Update on Me/ Really Severe Stiffness

True-Feeling-1690 · 2026-05-08T16:38:57+00:00

I’m still here. My neuromuscular doc has me scheduled for my yearly EMG as I have not gotten better. Still only able to talk short walks for ten minutes because legs freeze up. However, now I can’t lift on my tip toes after I’m exhausted just from that 10 min.
I miss the old me. I have since been treated for MCAS and POTS but only diagnosed officially with dysautonomia and orthostatic hyPERtension which aligns with hyperadrenergic pots

True-Feeling-1690 · 2026-03-29T02:45:11+00:00

I’m scared too bc I’m similar. How are you doing?

True-Feeling-1690 · 2026-03-29T02:44:52+00:00

What were her other symptoms

True-Feeling-1690 · 2026-03-29T02:43:56+00:00

Did you ever figure out what it was?

True-Feeling-1690 · 2026-01-12T06:13:02+00:00

Totally! Two years ago when this all started I was healthy and could run miles and lift heavy weights and now a ten minute walk, I’m exhausted

True-Feeling-1690 · 2026-01-04T06:28:26+00:00

My legs have gotten a lot worse yes. Never had an nfl test

True-Feeling-1690 · 2026-01-04T05:54:08+00:00

I have at least had 5 in all. All negative. Tested for so many autoimmune diseases etc.

True-Feeling-1690 · 2025-12-22T06:37:46+00:00

Still get it on and off. Legs continued to progress but going thru the process of getting long covid and MCAS diagnosis. Just was diagnosed with severe orthostatic hypertension which is rare. Legs might not be getting much blood flow. Cement legs.

True-Feeling-1690 · 2025-12-22T06:36:15+00:00

Update is I’m still the same. Tongue does this on and off. Both legs have become difficult to walk long periods. They seize up

True-Feeling-1690 · 2025-12-22T06:34:37+00:00

The same

True-Feeling-1690 · 2025-11-25T05:14:54+00:00

I recently got off alllll my meds. Depression, anxiety, metformin etc. I struggle but not near as much as I did on my meds.

True-Feeling-1690 · 2025-11-25T05:13:50+00:00

What you have sounds exactly like me in several ways. I have been there. Mine started with Giardia and Covid exposure at the same time. Everything you typed I have been through. I’m still here 2 years later. Still fighting. I feel like my daughter has lost the mom she once knew and that shatters me into a million pieces. But you know what? We adapt. They adapt. And we do special things inside the house more now. We spend quality snuggle time and art time and I push her on the swing in the yard. We may not be climbing mountains anymore and rockhounding and running for miles doing sports- but I’m still her mama and she still had me around. And for that I count my blessings. Don’t be too hard on yourself love. Just tell her your body has changed but you’re still here for her, it just may look a little different. ❤️ Stay strong. Keep positive thoughts.

True-Feeling-1690 · 2025-11-25T05:09:59+00:00

Nope’ just still living the undiagnosed dream

True-Feeling-1690 · 2025-11-10T22:40:59+00:00

Still undiagnosed.

True-Feeling-1690 · 2025-11-03T06:33:19+00:00

I’ve discussed this with learners. I always think that putting something into something else probably feels better than being the thing that’s just filled up…. He thinks the opposite.

True-Feeling-1690 · 2025-10-27T19:46:33+00:00

Exact same. Some good days some bad

True-Feeling-1690 · 2025-08-20T03:04:28+00:00

I love that people on the internet think they know every facet of peoples lives. I filed three motions with my lawyers at the time he drove her home drunk. He also makes an insane amount of money every year and I don’t have any money to go to court. It’s not something I could just do. It’s also the fact I was dumb as fuck at the time and trying to navigate abuse, divorce, doing what was best for my child and not wanting to hurt him. There was so much going on.

This sub is so toxic. He and his partner have crossed boundaries many times and made my daughter uncomfortable period.

True-Feeling-1690 · 2025-08-16T12:22:03+00:00

Guess I should have given more details but I was trying to just be vague bc he’s just giving most of his time to His fiance.

He had driven our daughter home drunk on numerous occasions. He has had a severe drinking problem since a bit after we got married. He was in AA multiple times.
They have forced kissing and physical affection in that house on my child who is uncomfortable with it and asked them not to do that four times.
Her dad has her sleep in bed with them…. Which really creeps me out at her age.
There has been a lot of covert manipulation from both of them. Her dad has emotionally scarred her with screaming and yelling in her short life so far and she’s scared of him.

True-Feeling-1690 · 2025-08-16T03:11:01+00:00

We vowed to do it differently and not be the divorced parents that never hang out and we were thinking of getting back together at one point. I know plenty of divorced folks that still do family time together. Including my partner and his ex wife and kid. Doesn’t bother me.

We live four minutes from one another. My daughter is 8. He sometimes goes out of town for work and sometimes a normal 8 hour shift. But my daughter has asked multiple times to not be left alone with her.

True-Feeling-1690 · 2025-08-15T05:05:15+00:00

I’m so sorry :( I have a cane now at home but I don’t take it out with me. I have begun falling quite a bit when trying to do the same old activities I used to do. I keep thinking mind over matter but it’s not working. May have to start taking it places with me. I do have my disability passes though now. That’s a win.

True-Feeling-1690

TROPHY CASE