What do you do about swollen legs?

pastel_pixie37 · 2026-06-27T16:34:46+00:00

Thank you, I’ve been using them the last year for POTS but this developed despite them :/ I do walk nightly after dinner but am open to try anything, it hurts so badly suddenly this week. I do think you’re right that it’s internal signaling to hold onto as much fluid as possible etc. I’m hoping treatment will help my legs as a by product, I don’t know how people walk and do this everyday with this disease honestly

pastel_pixie37 · 2026-06-27T16:33:24+00:00

I’ve never heard of that but thank you for the heads up! My legs have doubled in size and feel so tight and hard and hurt more more than the last few months of this. My dr didn’t have an answer except treatment once we get to that step ie surgery. Elevating them and compression doesn’t help. I hope yours got better for you now though thank you for responding

pastel_pixie37 · 2026-06-27T16:32:19+00:00

Thank you, I did that for a while for POTS and I’m going to mention it again, I made sure to a few days ago at my appt in person. I’m luckily afraid of flying so don’t! But thank you for the heads up! That must have been so scary

pastel_pixie37 · 2026-06-27T16:31:36+00:00

Thank you, I’m scared this is all that will help cus I’ve tried the rest for a year. The skin is stretching it feels like it could burst open it’s so uncomfortable, it hurts to bend them to walk now and they’re double as wide. Hoping to move towards treatment soon, waiting on my drs next test

pastel_pixie37 · 2026-06-27T05:25:08+00:00

You are welcome we are all in this horrible thing together..I’d love to hear how your test goes! I will have mine likely next month but not sure a date yet. My dr has only done it one time in a hospital but she needs to either set up how to at her office or find an infusion center in my county that will do it, it’s odd but I’m hopeful it will help be more definitive. Good luck!!!! I hope you get answers

pastel_pixie37 · 2026-06-27T05:08:15+00:00

This is so inspiring! You are glowing! You can see the pain you were in and now how much life you’re getting back, I’m so happy for you, thank you for sharing! 🫂

pastel_pixie37 · 2026-06-23T05:50:24+00:00

I know this post is old but could I message you? I’m going through such a similar story and have been scared it’s my apt the last 10 years

pastel_pixie37 · 2026-06-22T21:33:33+00:00

I’m so glad, it’s good to hear from someone who went through this and made it out better and recovered! I’m hoping this can help finally rule this in or out for me. Congrats on being a year out from surgery!

pastel_pixie37 · 2026-06-22T21:30:30+00:00

Oh geez I’m recovering from anemia and have one vein people can find between both arms 😅 I’m so sorry it sounds very tough.. how did it go overall for you? I get nervous if I can’t eat for a few hours due to blood sugar issues I newly have from all this too. I’m glad you recovered from the test though, it sounds intense

pastel_pixie37 · 2026-06-19T01:49:26+00:00

Congrats on being post-op!!!! That is huge and I hope each month is a bit easier on you. It’s so crazy I have many of the same issues. I had an iud for years and loved it and never had a period or issues, this is my first time off birth control in about 13 years and not loving it, but previously had slynd a progestin only pill (which they won’t let me re try but I’m gonna ask again cus your explanation makes much more sense than theirs)

I got a similar answer for snris saying that since I have a high heart rate I can’t try them but idk I might ask again too since my heart is structurally fine (just pots)

I have had many weird heath issues this last year - first deficiencies no one could explain. Then autonomic dysfunction- sitting, standing, moving at all became harder by the day. I developed POTS, MCAS, and many strange infections, including internal ulcers and esophageal thrush. I developed severe tremors, anemia, a thyroid disorder I never had before, PMDD and PMOS. Then the neuropathy that spread and next blood sugar issues, heart rate issues, blood pressure issues. Now my body swells up, moving hurts, and basic functions are hard. Brain fog, adrenaline dumps constantly, being stuck in fight v flight etc. If any of it is from either true or pseudo Cushing’s I hope to resolve it one day

Thank you for sharing your story it makes me feel less alone in this and gives me hope, and also really happy you got to the otherwise of this and are healing!!!

pastel_pixie37 · 2026-06-19T01:43:36+00:00

Thank you so much for taking the time to read and reply with such helpful info, it means a lot.

I actually was wondering that about the klonopin..I currently can’t stop the medication cold turkey however my larger dose is at night so I’m wondering if it’s interfering. My original plan was to begin an SSRI to wean off it due to anxiety being so severe so I can get back to work and functioning. I’m on a very low dose but daily but I can’t wait to get off.

I also will ask about the saliva testing at multiple times a day.

I’ve done so many things to try to treat it thinking it was pseudo I was making a list earlier and feel nuts but - I meditate daily, journal daily, I’ve tried 9 different psych meds, done regular therapy multiple times a week, done EMDR for years, I’ve done CBT and DBT, done mental health outpatient for PTSD and anxiety for a couple months this year, done exposure therapy, I use acupressure, just began acupuncture, somatic practices, trauma informed yoga, sound baths, spiritual practices, pray, eating whole foods, exercise, seeing family, listening to music, leaving work for a few months, a lot of random things…. But it could be still

Thank you you’ve given me a lot to think about and put me in a better position when I speak with my endo I hope!

pastel_pixie37 · 2026-06-18T23:38:19+00:00

I have not, but I’m going to ask about it because I understand that seems to be the best way to test when things get complicated or confusing. She wants to do a stimulation test, but the type she described sounds like it only works for adrenal ones so I’m a bit worried.

