u/Eviljohna

Hi everyone. I’ve had gastroparesis since childhood. Initially it seemed related to my severe migraines and would be a precursor to a headache but as the years went on i noticed I’d have flares of delayed stomach emptying on its own. Sometimes a couple days. Sometimes a many weeks

I’ve never had treatment for it and just lived with it. I have other issues treated by specialists (Lupus/UCTD/Hashis/Etc) and gastroparesis just wasn’t a priority. My rheumatologist believes it’s related to my autoimmune problems so I didn’t seek an individual specialist for it.

With my history out of the way I’ll get to the point. I’ve been dealing with a flare now for a few weeks. It’s making me miserable. Food and liquids sit in my stomach every day, make me feel bloated, I can’t lay down to sleep at night even when it’s been 6-8 hours after my last small meal. But what’s most concerning is that the meds I need to take daily don’t seem to be digesting. They range from Plaquenil, pain medication, to antibiotics I’m currently on for an infection. I can tell they’re not digesting in a timely manner based on my pain medication becoming ineffective.

Last night I wound up with a migraine and I’m at the end of my rope. None of the meds I took for it were getting into my system and so I suffered so tremendously. Mine are really severe and labeled on the cluster spectrum. Mentally they take a terrible toll and leave me feeling traumatized, hence why I’m posting. FYI I realize there are meds that aren’t in pill form but those are contradicted for me because of differing health issues and risks.

The chicken salad I ate yesterday afternoon is still in my stomach about 20 hours later. I fear the sulfur burps will start soon. I need my meds to digest and I need my stomach to start emptying again!

I see my primary next Wednesday. I would appreciate any of your suggestions for tests/treatments/referrals I should ask of him.

I’d also love to know what’s the usual treatment for delayed stomach emptying? Are there any tricks for self care that can help move things along? Or end a flare? I’ve been eating like a bird and feel like I’m going to burst and need my meds to dissolve and get absorbed!

Thank you!

Edit: Just to be clear since I’m realizing causes can differ and perhaps need different treatment, my gastroparesis comes in flares and is a result of one for my health issues that messes with the autonomic nervous system. My stomach and digestion is fine outside of these flares

Hi everyone. I’m at my wits end & hoping maybe that’s in the community might recognize some of these symptoms & share experiences

A bit of background: My insurance currently sucks and my network of doctors is small & it’s seems the system is designed to create dead ends to limit treatments. I previously had a great rheumatologist but he retired. My diagnosis at the time was lupus without organ involvement and SICCA suspected to be seronegative Sjogrens. I have too many symptoms from both these to list but the SICCA has caused eye problems and led to the loss of all my teeth despite my desperate attempts to save them. My question today though is about kidney issues…

For several years now my blood work shows low potassium and other imbalances (sometimes high chloride, sometimes high creatinine, sometimes high or low agap) I’m also suffering terrible “3rd spacing” edema meaning my fluid balance is off and my circulating blood is dehydrated and instead the fluid floods my tissues.

I’ve also had kidney stones that caused a blockage. During the attack my urine PH was 7 which I’ reading is highly unusual and suggests an inability to acidify urine properly.

My current concern is my blood pressure which seems to get lower and lower. The last few readings have been 85/60 and yesterday 90/54. I suffer days of severe fatigue….like I’m under anesthesia type of fatigue!! The days go by in a blur of sleeping and waking for only minutes at a time & falling asleep again. It’s like I’m under a spell. I can sleep 16+ total hours these days with a spattering of waking moments

None of my doctors will do anything to help me get to the bottom of this. I asked about this in the Lupus sub and a doctor there warned me this sounds exactly like renal tubular acidosis caused by Sjogrens.

I asked my current (new) rheumatologist about this and they snapped back saying Sjogrens doesn’t cause kidney issues 🥴 I asked my primary for a referral to a kidney specialist and they refused because I don’t have protein in my urine….which doesn’t even happen with RTA from my understanding!

Do any of these symptoms sound familiar to anyone? I’m fighting for better care but all of the doctors available to me are dismissing this and I’m starting to question my sanity. Hard to imagine I know better than the doctors but none of this seems normal and everything about it is making my life difficult.

Thank you in advance ❤️

So I’ve now spoken to a few doctors & sent them photos of the sore and scab I’ve developed the last month. My dermatologist moved my appt up from mid Oct to MONDAY after seeing my photos. All feedback I’ve gotten is that it’s presenting exactly like an early discoid lesion. And sadly, after the puffy inflammation settled down thanks to some steroid cream, the sunken skin associated with a lesion has developed. It’s not bad or too noticeable so far and yet I’m still very sad as this is in the middle of my nose 😢

My disease is systemic (doctors debate my diagnosis between SLE or UCTD) so I’m a bit confused about why I’d develop a discoid lupus type of skin lesion. If I understand it right though, some with SLE do get discoid patches?

This isn’t a malar rash btw. It’s the type of lesion that creates hallmark scales with keratin spikes that cause hair loss in the scalp or scars on the face, often on the nose

I want to be prepared for my appt Monday. So far I have not been impressed with any of the doctors I’ve seen in the Kaiser system I’m now in. I want this taken as seriously as it deserves to be and not dismissed.

