My shoulders, hips, bottom and biceps are still very tender when pressed. Does anyone else find this, my Rheumy is under the impression muscles should not be tender. The Prednisolone does help wonderfully with pain and stiffness when I am on 10mgs, but tenderness is still there. Been on Pred since last Dec, Rheumy keen for me to be on 8mgs or less, even though day to day activities are a struggle on 8mgs due to stiffness and pain. She tells me 9 months on I should now be on a lower dose, yet when I look at comments on the forum, lots are on higher doses after several years.
Still waiting to see new Rheumy end of Nov re GCA type symptoms, but due to see the other one this Wednesday. Fed up trying to jump through hoops just to please my current a Rheumatologist . Runrig
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Runrig01
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My muscles are often tender, I recently had tender muscles down each side of my body which made wearing a bra absolute agony, my Rheumy said this was unusual but still seemed to think it was PMR related. My legs and ankles also get tender, so much so that if anyone touches them I'm liable to shout out. I'm coming to the conclusion that there are no textbook symptoms for PMR and GCA and that some Rheumys should be more open minded and listen to their patients. I'm fortunate that mine is one of the more open minded ones.
Good morning,Agree with both posts!! At times been taking my bra off for years.So adept at it that i can do it in public without anybody noticing.!Have a reasonable weekend.God bless.Soo
Glad I'm not the only one , for the past few weeks have felt like I have been bear hugged, bra comes off and pjs on at 7 pm!! What a rubbish disorder this is!
I get so painful that some days I don't get dressed at all,having a bad bout now,had GP appointment last Monday today is Friday and I haven't got dressed from Monday until today and today is only because I have to go for a blood test,as soon as appointment is done it will home and back into pj's.Was sat with my legs up last night hubby had been outside and when he came in he put his cold hand on my leg,I nearly went through the ceiling and that was not from the cold touch it was from the pain.
Hi same as you. I have good days and bad days. The good days are when the pains lessen. The bad days are unable to hardly move and retire to bed. It seems after a good day, I do more things around the house, but I seem to pay for it the next day
Hello Dovelady I agree with you entirely,and all you sufferers out there that are hurting. I don't know if the weather change is making a difference this week but muscles hurt all over the body and the pain level is uncontrollable. There must be something that can take this hurt away without having to feel drugged up all the time. And to get some sort of energy back would be nice.. Wishing you all a pain-free weekend. trish29
What is apparent with the posts on this forum is that individuals are not being treated effectively. I have had PMR for six years and I am fortunate enough to have a very supportive GP who recognises that the patient is best placed to say whether the treatment is working i.e., controlling the pain and reducing the inflammation associated with PMR.
The lowest dose I have managed is 3mgm Prednisolone. Then I had a fall in July and PMR flare up followed; back up to 10mgm and now going down. My current dose is 7mgm.
The point I'm making here is I am adjusting the dose according to the severity or the progress of my condition.
Reduction has to be managed in graduated steps to avoid physiological problems.
If there are support groups in your localities find out which health care professionals are practising the best approach to the treatment and management of PMR.
"my Rheumy is under the impression muscles should not be tender."!!! Runrig, your rheumy needs to experience PMR - not that I wish that on anyone, of course. I had such tender points on my shoulders in particular, for a period around my ribs and another period down the front of my shins, leading me to wonder whether my PMR was morphing into Fibromyalgia which, of course, does produce very tender points under pressure. However, it was all part and parcel of PMR. Steroid-induced weight gain, of course, doesn't help when it comes to being comfortable in our usual bras - perhaps a slightly larger size may help for a while? Like Soojay, my bra was more often off than on!
Stay as positive as you can folks because better days are around the corner for all of you - I'm in touch with many people who have recovered.
Hi Celtic and Runrig, under bra line /ribs is tender ( can't wait to get bra off ) and biceps muscles are so painful if touched and seem to be in a hard spasm. Managed to get down to 7mg Pred from 15 mg since March. Had symptoms for a year now but was reluctant to take the steroids.. Not sure I can reduce much more if you're supposed to reach a manageable level painwise. It's no pleasure along with the sweating and tiredness.
Hi all just had to reply to all of you, I think, though I daren't say it too loud that after nearly three years of PMR I am feeling better. I haven't had any symptoms for about six months other than dizzy heads which have now gone. I am still on preds but reducing very slowly. I know exactly what you mean about rheumys and GPs insisting on them being reduced I have took no notice and gone my own sweet way and hopefully I am recovered fingers crossed.!!! I know what you mean about sore muscles I have been there as well. Like Celtic says stay positive better days are around the corner Wendy
Hi to all of you, me too fed up have had all the symptoms you all describe and boy are they bad,but the good days keep us going,the preds weaken mussels as well as bones they also so fen our vains and that is why we should be extra careful with every thing we do, on a lighter note I am down to 15mg,s of preds per day now this girls and boys is a mini miracle have not been down this low for 15 months, celtic is right better days are round the corner,good luck and than god for thjis forum,as the docs no nothing and some of the Rheumys are not much better.ritter.
