new pain and hurting right hip, groin

well, now something else, along with right shoulder unexplained pain, last few days,started in right groin on and off, now moved around top of leg and right hip, i feel like i,m falling apart, instead of improving, i am down to 17.5 mg pred, my rheumy has never confirmed pmr diagnosis that gp did, in oct, and started me on 40 mg pred, with no bloodwork done prior to starting pred, over last 2 months or so, have had some days not so bad, and then some not good, shoulder pain and discomfort subsides most days after several hrs on awakening, the odd morning have woken couple wks ago, and pain didn,t start til a half hr after i was up ? once i told rheumy this, she said, not pmr pain then ? didn,t know what it was caused from, ultrasound and exray of shoulder doesn,t show much, advised see pain mgmt dr, now along with long time back issues, have this hip thing, what is going on, i am so frustrated, i do have some discomfort in left shouder, but not nearly like right, now right hip etc., anyone else go through all this while on this dose of prednisone, dropped from 20 to 17.5 a month ago, and at that time didn,t notice any new pain ?

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  • Hi,

    I was always told I had fibromyalgia and I called it the creeping crud because I never knew where it was going to hurt next.

    Now I have this and I can relate.

    I also have had back surgery and have arthritis and spurs in hips and have had tests galore.

    I also have had hip, groin, thigh pain. I stand up every morning and hope for the best.

    I am on 12.5 mg of prednisone and do feel better but certainly not great. I was diagnosed three weeks ago after being in excruciating pain and demanded answers. Well...I sure got one. I have diabetes and have always been well controlled but now really have to be more careful .

    I had such arm pain and leg pain that my children had to come over to dress me...and worse. Prednisone was such a relief. But my sugar went way up so now I can't eat much.

    They usually do sed rate and other tests before prednisone.

    I'm new to this but that sounds strange to me.

    Good luck.

  • thank you dinal, so you have been diagnosed, with pmr then

  • Yes, it is PMR. My sedimentation was high and also c reactive protein .

    Now I just have to get my sugar down. It seems that no matter how careful I am it is too high.

    Good luck but make no mistake about it this is an ugly one and I had never heard of it before.

  • It could be bursitis, or osteoarthritis (although the scan would have shown this) or it could be a soft tissue problem. As it is one side only it's unlikely to be PMR but of course the high dose of steroids could have been masking other problems.

    If painkillers work on it, again it's unlikely to be PMR. If you are waking with one sided pain, perhaps it is down to the way you sleep. Maybe a new pillow or even a new mattress would help.

    Your medics seem to have thoroughly tested/scanned everything possible (I think I am repeating myself) so a little practical thinking might help.

  • thanks polkadhotcom, but when first diagnosed, had the right shoulder problem, some in left not as bad, and buttocks, and hamstrings painful, and couldn,t raise arms to brush teeth , hair, or dress, get out of bed, with terrible stiffness and pain, so since then, i,ve had these other issues, that is why the confusion in original diagnosis, and at that time,even now, painkillers ie aleve, advil tylenol, do not lessen pain, so at a loss, and so are dr,s apparently, haven,t had a scan on shoulder or hip, had ultrasound, and exray on shoulder, not on hip, going to see my gp tuesday, will see what he has to say again,

  • Stress will certainly make things worse. I have had to give up the vast majority of my work for that very reason. It was a very difficult decision, but it was the only thing I had control over that I could do to try and help myself. I have had my elderly parents with dementia to deal with too, but had no choice about this, especially as my sister had played no part in helping out! They now have a live in carer which has hugely taken a load off. now I am going to prioritise looking after myself and maybe then the PMR will subside. By the way, the hip injection seems to have worked, the pain is so much better!

  • Hi arvine - can only go on one's own experience, but I too started with noticeable pain in the right shoulder (I'm right-handed) and this didn't help my GP get off to the correct diagnosis! Only when there was equal pain in both shoulders - so that I couldn't raise my arms, manage in the shower, get dressed and eventually, even move or get out of bed! - did I realise I had to get a proper diagnosis via a (private) rheumatologist. Pain-killers had no effect whatsoever. A diagnosis of PMR - whilst I didn't realise the serious consequences at the time - actually came as a huge relief. Hope you get to the bottom of this quickly,

    Best Wishes

  • I am constantly surprised by different pains in different places ! even after 5 years! It is a very frustrating thing to have, but hip, thigh and groin pain I have had throughout. Sadly it has now also turned into OA Hip and in both knees which doesn't help ! I can't always tell what pain is what and the x-rays don't always reflect the amount of pain anyone feels. I have just had a guided injection into my hip joint and am hoping it will work as I have hardly been mobile for the last 6 months because of the hip. Meanwhile, I can feel the PMR in my shoulders whenever something is a bit out of the ordinary. I am also taking Mycophenelate which, dare I say it, might be helping me to reduce my steroids. Early days!

