Adrenal Insufficiency or Just PMR!!: I spoke to a... - PMRGCAuk

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Adrenal Insufficiency or Just PMR!!

Estellemac
Estellemac

I spoke to a Rheumatologist today. I’ve been in Pred more than 4 years every time I reduce I get a flare up. Or so I think. This time it’s my lower half left leg and hips. More buttock pain like sitting on a tennis ball. Then it goes down my leg. Bending , walking, standing and sitting then getting up is painful but different to PMR? I do have Osteoarthritis two herniated disc and a crumbling coccyx. So it’s a difficult one for the Rheumy. I see her face to face in July for a full consult. Any ideas or experiences you want to share are welcomed.

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The sitting on a tennis ball reminds me of a phase of pain I went through. I was thinking along the lines of childbirth damage and a prolapse perhaps. Like so many other peculiar symptoms it went away with the onset of GCA, and high dose Pred ( it mops up so much). It was never really resolved or diagnosed. Poor you this all sounds so miserable and I agree, more like collateral damage than the central condition, like weakened muscles. You have a lot going on. I really hope that the medics can help you soon. Good luck with the full consult - they have really been hampered in doing their job. Let us know

Had a prolapse fixed so that’s one to rule out. One thought I have is Bursitis that won’t go away. Like you say Pred fixes so much and I blame everything on PMR time to look outside the box.

Maybe it’s piriformis syndrome. Feels similar to sciatica. There are exercises on the internet and they do help. It is painful. Best of luck.

That’s my second question for the Rheumy thanks.

PMRpro
PMRproAmbassador

I get those symptoms - one-sided to start - as the prelude to a flare but it is the myofascial pain syndrome part of the picture. For me it is the piriformis muscle that is mainly the problem and when it is tight it traps the sciatic nerve (which passes through the middle of the muscle in some cases) and causes the referred pain down the leg. It was part of my PMR right from the start, it had always been there long before, probably as the result of longstanding back problems which got worse when it was denied by all medics in the UK! An orthopod in Germany identified the scoliosis underlying it and with therapeutic massage and physio it was almost sorted when we moved back to the UK. The scoliosis was almost gone, it had been made worse by the tight/spasmed back muscles pulling it out of position. Years later, Pilates eventually got me back to where I had been when leaving Germany but it's all slipped again here - can't afford private classes here!!!!

Now, here, it is managed by pred dose and the Pain Clinic. As long as I keep on top of the MPS side, the PMR is great providing I am on enough pred - and I will not compromise on that. But my PMR is a funny one - funny peculiar, definitely not funny haha! It flares on a regular basis, and the regular flares ARE happening more often I think. But entirely muscular, no joints at all.

tangocharlie
tangocharlie in reply to PMRpro

Would that explain why I often get sciatica and thigh pain on my left side when I'm having a flare-up?

Could be? I can’t lift my left leg when lay flat but can if I bend my knee first. That gives me muscle pain in the buttocks and thigh. It’s nothing like hip pain before the replacement.

Might be worth asking to see a physiotherapist? Or even better paying privately for one, that'll be quicker. Before you decide to go with one ask them what they know about PMR, piriformis and fascial pain - ring a couple

PMRpro
PMRproAmbassador in reply to tangocharlie

Possibly - though finding a doctor to listen is another matter! I am so lucky here - doctors do think laterally, especially my pain specialist.

You sound just like me. Even after that nasty back surgery on 3 disk, along with hardware, and still numbness in my right foot, worse, and better as the day is😎I’m still only moved to 14 mg from the 15 I was after surgery!! Always something to rock the PMR boat, but like we said quality of life😎💕

That sound so similar! I’m sure it’s muscular. I do know the difference especially after my hip replacement.

More to work with for the appointment. Thank you

Some great information on here. I don't think it is anything to do with adrenal insufficiency as that is very different symptoms, eg dizziness, fatigue, weight loss, stomach upset - see my recent post on it everythng about adrenals in one place. Have you recently reduced your steroids? Here is the link to the adrenals post healthunlocked.com/pmrgcauk...

Thanks for the link couldn't find it earlier but I'm no good at searching either???

The Rheumatologist on the phone consult yesterday said the immortal words "I don't think you have PMR". that was because all my blood test come back normal not inflammatory markers. I didn't say at the time"That happens quite doesn't it for about 17% of patients once on steroids" I'm saving it for the face to face in July. Backed up with a print out.

Oh no, we expect better from rheumatologists - symptoms are king, not blood tests. Yes you would expect blood markers to come down if Pred is doing its job right - but that doesn't necessarily mean PMR has gone! If inflammation increases, whether shown the blood markers or in symptoms, when you reduce the steroids, that shows there is something going on that the Pred was helping. Maybe the PMR has gone and it's something else. You're getting a good list of ideas here, excellent question.

What dose are you having problems getting below? Mine was 5, I think it still is

8 at the moment was 5 in Feb

trying to get below 5 has back-fired for me and I've ended up needing more

Terrible hip pain kicks in on occasion for me. Whether it's myofascial pain syndrome or trochanteric bursitis, it wasn't one on my initial PMR symptoms, nor a normal indication of a flare. However, I'm beginning to suspect it can be the sign of an upcoming flare. My first plan of attack when it happens is to rest, use ice, maintain my prednisone dose but take over the counter pain meds, and do a few stretching exercises I found on the internet. Sometimes it works. If other typical signs of a flare for me start popping up and increasing in severity I accept a flare and do what needs to be done.

If you haven't had an MRI of your lumbar spine, you may want to discuss the possibility of having one to determine if the problems may be result of pinching of nerves.

Estellemac
Estellemac in reply to nuigini

I had an MRI about 2 years ago as I have two herniated discs. The doctor who gave ne Duloxcetine for sciatica said there was no impingement at that time. But that was then. I do find painkillers take the edge off though and resting so that's why I think it might not be PMR.

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