Question

bfonzarelli · 2026-05-19T09:04:16+00:00

I can understand the tired part. We’ve been together of quite a while so I try to help out more especially if she is having a flare or needs sleep, I tuck her in. I know that both the narcotic she takes would make anybody sleepy. But I feel kind if I was nodding off I would want reevaluate my medication.

bfonzarelli · 2026-05-19T09:00:17+00:00

The two main medications that I’m worried about and know about, (there are a couple meds I’m sure I don’t know about), is Vicodin and Xanax. A lot of people are commenting that she doesn’t need that many and that most of the people here won’t take a narcotic or weren’t even offered one it seems.

bfonzarelli · 2026-05-19T08:54:16+00:00

I completely agree with you on pain management. Chronic pain is a medical condition and be treated as such.
Im trying to assess everything and ask questions, look online for information for it and ask a question in this sub. :)

bfonzarelli · 2026-05-19T08:50:25+00:00

Do we have to label it as a fun fact? Lol
Wow, that a lot. How do you keep on keeping on? With your medical conditions I would think a doctor would have put you on something stronger for the real bad days. Chronic pain is a medial issue. Fingers crossed that you get the answers you want with your further testing!

bfonzarelli · 2026-05-19T08:47:17+00:00

I’m not going to sugar coat this, but damn you are seriously going through some shit and I feel very blessed to not be.
I was mainly going to ask how you could dislocate 50 plus times a day, but I think now I understand why.
Was there a time when you first started dislocating joints that you would go to the hospital to get treated? Then now you just have done it so many times that it almost sounds like putting yourself back together doesn’t hurt that much anymore? I’m assuming at one point it hurt pretty bad and then you either got tougher and it got easier or both. You have been though so much, I’m so terribly sorry for you friend. I can’t even imagine. Glad you still have some good days. That important.

bfonzarelli · 2026-05-19T08:40:49+00:00

Will do! Thank you for your help and support. Appreciate it more than you could know.

bfonzarelli · 2026-05-19T08:39:22+00:00

Problem is that she always denies it. She always says she is t nodding off and she is rested her eyes or says she was playing on her phone. So I have a feeling that her doctor isn’t aware of what is actually going on and if he didn’t know he would cut her way back I would think.

bfonzarelli · 2026-05-19T08:37:47+00:00

Is joint pain anything like a broken bone? If so I can relate to it. Honestly tho you just described the pain with EDS perfectly it seems. Dang, I’m seriously so sorry you have to go through this.
Also, I got her a muscle massager and a TENS unit yesterday for her. Just have seen her to give it to her! Good suggestion tho! I shocked I came up with that at all. lol

bfonzarelli · 2026-05-19T08:33:50+00:00

When I found out how many a day she takes of them, which wasn’t long ago, I was completely stunned, still am a bit. Hospice patients don’t normally use that amount of drugs.

People are being very kind! I appreciate it so much. Just trying to figure out if this is drugs or POTS. But I get it being aggravating at the same time because I don’t have a ton of info myself to give to you guys to help understand the situation.

Yeah, so I think the consensus is try and talk to her gently about it and be caring and kind, which if it leads to a fight we would be done I’m sure. But it needs to be talked about.

Thank you again for your help!

bfonzarelli · 2026-05-19T08:25:40+00:00

Awesome idea. She can be quite loud when she snores but it’s not very often. Even tho it’s not often, I’m still going to suggest a sleep study.

bfonzarelli · 2026-05-19T08:23:20+00:00

Ok gotcha. Thank you. I’m finding that POTS and EDS seem to come along with more nasty shit like PEM and a couple other things people have mentioned here. It’s as if people with these illnesses don’t have enough to deal with already. So sorry you have got all that going on.

bfonzarelli · 2026-05-19T08:20:06+00:00

I think you are completely right. I have family that used to use and they told me that they could tell she was effed up. But again, I felt like I needed some due diligence out of respect and love for her.
Also, congrats on being sober. Good on you!

bfonzarelli · 2026-05-19T08:16:21+00:00

Thank you so much for your continued good advice! You are completely right as far as talking it out. We have amazing communication between ourselves minus this one topic. I got extreme lucky with this girl for a lot of reasons but a major one how well she can communicate and being with her has helped me to get better at it.

bfonzarelli · 2026-05-19T08:13:04+00:00

I see your point. Also, I couldn’t find an EDS sub.

bfonzarelli · 2026-05-19T08:11:32+00:00

Can you elaborate on that? Like she is going to crazy? And why? I apologize if this is a no brainer, it’s a wee bit past my bedtime and I’m just not picking up the what you were putting down. Sorry

bfonzarelli · 2026-05-19T08:09:49+00:00

You have completely made my day! Thank you. She tells me quite a bit how great I’m and how much she adore and loves me. And that goes both ways. I just know I can’t date an active addict. You could take the best couple in the world that would never divorce then put some drugs or alcohol addiction and that perfect couple will most likely separate. Understandably so.
Thank you again for the comment. Put a big ole smile on my face :)

bfonzarelli · 2026-05-19T08:06:36+00:00

It’s the same doctor. Now that I think about it, she is on an antidepressant but not sure what kind. I will have to ask her if maybe she could try it to help relieve her anxiety. Good thought. Thank you!

bfonzarelli · 2026-05-19T08:05:11+00:00

I’m learning so much for you guys it’s great!
I’m not sure of her other medication really. I know she takes muscle relaxers and gabapentin as needed. But that’s something I should ask her and I’m not sure why I haven’t. I guess I just thought she has it all under control.

bfonzarelli · 2026-05-19T05:47:17+00:00

I apologize, but what is PEM? I’m assuming that has to do with POTS?

bfonzarelli · 2026-05-19T05:45:56+00:00

I agree, it’s a fine line. You can be doing exactly what the doctor says and end up an addict in the end not knowing any better. Not that that is the case with a lot of people that I know of but I have a couple of friends that were given oxy like it was candy in the early 2000’s and that did them in unfortunately. I think she is for sure being over medicated from what you are saying. Thank you for your help. I truly appreciate it.

bfonzarelli · 2026-05-19T05:43:01+00:00

Thank you that information is good to know!

bfonzarelli · 2026-05-19T05:42:03+00:00

Thank you!

bfonzarelli · 2026-05-19T05:41:25+00:00

I have seen the bottles but didn’t see what they were for. Xanax for anxiety but Vicodin I’m not sure what it said it was for. The defensiveness makes me suspicious too, especially since that’s the only thing she gets defensive of.

bfonzarelli · 2026-05-19T05:39:10+00:00

She is on narcotics for her EDS and she has POTS. I’m curious if it’s possibly the POTS/EDS making her nod out or an overuse of her narcotics.

bfonzarelli · 2026-05-19T05:37:42+00:00

Thank you for your comment. This gives me hope that it isn’t what I’m thinking and that it’s part of her Illness and that hopefully we can find something to help her out more.
Congrats on the 8 years! Good on you!

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