New to this, sorta…maybe

lemonSys · Nov 29, 2022 at 04:33 AM

So chronic pain has set in - goin on about ten years - and has been “spreading” - maybe that’s just me being paranoid because I am paying more/too much attention to myself lately; like a body check-in kinda thing.

Anyhow, osteoarthritis in knee lead to extensive surgery last year. It helped, in a way. It did minimize the pain I was having that lead to the surgery in the first place, but, I now have new/different and worse pain. My MRI shows the stuff done is healing successfully and that there is no structural damage present in the joint. Good news! Bad news, too, cuz why the intense pain?!

Also, the “spreading” issue lead to a shoulder MRI. This showed “marrow reconversion”. Possibilities for this *could* include autoimmune stuff.

Anyhow, surgeon sent me for second opinion/new set of eyes on my situation. This doc didn’t really have anything to add. He did say, though, that both he and first doc are both orthopedists that focus “only” on limited aspects of the body when you consider how complex/interrelated the body really is.

So, bloodwork done for “investigative” purposes; referral to a D.O. — opposed to an M.D. - and a rheumatologist, and a nerve guy.

IF it is autoimmune related, is there “hope” of relief? Maybe that’s not practical to ask as there are so many different “autoimmune stuffs” out there. I just want to know why I hurt so bad and so much - cuz, in my mind at least, that means something can be done to “fix” it.

However, tbh, I am wondering if “fixing” is even a realistic/reasonable hope to have. Maybe “this is my life/my normal” and I just gotta except and deal. Worse, maybe this is just the beginning, and things will decompensate, and I’ll refer to the pain I have now as the “time when it wasn’t so bad”.

Anyone relate?

— lemonSys

lizardlady · Nov 29, 2022 at 12:48 PM

LemonSys, the long journey to finding out the cause of our pain is discouraging. The second doc was right. Orthos look at bone and connective tissue. It's rare for them to look for something else. It took me years and multiple docs to get a diagnosis. The specialists I saw all focused on their own area. It took a GP who looked at all the test results to diagnose me.

Since the docs do not know the cause of your pain yet it's hard to say if it can be "fixed." Think of it in terms of a car that won't start. The mechanic (doc) needs to figure out why the car won't start to know if it can be fixed.

Travelinglady · Nov 29, 2022 at 04:50 PM

Hi, LemonSys, and welcome to MSF! I'm sorry you need to post in the pain area. Don't give up hope! I agree with Liz's car analogy. I think of a car with different parts that break down and need to be worked on.

I have some undiagnosed pain, but I do take prescribed opiates and rub the painful areas sometime with various kinds of pain-reducing creams or gels.

I'm not familiar with the problems your docs say you have, but I do know all sorts of pills and treatments are being recommended. Of course, concentrating on the pain doesn't help. I find that distracting myself, even by coming to this site, helps me.

I had a knee replacement a couple of years ago, and my knee does still hurt sometimes, even though the X-rays "say" everything is fine. Pain might be a sign that you're healing and that takes time, especially if the doc really tinkered in that area.

As Liz also said, you might head to a primary care doc. I've been amazed at what they suggest, including the type of specialists to go to.

Hope I helped some!

lemonSys · Nov 29, 2022 at 08:11 PM

@lizardlady and @Travelinglady —

Thanks both - I appreciate the responses.

The car analogy makes a lot of sense. Maybe I should sell my current body and lease the new model for a couple of years then rinse and repeat…lol…well, kinda lol, kinda not…[ sigh ]

I will try to be hopeful and patient. Maybe the good news is that this process of “follow the clues” has actually started as opposed to me just trying to ignore and wish away the pains. At least now I have a better chance at relief than when I wasn’t doing anything.

— lemonSys

lizardlady · Nov 29, 2022 at 10:10 PM

Lol. I've said for years I'm waiting on the recall notice on my body. I like your idea of trading it in on a new model every few years.

Breaking Dawn · Nov 29, 2022 at 11:43 PM

Do you know about conversion disorder? If you don't, maybe you could google for articles about it?

lemonSys · Nov 30, 2022 at 12:05 PM

Quote:

Originally Posted by Breaking Dawn

Do you know about conversion disorder? If you don't, maybe you could google for articles about it?

I have not heard of it. I shall google

ty for ideas.

— lemonSys

Travelinglady · Nov 30, 2022 at 12:58 PM

As a Christian, I believe I'll get a new body when I die. But I think my current one must have some recalls.

