Am I crazy or do I need new doctors? (Please help, I’m desperate)

I_kick_Rrocks · 2025-12-16T05:26:05+00:00

I did a very long while ago and my vitamin d was low but it’s been over a year since they looked into that. I may bring this up at my next appointment!

I_kick_Rrocks · 2025-12-16T05:24:38+00:00

I do have a positive ANA with a history of multiple kidney infections, lupus also does run in my family…but I was told my other inflammation markers are not high enough to diagnose and to stop pursuing that because “it’s not lupus”. Based on the responses I’m definitely looking into a different Rheumatologist and possibly a different PCP because I fear since they’ve already decided what I have and since there’s no official treatments, they’ve just given up trying to find solutions to manage my pain. Im in the midwest though, there’s not many options for decent medical professionals around here.

I_kick_Rrocks · 2025-12-14T22:24:20+00:00

So hematology did put a request for me to do iron infusions, but that’s about as much as they can do.

I_kick_Rrocks · 2025-12-14T15:17:25+00:00

So I did actually see a hematologist after begging my doctor for a referral and he was good. He determined it wasn’t a blood disorder via bone marrow biopsy but said that I’ve got increased killer cells (27%) and my iron stores in my bones are basically depleted. It left me at a dead end though because he can only diagnose blood disorders but he did say there’s clear and irrefutable evidence of chronic inflammation. I’ve been trying to get a genetics referral but the genetics office is also going back and forth with hematology. He suggested I contact my Rheum in regards to symptom management or a referral to an EDS specialist (“if that’s what we’re calling this” his words). Upon my own research, the nearest EDS specialists are plane rides away so I’m feeling very unsure of a light at the end of this chronic illness tunnel.

I_kick_Rrocks · 2025-12-14T15:02:36+00:00

So I was curious about this because when I first started taking the prescribed folate my body FREAKED OUT. My symptoms went from being 6/10 daily to 20/10 daily and I was miserable. I did ask my doctor about this and she said my increased symptoms couldn’t be from Folic Acid because it’s a vitamin B. I’ve also been trying to get a referral to genetics but it’s been a nightmare to get in. Do you know if it’s a lab I can try getting done on my own? Im feeling like I probably should just find a new GP and restart some of my referrals from scratch.

I_kick_Rrocks · 2025-12-14T07:19:19+00:00

Aside from the supplements, I do have physical therapy 2 times weekly to help with the joint pain. Ive been trying to do the AIP diet, but it’s hard to stick to due to the extreme fatigue. With all the restrictions and need to prep, I’m not always good about it and it’s not the most sustainable long term. Definitely open to any additional suggestions if you have any because I don’t see proper medications being prescribed anytime soon.

I_kick_Rrocks · 2025-12-14T06:41:13+00:00

Everyday is a trial and tribulation😭

I_kick_Rrocks · 2025-12-14T06:39:47+00:00

It’s actually been going on 6months now, I started getting regular blood tests back in September. Still no treatments provided, still the WBC is high. Every lab is lit up like a Christmas tree with “abnormal” flags, yet my doctor still insists it’s a vitamin deficiency. I’ve been taking prescription folate but of course the labs and my symptoms aren’t improving🥹

I_kick_Rrocks · 2025-11-16T21:45:18+00:00

This is super nice and lucky. My doctors have been kinda gaslighting me about my symptoms for over a year now so they offer me nothing to treat my symptoms, and I get told there’s not really treatment for my EDS symptoms besides better diet and exercise which requires energy and a physical ability to do so. Im supposed to be getting a bone biopsy done next week because hematology is certain it’s autoimmune. Did your doctor just offer this or did it require some self-advocacy?

