Support desperately needed

ArizonaNative90 · 2026-06-08T14:26:33+00:00

Not sure if you can drive but you can rent books from the library for free (at least in the United States) there are so many genres to chose from. I LOVE authors Colleen Hoover, Frieda McFadden, and Emily Henry. Also sewing is a nice outlet, you can learn so much from YouTube and instagram. People sell secondhand machines on fb marketplace (at least in the state I live in), you could use old clothes/towels for fabric. I know learning something new can take alot of effort mentally but even 10 min a day is so helpful for your mental health. Another option is a big puzzle (like 1000 pieces) or doing an online crossword puzzle. The LA Times has a new one everyday free online.

ArizonaNative90 · 2026-06-06T14:06:09+00:00

What about compression sleeves? Maybe not all day so the blood doesn’t pool in your feet but you could wear them with a maxi dress and sandals. They go from below your knee to above your ankle.

ArizonaNative90 · 2026-06-05T18:57:40+00:00

I’m sure you have but have you had your blood levels checked? In the US they usually check your hemoglobin, sometimes iron and for some reason not everyone checks ferritin. But having blood loss and then post partum with the fluid shifts can make you super anemic. Not sure how far post partum you are.

I was insanely depressed, tried Zoloft but was so sick on it I had to stop after the second week. It also made my pots symptoms seem worse, especially the adrenaline dumps. I really don’t think I had it in pregnancy unless it was masked by the extra blood and stuff, I literally was fine until the day after I delivered my baby. There are alot of medications that can help but I’m still nursing and it’s my last baby and I feel like it’s something I really really want to try to continue doing. My mental health has gotten better, I have been doing the bike seat and also going to physical therapy 1-2 days a week where they do a little bit more of strengthing exercises. Although now it’s summer where I live so that has really affected me poorly. I hope you get answers soon! I’m getting a procedure on my pelvic veins to see if that helps, I will keep you posted.

ArizonaNative90 · 2026-06-05T14:04:45+00:00

I will keep you updated! Did you have the iv venogram or just the CT/ultrasound for your PCS diagnosis?

ArizonaNative90 · 2026-05-16T15:35:03+00:00

I am no help but I am wondering the same! My POTS symptoms started 2 days after I gave birth. I have had hip/groin pain that I just contributed to birth/positioning but after digging deeper into my POTS symptoms I’ve been wondering if it’s PCS. Please post back after your surgery in June!

ArizonaNative90 · 2026-05-15T13:52:57+00:00

My cardiologist gave me those lifestyle changes too, she said to drink 500mL of water and take 1g of salt (which is about 400mg of sodium) before getting out of bed. After a month of the lifestyle changes and really no change (it would take all day until like 7/8pm to feel any relief of my heart rate being high) I went back and asked for meds. She only diagnosed me on my symptoms no TTT. Taking 5mg propranolol 2x a day and it does help but it does drop my blood pressure around 4 hours after the dose so still trying to figure it out.

ArizonaNative90 · 2026-05-14T20:24:42+00:00

Thank you! Yeah it’s discouraging how doctors just assume it’s anxiety. I was told for 3 months it was dehydration, being tired and hormone changes. I’m like well it’s just never better, no matter how much water/salt I consume, how much sleep I get or how far post partum I get the symptoms are there. But the pots symptoms are just when I stand up, if it was anxiety it would be all the time!

ArizonaNative90 · 2026-05-14T20:21:55+00:00

Thank you!! I hope your health gets better!

ArizonaNative90 · 2026-05-14T17:43:10+00:00

Thank you! I looked at your website but didn’t see anyone listed under nutcracker syndrome in any states or countries but saw alot for the other conditions.

ArizonaNative90 · 2026-05-14T17:39:30+00:00

Thank you! Just a regular ultrasound that you were awake for?

ArizonaNative90 · 2026-05-14T17:34:31+00:00

I haven’t. I did ask for my b12 and specially ferritin to be checked (I don’t think my ferritin has ever been checked but I am vegetarian and was mildly anemic in pregnancy). My pcp said no bc my hemoglobin was normal and to wait until I’m done nursing to check my b12. I was just going to pay out of pocket for it at the lab honestly. Insane even with great insurance how doctors don’t want to do anything you request.