If anyone has experiences they can share it’d be greatly appreciated!

Edited for clarity

My mystery skin issues continue & this time I’m more worried than usual since characteristics of the sore seem to align with a discoid lupus lesion

I am writing my dermatologist but they’ve been unhelpful up to this point & I’m NOT going to let them do a punch biopsy on my nose. Esp considering the huge purple scar I still have on my leg 6 months after the last biopsy

So my question…

Has anyone experienced a sore that creates a scale with “carpet tacks” or “tin tacks?”

I have a spot on my nose that appeared out of nowhere. The skin on my face is very healthy and my pores are small. I tend to be dry and don’t produce pimples, acne, oil or sebum. No whiteheads or blackheads. The skin on my face is the one thing that behaves pretty normally. Til now

Out of the blue a red circular area appeared on my nose. No pimple. No discharge. No pain. Just kind of puffy and pink/red like it was slightly inflamed. Then it developed a thin transparent scale.

I left it alone and the scale sat for weeks. When it was lifting around the edges I decided to pull it off and OMG!! The translucent thin scale was full of hard pointed plugs on the other end. It looked like a bed of nails! My pores were left looking huge! The skin was red and slightly raw looking but not bleeding or weeping and I thought it was healing. A day or so later, the scale grew back

Once again I didn’t touch it and weeks went by. Again it started lifting at the sides and I removed it. Again OMG!! It was like a bed of nails on the back of the scale. White, hardened spikes. Lots of them. Like every single pore created a spike. Just to be clear, I’m not talking about peach fuzz or tiny and thin filaments on the back of the scale. These were all very large spikes, both wide and long and highly out of the ordinary.

This was such an unusual characteristic I looked it up. Everything I see suggests this “carpet tack” is indicative of discoid lupus and that very few skin issues create anything similar. The only other potential skin issue has distinct differences that definitely do not apply in this case.

I started using some of the steroid cream I was given for my leg sores on my nose and in just 3 days it’s started to calm down. I know this isn’t a long term solution but I started to freak that this might scar and rushed to do something. It seems to be reacting positively to the steroid cream

My new rheumatologist and dermatologist seem to be dismissive of everything or just tell me to set an appointment…..and appointments aren’t available for months. So I’m coming here to see if anyone has experienced something similar

Thank you!

I just hopped on vine to submit my newest reviews and get a Redbox message saying I don’t meet community standards and am unable to review.

Please note: this is not an individual item issue. It is an account wide issue

I still have access to Vine. I’ve been reviewing up until just yesterday. I have an 87% review score and excellent. There’s no note on my Vine that says I dipped below a threshold. And again, I still have access to the Vine dashboard. From everything I am seeing this is an Amazon side issue rather than a Vine issue. And the most likely culprit is the spending minimum

I did just order a bunch of stuff last week and today. That would have tipped the minimum but I’m not sure when the account gets updated. Perhaps when stuff ships or gets delivered? Or if they automatically reinstate your review privileges once the money is spent.

I’ll be heartbroken if I can no longer be part of Vine….which will happen if I can’t review my orders

Has anyone experienced this or does anyone have advice?
I did search the sub here but most of what I found was about the Redbox for warning for individual items/reviews. Not on an account level

I was starting to write Vine CS but thought it best to ask first so I don’t cause more problems for myself

Edit to add: There’s also no email from Amazon concerning this. I went to my account dashboard and all messages throughout July were either “thanks for ordering” or “thanks for reviewing”

Thank you 😭

Hi everyone. I hope this post isn’t annoying but I wanted to introduce myself and hopefully learn a bit about the trials and tribulations from those with hypermobility

Short history: I’ve been hypermobile since I was a wee kid but didn’t know it was “a thing” with health related consequences. I just thought I was oddly flexible

After decades of illness I was officially diagnosed with UCTD (that my rheumatologist refers to as Lupus with overlap). It causes many symptoms including muscle pain, swelling, fevers, low blood counts, vascular issues etc. For a long time any pain symptom I had was attributed to Lupus. I’m just finding out that’s not the case. This does complicate things however because 1) it makes the cause and effect harder to identify and 2) the autoimmune inflammation just makes every other issue worse and more severe

I just had an MRI that shows severe stenosis in both the canal and the little exit holes for nerves in my lower back and neck. Bone spurs and thicken ligament, 1 or 2 slightly bulging discs but the disc issues are apparently not too bad/advanced. I have what now seems to be permanent nerve damage down my arm into my hand with loss of feeling and muscle strength. My lower back causes terrible stiffness and bursitis and sciatica and I think is behind the “jelly knees” sensations I have at times.