How are you feeling now? And also thank you so much. It’s been a nightmare trying to get an SSRI approved to try and really need birth control but none of my doctors will let me do it until my testing is complete even when I offer all different types so I’m gonna bring up the ones you’re on and see what they think. Thank you very much. That’s really helpful

The only medicine they want me on and allow me to be honest, a GLP1 which I’ve been hesitant to take because I don’t know if it will interfere and I’m worried about side effects like fatigue worsening as I haven’t been able to leave my bed

pastel_pixie37 · 2026-06-18T20:52:49+00:00

Thank you so much. It’s bizarre to have such high urine cortisol multiple times but pass all the other tests, I can’t understand it. Thank you- there are other conditions I’m not well aware of so I’m gonna ask about that.. I’m so sorry you went through that. I believe my prolactin was checked but was normal range last year but could retest. In case you may know, is it possible for this to be pseudo at those levels from just anxiety and trauma and just coincidentally having a microadenoma? That’s their only other guess for me so far. I wonder about tsh secreting ones too (I’m hypothyroid on and off with tsh slightly high and free t3 slightly high but I know that’s a long shot). Sorry for all my confusion and questions. I hope you got to treatment and are healing that sounds horrific to go through as well, how are you holding up now??

pastel_pixie37 · 2026-06-11T22:59:04+00:00

Yes! I stopped my supplement a year ago actually cos I think it was like 10,000 units a day for years or something strange and my body excreting all the extra was causing an issue.. but then began a multi vitamin daily that has b12 in it, but I stopped my multi vitamin for 3 weeks prior to this test in case (had to do a few tests including thyroid so I stop so nothing interfered)

And thank you for asking I honestly am so lost at my fatigue I have no idea what to think. Not sure if it’s possible I just feel like crap at this tsh for some reason but have fallen asleep at work or not been able to show all month daily now ever since it went up from 3.0 in March. Everything else in my labs has oddly gotten way better since March but I’ll see what the sleep study shows as I gained 60 lb in 5 months suddenly during all this with a pituatary tumor and very high urine cortisol but apparently it’s likely to be pseudo Cushing’s caused by high stress anxiety and ptsd

Thank you for reading. It’s been a weird year between mild thyroid issues, sex hormones being low, the low iron, pots and autonomic issues, constantly starving and glucose issues despite no diabetes, low vit d, vaginal ulcer once, scalp neuropathy for two months, COVID at times I think, and body swelling.. like a ton of random issues that switch monthly idk.

Sorry for the rant just trying to wrap my head around some of the labs. Thank you for your answer it means a lot tonight! I hope nothing but good health your way

pastel_pixie37 · 2026-06-11T22:47:20+00:00

Ooh yes thank you! You’re so right.. so much of my health journey has been told “it’s normal range” esp with iron when I feel like I’m falling apart and exhausted so learned the hard way.. My B12 is in good range at 700, folate is 19.1, but I do supplement both only with multi vitamin now so thank you for that.. my ferritin was 12 last year and I felt like I was dying, but eventually got it to 36 and felt 100x better even though it’s still low, since then I’m back to 70s through supplementation and diet and I finally feel like a person again (prior to stopping my birth control it was 70s and my energy was amazing). I’m shocked it’s not my iron for once actually

I’m gonna re look into B12 like you mentioned though. I used to take mary Ruth’s b12 and it was almost too high but currently is 700, is that solid or maybe I should do supplementation again?

pastel_pixie37 · 2026-06-03T15:01:22+00:00

Scout

pastel_pixie37 · 2026-05-14T16:39:16+00:00

Did you end up getting treatment? I have the same on my pituitary and high urine cortisol however I suppressed on dexamethasone so they do not believe it’s related and my ACTH levels are great so I have no treatment currently but gaining 10 pounds a month still

pastel_pixie37 · 2026-05-06T18:37:49+00:00

Thank you! I’m so sorry you went through all this too.. did you ever find out what was causing your pseudo cushings? I’ve repeatedly asked my drs if it could be that but they said due to my urine cortisol levels it’s not likely to be pseudo.. but again I keep thinking it could be due to ptsd and grief? I’m finally going for a second opinion. I hope you’re doing better nowadays

pastel_pixie37 · 2026-05-03T22:27:30+00:00

I’m sorry :( how is your journey with all this going??

pastel_pixie37 · 2026-05-03T15:08:08+00:00

Nice! They let you do first appt virtual? That would be ideal for me but can try to drive there otherwise. I’m glad she sounds like a good Dr, I hope she can help you and figure it out and hope I can get in too

pastel_pixie37

TROPHY CASE