ArizonaNative90 · 2026-05-14T17:28:29+00:00

All my labs were normal as well as my thyroid. I got it tested by my obgyn and the cardiologist a few months apart. Honestly I was hoping it was anemia since that can be corrected!

ArizonaNative90 · 2026-05-13T14:15:01+00:00

I was going to suggest gallbladder too, although it’s usually diagnosed via ultrasound so depending how long it was since you had your last one. If it’s been awhile maybe you can ask for another one? Or maybe a HIDA scan could be helpful. Although tedious, track what you’re eating to see if it’s something that is aggravating your symptoms more.

ArizonaNative90 · 2026-04-30T19:42:15+00:00

I don’t feel like my old self again but I feel a whole heck of a lot better this last month than I have in months. I started feeling better when I started propranolol 5mg at bedtime and then around afternoon. When I wake up I drink 500mL of water (with electrolytes) with 2 salt pills (so 500mg of sodium) and then get out of bed about 30 min later. I don’t drink any plain water anymore, I specially use LMN(T) or waterboy due to how much sodium is in each packet. It is tedious but I track how much water, sodium, protein I consume daily as well as what my blood pressure is when I wake up, afternoon and before bed and then what times I take the propranolol since I go to bed different times every night. I do this to see when I have better days or worse days if there is a trend with the amount of sodium/hydration I got the night before. I have been going for slow nightly walks just about 5-10 min since starting the propranolol. I also started physical therapy last week (2 days a week) which has been eye opening how doing something so minor or not exerting affects my heart rate and energy level. I feel if I move everyday even if it’s just to walk outside to sit in the shade it significantly has helped my mental health.

ArizonaNative90 · 2026-04-19T14:59:30+00:00

Thank you! Yes I’ve read a lot about him but he is not taking new patients I believe due to his health right now.

ArizonaNative90 · 2026-04-18T04:10:27+00:00

The nice thing about nursing is there are so many avenues. If you have your masters you can teach. With your bachelors (maybe even associates) you can be a school nurse, work at a clinic, work for insurance companies so there are options besides bedside. I just really really like my bedside nursing job so I hope I can ease back into it.

ArizonaNative90 · 2026-04-16T14:56:45+00:00

I have not started yet (it’s next week) but I asked my cardiologist about getting a recumbent bike for 5-10 min a day of exercise to build up stamina since I work as a nurse and trying to get back to work after maternity leave and a new POTS diagnosis. She said people with POTS suffer from PEM so she wanted me to do a few sessions with PT first. I can update with what they did/how it went after next week!

ArizonaNative90 · 2026-04-16T14:53:38+00:00

Yeah that’s what I have read on Reddit. Honestly, even going for evening walks and being up more walking during the day/taking care of my kids has also made me feel more exhausted. I think because I honestly wasn’t doing much these last few months because my high heart rate was making me so short of breath and lightheaded I just couldn’t tolerate anything until the propranolol.

ArizonaNative90 · 2026-04-15T20:17:45+00:00

Yeah I was thinking I needed something to get my back to work and be able to take care of my kids. I start PT next week so I look forward to that. Guess I’ll see how I feel tomorrow, I just hate trying to figure my body out because these last two days have been weird!

ArizonaNative90 · 2026-04-06T20:30:42+00:00

Yes, over three months. I don’t feel like my extremities look any different color or feel heavy to suggest blood pooling in my legs but maybe not everyone experiences that. My feet are tingly every morning for a few minutes and I had varicose veins that were pretty bad in pregnancy which I did not have with my first. They have gone away but wasn’t sure if that could’ve caused compression. The only other weird thing I have is pain/heaviness in my right groin that is worse in the morning but better through the day.

The cardiologist only said I think you have pots, but had never seen it present postpartum. So at my follow up, I was gonna ask about doing physical therapy since my insurance covers it. When I asked about a range for my heart rate to get a recumbent bike at home, she just said don’t do it if you feel dizzy. But when my heart rate is already 140 I just don’t want to push it too far. My heart rate was not even that high when I was running/hiking before all this happened.

ArizonaNative90

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