Maybe we can all get patched up soon!

lemonSys · Dec 05, 2022 at 04:57 AM

Anxious. First appointment with rheumatologist in about 3 hours. Am I crazy that I think the anxiety is because I’ll be told “everything is honky dory - now move along”? I mean, that’s a good outcome, right? Right. So why does it “scare” me?? I sound so “messed up” saying this I know. I hope it’s not offensive or negative or something to anyone. I don’t like this thought/feeling, but it’s my truth.

[ sigh ]

— lemonSys

Pflowers · Dec 05, 2022 at 05:27 AM

You're not crazy, messed up, offensive or negative @lemonSys ...

Perhaps the anxiety is because you may feel like you won't be believed, heard or listened to.

Nothing's worse than knowing something isn't right about our health then have it dismissed or ignored by the professionals.

I'm hoping you have an appointment with one of the "good ones".

The kind that knows your experience is real and is willing to stand by you as y'all figure it all out.

In the meantime, deep breathing may help calm your anxiety a little bit.

Inhale for a count of 8, hold for a count of 8, then slowly exhale until nothing is left to exhale ...

I generally do this 3 to 5 times and find it most helpful with the anxiety.

Sending positive vibes to you for your appointment today!

Breaking Dawn · Dec 05, 2022 at 05:27 AM

I don't think there's anything wrong with what you're saying. And I hope it all turns out the way you'd like it to.

lemonSys · Dec 05, 2022 at 11:04 AM

Thanks for y’all’s support - muchly appreciated

So, back from the appointment.

Doc - well docs, plural; fellow and attending - was/were super nice, so that was good.
But,
Looks like whatever is causing my pain isn’t “in their realm”. They did order one additional blood test to “finish off the panel that was started” (already have a recent MRI on file), but they are “pretty certain” it’s not autoimmune-y stuffs. They also added the caveat that “just because it isn’t clinically significant now, doesn’t mean it may not become so later”. Gotta love disclaimers - guess that’s why it’s called practicing medicine (a joke my dad loved to tell)

So…yeah.

Still have a consultation with a nerve guy (cuz “maybe?” in the words of my ortho doc) and an ultrasound from a sports med D.O. guy coming up late December and January.

D.O. guy thinks mayofacial trigger points/pain syndrome. Rheumatology fellow “would take that bet”. So…🤷🤷🤷

I’m glad it’s likely not autoimmune, though, as immunosuppressants sound scary - especially since I am already in “scary territory” with breast cancer.

That said, though, I’m also a bit…”let down” (lack of better words) cuz I want flipping reasons/help/relief/etc.

All hope is not lost…(yet)…though. Something will “turn up”…right? I mean…please?…

[ sigh ]

— lemonSys

lemonSys · Dec 05, 2022 at 11:28 AM

@Breaking Dawn —

Quote:

Originally Posted by Breaking Dawn

Do you know about conversion disorder? If you don't, maybe you could google for articles about it?

So I googled “conversion disorder” (now called “functional neurologic disorder” I think) and read some about it on Mayo Clinic site.

I definitely have many of the risk factors mentioned as well as fit lots of the criteria listed under the heading “Functional neurologic disorder may be associated with…” stuffs, but as far as the actual signs/symptoms, not so much - they sound much more severe/pronounced (and in a couple cases entirely absent) than what I’m experiencing.

[ I feel for those that do have it; sounds majorly “ugh!” (lack of better description ]

Appreciate you putting it on my radar🙂 - I have it “filed away” as something to keep tabs on.

— lemonSys

lizardlady · Dec 05, 2022 at 11:44 AM

Quote:

That said, though, I’m also a bit…”let down” (lack of better words) cuz I want flipping reasons/help/relief/etc.

All hope is not lost…(yet)…though. Something will “turn up”…right? I mean…please?…

Lemonsys, most of us here can relate to that let down. You want an answer so you can "fix" the problem. I got so frustrated by doctor after doctor shrugging and telling me they did not know.

lemonSys · Dec 11, 2022 at 05:05 PM

…’nother round of PT started…

— lemonSys

lizardlady · Dec 12, 2022 at 07:11 PM

LemonSys, is the PT helping?

lemonSys · Dec 13, 2022 at 07:27 AM

@lizardlady —

Three answers to “is PT helping?”:

1) No. It did nothing to help the pains in my knee pre-op.

