Dealing with my shoulder arthritis, bursitis, snapping scapula and whatever else might be wrong

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I have had a lot of trouble with my right shoulder for many years.  For many months it has felt like a knife is lodged behind my shoulder blade. It is always there. I am used to it.  The pain briefly departed after a cortisone injection into the bursa under my shoulder blade, which confirmed a diagnosis of snapping scapula.

The next step from there is surgery.

I have previously had a subacromial decompression on my right shoulder, and I can tell you that I need the same done on my left shoulder.  All movement is painful and I can hear everything cracking and grinding as I force my arms to move in big circles every day. Move it or lose it.  Pain does not stop me moving joints. In fact, pain makes me move them more. I have seen what happens when I stop moving…those joints seize. And to get them moving again is more pain than if I never let them seize in the first place.

This is what doctors (orthos and rheumatologists) recommend. But when I show them that I have good range of motion, they use that as evidence that my arthritis is not so bad. Another of the ironies suffered by the compliant patient.

The pain in my shoulder is worst under my shoulder blade, but it is also in the shoulder joint proper, as well as across the front of my shoulder.  My collar bones also crack and give a sharp little ‘hello’ to remind me they’re part of the shoulder complex as well.

I haven’t done any overhead work with my shoulder since the previous surgery.  No weights ever go above my head and I adapted the way I workout after my shoulder orthopaedic surgeon strongly advised me to stop pushing my body as hard as I had been.  She listened to me, and I listened to her.  Nice when it works that way.

I do still do push-ups, although I can’t any of those at the moment due to my wrists being too weak. And I can hold a plank.  So I still have good strength in through my shoulder joints.  These things are, however, very painful to do.

Back to the point.  Snapping scapula is a rare diagnosis, but the surgery to fix it looks relatively minor.  Check it out here.  Some bone snipping, drilling,  reattaching muscles, and remove the inflamed bursa.  Hopefully it will grow back and not be inflamed and painful.  Doesn’t look as bad as the previous surgery.

The problem is, I’m not ready for any kind of surgery. I’ve had five surgeries in the last 3 years.  It’s too much. None of them have been major or serious surgeries, but it’s still too much.  And then there is the expense.  The out of pocket costs are always in the thousands, an average of $3-4,000.

Then there is the recovery.  I’m on my own. It’s hard. It just is.  I tend to recover brilliantly (so far).  But I won’t be able to drive for at least a week.  I’ll be out of the gym for several weeks. I’ll be trapped in my house for several weeks.  I’m struggling with a lot of issues right now. It’s not really a good time.

But the pain is intense.  Before Christmas it got so bad it was waking me every night. The shoulder problems cause referred pain in my neck, and I can’t turn my head properly.  I’m sure the neck pain is just muscle spasms from my mal aligned shoulders, but it’s strong pain.  I roll the knots out with my magic physio  stick, and I apply heat and ice.  But the problem recurs because the shoulder is messed up.  It is knife sharp pain, almost as severe post surgery pain.  And it feels like there is a knife stabbing up under my shoulder blade, and another knife stabbing down from above at the junction of my shoulder and neck.  It wakes me most nights.

I haven’t been able to sleep on either of my sides due to my shoulders and hips for years.  I always sleep flat on my back, because I have to.  But even lying on my back, my head falls sideways and then I get excruciating shooting pain up into my head, and sometimes right down to my lumbar spine. There’s a nerve that’s pretty pissed off there somewhere too.

So I decided to harden up and make an appointment with my orthropedic surgeon.  And one with Dr Mike, my psychologist, to help me deal with the emotions I have surrounding the surgery.

The confirmation arrived in the mail, along with a referral to get an MRI.  And then I bailed.  Lost my nerve.  Cancelled the appointment.

Sigh.

And then things got a whole lot worse again, and I have needed to use my wheelchair a whole lot more.  And I realise I need this shoulder for the wheelchair. Fix it, or forever go around in circles!

I’d rather fix my lumbar spine and hips, because they’re the reason I can’t walk far anymore. But that isn’t an option, as my hips show only mild to moderate osteoarthritis. Everyone keeps telling me they can’t hurt that much.  Uh, well, they do.  There is inflammation visible on ultrasound through both hip joints, so its probably purely inflammatory arthritis pain. That can’t be fixed with surgery.

And I’ve already seen two surgeons about my lumbar spine.  One said that my spine is too far gone to fix – too many levels (all five) would require fusing and it can’t be done.  The other said there is no definite nerve impingement and he doesn’t operate to try and resolve pain alone, only when there are nerve symptoms.  (You mean like numbness, pins and needles and incontinence???).  Even though I told him I do have these symptoms, though the continence problems are sporadic the pins and needles and numbness are constant, he said the MRI didn’t bear that out.  Ok, fine.  Why believe what I’m saying when the scan doesn’t bear that out?

Both just told me I’d have to deal with it. Neither understood that the pain in my spine is also like having a knife permanently lodged in my lower spine.  I’m scared witless of spinal surgery so I didn’t argue further.  It’s hard to argue passionately FOR something you don’t really want…But I digress.

