It has been 12 weeks since I was diagnosed with PMR. Early in my journey I found this group and learned so much. It has given me somewhere to turn to when I wasn't sure what was happening, when I was frightened and at a loss as to what to do. There have been many posts that have helped but I also got some reassurance from people's stories. So today I thought I would tell mine with the hope it will help someone.
It all started on the 31st January 2018 when I woke with biceps pain, hip pain and hamstring pain. I thought I had done too much yoga but it got worse! By February 12th I could hardly walk, get in and out of the car, move in bed. My husband insisted i made a GP appointment (I'm not one for going to the doctor). 19th February I saw the GP, in the meantime I had worsened including headache, temporal, mostly on right, neck pain like I had been hit on the back of the head with a stick, blurred vision. My GP was great, sent me to A&E, blood samples in hand. A&E weren't so good. My bloodwork was normal "very normal" and I "looked well" and was "articulate"! They would refer me to rheumatology (still waiting). Luckily, I have asthma and some prednisolone on hand in case I have problems. I took 20mg.
The next day I made an appointment for a private consultation with a rheumatologist, an appointment to have my eyes tested, and spoke to my GP who agreed I should go on 20mg prednisolone, see him in a week. I quoted the reports suggested in your posts and have since given him copies. But Dr Gulati has been exemplary in his care. I saw the optician 5 days later, eyes good but dry, hycosan original advised. I saw the rheumatologist after 12 days, he stated definitely PMR but did not think GCA. Back to my GP to support me.
After 6 weeks I returned to work gradually. I am self employed and needed to return to work for many reasons, not just financial. Currently I am still part time 3 days per week but as my husband says "working is part of your therapy". Last week I started my half day voluntary work as a receptionist (not too physically demanding). I am maintaining this 3 days work, 1/2 day voluntary indefinitely. Tomorrow I am going to practice a 10 minute yoga routine I think. I'll see how I feel in the morning.
I am now on 12.5 mg following Professor Dasgupta's 84 week tapering plan. And yesterday I think was the first day I felt the PMR was going. A definite change. Still got minor aches in the usual places I.e biceps, hips, hamstrings a 2/10. It's been interesting and I've learned a lot (another post I think as I don't want to ramble too much).
My main point from this is from thinking I would never get my life back 12 weeks and 3 days from diagnosis I feel very optimistic. By no means am I back to what I was. Part of me realises I will never be back to that person. Perhaps a good thing? I could meet myself coming back. All is well. Amor fati as the stoic would say. Love your fate. Love your life.
Love Lorraine x
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Ljm12345
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Great that you are doing so well. A word to the wise - reasonable as any tapering plan may seem, your symptoms must always trump the schedule. It concerns me that you are tapering when you still feel "minor aches in the usual places". You may need to slow down a little bit as it's still relatively early days in the journey. Best to take a little extra time early on, make sure the inflammation is as under control as it's going to get, and proceed with some caution. As you've no doubt noted from reading this forum there are several ways we can cause ourselves to flare. One is by sticking too closely to a tapering regimen even when our body says, wait a minute, this is too fast. Another way is to feel terrific and believe that we are ready for another taper, when in fact we've really just reached the lowest dose which will, for the time being, control the symptoms.
it's great that you have a part time occupation. It's always good to be able to get out and about and also feel that one is making a contribution to the greater good. Well done!
Thank you. I've decided to stay at 12.5mg for next 4 weeks at least. This seems to be working for me. From what I have read some people never are totally pain free? I'm happy if my pain is at a 1 or 2 out of 10. Minor with minimal impact on my functioning. Still learning about this as you can imagine.
All sounds good, but don’t try and run before you can walk. You do need to get on with life, and work if that’s good for you, but your PMR is NOT gone!
All that gone, or at least controlled, is the resultant inflammation caused by the underlying PMR. The substances that cause that inflammation are shed every morning - by everybody, it’s just when your immune system is compromised by something like PMR they are not controlled by your own body, that’s what the Pred is doing.
So do too much, or not take enough Pred and the problem re-awakens.
PMR comes of its own accord, stays around as long as it likes, and then goes when IT’S ready!
Not quite feeling like me again but more like me than i have done for last 4 months. I am sorry you are having a harder time. I enjoy your rants. I have tended to have pity parties all to myself. For some of us maybe it can be easier. Fingers crossed. Keep up the "f####g rants" and I'll keep trying. Thank you
Thank you for liking my rants... that's what keeps me going, other people relating to what I'm feeing and writing about. Makes you realise you're not alone!
I promise, I'll keep up "f####g rants" and YOU keep trying!
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