Does anyone else get pmr pain in the lower abdomen/pubic area or the breastbone? When I first became ill the pain was worse in my arms,neck, inside thigh area and hips. It seems to have lessened in these areas and migrated to my ‘lady bits’ and round to my lower back. Am I alone in this?
Pain in strange places : Does anyone else get pmr... - PMRGCAuk
Pain in strange places
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Suet3942
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I get a dull ache above the pubic bone if I have a UTI. That would also account for some low back pain.
As PMRPro says, or even some arthritis going on in the pelvic/ hip area. The pain does seem to migrate. My knees are really bad and I don’t think it is PMR. This needs to be investigated by doctors though.
Yes would agree Jane. It’s so painful to walk. Had it for last couple of years.
• in reply toSheffieldJane
Yes Missy, it does!! 🤨
SheffieldJane• in reply to
My X Rays came back. I have Osteoarthritis in both knees. Treatment “weight management which will be hard for you on steroids” ( never misses an opportunity) and physio and pain killers. So I am not at your stage yet, so God only knows what your pain is like. I cry out on stairs.
• in reply toSheffieldJane
Oh wow!!!! Do you have a stationary bike? It will help... especially if you can't do weight bearing. I bought one used (like new) for £50. Start working on them now before they get worse and you need surgery.. I walked around for two years, trying to ignore pain, because GP said it was a torn meniscus and that NHS wouldn't do anything about it, because of my "age." Wanker.
SheffieldJane• in reply to
That is a very rude word in the UK, 😂😂😂😂😂
Why does nothing I get involve taking it easy and gaining a bit of weight?
• in reply toSheffieldJane
Okay that was funny... actually both bits were funny!
SheffieldJane• in reply to
Glad it didn’t give you “ the hump”. 😄
• in reply toSheffieldJane
🤣 I have NO IDEA what that means!!!!
Telian• in reply to
I love you Mel! x
• in reply toTelian
Just as well, T.... because I love you right back! ❤️
PS - Say Hello to your sister for me!
Telian• in reply to
You see being surrounded by men - 3 sons, and hubby of course, I'm used to the 'vocabulary of the world' and it made me smile broadly as you had no inhibitions about saying it..... I might look 'Miss Prim' but underneath..... I will say hello to my dear sister who was 69 yesterday, she won't mind me telling the world, and is having her family round up today, as they were all working yesterday and she was snowed in!! We've escaped it thankfully. Have a good weekend. xxxx
• in reply toTelian
HA! I grew up idolising my two older brothers and their cute friends... that is why I have a mouth like a longshoremen!!! Oh happy happy birthday to your sister!!!! Please give her my best!!!!
Telian• in reply to
Me too...I most certainly will give her birthday wishes from you! Have a good weekend. xxx
Oh Jane. Sorry to hear you’re in so much pain. I feel for you..🌷🌷
Thank you Sue. Compared to you and others I get off lightly.
Don’t think so Jane. We’re all in pain one way or another! 🌸
My experience was very similar to yours before I was diagnosed, both where the pain started and where it moved to. However within a couple of hours of taking pred, my pain went and hasn't returned. I understand that I'm lucky in that I lost 100% of PMR pain and that for many others pain is only diminished.
What dose of pred do you take Marijo?
I started on 60 mg per day 18 months ago, current dosage is 10 mg per day. I see my rheumy on 27th February so I suppose that's the point when I start reducing to single figures.
Darling Suet that sounds painful and distressing. It could be so many things or it could be something that you never find out what causes it. I urge you to go and try to find out so that you at least get peace of mind xxxxxxxx
Hello Linda. I have had 2 scans. Nothing discovered, just have to put up with it. Xx
I’ve had tight ligaments in relation to the pubic bone and right side of pelvis. Flippin painful and feels like the lady bits. An osteopath sorted it out. I now do exercises to stop it tightening up again because I can feel it creeping back since being on Pred.
My PMRpain started with shoulders, upper arms and lower back. When I had a slight flare trying to go from 7mg to 6.5 the pain I got was pelvic. On going up to 7mg again it all went away.
That was the second time I tried to go below 7mg, and I will try again after my knee replacement next month.
So my experience has been similar to yours...started in arms and lower back, and then migrated during a flare to an area (ladybits!) which had not been involved before. Any chance of upping the pred a bit to see if it helps?
Good luck!
Good luck with the knee replacement Mary. I’ll be interested to hear how it goes. I still have to lose weight to get mine done.
