New to this, sorta…maybe

lemonSys · Nov 29, 2022, 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, 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, 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, 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, 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, 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, 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, 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, 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, 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, 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, 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, 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, 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, 05:05 PM

…’nother round of PT started…

— lemonSys

lizardlady · Dec 12, 2022, 07:11 PM

LemonSys, is the PT helping?

lemonSys · Dec 13, 2022, 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, 11:17 AM

Crossing fingers for you hon.

lemonSys · Dec 24, 2022, 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, 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.

lemonSys · Dec 25, 2022, 11:12 PM

Quote:

Originally Posted by unaluna

*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.

Oops on the name — appreciate the correction (and your humor)

Interesting about the opposite side thing, good to know, Ty.

I haven’t had luck finding a good massager/vibrator thingy…any brand/model suggestions?

— lemonSys

unaluna · Dec 26, 2022, 03:53 AM

A boyfriend who was Elvis' age gave me one like 40 years ago. It looks like a flying saucer on a pedastsl. A good vibrator is hard to find.

lemonSys · Dec 26, 2022, 09:39 PM

I’ll do a search on Amazon for a vibrating flying saucer on a pedestal…

lemonSys · Jan 25, 2023, 09:23 AM

K so here we at:

— PT for shoulder = no help

— myofascial release stuff that helped part of knee stuff still holding good a month on ( 90% pain reduction) - yay!

— nerve block diagnostic did eliminate pain for knee stuffs issue #2; nerve doc guy said surgery is way forward.

— myofascial D.O. guy said whoa! to nerve surgery because other stuff to try first (like hydrodisection). If cut up the nerves, likely will end pain but not address underlying issue which could get worse unnoticed because no pain signals leaving me in bad place in long run. I no want surgery anyhow because of bad experience already.

— I told D.O. guy to do the hydro stuff and he did 2 days ago. So far some relief - yay! Hoping it holds.

— Asked PA-C shoulder person and D.O. Knee guy bout myofascial stuffs as possible cause of shoulder stuffs - both said quite possible. Have appointment with D.O. guy to look at shoulder in February. 🤞

— lemonSys and lemonSys[K]

unaluna · Jan 25, 2023, 10:03 AM

Found it! The panasonic panabrator. Looks like they only have used ones on Ebay. But like i said, mine is like 35 years old, and the guy who gave it to me cuz he loved his so much, died like in the past year in his late 80's. So they last a long time and they make you last a long time too.

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