chronic pain is my companion Trigger warning

chronic pain and medical stuff trigger warning:

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chronic pain and fatigue is my constant companion. I retain urine, it hurts when I eat, I constantly dislocate my shoulders, ribs, and fingers; my hands and feet are constantly cold; if I stand to long, my legs hurt because of the blood pulling; my jaw hurts after eating or chewing; I just want to be normal, but chronic pain is my companion. Brain fog is always an issue. I just feel so alone.

I had to cancel therapy yesterday because of the fatigue. I also woke up yesterday with a dislocated rib and shoulder which I had to put back in. I knew it was going to be one of those days. I hated to cancel therapy, but it was necessary. Thanks for reading.

Ray

eating issues and medical stuff TW

Trigger warning: eating and digestive issues and chronic pain and medical stufft
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Hello everyone,
so we are really struggling with eating because of pain from eating because the food just sits there and doesn’t move for a while. Also been struggling with heart rate and blood pressure issues. I do think this is related to EDS (Ehlers’ Danlos Syndrome). All alters as far as i know have agreed to try with eating, but the physical stuff is making it really hard. We haven’t used laxatives in a few months which is good, but now we are finding it hard to even try a lot with eating because of the physical pain. The fatigue is a lot to handle. Heart rate the other day went from 82 to 132 from laying to standing. I do understand that there are mental health things going on, but there are also physical things going on as well which complicate the mental health stuff. I don’t even know where i was going with all this, except to say that we are very frustrated. The Reglin isn’t working anymore either. Ugh!! Blood pressure was 89/46 the other morning. Our new worker is recovering from anorexia, and she doesn’t understand all the physical stuff we have going on, so when she asks us if we’re hungry, and we say no, she thinks it’s because of the eating disorder, but it’ really because we know how much pain eating causes us. I wanted to be honest about this with people and hope you understand that there is more to this eating issue than just an eating disorder. We’re just really complex patients. Hoping the new PCP can help figure some of this out. She is referring us for genetic testing. I’m just at a complete loss.
Ray

It whirlwind of craziness and frustration

Hi everyone,

So we don’t have a therapist or a primary care provider. Was supposed to see the psychiatrist on the 18th which was my birthday, but got there and found out he was out sick. They said they tried to call me but they had the wrong phone number. Getting a new primary care provider on 13 August. The electrophysiologist we had left the practice so know how to see someone else so cannot get medications raised until we see him. How do you go to the ER this past Sunday to get fluids because blood pressure was 78/35. Yesterday morning it was 72/27 but I can’t go to the ER every time it’s low. Just wish this craziness with Stup. So basically right now for support we just have our dietitian and another lady who is helping us through an organization called beauty after bruises. Every therapist I have tried to call has said that there are either too far away, can’t work with my insurance, or didn’t think they could work with my issues because they are so complex. Because I have postural orthostatic tachycardia syndrome, the anorexia does not make that any better, but how am I supposed to get treatment when no one wants to work with my insurance and my insurance doesn’t want to pay for the programs that can help!

Ray