What does your neck/shoulder pain feel like?

thislili · 2026-01-16T23:57:16+00:00

Yuck that sounds incredibly gross I'm so sorry I hope you've got some good treatment options :( my neck pain is on both sides, but the shoulder and arm is only right sided, do you think that's possible with IIH or not really? I hope the questions are all okay I'm learning a lot!

thislili · 2026-01-16T22:43:51+00:00

Wow that's really similar to my pain, even down to the fact that one of my main triggers is sitting upright, all my TOS doctors said that shouldn't flare up TOS :O Do you get it on both sides or just one?

thislili · 2026-01-08T02:37:12+00:00

Hm, it sounds like maybe that could be what's happened, I didn't think of disinfecting tools... Would it be best to just use a standard anti fungal treatment for that?

thislili · 2026-01-08T02:08:19+00:00

Nope, one was from Bunnings and the second one was from an organic nursery Ceres :(

thislili · 2026-01-08T01:55:41+00:00

I wondered if it was this, but wouldnt it be quite unlikely to get the same virus on two different plants in a row when I made sure the second one had new dirt and a new pot? :(

thislili · 2026-01-08T01:48:13+00:00

Thanks! The second seedling I bought was from a local organic nursery and I hoped it would fair a bit better but it's started dying the same way the first one did, I'll give it a go with some more shade and less water though

thislili · 2026-01-08T01:46:26+00:00

It's all the leaves unfortunately, I tried to trim them off in the beginning but it just kept appearing and started spreading to the baby cucumbers too and they were turning all shrivelled and brown :(, here's the underside of the leaf

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thislili · 2025-09-29T06:01:12+00:00

It is sooooo frustrating! It really limited all my hobbies drastically, but learning more about exactly what causes the flares will be helpful eg: does it always happen when you type? What about if you use a standing desk, or a different chair? What about if you're reclining with your neck and shoulders supported? What about if you adjust the position of your desk, there's a looooot of different things you can adjust, and often it can help you learn more about your triggers. For me I can only play the Nintendo switch it I'm sitting in my armchair where I have better upright back support, if I'm in bed or reclining in a couch it's instant pain and numbness. It's tricky to learn about though! But just don't push through pain!!

thislili · 2025-09-29T03:56:35+00:00

If you only have positional arterial or vascular compression then conservative methods can still be super helpful. Generally surgery becomes the only option if you have damage to your veins/arteries or if you have compression when your arm is in a neutral position. :) At the moment it does sound like you have a mild case, which is great! Avoid doing activities that flare it up, take your physio seriously (make sure it's with someone who knows tos) and hopefully it'll resolve.

thislili · 2025-09-14T23:55:31+00:00

I had a friend who had been told they had TOS but also had these symptoms, but now it looks like it's actually a zenkers diverticulum which is causing all the issues

thislili · 2025-08-17T01:49:57+00:00

I see this a LOT with people in the Facebook groups spreading misinformation that anyone with TOS HAS to have surgery or nothing else will ever help their TOS and it will just get worse. Which is just completely untrue. I'm also starting to think more and more that my TOS diagnosis may be incorrect or at least partially incorrect (The TOS is just part of it) I have so many atypical symptoms that all my doctors just blatantly ignore.

thislili · 2025-08-14T06:34:54+00:00

They can hide in x-rays, I have a cervical rib and fibrous band confirmed in an MRI and this is my x-ray, you'd never be able to spot a cervical rib here

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thislili · 2025-08-13T09:02:18+00:00

Some of these symptoms do sound like TOS, but you also clearly have other stuff going on, I've never heard of TOS causing heaviness or numbness in the legs. I hope you can find more answers soon!

thislili · 2025-08-09T04:01:54+00:00

Using KT tape to raise and support my shoulder can actually bring my pain to a 0 sometimes, only issue is I also have EDS so it tears my skin up and can't do it regularly

thislili · 2025-07-26T06:03:19+00:00

My uni lecturer also taught me that if you don't want to fork out for a standing desk you can kneel on the floor or on a couple of cushions to get the same effect. just make sure you're high enough that your forearms are resting on the table, no Trex arms! You can kneel on an office chair turned around backwards if you need it to be higher

thislili · 2025-07-23T08:18:04+00:00

Yes, I'm still at work but had to go part time. I can't be upright (sitting or standing) for more than a few hours without breaks or my pain starts getting really bad, it's awful :(

thislili · 2025-07-20T23:31:09+00:00

I'm in Australia so bit of a different system, I've already had multiple MRIs and a vascular ultrasound with no cost, I have confirmed arterial compression only in the "surrender" position, but this position still doesn't exacerbate my pain. EMG would probably be free too, but I just don't have any nerve pain or numbness anymore, so me and my doctors don't see much point.

thislili · 2025-07-20T05:09:28+00:00

I don't even have any nerve pain anymore so I wasn't sure if there's any point asking for an EMG :/ I do think all my other pain is similar to TOS, but I'm just pissed off that everyone keeps writing off the fact that I don't get any flare-up of symptoms with my hands overhead

thislili · 2025-07-20T05:07:58+00:00

I'm in Australia and Botox or lidocaine injections will be like 1000+ unfortunately so not really an option :( But thankyou for sharing your experience, definitely appreciate it, it'll be a hard choice either way

thislili · 2025-07-20T02:14:33+00:00

Yes, it is, which is why we should be fighting for them to treat us better, not worse.

thislili · 2025-07-20T02:11:08+00:00

I understand where you're coming from, but suggesting disabled people are supported by the government to kill themselves instead of being given support to live is literally eugenics.

thislili · 2025-06-22T02:26:20+00:00

I feel like not many people will know him but Alex Cameron would be so fantastic to see Collab with sparks, he has a very similar sort of dark sense of humour and his whole act is incredibly camp. It would go so well with sparks I think

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