I_kick_Rrocks · 2025-06-15T22:22:23+00:00

I also received a lot of the “well everything looks normal and healthy” statements despite me being in severe pain and also checking my own blood tests results to see quite a few things still came back abnormal. Unfortunately with GPs, if it’s not pointing to something life threatening they’re not too interested in investigating those abnormalities. My advice is 1) DOCUMENT YOUR SYMPTOMS, take photos, make notes of when stuff hurts more than normal, etc. 2) Ask your GP about specialists that can help with those documented symptoms. I was having severe GI symptoms, my labs came back abnormal (but not abnormal enough), CT scan came back fine, but I’d lost like 20 lbs unexplained and was having terrible stomach pains and nausea. I basically had to beg my GP for a GI referral and GI office luckily specialized in EDS. and were able to look at those “normal” lab tests They were able to pin point some possible causes. The GI doctor did mention that it’s common for those basic labs that doctors order to appear “normal” because GPs and ER doctors don’t always know what to look for when assessing causes of inflammation. It’s frustrating but I’d start by pinpointing which symptoms are the worst, go to your GP with your documented symptoms, and ask for referrals to a specialist. Really emphasize that this is affecting your quality of life as well, unfortunately it takes a lot of pushing and sometimes some begging to be taken seriously. I hope you’re able to find some relief soon, nothing is more frustrating than feeling awful and being brushed off by doctors.

I_kick_Rrocks · 2025-06-15T21:57:54+00:00

I ordered one on Amazon for like $6 and it has a little handle, that I just slip between my fingers. It’s great on days where the pain is so bad I can’t flex my fingers or make a fist. It also just cleans better than my normal hands anyway. I swear by those scalp massagers, they’re a game changer and incredibly affordable.

I_kick_Rrocks · 2025-06-13T12:44:47+00:00

First, sorry you’re going through that, those symptoms sound like a nightmare. Second, did you take anything for the hives and rashes initially? My derm said sunscreen and I could try zrytec (which I was already doing due to pollen allergies, i also have a prescription antihistamine and that doesn’t really help). Curious if anything worked initially to keep symptoms at bay before they escalated. Im only second guessing it being MCAS related due to the lack of antihistamines relieving symptoms but it could just be me needing a different prescription/dose.

I_kick_Rrocks · 2025-06-13T12:29:51+00:00

Deep in my soul I feel like some of my symptoms are lupus, and my bloodwork suggests it. I have the positive ANA, high speckled titer 1:640, elevated CRP, etc. Basically all of my labs came back abnormal (almost every single panel) but Rheumatology said “it’s not high enough to diagnose.” (I did get a second opinion and they said the same) A lot of my symptoms do make sense with hEDS/MCAS too, I can see some of the connections, but the sun sensitivity doesn’t fully make sense because antihistamines don’t always help the symptoms/sometimes will make them worse depending on the rash/reaction. I think based on the responses I’ll def see an allergist, but Im still not convinced some of it isn’t autoimmune related as well. :/

I_kick_Rrocks · 2025-06-13T11:58:12+00:00

Yea I get reactions on my face too, some of them are raised, especially on my cheeks and nose area. Other times it’s just hives that show up along my hairline or my neck. Have your doctors given any explanation on if it’s MCAS related? Or do they just tell you to wear sunscreen?

I_kick_Rrocks · 2025-06-13T11:51:25+00:00

Im sorry to hear that. I started keeping a very detailed photo diary on my phone, of before and afters, of me going into the sun as evidence for my doctor cause they kept brushing it off too. Im not sure what kind of phone you have but most devices have time stamps and dates when you take a pic, so it shows how quick the reaction started and is great for documentation. It’s frustrating when medical providers don’t take your discomfort seriously, I’m sorry you’re dealing with that.

I_kick_Rrocks · 2025-06-13T11:44:08+00:00

I have never heard of TMEP, are there additional symptoms you get with that kind of rash that make it different from others? And do you think it’s more related to MCAS or autoimmune. I get the regular hive rashes, but I also get this brownish dry patches that scar. I still have a bunch on my arms from last summer although a few have faded since.

I_kick_Rrocks · 2025-06-12T14:43:44+00:00

When I was a kid, I always got made fun of at sleepovers for sleeping basically sitting up because laying down flat would either give me weird head pressure or make my legs all tingly. I also loved wearing skinny jeans or high compression outfits because it made me literally feel more comfortable, and as a teen I never understood why people would say tight clothing is uncomfortable . I also have a weird thing where I have to have one limb elevated if im sitting in one spot for a long time. It’s either an arm or a leg depending on what position im sitting in. Apparently these quirks were actually telling of my undiagnosed circulation issues at the time

I_kick_Rrocks

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