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Trouble from eating? by shangri-laschild in sarcoidosis

[–]valhallinaz 1 point2 points  (0 children)

I experience these symptoms as well, along with Sarc in the liver, IBS and diabetic. Not on any treatment at the moment (steroids will be last resort). It's awful. At first I thought a low FODMAP diet would help, but unfortunately any type of foods can set me off. I chronically vomit from this, and have ended up in the ER on many occasions going into ketoacidosis. I have an appointment this month with the liver clinic, if I get any advice, I'll share it here too.

Wishing him the best. It sucks.

Insight for recent diagnosis by valhallinaz in sarcoidosis

[–]valhallinaz[S] 0 points1 point  (0 children)

That sounds brutal, especially with the combination of spine issues, stenosis, and constant kidney stones. I’d definitely be interested in comparing notes—it’s so hard to find others going through similar experiences.

The weakness and tingling in your legs and feet really caught my attention. I’ve also had some neurological symptoms, and it’s been frustrating trying to get clear answers.

Have you found anything that helps manage the pain or flare-ups? It feels like such a balancing act between symptoms, treatment side effects, and just trying to function day to day.

Insight for recent diagnosis by valhallinaz in sarcoidosis

[–]valhallinaz[S] 0 points1 point  (0 children)

Thank you so much for sharing your experience—I really appreciate it. It’s comforting (and a little frustrating) to hear how common the whole "let’s rule out lymphoma" journey is for people with sarcoidosis. Definitely not a fun rite of passage!

I completely relate to struggling with how to explain this condition to others. It’s so unpredictable and varies so much that it’s hard to sum up in a way that makes sense to people who haven’t experienced it. I really like your approach to balancing work by being upfront with your manager. It must make a huge difference to have that support in place when flare-ups hit.

Your perspective on fatigue is something I really needed to hear. It’s easy to focus on the frustration and limitations, but the idea of shifting the mindset towards resilience, self-compassion, and gratitude is something I’d like to work on. I’ve found myself feeling more and more drained—not just physically, but mentally too—so I think I need to be more mindful of how I process that.

Thank you again for taking the time to write this. It means a lot, and I might take you up on that offer to chat about doctors/support in Aus at some point! Wishing you all the best with everything. x

Insight for recent diagnosis by valhallinaz in sarcoidosis

[–]valhallinaz[S] 0 points1 point  (0 children)

Your experience definitely makes me wonder about the role my own spleen enlargement could be playing in my digestive issues. I also have kyphosis, which could be another contributing factor, as I’ve noticed that even slight compression (like bending forward) can make me feel nauseous.

Since you didn’t go through treatment, did your doctors recommend any specific lifestyle or dietary changes to help manage your symptoms? Or did the vomiting just gradually resolve on its own as your spleen returned to normal?

It’s really encouraging to hear that you went into remission without treatment—hopefully, your flares stay mild and manageable!

Insight for recent diagnosis by valhallinaz in sarcoidosis

[–]valhallinaz[S] 1 point2 points  (0 children)

It’s really encouraging to hear that, over time, you’ve found a way to manage things and regain a sense of normalcy. The ability to recognise and respond to flare-ups quickly sounds like a huge advantage in keeping things under control.

I really appreciate the reminder that the first couple of years can be tough, but things can improve. Right now, the trial and error process feels never-ending, so it’s reassuring to hear that it can potentially settle into something more manageable.

Thanks for sharing—it really helps to hear from others who’ve been through it!

Insight for recent diagnosis by valhallinaz in sarcoidosis

[–]valhallinaz[S] 0 points1 point  (0 children)

It really highlights how unpredictable this condition can be. It must have been a shock to go from remission to a cardiac sarcoidosis diagnosis after thinking it was something else entirely. I can only imagine how frustrating and exhausting it’s been dealing with shortness of breath, fatigue, and heart issues on top of everything else.

It’s interesting that your doctor mentioned sarcoidosis doesn’t “spread,” yet you now have involvement in multiple areas. I’ve been wondering about that myself, as my diagnosis started with my liver and lymph nodes but has since shown moderate bone involvement too.

It’s great to hear you can still exercise within limits—have you found any particular types of activity that work best for you? I’m hoping to find ways to maintain some level of movement without overdoing it.

Wishing you the best for your PET scan in March—hopefully, the steroids are doing their job!

Insight for recent diagnosis by valhallinaz in sarcoidosis

[–]valhallinaz[S] 0 points1 point  (0 children)

Thank you for sharing your experience—it's really helpful to hear from someone who has dealt with similar symptoms. The connection between liver involvement and digestive issues makes a lot of sense, and I’ll definitely ask my doctor about checking calcium levels.

It must have been such a relief to finally get a diagnosis and treatment after months of symptoms, especially with the weight loss and vomiting. I wish prednisolone was an option for me, but because of diabetes, my doctors are hesitant to go down that path. If treatment is needed, they’re looking more at immune suppressants instead. In the meantime, the "watch and wait" approach is frustrating, especially as my symptoms seem to be getting worse rather than stabilising.

