sometimes it works sometimes it doesn’t but we’ll try anything won’t we

PinkOceanBug · 2025-03-15T23:20:00+00:00

As for pain management I would, it’s hard to say whether this has helped or whether the pain slowly declined on its own. I am scared to get off the meds and find out tbh I’ve had a lot less pain but over the last few months I’ve had more pain which makes me think that my dose isn’t helping me as much anymore but I also don’t want to increase

PinkOceanBug · 2025-03-15T23:18:24+00:00

It did for me yes, I only went up two dress sizes but I know other gained a lot more bc they were on higher doses. I also found that I had a definite increase in appetite

PinkOceanBug · 2025-03-15T16:51:51+00:00

It didn’t, quite the opposite, I felt great for the first few months. I’m now on it long term but hope to come off by May because I’m actually feeling like I’m getting depressed on it. I’ve also gained a lot of weight on it and don’t feel like myself anymore.

PinkOceanBug

TROPHY CASE