2) Yes. It helped me regain strength and mobility post-op. Caveat: It helped with (some of) the issues brought on by/recovery from the surgery itself. It did nothing to remedy the pre-op issues. (and actually created a new one, too. So, doc, why why why then the friggin’ surgery in the first place??!! Uggh!!)

3) Unknown. This round is my first go-round for my shoulder. I have been at it less than a week. Soo….maybe it will help? *crossing fingers* I’m trying to be cautiously optimistic.

— lemonSys

lizardlady · Dec 13, 2022 at 11:17 AM

Crossing fingers for you hon.

lemonSys · Dec 24, 2022 at 12:58 PM

Had ultrasound on knee. Couple bone spurs, bursitis, tendonosis/itis/othapy…blah blah blah.

But then, D.O. says he can do some “osteopathic manipulation” on the “suspected trigger point” he felt before (is that “mayofacial release”?)

Holy h.e.double-hockey-sticks. !! Hurt so bad. Huge dark bruises now. We heard the “fascia push through” (his words) a couple times - I thought it was his knuckles cracking.

But, also, significant relief!! That’s all it takes?! Flabbergasted. So grateful.

Some hope restored that other pain issues will get figured out.

Anyone have any experience with trigger points and/or mayofacial release?

— lemonSys(K)

unaluna · Dec 24, 2022 at 01:39 PM

*myofascial. Mayo causes inflammation!, stay away from it! Altho a mayo facial might make you look younger...

If i find a hot spot, i will use my giganto vibrator on it and on the oppozite muscle side (like opposite sides of the spine). The opposite side is where the tightening is that causes the hot spot on the other side.

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lizardlady Legendary Member Since Nov 2002 Location: Mid World Posts: 17,725 (SuperPoster!) 21 7,570 hugs given	Nov 29, 2022 at 10:10 PM #5 Lol. I've said for years I'm waiting on the recall notice on my body. I like your idea of trading it in on a new model every few years.
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Breaking Dawn Legendary Member Since Sep 2019 Location: USA Posts: 16,689 (SuperPoster!) 5 42.2k hugs given	Nov 29, 2022 at 11:43 PM #6 Do you know about conversion disorder? If you don't, maybe you could google for articles about it? __________________ "Every moment is a fresh beginning." (T. S. Eliot) "Problems are not stop signs, they are guidelines."(Robert H. Schiuller) * * * * * *
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Travelinglady Legendary Wise Elder Member Since Sep 2010 Location: North Carolina Posts: 49,039 (SuperPoster!) 14 23.2k hugs given	Nov 30, 2022 at 12:58 PM #8 As a Christian, I believe I'll get a new body when I die. But I think my current one must have some recalls. Maybe we can all get patched up soon!
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Breaking Dawn Legendary Member Since Sep 2019 Location: USA Posts: 16,689 (SuperPoster!) 5 42.2k hugs given	Dec 05, 2022 at 05:27 AM #11 I don't think there's anything wrong with what you're saying. And I hope it all turns out the way you'd like it to. __________________ "Every moment is a fresh beginning." (T. S. Eliot) "Problems are not stop signs, they are guidelines."(Robert H. Schiuller) * * * * * *
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lemonSys Member Member Since Nov 2022 Location: USA Posts: 378 1 228 hugs given	Dec 11, 2022 at 05:05 PM #15 …’nother round of PT started… — lemonSys __________________ “The mind is its own place, and in itself can make a heaven of hell, a hell of heaven.” — John Milton, Paradise Lost
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lizardlady Legendary Member Since Nov 2002 Location: Mid World Posts: 17,725 (SuperPoster!) 21 7,570 hugs given	Dec 12, 2022 at 07:11 PM #16 LemonSys, is the PT helping?
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lizardlady Legendary Member Since Nov 2002 Location: Mid World Posts: 17,725 (SuperPoster!) 21 7,570 hugs given	Dec 13, 2022 at 11:17 AM #18 Crossing fingers for you hon.
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unaluna Elder Harridan x-hankster Member Since Jun 2011 Location: Milan/Michigan Posts: 40,748 (SuperPoster!) 13 68.3k hugs given	Dec 24, 2022 at 01:39 PM #20 *myofascial. Mayo causes inflammation!, stay away from it! Altho a mayo facial might make you look younger... If i find a hot spot, i will use my giganto vibrator on it and on the oppozite muscle side (like opposite sides of the spine). The opposite side is where the tightening is that causes the hot spot on the other side.
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