Hi, i have unexplained neck, shoulder, arm and leg pain, started gradually 3 months ago and is slowly getting worse.
two differing opinions from doctors - one out of hours said pmr straightaway and started me on prednisone 15mg daily. my own doctor doesnt think its that but doesnt have a definitive opinion yet.
been on pred for 5 days now and cant sleep. the pain has 75% gone from mid morning to about 4/5am. i take the tablets around 730am with breakfast.
they've given me more energy but only getting about 2/3 hours broken sleep a night.
is this normal please? and as the tablets get fully into my system will the sleep improve?
im awaiting a chest X-ray, doctor said there are other things it could be chest related that can cause aches and pains, yet out of hours doctor said my chest was clear.
fed up with it all, I just want to know what Ive got so I can get to grips with it and cope with it.
It may be helpful to you to set an alarm and take your tablets at around 2am, with Greek style yoghurt. This may head off the surge in Cytokines ( inflammatory substance) that occurs at around 4 am and causes the pain and stiffness in the early morning. At your stage I was prescribed 10 mgs of Amitriptyline to take one hour before sleep at bedtime. I found that this improved the reactive wakefulness. Later on, I built in an after lunch nap to help me get the best out of my day. If your PMR diagnosis is correct ( it sounds correct) you should feel a significant, if not miraculous, improvement in pain and stiffness. Some patients need a start dose of around 20 mgs to obtain relief. It is good to be checked for other conditions. Diagnosis of PMR is best obtained by symptoms and response to Prednisalone and the elimination of similarly presenting conditions.Blood tests cannot be relied upon. 20% of patients do not show raised inflammation in blood tests.It is essential that you pace your activities and try to avoid stress to aid recovery. The extra energy you may experience now, is due to steroids, not recovery. Keep in touch with us. PMR and it’s management go through a number of phases. Experienced and supportive people on here, can advise every step of the way. Welcome to the site.
thank you very much for your reply. In your experience would you say that this has been brought on my stress? Ive had a very, very stressful couple of years doing childcare for family that half the time I havent wanted to do, but couldn't say no, there was no one else to do it.
I'm sure that stress brought on my PMR. A tragic death, stillbirth of our granddaughter and caring for a terminally ill relative in the space of a couple of years.I hope that you're caring responsibilities are over now and that you're able to concentrate on your own health and what is most likely PMR. Please be believe that that things will will improve. Patience is a virtue 🙂.
My PMR was also triggered by a stressful situation, caring for my mum with dementia until her death. Another family member compounded this stress. Bereavement, a slow cruel kind, as I lost her gradually was a big factor. I think these life experiences can lead to autoimmune diseases, as can over work and stressful work situations. If you ask anyone here there is usually a story behind the diagnosis.
What you describe certainly sounds typical of PMR - both the symptoms and the response to pred. Unfortunately for some people pred does disturb their sleep - it will probably improve over time and as the dose reduces. In the meantime - try to sleep when you can and even of you aren't sleeping, rest.
It sounds very much like my initial symptoms. My PMR was definitely brought on by stress in my opinion. My GP kept saying I had a virus, a long term one! In the end I went privately to a rheumatologist who confirmed PMR in seconds. The trouble with steroids, although a wonder drug, there are side effects. I used to go to sleep in seconds, I now lie awake for hours. I listen to the BBC World Service.
From reading the many posts here for over 3 years now, there certainly seems to be a pattern. PMR loves type A personalities, doers, achievers, busy people who at the same time are givers, carers, fixers and even people pleasers. If you have Nordic or Celtic genes too, then you're doomed!! We don't seem to handle stress well, even though in our younger years we thought we did. My late father had PMR too. We share personality and character traits.
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