Hi, I have problems with lower back, bottom and legs. I am now on 10mg of Pren. Consultant wants to keep stable on 10mg per day. Prem has caused me to also have breathing problems. I am attempting to reduce under the plan posted here. Dropping from 10mg for 6 days and then 1 day@ 9mg, decreasing by 1mg per week. Next week will be 5 days @10, and two days on 9, and so on. If pain increase, I will go back up to 10 again. I will be seeing Remy 21st Oct, and see what happens. I have sweats and terrible sleep pattern. I would like to hear from someone on steroids, that has managed to reduce and begin the recovery.
Hi everyone! I too have pain on touch in both shoulders,arms, both hips & legs (together with muscle weakness in those areas). I was down to 13mg Pred but started having regular headaches, a jaw cramp instance and the tender body parts. GP has put me back to 15mg for 2 months--then try to lower by 1mg every 2-4 weeks as long as I report any further relapses. Still have lower back pain (since June); night sweats ( since diagnosis in April). Don't have the bra problem though! (could be because I'm male although my wife made reference to moobs????)
I was initially on 50mg Pred reduced to 45 @ 4 weeks; 40 @ 7; 35 @ 10; 30 @ 12; 25 @ 14; 20 @ 16; 19 @ 18; 18 @ 19; 17@ 20; 16 @ 21 weeks; 15 @ 22; 14mg@ 23; 13 @ 24--------then back to 15 as last stable point.
Replying to several of the latest messages, I have had PMR & GCA for 2yrs this month. Several flare-ups this summer when reducing steroids, on 10 mg again & 15 mg Methotrexate. The PMR seems to be controlled but not GCA; that is a major problem as it affects eyes badly, among other things!
Muscles & tendons are definitely affected by conditions & steroids. A yr last June the biceps tendon in my right arm completely ruptured when reaching up to open a cupboard (nothing very energetic): that is beyond repair & there are now 2 tears in the rotor cuff. It has been agony for over a yr with very limited movement in that arm & at last got an appt to see a shoulder specialist in Nov! In July I had to go to A&E for help as I couldn't move that arm at all & the pain was just too much, very good help & they contacted my GP as well. While waiting for the appt I've been having private physiotherapy which has helped enormously.
Regarding reducing steroids do self-help there as the blood tests do not necessarily reflect your state of health; go on how you feel & what symptoms are present. Yes, I sleep most of the day after doing a few jobs! I really miss being active but I need to pace myself. Roll on better days! Good luck to all fellow sufferers.
Thought it was just me, after 20 years of thinking I'm mad it's definitely made me feel a hell of a lot better. My hubby always makes a joke by saying 'it's your finger that's the problem'. I only have to touch my hips, buttocks, shoulders, upper arms slightly and I go through the roof. Next day there's usually a bruise were I have pressed. I was diagnosed with Poly two years ago and the highest steroid I have been on is 20mg, now tapered down to 5mg and feeling good. But even on 20mg I still never got rid of the tenderness in those areas, no doctors, consultants have ever given me an answer I just live with it.
After some years of painful muscles and tender spots, I was diagnosed 2 years ago with Fibromyalgia. With treatment it is bearable but I have found that it flares in the same way as PMR. Am dreading cold weather as it almost always triggers a flare. It is totally unresponsive to steroids, so it needs separate treatment but there are several options.
Thanks polkadotcom, I was tested about a year ago for tender points for fibromyalgia. The tenderness I have is over the shoulder and hip muscles and bottom where I get my PMR. They are constantly sore to pressure, even sitting in a hard chair is uncomfortable on my Gluteal muscles. It seems from reading responses that lots of others have this tenderness, so happier that this is to be expected.
How confusing it all is...is it the PMR, the steroids, or possibly a new diagnosis of Fibromyalgia? Or all of the above??? I have just developed a lot of tenderness and even pain in my ribcage all the way around, after having PMR for 18 months and being on Pred. for 10 months and having great trouble reducing it ( currently back up to 15 mgs). Having read these posts I am feeling more patient in terms of not necessarily knowing quite yet what the cause is..I will just hope it goes away again!
One of my best presents to myself on Valentine day was my cat. I got a senior at 6 yrs and she is perfect Except she walks up my body to see me. I didn't know I had so many hot spots of pain from my calfs up to my chest. She always seems to stop at the sorest spot to see if I am awake. She has learned not to wake me up too early.
Then at pedicure the gal started to massage my calfs and OUCH!
But this one tops them both. Out on a second date and he hugs me good-bye and I say Oooooh! Guess will put that idea on hold if we ever had sex he might think I am having a great time with oohs and awssss....
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Forgot to take prednisolone this morning - all symptoms returned this evening - PMR and GCA