Fix what I can fix.  Ignore the rest.

I have remade the appointment with my ortho in three weeks and I am booked in for the MRI tomorrow.

I love my orthopaedic surgeon. She has operated on me twice and she knows me reasonably well.  She saw with her own eyes that I have active RA, so there is no question of her not believing me.  She’s also knows I have a high pain tolerance, and an extreme, irrational fear of anesthetic.  She said she’s never seen such a physically tough, pathetic chicken about anesthetic before in her life!  She’s funny and blunt and cool.

She remembers how terrified I was before my first surgery, and how happy and bouncy I was when I woke up.   At my two week post op check, she told me she’d never had anyone recover as quickly as I did.  That most people didn’t have the range of motion that I had at two weeks by six weeks, some not at 3 months, and others never. And those people blamed her, when in fact it was because they didn’t do their post op physiotherapy. And the reason they didn’t do the exercises, is because they hurt.

She also told me that when the tendon tore completely away from the bone, that would have been excruciating.  Head to the ER excruciating. Except I can’t even remember when that happened.  I’m just used to pain.  Tearing pain is not unusual for me.

She outright said I must be one tough lady.

It was nice to hear that for a change, rather than ‘you have a pain sensitisation syndrome’ or ‘you have a low pain tolerance’.

She did both my arms for the cubital tunnel surgery at once. I had the more complicated and more painful nerve transposition surgery and she cleaned up and snipped the bones as well.  She has never done both arms at the same time on any patient before, and certainly not on anyone who doesn’t have another adult at home to help.  But she knew that I would manage.  And I did.

I know I’m raving.  I know I am overly defensive, but I am so tired of people telling me that I have a low pain tolerance. That’s just an easy out. Its bad doctoring. It’s insulting.  And I have plenty of evidence to the contrary. Point is, this doctor knows me, I trust her, and she can get my shoulder working properly again, and take away one great big pain. Or I hope she can.

I’m also tired of people questioning whether I have inflammatory arthritis at all.  This doctor knows I that do – she saw it with her own eyes, and showed me the pictures of what a rheumatoid joint (mine) looks like, and what a normal joint should look like.

If I didn’t trust her as much as I do, there is no way I’d be doing this.  She is also the doctor who brought up joint hypermobility as a source of some of my pain.  She said that while operating on my elbows, she could see the joints were hypermobile.  And that I should discuss it with my rheumatologist.

My rheumatologist just scoffed and said joint hypermobility is not treatable, and so there was no point discussing it.  But for me, it does explain why I am in more pain than people think I should be.

My ortho told me to research Ehlers-Danlos syndrome, which is something one of my friends has been telling me to do for literally years.  While there aren’t treatments, it is known to be a very painful disease, and many suffers use wheelchairs.  A quick run through the symptom list ticks a lot of boxes.  I will talk to my ortho about it more when I see her.  And start researching in earnest.

Most of all, I feel better now that this decision is made.  No backing out this time.

4 COMMENTS

  1. I was about to ask if you’d ever been tested for EDS as I read about your hypermobile joints. Push to have this looked into. I’ve heard it’s quite hard to diagnose as it’s not as common as things like RA and Fibro. If it ticks that many boxes, I’d be looking into that avenue.

    • Thanks Gillian. I have found a website for Australians with EDS. Most seem to have a terrible time getting diagnosed, so I’m hoping to find a rheumatologist who is knowledgeable. It ticks a LOT of boxes, and makes a lot of sense. And it seems to co-exist quite commonly with RA, which is just the opposite of what my rheumy said…I wish sometimes they’d just say ‘I don’t know’ rather than making stuff up, which is what I feel like a lot of them do!!!

  2. Have you tried sleeping with a neck pillow? I got one years ago after my initial RA diag. And now I can’t sleep without one. Supports my head keeps it straight and supports my neck. I can’t recommend one enough. It will keep your head from flopping side to side in the night. And I think you can get those that can be heated in the microwave. Mine has memory foam. Gentle Hugs!!

  3. Depending on whether or not you (got lucky?)..in achieving an accurate assessment/diagnosis for EDS from the Rheumy you have probably seen by now (fyi..unfortunately many if not most.. Rheumys are ‘still woefully’ underinformed about EDS) I highly encourage you 🙂 to consider doing both of the following: join the EDS support groups for Australia and the one on Inspire (it is via the EDS Society whom is the longest running/most established EDS group in existence ..used to be called the EDNF (Ehlers Danlos National Foundation) You will very likely be able to garner names of EDS aware Geneticists, and when/where available names of Doctors,specialists pile info, tips support etc by those who’ve already been down the EDS ‘road’ *Note here’s the links https://www.ehlers-danlos.com/support-groups-australia/ …and the other group (which btw, has over 53,000 members to date) is http://www.inspire.com I’m sure you’ll be amazed at the info you can garner! 🙂

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