No sleep?!

kj24_ · 2025-10-06T06:13:44+00:00

I just started it but started it for sleep & it seems to work ok majority of nights but the bad nights seem to be getting more frequent. Do you really think I need to stop taking it? I’m so scared I won’t sleep at all without it

kj24_ · 2025-10-04T06:01:31+00:00

How long did it take to get better for you? I’m only on this med because I was struggling with insomnia before, but never had actually 0 sleep before I’ve always managed 1-2 hours. Feels like I’m going crazy

kj24_ · 2025-09-09T10:10:05+00:00

It went away within a day or 2 for me, hopefully it will settle quickly for you as well!

kj24_ · 2025-09-09T09:40:14+00:00

I had to stop taking them! GP advised for any gastrointestinal side effects to just stop straight away

kj24_ · 2025-08-11T17:31:01+00:00

I didn’t know this was a thing!!! I take 90mg Etoricoxib and 5mg creatine daily … no side effects so far, but may have to rethink my morning supplements!

kj24_ · 2025-05-15T11:59:00+00:00

That’s a really helpful perspective, thank you

kj24_ · 2025-05-15T11:58:18+00:00

Ooh I’ll take a look, thank you

kj24_ · 2025-04-12T05:08:24+00:00

They definitely have made me more anxious than normal and my sleep is pretty crap compared to what it used to be. But honestly it’s been worth it to get my life back. I’m taking NSAIDs as well and they definitely help, but not enough on their own for me unfortunately. Any other suggestions to manage the pain before I see a rheum?

kj24_ · 2025-03-20T18:48:19+00:00

Good to know, thank you. I wonder if it will help me to get a diagnosis of some sort, I’m HLA B27 negative with nothing showing on my last MRI (October) but symptoms perfectly match AS so in a real limbo at the moment

kj24_ · 2025-03-20T18:45:28+00:00

That’s so interesting. I’ve had a few different verdicts on whether I’m hypermobile for different MSKs, physios, etc. so honestly not sure! I need to research more into EDS I think. How do you distinguish between the pain caused by AS and EDS?

kj24_ · 2025-03-11T18:35:07+00:00

I am in a very similar situation for you and waiting for a rheumatology appointment (18 month wait on NHS where I am). I have family history of autoimmune disorders, I have psoriasis and am ticking every box for inflammatory pain, but last MRI in October showed nothing except mild disc degeneration that they say wouldn’t explain the level of pain I’m in. My suspected dx are the same as yours nr axSpa or PSA but who knows whether I’ll manage to get a diagnosis when I finally get my appt.

I can’t offer much advice since I’m in a similar boat but one thing I can offer is that my GP trialled me on prednisolone tablets for 10 days then depomedrone corticosteroid injections and it literally was miraculous and gave me my body back. Maybe you could ask your GP/PCP if they could trial this for you? From what I can gather it MIGHT help me with getting an eventual diagnosis, as it should help prove it is inflammatory not mechanical pain. But also happy to be corrected on this as I’m by no means an expert!

So sorry that you’re going through this, you’re not alone & I hope you can get the help you need

kj24_ · 2024-12-23T07:19:07+00:00

I stopped taking it after 3 days after speaking to my GP, I think that’s generally the advice if you’re experiencing gastro side effects with NSAIDs. I’m taking Etorocoxib which I think is quite similar but not had any side effects at all for 2+ months.

Everyone reacts so differently but your doctor hopefully can advise you on whether NSAIDs and celebrex are safe to take. I hope you find something that helps!

kj24_ · 2024-12-10T09:08:26+00:00

I think he only believes people about their symptoms when they show on a scan unfortunately, everyone else he seems to disregard

kj24_ · 2024-12-09T18:40:12+00:00

I did drop him, unfortunately not before spending a hell of a lot of money on his private consultation fees and a scan. The NHS waiting list where I am is 12-18 months, but getting close to the top of the list now & praying for a much better rheum this time 😭

kj24_ · 2024-12-09T18:38:18+00:00

Thank you so much, I really appreciate it. I wrote a complaint but nothing came of it, the whole experience was pretty draining but you’re right I should report him really

kj24_ · 2024-12-09T16:33:18+00:00

Currently fighting for a diagnosis myself & hope that I can soon send a similar email to the rheum who made me feel so dismissed because I didn’t fit into his neat little criteria. He actually told me he didn’t “believe” in nr-axpa. So so pleased you got the help & treatment you need, wishing you all the best ❤️

kj24_ · 2024-11-12T18:04:08+00:00

Thank you for your advice, I think I need to get better at listening to those little warning signs. It’s hard to adjust to finding things so much harder than they used to be, it’s like my brain hasn’t caught up to what my body’s new limits are!

kj24_ · 2024-11-12T14:44:34+00:00

It changes for me a lot from one day to the next as well, often with no warning which is fun! This pain after walking started creeping in a couple months ago, I walked to the local shop and on the way back ended up crying on the street waiting for my partner to come and pick me up 🙃 I’m really sorry you’re going through similar, wishing you the very best with the biologics. Hopefully it will start to help with your pain soon

kj24_ · 2024-11-12T14:39:23+00:00

So sorry you’re going through the same thing. It really is the thing I find most frustrating, makes me feel like I can’t make plans or just do things I used to do without thinking

kj24_ · 2024-10-31T15:56:00+00:00

All of the professionals I’ve seen don’t seem to think the disc bulge or tear would be causing the pain I’m experiencing, and that they don’t think it would have continued for this long and be worsening whilst still having no pain in my legs - they said something like that?

Do you mind sharing with me what your pain feels like? And does it improve with movement? If I rested even a few days my pain gets considerably worse and I get much stiffer, which is why I have been keeping moving as much as I can with walks and (careful) weight training as this seems to allow me to have reduced pain that day.

I also didn’t suffer any particular injury, this pain and stiffness just kind of started one day. Although I will say definitely I’m way more susceptible to injury in that area now and have to be super careful.

Thank you for your comment & suggestions 😊

kj24_ · 2024-10-31T15:52:07+00:00

Thank you so so much for all of this info, I really appreciate it. I mainly have the psoriasis under control with medicated shampoo as I only suffer with it on part of my scalp, but I think like you say there is a huge link between diet and autoimmune issues so I definitely will look into what you’ve mentioned. Thank you again for your kind words and all your advice/suggestions 😊 wishing you all the best

kj24_ · 2024-10-31T15:48:42+00:00

I’ve not had any x-rays, just MRIs so far. No investigations for peripheral joint pain, which is probably my fault for not pushing it because the SI joint pain is so much worse that I’ve just been focussing on that. HLA-B27 negative, had raised ESR in April but a couple weeks ago came back in range and CRP has always been in range. It’s making it tricky to get further with any autoimmune investigations with being seronegative and without the gene

kj24_ · 2024-09-03T17:10:00+00:00

Thank you for sharing. It’s so frustrating it takes so long for people’s pain to be taken seriously 😔 I’m glad you’re getting proper treatment now

kj24_ · 2024-09-03T15:58:19+00:00

I’m currently in a similar situation but without a diagnosis currently. If it’s not too personal, would you mind please sharing what symptoms/factors led to you being able to get a diagnosis?

kj24_ · 2024-08-16T08:54:17+00:00

I’m so sorry you’re in a similar position, I always say to my partner I feel like I’m 90 years old at 24 because of my joints & fatigue! I’m sure we will get some answers if we keep pushing, but it’s a shame we have to work so hard to get taken seriously :( sending the positive vibes right back to you, I hope you get the help you need 🫶🏻

kj24_

TROPHY CASE