Morning Suet3942. All these strange pains are horrible aren’t they. My PMR started in the back of the thighs and then a couple of weeks later went to my shoulders. Then recently I had my first flare and it got me in my neck, back of head, breast bone, ribs and pecs.really horrible. My neck glands swelled up (felt a bit like mumps), so I was given some antibiotics and then after a week I increased my pred by 1.5mgs and after a few days it all settled down. If you’re uncomfortable above the pubic bone and maybe peeing more frequently as people have already said, I would get your urine checked out at as well. Hope you feel better soon as can make you feel very low. Big hug. Xx
Hi Suet I too suffered groin pain very uncomfortable it was one of my pain areas from the outset taking high dose of pred cured it got down to 6.5mg and it returned I am currently on 9.75mg can't seem to get below. I found pilates done gently really helped good luck
I've had this recently too! Not sure whether we're talking the same pain--mine is pelvic girdle pain right above my groins. Miserable. Seems to affect my bladder too. I'm tapering to 5 mg pred; have had pmr since 2016. Yesterday morning I upped the pred to 7 and poof! I feel like a new woman! My plan is to stay at 7 mg, for 3 days to calm things down and then reduce by 1/2 mg. each day until I get back to where I was and then continue the taper. Drat disease!
Mine goes at around 10mg. Doesn’t affect my bladder though. Sounds much the same though. Tops of thighs as well. Yes..miserable. Got the ‘poly walk’.
What I hate is that I just can’t stand. Hardly at all. Especially in the mornings, regardless what level of pred I’m on. I see people standing watching, say a golf game on tv and I’m amazed. And to think I used to do that!
Is it pain or weakness Twopies? X
Both. I can’t do dishes in the mornings at all; I can in the afternoons. In fact I save most of my housework and errands and outings until then. It’s a rule in our household—I don’t do nothing till the afternoon. (Split dose didn’t help, higher dose pred didn’t help, it’s just the nature of the beast for me).
Hmmm? I thought I had experienced pain everywhere.. but you got me! Nope, my pubic area and breastbone have been good so far. 🤞🏼 . Sorry you have to deal with this... bummer. Hope it goes away SOON!
Suet3942• in reply to
Thanks Melissa, I am ok till I try a taper below 9mgs
Will mention to consultant in March. Xx
I don't know if this might be relevant, but have you had a DXA scan to check your bone density?
I did have one about 2 years ago. I was borderline. Will say this pain goes if higher than 9 milligrams of pred. Comes back as soon as I taper to 8.5
More likely PMR then, than cracked bones, thank goodness.
This maybe? webmd.com/pain-management/c...
yes i too got very bad pain around my bust.
Really? Not alone then. 🌸
I had very tender breasts last year and had to change all my bras for bralets. I couldn’t bear any thing tight or rigid, or underwired. This seems to have resolved with the few accommodations I made. Groin pain is a definite sign, for me, that I am in danger of a flare. This was my first point of pain with PMR, accompanied by nausea.
I have had pains in my collar bones and breastbone, which have gone away now I've had to up my pred to 10mg! So far, I've escaped any pains 'down below'!
Hi Suet3942
I used to get pain in lower abdomen very similar to period pain which was all part of PMR, now that I am better controlled it's gone!
Mine disappears as well at around 10mgs. When I reduce, back it comes.
Do you find that Primary Care doctors go off on a tangent when you mention these pains and test for other ailments, rather than attributing anything to PMR? Mine do.
Yes Jane. or completely ignore what I’ve said!
The invisibility that we experience in a patriarchal world. I couldn’t bat them off when I was young.
I do have a female GP who is quite good but there are women who are worse than men...
Me neither.
I get pain in my bladder and nearby areas, too. It starts up when I get down to about 5 mg and goes away when I add back more prednisone. At first I didn’t think it could be PMR related and went through tons of miserable tests and scans. Nothing found there, but when I finally went back to 7 mg (from 2 mg...and a big flare), all resolved. Dreadful pain, makes you not want to even try to reduce!
Had all the usual pains but not the 'lady bits' I'm proud to admit - considering seem to have everything else and more.... I've had lots of UTIs but no pain as you describe. Bit of a mystery and not very nice for you. What's the plan? Surely you can't keep putting up with it. Will Physio help do you think? Desperate measures... x
I don't for one minute think Physio is the answer but they can be a good link, if they're good at their job that is, in getting you to the right place. That happened to me recently and hopefully am getting there but how long is a piece of string. All the best Sue. x
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