pain….is it PMR or something else?

[Mstiles]

I posted about a month ago with pain in my mid back, worse laying down. I saw my GP’s Nurse Practitioner who said it was coming from the long muscles that are under the shoulder blades. He gave me exercises to do. I have mild to moderate scoliosis.

Two weeks later the pain had gotten worse and was now involving my right ankle, (swollen,) right hip and knee, (knee has arthritis and is swollen), left hip and sacroiliac joints. It affected my gait and I’m now staggering and limping. I’ve also started to have pain in both hands, seems like the knuckle joints.

He then prescribed Tylenol 2 with codeine which helped quite a bit but it makes me sleepy and I can’t take it every four hours on a continuing basis.

I’m on 9 mg of prednisone and haven’t tried increasing the dose, if this isn’t PMR. My latest sed rate, CPR are right at the edge of being over the limit, been steadily increasing for 3 months.

I see my GP tomorrow for a 45 minute appt I made months ago

What are your thoughts and suggestions? Would other tests be helpful? If the Tylenol with codeine helps, does this rule out PMR? At this point I’m not really functioning unless I take the Tylenol codeine. .

[Pixix]

I’m sorry you’re suffering, but I’m not a doctor, & it sounds complex, very pleased to hear you have a 45 minutes appointment with one today/tomorrow. Look after yourself. I have a lot of pain, & all is from other diseases, not PMR. I had an hour appointment with my doctor and he did a ‘top to toe’ exam to find out just where my different pains are coming from, & look at my existing fibro, PMR & osteoarthritis issues, too. He the diagnosed me with other issues. Do take care. Hugs, S x

[Mstiles in reply to Pixix]

glad you have such a thorough exam! If you don’t mind telling me, what other new issues did he find and how did he diagnose them? I’m so used to the 15 minute exam while staring at the computer I’m curious to know what a comprehensive exam consists of!

[Pixix in reply to Mstiles]

He found hypermobility & probable Ehlers Danlos Syndrome, he found my knees point outwards, he found I have large swellings below my ankles (I thought they were fat from weight put on due to steroids), he diagnosed trochanteric bursitis, & looking at my hands & hearing of recent problems, diagnosed Raynauds syndrome. He diagnosed vertigo last year, osteoarthritis, Polymyalgia two years before. I already had fibromyalgia when he joined our Surgery. He also did a complete set of bloods, as I felt my fatigue was even worse than usual, & I had very little folate in my body, quite depleted, so I’m taking folic acid tablets for six months. The only thing that mystified him was the hand & arm tremor, & he said it was bad & referred me immediately to neurology. So, what did he actually do? Holding hands straight out in front of me, standing on my leg, shutting eyes while standing just in front of a wall for safety, took hold of my hands & put his hands between the fingers & squeezed them. Then I lay on the bed & he took hold of my feet, turned then, moved them around, then lifted one leg & bent it across my body, then the other. He then felt my hips. Then the shoulders & arms. All the time gentle, but asking & seeking out the pain points. I’ve forgotten a few things, I’m afraid, but this gives you the gist! He’s very kind & even removed & out my socks back on for me (he has young kids, so he’s good at it)!

[Mstiles in reply to Pixix]

thanks for the detailed reply Pixix.

Sounds like a great doctor. Hope he found something to help everything and that you’re doing better.

[Pixix in reply to Mstiles]

unfortunately not! He has helped my bursitis, with a depo medrone injection. I’m waiting for an appointment with a different rheumatologist. My neuro appointment is end July, 2024. It’s not easy or quick to resolve anything these days with the NHS….I think it’s right to say it’s ‘in crisis’. I now have one side of my body I can sleep on, that’s a benefit. Bad flareup of PMR still in progress. Some Warmer, drier weather could help some of it!!

[Mstiles in reply to Pixix]

I’m on the US and it’s pretty bad here also with appointments. Have not found a good rheumatologist. Have tried three so far on this journey!

So have you increased your pred and did that help the pain? You are having a flare on top of everything else?

That’s what I’ve been trying to figure out, am I having a flare or is something else, and if so, what??