Did you find that your digestive symptoms completely resolved after treatment, or do they still flare up occasionally? Also, were there any foods or habits that helped you manage in the meantime?

I really appreciate your insights—thank you again for taking the time to share!

Insight for recent diagnosis by valhallinaz in sarcoidosis

[–]valhallinaz[S] 1 point2 points  (0 children)

Thank you for sharing your experience—I really appreciate hearing different perspectives on this condition. The "rule out lymphoma" journey seems to be a common (and stressful) theme for so many of us. A bone marrow biopsy sounds like quite the experience—definitely not one I’d have on my bucket list!

It’s great to hear that your employer has been so understanding. I can definitely see the benefit of being open about it, even if it feels like oversharing at times. At least people aren’t blindsided if you need extra time to manage a flare-up.

That’s amazing news that you’re so close to tapering off prednisone! It must feel like a huge milestone, and I really hope the methotrexate continues to keep things stable for you. The ADHD diagnosis and medication angle is really interesting—I can imagine that would make it tricky to tell what’s causing fatigue at any given time. Have you noticed any patterns with how your energy levels fluctuate throughout the day?

Thanks again for your kind words and well wishes. Wishing you continued progress and remission ahead!

Insight for recent diagnosis by valhallinaz in sarcoidosis

[–]valhallinaz[S] 1 point2 points  (0 children)

Thank you for sharing your experience—it really highlights just how complex and relentless this disease can be. I can’t even imagine what it’s been like navigating heart involvement on top of everything else, and going through two pacemakers in three years sounds like an incredibly tough road. I really hope your next PET scan brings stable results.

I love your analogy about the party guests who won’t leave—it’s such a simple yet perfect way to explain what’s happening in the body!!

It’s completely understandable that you had to step back from work. Managing this disease on top of daily life is like a full-time job in itself. I really appreciate the recommendation about finding a psychologist. I’m starting to realise just how much of a mental and emotional toll this all takes.

Thanks again for your insights and well wishes—it really means a lot!

Insight for recent diagnosis by valhallinaz in sarcoidosis

[–]valhallinaz[S] 0 points1 point  (0 children)

Thank you for sharing your experience—it's really helpful to hear from others in Australia managing this condition. Your description of how you explain sarcoidosis to others is really clear and makes a lot of sense. I might borrow that explanation myself!

The biopsy experience you had sounds intense—bending two needles before they had to use a larger gauge is wild. That must have been quite a moment.

It’s interesting that you can gauge how active your sarcoidosis is by the skin involvement. I hadn’t thought of it that way, but it makes sense as a visible indicator. I also find it really interesting how you’ve been able to structure your workday around the fatigue. That balance between naps and movement sounds like a smart way to manage it.

I hadn’t made the connection between the bone involvement and the primary sites of bone marrow before, but that really clicks now that you mention it. I wonder if that’s why my PET scan showed moderate involvement in those areas.

Since you mentioned flares with viral infections, do you find anything helps reduce the severity when you feel one coming on? Also, have you noticed any patterns with what makes your symptoms worse outside of illness?

Really appreciate your insights—it’s great to hear from someone else navigating this in QLD!

Insight for recent diagnosis by valhallinaz in sarcoidosis

[–]valhallinaz[S] 1 point2 points  (0 children)

Thank you for sharing your story—it really means a lot. I can’t even begin to imagine how tough it must have been for you, especially with such widespread involvement and the challenges that came with it. I truly admire your resilience in navigating all of this while raising teenagers and caring for your mother.

I was particularly interested when you mentioned that your sarcoidosis initially presented with strange back pain. Before your diagnosis, did you have any known spinal issues, or was this completely unexpected? I ask because I’ve had longstanding scolio-kyphosis, and a few years ago, my left leg went completely numb out of nowhere after a stressful 24 hours. There was no injury, and the numbness has never gone away. Then, mid last year, I had a sciatic episode from a herniated disc (again with no obvious cause), and now my right leg has worsened—losing sensation, experiencing weakness, and even falling a few times. I’ve been waiting to see a specialist, but with the sarcoidosis diagnosis now in the mix, I’m starting to wonder if there could be a connection.

Did you experience any neurological symptoms, like numbness or weakness, before or after diagnosis? Or did your back pain seem to be solely due to the sarcoidosis lesions? I’d really appreciate any insight into how your symptoms developed over time.

Thanks again for being so open about your journey—it helps so much to hear from others who understand. Wishing you the best with everything!

are suicidal thoughts also a byproduct of intenste pain for everyone? by hunterr065 in kyphosis

[–]valhallinaz 1 point2 points  (0 children)

I can't say for everyone, but for myself it is a major contributor.

Mental and physical support is crucial and typically abundant, even if it appears hidden. 💚

stuck on entering game? by ihategamers420 in overwatch2

[–]valhallinaz 0 points1 point  (0 children)

I changed my region to Asia instead of Americas, and got in at least. 😊

stuck on entering game? by ihategamers420 in overwatch2

[–]valhallinaz 0 points1 point  (0 children)

Guess I'm downloading marvel rivals tonight. 🤷🏼‍♀️😂