Pain

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I finished Airplane II.

I started another movie, but it isn't funny and it might just make me sad. So, I'm looking for something else.

My family is gone to go celebrate. I was in too much pain. I said I'm not leaving my bed unless I need to pee or I'm going to the Hosptial. Not a fantastic day.

But, I'll make it. Because I always do.

How about "Naked Gun 2 1/2?

I bet you would like "Young Frankenstein," too.

I'll check them out. Thanks.

Afterwards, try "It's a mad, mad, mad, mad, mad world" from 1963. Starring many big stars from that era.

Have you tried kinesiology tape for your condition to prevent your joints from over extending? It's the only thing I can think of that might help prevent at least some of your dislocations. Soma is another muscle relaxer that you could try instead of flexeril.

I also think if your in the the US regardless of the state you can buy CBD oil legally as long as the THC levels are under a certain %. Ask some members here who are more informed than I am on this issue though.

What is the prednisone for?

Yes, I use a kinesiology tape. But, I also wear at least 7 braces at any given time to walk. Sometimes I double up on the k tape and braces (for instance my knees, because the braces alone don't keep my knees from subluxing).

I have CBD oil.

The prednisone was to preserve eye function while I wait for my high CSF pressure to be taken care of.

What if you add compression joint sleeves or pants/shirts in addition to your tape and braces for extra support?

Is your pain localized in nature? Is it inflammatory or sharp or both?

My aunt who is in chronic pain gets nerve block injections into her spine every few months, maybe this is an option for you as well?

There is also Nortriptyline which is a TCA and acts to dull the sense of pain like Lyrica does that you could try. Im sure its cheap and easy to get. It was one of the meds my pain doctor used for me.

There is also vagus nerve stimulation, again to interupt the pain signals reaching the brain.

Another option I used sometimes when I was in intense pain was self-harm but in a way that was controlled and not damaging in anyway like using an ice cube against my skin or digging my nails into my skin for short bursts at a time. It helped to focus on that pain which kind of gave some sense of calm and control and made my focus on the rest of my pain dulled. It also releases endorphins which help with pain. You can do it in a healthy way that doesn't leave any lasting damage. May help you when you are in intense pain to help cope.

How are you feeling today, Screen Name?

Better, because I spent all day yesterday in the hospital (and discharged last night).

They let out some CSF with a lumbar puncture and gave me some super loopy meds in my IV. (Letting out the CSF helped the most, I'm so glad I went in.)

I might make another post some other time about this, but do you guys have trouble communicating with doctors and hospitals? I can't go alone. I don't seem to understand what they want from me. I also ended up super grump at my husband yesterday because he kept saying I was "evading" them or not answering correctly (and somehow saying my pain was less than it is). I don't know. It's frustrating. I actually looked up patient advocates, since because my husband travels...he can't always be with me (and someone has to watch the kids...or they have to come along...).

Anyway...I'm a little better now. I also got prescriptions for Norco, Tramadol, and Phenergen. And my neurologist promised the hospital to see me within a week.

NONE of the people who treated me there knew what Ehlers-Danlos is. I have a wallet card that explains it, but it's super frustrating, because...you know how autism affects every single thing you think, say, and do? Ehlers-Danlos affects every single thing my body does, how it reacts, etc. It's a defect in the way my body is encoded to make connective tissue...so to not understand that, means you can't possibly treat me in the best way needed. ...which is why I'm waiting to be seen by a specialist in these head issues in the EDS population, but it will be at least a year.

But, I am very thankful for the relief the hospital was able to give me and that it wasn't just a crappy visit.




Noca, I do wear *some* compression clothing. I don't know that they serve to help stabilize my joints all that well, but they significantly help my co-morbid POTS situation.

And my social skills are far from being able to request specific medications and getting them. Thanks for caring though.

I'm glad you're feeling better. We'll have to think of more funny movies to tide you over the next time it happens!

There are some doctors, frankly, who seem rather "Aspie" in how they present themselves. Some lack social skills. Others are overly confident in their abilities. Most don't believe you know as much as you do about your own condition.

Some doctors are also skeptical because they've run into malingerers before--and that ruins it for the people who really suffer from chronic pain conditions.

But I'm glad these people took you seriously, and that you were able to get the relief you desired. Having to drain spinal fluid every so often is a very serious thing.

Why don't you carry a list of the medications which you desire.

And maybe a list of your typical symptoms.

That sounds smart. Thanks!

The post I made disappeared.

The gist was: kraftiekortie (my iPhone still remembers your screen name), my husband just bought me a little notebook so I can start something useful like you say.

As the pain is melting, I'm feeling more annoyed at sensory stuff.

I managed through this game.



(I'm trying to share more of myself. It's the new Brandy ).

...even though just that picture makes me want to hide from sensory overload, yet I just lived it (somewhat successfully).

I did send the kids out to jump on the trampoline and give me some space.

...which makes me think: generations ago, it was totally cool for parents to jaunt send the kids out all day and come home for dinner. I could handle that. (Please don't mishear me. I love my kids. The girl in the picture is 6. Her name is Eden and she's NT and has Ehlers-Danlos. The boy is 9. His name is Elijah and he is on the spectrum.)

Anyway, parents now who "send their kids to the neighborhood park" are having their kids taken from them. It's a whole new world. (And its NOT more dangerous...we just have 24/7 access to the dangers around us and in a sensationalized way that helps with tv ratings....)

I've derailed my own post. I'm in much less pain at the moment. I cancelled all my PT for this week (because of the CSF drain). I will go into work for about 1 hour tomorrow. It's important to me to try to get back to it all.

My next major goal for myself is to walk/hike 10 miles in one day. I'm only up to 5,000 steps, so it'll be quite awhile. But, I thought it would take longer to walk than it did.

Geez.. I think some of my meds are making me a little extra spacey.

I'll ask over in the parents section about sensory overload as the parent.



Noca, thanks for your replies and questions. I made one reply specifically to you that seems to have gotten eaten somehow. I forgot what I said. But, thanks.

That's a nice picture! Those games look very Montessori-like. And they seem to be enjoying them.

The bookshelves look like a professor's LOL. Very homey (not homely, as in not-so-good looking).

You're making me want to retire to the southern Tennessee Valley. It's in a scenic location.

A couple of years ago, I remember you folks had 7 inches of snow, plus some ice glazing, which closed stores for like a week or so.

Haha, my husband keep trying to get me to thin my books. He wants me to have them all as ebooks instead. It's an ongoing battle... (And then, he bought me a nook and they closed their store...which is a whole other thing.). But, I grew up in a house that prized it's books. My husband owns less than 5 books himself (and half of those are comics...). My dad always had this enormous library and he was always hiding in it. I just imagined that's what adult life was like...full of books.

We did have some more snow a few years ago. We don't get snow every year. But, if we *think* it will snow/ice, everything shuts down. A week or so out of school every few years is a thing we all enjoy.