Two people diagnosed with PMR, cannot lift their heads.
Have you heard of this in relation to either PMR and/orGCA?
My instinct is telling me that, if they are longterm, it could be muscle weakness, but I have never heard of anyone with this problem.
Have any of you come across it?
By the way, I have looked at the 82 side effects, the web, the current guidelines/diagnostic procedures. :?:
Hi Mrs K!
Why can't they lift their heads? Is it pain or something else?
All the time I was undiagnosed with PMR I had very sore neck muscles and it was difficult to turn my head. Once I was on steroids that improved markedly and I didn't need to use physical therapies to reduce the discomfort. I now notice that that when I have a flare it all appears again although nowhere near so bad. I get mega clicks as I try to turn my head all the way to the right - as if I get stuck on a snag which gives way and releases. I did a lot of Pilates and there were several exercises I had to modify as they involved lifting your head - I could do them a couple of times but no more.
must dash,
EileenH
Hi Mrsk
My experience before being diagnosed with GCA was that I couldn't either lift my head off the pillow or put it in any position where I could relieve the pain and I remember getting up in the night and standing with my head supported against the wall trying to get some relief. Could this have any similarity to the problem being experienced by your contacts or is it simply that something muscular is going on that is preventing them from holding their heads up at all?
Hope you're still doing great on 4mgs.
MrsO
Hi Mrs K...I had a lot of neck stiffness at the start, not so much that I could not lift it, but more inability to move from side to side without severe pain.My legs were a bigger problem as I could not lift them at all and had to get my teenage kids to put on my shoes and socks for me! A major low point for me at the start was lying on my bed one day crying like a baby, because after 20 minutes of trying, I could not get my own knickers on :oops: .Happily I am now able to fully clothe myself unaided, but these are the depressing little bits of the illness that only fellow sufferers will understand. I am just glad that I stumbled onto this site, as it is great to see how others are coping and that people are maintaining a sense of humour! I still haven't risked taking a bath after reading a post from someone who got in for a soak then couln't get out again!!! Best wishes, Pauline, Dublin, Ireland
Hi Pauline,
Your post just made me think: that was me a few months ago! I especially relate to the 'knicker' situation - sitting on the side of the bed, tears rolling down my face, in awful pain, whilst I tried to fling my knickers in the direction of an upturned foot in the hope that they would make contact in an orderly fashion!! None of that now. Down to 7mgs. Feeling really well most of the time and just wanting you to know that there is a very big, shiny light at the end of the tunnel. :D
Keep well,
Lizzie Ellen
Hello and Thank you.
I know know something I did not know before and also what questions to ask.
Thank you once again.
Hallo Mrs. K.
Re the not being able to lift one's head. Like several others I have had the experience of severe neck stiffness and it being very painful to move my head in any direction. T junctions were a nightmare and I did eventualy give up driving briefly. I hated this as I am sure that there is a slippery slope in older ( not old, notice! \"only\" 78 ) age when we have to resist as far as possible the temptation to take the easy way and stop doing things that have been part of our lives.
Surprisingly, this stopped while I was temporarily not taking any steroids and it has not returned. I am presently on 9mgs. But what I was really posting to mention is that many years ago we were involved in a \"shunt\" driving home from school one Friday. (I know it was Friday as my first thought was for the school hamster in the back of the car and I was terrified of fire. ) Totally irrelavent. Sorry. Anyway, next day I could not lift my head from the pillow but it was not injury of any kind and only lasted two days. As far as I remember, there was no pain involved just total inability to lift my head.The doc said it was shock.
The body is a strange mechanism and it is not always easy to account for its symptoms and reactions
Hi
I have managed to get back on this site, keep being told there is someone else with my password, so trying again today.
I can't remember who it was but it was mentioned that you should not take the calcium tablets at the same time as the steriods as they will not work as well. I think this has been happening with me because I don't seem to be improving, I am on 9mg a day. Having come down from 20mg two years ago to 5mg and had to go up again to 10mg. I am still in a lot of pain and can get up in the mornings, it takes me until about 4pm before I am anything like normal. I am never normal.
I wrote on this site a while ago about my painful hands, I have been told to day that I have now got Osteoarthritis in them. :cry:
Regards to all fellow suffers
Spammy
wrote on this site a while ago about my painful hands, I have been told to day that I have now got Osteoarthritis in them.
Regards to all fellow suffers
Spammy
Do your painful hands have swollen knuckles?.
I used to play the piano a bit but had to give up because OA. They were painful for a couple of years but, once the knobs were established, the pain went and I am left with just a bit of stiffness. Now my hands serve well enough for everyday purposes.Don't look very nice, though, and I can hardly remember nail varnish. Hope yours settle soon.
No-one offered any treatment. Another Old age syndrome, I guess.
Actually, making your own bread by hand is quite theraputic and it tastes and smells lovely. BettyE
Hi Betty E
Thanks for your reply about my painful hands.
I am still wondering if it is not just the OA but carpol tunnel as well as I get shooting pains down my middle fingers from time to time expecially in the middle of the night.
Do you also get this?
My knuckles somedays are very swollen, then you can't see any knuckle bones or lumps sticking out. For about 6 months I was walking with crutches or sticks and I wondered it putting my weight on my hands had made them this funny shape, swan neck. :?:
regards
Spammy
Hello again Spammy
Whereas my swollen knuckles of my fingers have been diagnosed some years ago as heberdens nodes and osteoarthritis, they are not sausage-shaped as you have described yours. Therefore, I am a little surprised that we have both been given the same diagnosis of osteoarthritis! :o Was it a rheumatologist or your GP who diagnosed this and did you raise the query with him/her as to whether you could have psoriatic arthritis as you already suffer from psoriasis? Certainly Psoriatic Arthritis can cause sausage-shaped fingers. Maybe if it was the GP you saw yesterday, you could ask to see a rheumatologist for a second opinion. It must have been very painful for your hands using crutches for as long as 6 months and perhaps this aggravated an underlying, dormant condition. It is very frustrating when you have intense pain in your hads as virtually everything is impossible, and I wonder whether there is some sort of therapy available to you at the hospital to relieve the symptoms.
Very best wishes,
MrsO
Betty - I mirror your experience with your fingers and with the diagnosis of osteoarthritis in that once each of the nodes (Heberdens Nodes) established themselves the pain was relieved and just some stiffness remains. Glad you have found some helpful therapy with kneeding your bread - we're lazy here and make it in the Panasonic....still get that gorgeous smell when waking in the morning though - yummy!
MrsO
Halo again, Spammy
No, I don't get shootong pains or any pain in my hands, just the stiffness same as described by Mrs. O.
The swelling is all in the joints, nothing in the flesh.
The strain on your hands from using the crutches sounds as though it could be responsible. I have a friend who had the carpal tunnel op some yyears ago. Very successful. I'll ask her about her previous symtoms. Wouldn't it be a help if we just suffer one thing at a time ( or, better still, none! ) Do hope you get some relief soon. Will post again when I find out about the carpal tunnel symptoms.
PS
Spelling!!!
Sorry. Must do better or learn to read what I type before pressing the send button. BettyE
Hi Mrs O and Betty E
Thanks for your replies
I have not been back to my doctors yet about the xrays as I have an appointment next week. My usual one for the PMR. It was when I rung the doctors to ask if the results were back that I was told I had OA in my hands. Now I come to think about it the receptionist should not have said what it was and I should have waited until I saw my doctor for the results.
I have started taking my calcium later in the day and not with the steriods and I feel much better.
Spammy