  • Oh yes, I have had hip injections.

    As far as I can tell, they do nothing.

    They always want to start there.

    Are they a big money maker or am I just jaded.

    Before deciding to have spinal surgery ten yrs ago I can't count the number of injections I had always hoping for some relief.

    I wonder if some people do get help from them.

  • I do - I developed hip bursitis as part of PMR. Originally it took about 6 months for oral pred to calm it down. Now when it flares my doctor is happy enough to use a steroid injection and it works.

    It only helps when done in the right place and IF it is bursitis. There are other causes of hip pain though. Myofascial pain syndrome and piriformis syndrome will also lead to referred pain into the hip and won't always respond to a steroid injection.

    When they are used here in Europe it can't be enthusiasm because they don't make money for the doctor in a state-run system.

  • thanks suzy , well actually, i have a lot of stress going on in my life, as i,m sure most of us do, mine is family related, and just like physical activity, when i overdo, the issues i am involved in, family issues, i am sure they play a big part in my symptons, because i find i hurt more when some issues i am helping family deal with , really stress me out,

  • Stress will certainly make things worse. I have had to give up the vast majority of my work for that very reason. It was a very difficult decision, but it was the only thing I had control over that I could do to try and help myself. I have had my elderly parents with dementia to deal with too, but had no choice about this, especially as my sister had played no part in helping out! They now have a live in carer which has hugely taken a load off. now I am going to prioritise looking after myself and maybe then the PMR will subside. By the way, the hip injection seems to have worked, the pain is so much better!

  • I'm so glad the injections have helped some of you. I would have loved that.

    I didn't mean to caste aspersions on all who do injections.

    Now I just have to figure out how to keep my sugar below 200 or 250 with prednisone which has helped me so much.

    Thanks for all the input

  • Cutting the carbs that cause the basic problem does help. The AMA actually now recommends the low carb diet as a way of managing diabetes.

  • Hi Suzy - you're right, this is like trying to hit a moving target with a catapult! Since starting Pred a year ago, I've variously suffered from painful/weak wrists (couldn't even lift a filled kettle!), dodgy knees and, lately really painful knuckle-joints......! And, all the while, the shoulder-pain lurks just enough to remind you of the terrifying start of all this !

    Best Wishes - we'll get there in the end, no doubt!

  • Hi,

    I had weak and painful wrists and hands before prednisone and it has helped that but I'm just weak and can't really do much such as grocery shopping, etc.

    I feel like my legs will give out. Can't lift heavy stuff either. I now get small bottles of soap, milk, etc.

    I even wash small loads.

    I walked into groc store feeling proud of trying and some lady asked if I needed her motorized cart.

    Ouch.

    Guess it's obvious something isn't right.

    I just make short trips and thank goodness for daughters.

    Good luck.

    This sucks !!!

  • I was diagnosed with PMR 11 years ago . Was prednisone free for six years . In the past 5 months I had to care for my mother when she was diagnosed terminal until her passing. After that I suffered a loss of income and working with special needs children had a very stressful semester. 4 weeks ago I started with pain in neck, shoulders,jaw, very bad pain in hips and groin. The pain was all too familiar. I went to my new GP since I had moved to another state since diagnosis. She said my blood markers were normal and would not treat me for PMR. I was referred to new rheumatologist and he read my old records I was finally able to get from old doctor after 3 years of asking !!! He showed me the records and I was astounded!! In the record it turns out my doctor stated at one point I was diagnosed with PMR another he stated it was fibromyalgia!! He never mentioned that to me!!! Old doctor did not include records from old rheumatologist! The new rheumatologist is starting from square one he doesn't think it is PMR after all !

    He is now treating me for fibromyalgia. I was started on 300 mg of gabapentin over a week ago! Although not totally gone the pain has subsided greatly! I am feeling much better but floored that I was misdiagnosed so many years ago!

    I share my story for those prednisone might be working and maybe a new set of eyes can find something else that can work?

    Godspeed to you all and may you all find a way to get rid of the pain❤️❤️

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