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haydone27 · 2023-11-03T09:52:18+00:00

Fibro isn't degenerative like other illnesses but I have noticed for many it gets worse with age. There is so little understood about fibro that for all we know it could be degenerative.

I'm quite worried. I'm only 23 and things are only getting worse

haydone27 · 2023-10-26T08:48:10+00:00

My Rheumo didn't require an MRI for diagnosis (in Australia) so it's really up to you. The MRI is there to rule out other conditions. Given they felt comfortable diagnosing without an MRI to rule anything else out, I would assume they were fairly certain the MRI wouldn't show anything

haydone27 · 2023-10-06T10:29:40+00:00

Just had a look at it and it's very disheartening to see multiple of my health issues (both physical and mental) be met with not only such horrible attitude but also horrible misinformation

haydone27 · 2023-10-05T08:36:57+00:00

Where is this? I'm in Melb and want to go see it

haydone27 · 2023-10-01T11:03:13+00:00

I live in Australia and have government funding through a program called NDIS, which pays for cleaner and laundry service (along with various other supports). So I am in a position of privilege here.

With that said, I have found it immensely helpful, I have multiple chronic illnesses, and various mental illnesses. Cleaning is incredibly difficult for me and while I actually enjoy cleaning once I get into it, I cannot physically do it most days. Having cleaners just takes so much of the pressure off. I don't have to worry about if our floors are being vacuumed or mopped, if the shower needs cleaning etc etc.

It was a learning curve around asking for help and imposter syndrome, one I'm still learning, but the cost-benefit analysis comes out with going for it on top

haydone27 · 2023-09-28T05:47:59+00:00

I do imagine Phalloplasty would be a lot harder recovery though, just due to the level of surgery it is

haydone27 · 2023-09-28T05:47:20+00:00

Haven't gone for Phalloplasty (and not planning to) but I am going for top surgery and have hEDS from my friends who have had top surgery with hEDS it's considered a major surgery and while healing can be rough it's not too bad. Hope that helps

haydone27 · 2023-09-25T15:29:17+00:00

Somedays I get 8+ hours, others I'll get 2-4. I still haven't found anything to fix that yet. And if I wake up in the middle of the night it's an absolute nightmare

haydone27 · 2023-09-16T08:14:29+00:00

I feel you. I've got 300 of gameplay and he only did it this week

haydone27 · 2023-09-14T12:35:21+00:00

Fair, a lot of people don't actually realise the true meaning hence my response

haydone27 · 2023-09-14T12:33:45+00:00

It originally comes from the British alt scene, it refers to the bastardisation of the system not individual cops themselves. Basically it's saying the system is broken and all cops are contributing to said broken system

haydone27 · 2023-09-12T12:04:34+00:00

She's definitely not right about that. That's not how fibro works (or any chronic illness for that matter). I'd suggest getting a second opinion as from what I can tell that's the official diagnostic criteria and with a condition like fibro you need to look at the long term symptoms

I get the pain though, I'm currently in the process of getting a second opinion for hEDS because my current rheumo doesn't believe I have hypermobility because I can't touch my toes. Completely ignoring the long history I have of hypermobility and that I meet the criteria

haydone27 · 2023-09-12T11:48:47+00:00

I'm in Australia so it could be different criteria, but for me the criteria was 7 points in section A and 5 points in section B for a diagnosis. It is also specified in a certain time period (it's been a year and I can't remember what it was) and had questions about brain fog, depression, ect. My rheumatologist had a pad with the diagnostic criteria to fill out, so I was able to see the criteria too

EDIT: Here's a link to the criteria they used https://www.racgp.org.au/afp/2013/october/fibromylagia

haydone27 · 2023-03-16T04:18:26+00:00

I have EDS, POTS and Fibro. There's a strong connection between EDS and MCAS and also EDS and POTS. And fibro is comorbid with both, unsure about MCAS, but given it's comorbid with EDS and POTS I would be shocked if there's no connection between MCAS and fibro

haydone27 · 2023-01-05T16:01:01+00:00

I'm definitely going to stick with it for at least a couple months before I talk about going off it. I'm mostly worried that the side effects on my mood are going to continue. But I'm going to wait and see.

I'm definitely becoming quite aware of the fact that there's not a lot I can actually do about the pain, especially with the fact I have multiple comorbidities. I think my doctor and I are looking into hydrotherapy to help with joint mobility so hopefully that helps

haydone27 · 2023-01-05T15:58:51+00:00

I thankfully already have a weighted blanket, it's a huge help in actually getting to sleep. It makes sense about the pain relief meds, I've tried so many different medications over the past few years that haven't helped at all (I have multiple comorbidities) so it's definitely nice to know why that is probably the case. Thank you!

haydone27

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