My insurance is terrible and I have still not had a proper followup after getting my MRI results & won’t for a couple months. The results weren’t explained to me nor have any referrals been made or treatment plan worked out or meds prescribed. I had a quick chat with the doctor, half of that spent on her blaming my smoking for my spine issues and saying the best thing I can do is to give up smoking 🤔 Sure, wise advice in general but I swear it was an attempt to make my back issues sound avoidable, put the blame on me and delay treatment. Maybe I’m just a cynic but this seems a pattern in the system I’m in

I was just given a thorough check by my rheumatologist and “extreme mobility” was noted but no one has suggested what I need to do next and no official diagonals given. Apparently my ankles, hips and shoulders are severely hypermobile and move in directions they shouldn’t without effort or pain. I was told my shoulders partially dislocate when tested 🫪 The range of motion in my hips is just as bad but I’m not sure exactly what that means. I’m pretty old and yet can contort myself into a pretzel with ease throwing both legs behind my neck. I was told to try to limit my range of motion to avoid injury. That was all the advice I was given so far. I’m reading that the hypermobility might be a contributing factor to the awful widespread pain and stiffness I’ve been suffering from forever and could also be why my back has degraded to the extent it has….?

This has all been very frustrating because my insurance boxes you in and you can’t move forward without referrals and appointments are always months out. I also have to push and push to advance my care. In this case however I’m not sure what I should be asking for. I don’t know what type of specialist I should be seeing. Not sure if I should demand more testing…if there is any significant testing that should be done. If some form of specific diagnosis would even be helpful?

Sorry for the rant and thanks to everyone who stuck with it and made it through. I’d love to hear any suggestions about how I should proceed and hear stories from others to get a better understanding for what this means for one’s health!

I’ve had all sorts of symptoms forever and they’re often changing but this is something VERY new & I don’t know what might be causing it. I’m wondering if anyone has ever felt like their knees or hips feel like wiggly jelly?

I can’t really describe it any other way. It’s been like this for about a week now. It first started in the hips a couple weeks ago and I dismissed it as maybe aggravating something somehow. Then it started in my knees

The odd thing is that they simultaneously feel a bit stiff and tight to bend but also feel wobbly when I walk, like there’s some kind of internal quaking or going on. It makes me feel unstable on my feet. It’s not so severe that I feel I’ll fall BUT it is unnerving and constant and does make me feel like I lost some amount of control or confidence in walking

It does not feel nerve related. It almost feels like something is loose or my knees are resting on a waterbed. They do not look swollen however

Edit/Update: Just stopping back to say today it’s even worse and it’s now officially freaking me out. It feels like my hips and knees are quaking internally & that I’ve lost some control over my body.

I usually have a lot of pain associate with my condition & that I’m used to. This feels a lot scarier to me for some reason. Having had my rheumy retire & just starting with another I also don’t have a lot of support and can’t say my doctor knows me or my history or would be receptive if I contacted them about this new development.

Thanks all for listening 💗

Just wondering how many of those with a diagnosis of Lupus/UCTD/MCTD etc also have vitiligo.

I’ve had a patch since I was young that’s been pretty stable for the most part but recently started developing more. The dermatologist confirmed it with a Wood’s lamp during my last visit and prescribed a cream to help get the pigment going again. So far I’ve only seen them on my face and that’s the only place the dermatologist checked but looking at my medical records from childhood it appears my mom took me in for patches on my trunk too. Since I’m light skinned they’re hard to see unless I’m tanned which lately is: never.

Just curious about any overlap between vitiligo and other AI diseases and if anyone with vitiligo started having new patches crop up after decades of inactivity

A few weeks ago I shared some pictures of the reoccurring small lesions I’ve been getting on my legs for the last couple years. I finally got the results of my skin biopsy and thought I’d share them. I’d also love to know if anyone got similar results from a punch biopsy and what they were eventually diagnosed with.

My results were inclusive so I’m scheduled to go in next week to get 2 more punches done. Ouch. The report stated some observations however: Lichenoid dermatitis - eroded. Inflammatory features with moderately brisk superficial perivascular and lichenoid lymphocytic infiltrates present. The lymphoid infiltrate has a somewhat discrete appearance and focally abuts the dermal epidermal junction with some degree of lymphocyte exocytosis. Epidermal erosion with superficial epidermal necrosis is noted as well.

What they didn’t find were the types of things associated with allergic reactions, either contact or medication related. They also looked for and found no fungus.

The dermatologist couldn’t (and didn’t) tell me anything about these results except that we need 2 more samples to test 🥴

I plugged my results into some AI tools and they indicated that they really should run a wider range of tests to better identify this esp since I have an autoimmune disease. I’ve contacted my rheumatologist to ask if there’s tests I should request. Hopefully I hear back from him in time.

I really was hoping to learn something definitive and am a bit sad about that. It does however seem like this is something a bit complex and hints at my immune system destroying patches of skin. But WHY?!? 😫 Hopefully I get more answers this next time and that maybe it’ll even help pinpoint my diagnosis better. And better yet, figure out how to stop this from happening!

Anyone here ever get similar results from a biopsy? If so I’d love to hear about it

PS: these lesions start as a papule, flatten into an inflamed scaly lesion and don’t heal for months. They don’t itch at all but OMG if I disturb one and mess with the scale they hurt like hell and hurt deeply. Weirdest of all, they even erupt on heavy scarred tissue where I’ve had deep injuries in the past. Like I don’t even have hair growing in this scarred skin….its like white thick and void of life yet these lesions seem to love them. I find that really odd

Thanks for listening to my ramblings!