How painful can PMR get ?

[TedTheMaineCoon]

Hi

I’ve recently been tapered off steroids . As I was coming off them , the pain gradually returned . I haven’t had any steroids for 2 weeks & im in agony ! Shoulders , arms, hips , legs , knees & feet . I can’t lift my arms very high to brush hair .

my Gp diagnosed PMR in April, rheumatologist doubts it is, as I had pain just on one side last year .

I spoke to a different gp today as in a lot of pain. He said it is PMR by the sounds. He has asked me to go for blood tests & if inflammation levels high , he’ll put me back on prednisolone.

Rheumatologist is phoning me In 2 weeks , and she said she might investigate further. But I feel so unwell ! Is this normal with PMR ?

[PMRpro Ambassador]

It is when it is totally unmanaged by pred - and obviously hasn't been for a while. Doctors often underestimate how disabled and ill we become. Stick with your GP!

[piglette]

I was in excruciating pain before I was diagnosed. I would lie in bed without moving as it was so painful. I could hardly lift a spoon to my mouth. My GP said ‘don’t worry it is nothing serious’!

[TedTheMaineCoon in reply to piglette]

Nothing serious !!!! Crumbs , it’s torment !

[piglette in reply to TedTheMaineCoon]

I thought if this is nothing serious I would hate to come across anything that is serious. I think my problem is I always do the stiff upper lip bit and don’t make enough fuss. I have discovered you have got to lie on the ground screaming and writhing in pain for doctors to think you might have anything wrong with you. .

[TedTheMaineCoon in reply to piglette]

So true ! I’m the same , don’t say anything and carry on ! But this is awful & I think I’ll need to make a scene to be heard !

[piglette in reply to TedTheMaineCoon]

Go for it. Practise screaming beforehand.

[123-go]

I, too, was in increasing pain until I was diagnosed four months from first symptoms and prednisolone. After a number of blood tests requested by my GP and no answers or suggestion of what my symptoms signified that I told her I couldn’t go on much longer. She arranged for me to see a rheumatologist pretty quickly.

The rheumatologist ‘might investigate further…’! How very generous!

[Loyd]

Sounds totally like PMR to me. 10 days on 20/15 mg pred will confirm I am sure. Also I hope your doctor knows low inflammation results in blood test does not necessarily rule out PMR. Hope it gets sorted soon.

[TedTheMaineCoon in reply to Loyd]

Thank you so much for the reply 👍🏼

[Alebeau]

PMR caused me unbearable pain at the beginning, before I knew what it was. I could not even sleep due to pains throughout my body. Also, I was walking so slow due to pain.

Prednisone was a miracle that gave and continues to give me my life back 5 years later.

[PMR_sufferer1]

It sounds like PMR symptoms at first glance but if you had non bi-lateral pain that is unusual as thats not a PMR symptom. So it does needs further investigation which i think is what your doctor is saying.Good luck !

[Bramble2000]

For me, my PMR is so painful that I’m housebound and need carers to help me shower and dress every day. That said, I can’t tolerate the steroids. X

[TedTheMaineCoon in reply to Bramble2000]

Thanks for reply ! I was thinking only yesterday, I need carers to help me shower & dress . Also someone to do chores around the flat ! Walking has also become incredibly slow !

[Bramble2000 in reply to TedTheMaineCoon]

Walking is a tricky one. I was given a 4 wheel Walker but for me it’s pretty pointless because it kills my shoulders. So I’m stuck at home.

[TedTheMaineCoon in reply to Bramble2000]

Aww that’s pretty rotten . Yes I need to sit down after walking for just a few mins ! I’ve got a car , thinking of giving up driving . As no joy in it & don’t use it much . Might get a power wheelchair.

[Bramble2000 in reply to TedTheMaineCoon]

Power wheelchair is probably the answer, however, we need to be careful because if we become reliant on it, we’ll be using even less of our muscles and mine have deteriorated so much already.

[TedTheMaineCoon in reply to Bramble2000]

That’s true ! My muscles at top of thighs & arms have deteriorated too ! And I’ve noticed my calf muscles are going the same way !

[Body_bonkers]

Sounds normal to me aside the bilateral anomaly

[annie_marie]

Hi. Just to add, after being almost trapped in my home because of too much pain, I got myself a folding powered wheelchair and had an electric hoist fitted to my car in the hope that I could get some independence back. Best money I have ever spent on myself.It hasn't taken away any pain and it hasn't helped me move any, but psychologically it has greatly improved my quality of life. Even on the days I can't get out of bed because of pain, just to know its there helps.

Hope you get some respite from this wretched illness.

[TedTheMaineCoon in reply to annie_marie]

Awww bless your heart ! So glad you’ve got some independence! You feel trapped & imprisoned in this rotten illness ! But it does help mentally and your well being to be able to get out ! I’m seriously thinking of getting a powered chair. Thank you for your reply ! All the best .