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

Productive electrophysiologist appointment yay!

so today we saw the electrophysiologist. It was a very productive appointment. He’s starting me on Floren f. It’s a medication to help retain salt and water to help with the blood pressure. He also wants me to see an Ehlers Danlos syndrome specialist. He’s taking labs in like 3 weeks to check my electrolyte levels. i have to try the dose I’m starting on for a month, and if that doesn’t work, then we will raise the dose. Then we give that another month to see if it works. If it doesn’t, then we either try a med called Midadrine or do a tilt table test. I’m going back to see him in three months. He said the ED played a part in this. He said I most likely had POTS. He doesn’t know why I’m going to a neurologist. I now have to find an EDS specialist who takes Medicaid. Let the hunt begin!!! oh boy. Ray

FULL DAY AHEAD

So, this morning, my caseworker is coming to take me to get fitted for compression stockings. Then my homemaker is coming at 10:15 AM and will be here until 2:15 PM. Then at 3:15 PM I’m taking my cat Tweety to the vet. He has to get his shots, and then I have to schedule the appointment to get him fixed. So all in all, a busy day.

Ray

POTS FLARE UP!!!

So, today has been hard. My POTS is flaring up again. I woke up this morning, and I checked my pulse, it was 69. I got up and went to make breakfast. All I did was put it in the microwave. Within 15 minutes of standing, my heart rate was 161. I had woken up at 10:15 am, but by 2, I was tired and had to go to sleep again. I only woke up about an hour ago. POTS is so frustrating to live with. I go to the cardiologist on Monday to get a second oppinion about it. If anyone has any advice on dealing with this condition, please help. I’m taking in extra salt and as much as I can. I also have an eating disorder. Thanks for reading.

Ray

POTS — actually having a good day!!!!

So, today and the last few days have been really good with the heart rate and POTS symptoms. Maybe it’s because of the extra salt that I’m taking in, or maybe it’s just good luck??? I don’t know, but I’m enjoying it while it lasts!!!!!!! I usually sleep on my couch because it’s elevated because I sleep with my head on the armrest, but tonight I’m going to try and sleep in my bed and see how that goes.

Ray

Ehlers-Danlos syndrome? Possible diagnosis

So, my primary care provider told me today that I most likely have Ehlers-Danlos syndrome hypermobility type which is a connective tissue disorder that affects the skin and that it is translucent and stretchy, but it also affects the joints because they are hyper mobile and move in ways they shouldn’t causing frequent subluxation and sprains. This along with pots makes for a very difficult time. These are both chronic illnesses. Looking for support in anyway I can get it.

Echo Today

So, I have my echo today. Hopebblly, nething is wrong. I won’t get the test results back for a while. lly, I can still wear lotion and stuff like that. does anyone have any tips for showering, cleaning the house, and cooking when you have POTS? Have a good day, and thanks for reading.

Ray

Appointment with the electrophysiologist

So I had the appointment with the electrophysiologist and he told me that what I was experiencing was completely normal. He said that it was normal for a person my age 2 have an increase heart rate when going from laying to standing. He even said it was normal for the heart rate to go from 70 to 145 when I go from laying to standing. He told me that I did not have pots. He said that what I was experiencing would go away on its own just by drinking fluid and taking in more salt. He said that people with pots cannot walk or exercise or do anything without passing out. He told me not to worry about the skipped heart beats and less I had over 10,000 in a day. Who can count that high realistically anyway? He also told me that the reason my heart rate increases when I stand is because the blood is pulling in the lower half of my body exactly like pots. He told me that pots gets worse that it doesn’t go away. Was ironic is that’s what I told him was happening to me yet he still said I did not have it, plus, he did not do the tilt table test to diagnose or roll it out. He told me that my heart rate could go up to 200 when doing activities and that that was normal. I have to see a different cardiologist because mine had to agree with his notes because he’s the expert supposedly.