[Pixix in reply to Mstiles]

oh, I thought you’d be OK with your healthcare system, as you pay, & it’s not all free. I didn’t find any need to see a rheumy for PMR at all. My doctor handled it with me at first, then left it to me, but I could ring him if I had problems. I only had the referral for sero negative arthritis & osteoarthritis because I needed a specialists to send me to other hospital depts like orthotics. It’s different if you have GCA or are on methotrexate, though. I haven’t increased my pred because the rheumy told me to come off pred as soon as possible, then I found out that the steroids could be the reason I have increasing dislocations of my joints. The way I define if I’m having a PMR flareup is to think back to the symptoms I has on diagnosis…the bad bilateral shoulder pain & the pain in hips & groin area, plus dreadful head sweats if I did anything at all involving movement/exercise. If the pains I’m getting aren’t connecting with that, then it’s one of the other 7 or 8 diseases! The other way is to take pain medication…if it works, then I think (but ask others for confirmation) that it’s not PMR! No pain medication worked for my PMR symptoms. Hope this helps!!

[Stills in reply to Pixix]

sounds like the perfect dr, I could do with help getting socks on some days, perhaps he could pop round 😆

[Pixix in reply to Stills]

It’s a bit far to go, but a good idea!

[Pass7 in reply to Stills]

putting socks on an issue? I was having lower back, groin etc down to my shins. Rheumy said hip bursitis. After shots no pain relief. Finally orthopedic DX hip replacement! Waiting to be scheduled.

[PMRpro Ambassador]

If the markers have been steadily increasing for the last 3 months that is a classical warning sign that the disease activity underlying the symptoms is increasing and the dose of pred you are on is no longer holding the inflammation in check. That doesn't mean it is PMR inflammation though and what you describe doesn't sound entirely PMR-ish.

When you say the back pain is worse when lying down - do you also mean it is worse at night?

[Mstiles in reply to PMRpro]

Worse at night but not not just at night, lying down I couldn’t get comfortable. But over the course of the month this has been going on the back pain has mostly gone except in the mid back sometimes, and now it’s mostly in hip, knee, ankle,(right side), and right hip.

[Mstiles in reply to PMRpro]

so if the Tylenol with codeine mostly works for the pain then it’s not PMR?

[PMRpro Ambassador in reply to Mstiles]

As a general rule you can say that it is questionable - tylenol with codeine/cocodamol has no antiinflammatory effect worth talking about and for most people they need that to get relief from PMR and for many even NSAIDs don't do anything,

[MiniSpec]

Hello, I'm sorry to hear about your increasing pain and stiffness. I've had PMR for nearly 14 years, and been on Pred for nearly 13yrs. During that time I've found that although the Pred allows my joints to work without stiffness, there is still a lot of pain. Paracetamol does nothing for that pain, but for me codeine is the magic bullet that allows me to live almost normally each day.

From my own experience I would say that codeine is effective against PMR pain, and if it keeps you mobile then carry on taking it. After all, quality of life is important at our age (I'm 72) and anything that allows us to retain any enjoyment in our lives is to be exploited to the utmost.

I hope your doctor's appointment goes well. You'll have to let us all know what he/she has to say about it all. Best of luck.

[Mstiles in reply to MiniSpec]

thank you MiniSpec. So you find the codeine works along with the pred for the PMR pain? The codeine seems to work pretty well, I’ve been trying to find out what is causing this different pain so if it’s not PMR flare, I wouldn’t have to increase the pred.

[PMRfacebook]

Sounds complex and good you've got a gp appointment. Doesn't sound like typical PMR symptoms but I'm not a doctor generally pain and stiffness affects both sides (shoulders and hips primarily) Hope you get things sorted

[Mstiles in reply to PMRfacebook]

thanks Pro. What kind of tests or exams would be able to identify the causes of this pain? Process of elimination? I’ve now got some pain in both hands, never had that before. Seems to be the big joints.

[PMRpro Ambassador in reply to Mstiles]

It does sound as if there could be an element of some form of inflammatory arthritis going on - it does sometimes happen that it starts looking identical to PMR. A proper physical examination would be a start and then they could decide what sort of tests would be appropriate.