Could I still have Pmr with low esr results?
Posted , 8 users are following.
I have recently had blood tests again and have a low esr. I have symptoms of pmr and discussed these with my gp. I begged her for prednisolone and she reluctantly agreed but only one week. I felt great! I was walking normally, getting out of bed for the whole day where I was bed bound a lot before, just felt so wonderful having so little pain in my hips and shoulders. My blood tests came back normal and she said she cant give me any more and is referring me to rheumatology again. The pain has come back, my hips are crippling me my shoulders are so so painful again and nothing else has worked, just the prednisolone. My orthopaedic specialist may give me one more injection in ten days, vpbut that will be the third and he said 3 is the max so I should have relief for 3 weeks, if previous injections are to go by but after that........i dont know how I can cope any more with this dreadful pain!
1 like, 42 replies
Sheilamac_Fife Xxxxxtttttttttt
Posted
Definitely change your GP!
I had a similar problem but in my case the Rheumatologist said that PMR was the most likely diagnosis even with normal or only slightly raised inflammatory markers, and started me on Prednisolone. Like you, within a day or two I could get out of bed and over the following 4 weeks the dreadful, debilitating pain has subsided.
I feel for you!
Whilst I waited for the Rheumatology appointment, I started physio and the exercises definitely helped. I also have a Tens machine which made my life more bearable. Lloyds do a wonderful portable one that has heat and vibration. It is marvellous and not expensive! I didn't find a painkiller that properly removed the pain! I would recommend both of these actions. I felt that I had to keep moving if I possibly could. Oh and shoulder massage also helped!
When I went back for my follow up visit to Rheumatologist the bloods were back from the previous visit and the inflammatory markers were raised, so between that and the result of the steroids, I had my diagnosis!
Are your painful muscles bilateral? That seemed to be diagnostic too. And not random around your body as they seem to be in Fibromyalgia?
Please don't let them leave you in such pain!
AND as someone else on this thread has said, not everyone gets the side effects from the steroids. You will be given calcium supplement at the least and if you walk plenty you will help to maintain the bone density.
Rheumatologist told me that it will most likely burn out in 2 years and that the steroids are to make life more 'normal' while we wait... (60% of patients) I certainly cannot imagine living for 2 years that level of pain and disability!
I like the idea someone here has of documenting the level of your pain, where it is and what your level of disability is on a day to day basis. Should concentrate the GP's mind!
Please get back to this site and let us know how you are doing.
Sheila
EileenH Sheilamac_Fife
Posted
Eileen
Sheilamac_Fife EileenH
Posted
I have seen lots of people suffering much longer, but I am doing the optimistic thing...
Sheila
EileenH Sheilamac_Fife
Posted
It isn't your fault and it probably is PMR (especially if you had that wonderful miraculous effect with pred at the start). But it maybe hasn't been managed well - and anyway, PMR has a mind of its own. It comes when it wants and it goes when it wants.
We have so many upset people who arrive at one or other of the forums for that reason. They thought it would all be over in a relatively short time but it isn't - and often they plunge into a deep depression that we have to lighten. It is very difficult to do from our "virtual" position.
That's the only reason I mentioned it.
Fingers crossed for 2 years...
Sheilamac_Fife EileenH
Posted
I am on very early stages of treatment, just about to start reducing the steroids... My fingers are well crossed...
I have had the illness since last November, so I will count my 2 years from then... Don't worry though I will not be surprised to find that there are hiccoughs as I go along.
Right now, I am working on preventing as best I can, the complications of the steroids.
Thank you for your interest. I have not had anyone who understands, to talk to about this condition. I am so happy to see you are reaching the end of your PMR journey.
Sheila
EileenH Sheilamac_Fife
Posted
That means don't rush at it and do it in very very small steps. There is a reduction scheme of mine around on here somewhere. If you can't find it I'll post it for you. Tried and tested - and successful.
Xxxxxtttttttttt Sheilamac_Fife
Posted