Good evening, I am 54 and started develop PMR symptoms whilst recovering from surgery on my foot. 8 weeks ago, at first I thought the terrible pains in all of my joints was due to poor posture from the use of crutches for 5 weeks, then I got the flu on Xmas day and the pains got really unbearable. The stiffness when I wake up is the worst and sitting down and getting up. I dread bed time because it’s so darn painful. My foot was healing nicely but this joint pain was nothing I had ever experienced except when I had operations on both frozen shoulders 10 years ago. I went to the doctors as I was due to return to work and she said “ it’s the flu” but the flu came and went and my pains stayed. 7 weeks later from when it started I have finally seen a rhumatologist who thinks it is PMR but I have to wait 2 weeks to see him for the diagnosis and this is through BUPA. I am back to work and struggling to manage the pain and stiffness and driving hurts my arms and neck. I am so stiff when I get out of the car too. I bathe, rub volterol into my joints morning and night and take co cocodomol with parecetomol in a morning and at night but only take patecetomol during the time I’m at work. I used to take ibruprofen but he told me my blood pressure was dangerously high so I stopped that straightaway. Please can you advise what would help to manage the pain until I get confirmation of the diognosis as I’m not coping too well 😞. Really sorry for the length of this but don’t know wear to turn at the moment x
I am so sorry you may have PMR on top of everything else. The only thing that will help is steroids. I am afraid paracetamol and co codamol really have no effect. If they do it is possible it is not PMR. I really feel for you as I know before I was diagnosed I could hardly get out of bed, being told I had a virus by my GP. Is there any way you can ask your GP to give you a week's trial of steroids, if you have a magical improvement, it is very likely you have PMR.
Hi Michelle, I am so sad for you, with your other problems and maybe PMR, sure does sound like that. I have been through the same pain before diagnosis. I was able to take ibrupofen as with you, getting in and out the car was almost impossible.
I was not going to take steroids but am now on them. I am 55 and like you are quite young to get this.
Unfortunately I don't have help for your pain relief, others on this site will probably have suggestions.
I really just wanted to say I feel for you and wish you all the best, and hope you do get the help you need.
Thank you for your reply I’m going to ring the consultants secretary tomorrow morning and ask if I can be seen sooner than the 30th Jan. when I questioned the Consultant about Having to wait 2 weeks he gave me the reason that they were short staffed. ( it’s a BUPA hospital so I pay for this) I wasn’t happy to hear this. Please can you remember how long you waited for your results to come back on your diagnosis for PMR?
Thank you Margot, I’d never heard about this condition until the consultant mentioned it. He just said keep taking the painkillers but I ve tried Codeine, co co domol and parecetomol and combined them and nothing works. I go through tubes of voltorol. I have another 10 days to wait to see him though I am going to ring tomorrow to see if I can be seen sooner as I don’t want to compromise my job as I’ve only just gone back to work after being off for 6 weeks with a broken foot. I’m just very miserable at the moment. I wonder if my high blood pressure is a result of this awful pain and the stress it causes day to day.
yes my dear as the others have said, only steroids will move the pain. and it will do that within a couple of days.
please do not be afraid of taking them, lots of people have side effects but lots dont, i for one have had no side effects at all. and i am in my 5th year. hopeing now pmr is burning itself out. which it does eventually. that is a good thing to know you wont have i for ever, good luck x
Hi Michelle, I had the same symptoms and polymyalgia was suggested. My GP was happy to prescribe a couple of weeks’ supply of prednisolone to see if dealt with the symptoms supporting polymyalgia as
the correct diagnosis. Steroids are the only thing that reduces symptoms. For some people relief comes within 24 hours, in my case it took a week and I had to up dosage to 25mgs, rapidly reduced to 20mgs. I didn’t see a rheumatologist for six months! Unfortunately a lot of GPS don’t know enough about Polymyalgia and you have to educate them. Good luck!
There seems to be a lot of people on this forum who have started with PMR symptoms post virally who are in their early 50's! That was the case for me when I started age 53 last year! Only steroids helped with the sympts you have described! I am active and have managed to continue working. The steroids had no impact at 10mg, my starting dose! I went to 20mg then 25mg and eventually 30mg until it had it fully under control. I stayed there for 6 weeks until the bursitis pains/aches in the hits stopped. I am now down to 13mg/day and am dropping to 12mg next monday! You need to shout a bit louder with BUPA! I had the same and when I stood my ground, i saw her within two days!!!! Good luck with it all!
I'm sorry - if it is PMR then nothing will really help the pain - ibuprofen is sometimes enough to take the edge off the pain but that is rare and you have been told not to. Purely out of interest - what are they doing about the "dangerously high BP"? I realise the average rheumy doesn't know much about general medicine - but it would be a good idea to look at the whole patient!
If he is waiting on blood tests to assist his diagnosis then the ESR/CRP inflammatory markers should be available in 24 hours and many doctors would simply start pred in the meantime if it were to be longer for other rule-outs. The speedy response to 15-20mg/day of pred is also a clue - PMR is characterised by a fast response while a lot of other things that might cause similar symptoms don't. A week of pred is no big deal - you can stop it immediately if it doesn't work, tapering is only required after a few weeks. Your very pricey encounter with an NHS rheumy (there are very few private rheumies who don't work in the NHS) doesn't sound impressive to me!
In the meantime, try warmth. I had 5 years of PMR without pred so I learnt how to cope and later we talked a lot about morning stiffness and managing it in the early days on the forums. Using an electric blanket in the morning BEFORE getting out of bed does make getting out of bed slightly less of a trial and then getting into a warm shower where you can do gentle stretches also seems to get the blood flow to the muscles going and allows easier movement - once you are moving a bit you should get less stiff. The pain is another matter - I never found anything that helped that until I got 15mg of pred. Magic!
If the consultant won't play the game - and you are paying for his services after all - then go back to your GP. In the UK PMR really is generally diagnosed and managed by GPs so if the consultant says "probably PMR" your GP must be able to help.
What worries me at present though is the possibility that you have more extensive inflammation than "just" PMR - if you have large vessel vasculitis or GCA then that COULD account for your very high BP. Which needs investigation asap anyway.
Thanks to all of your helpful responses. The consultant advised me to see my GP about the high blood pressure. So I saw him Friday and he advised me to buy a BP monitor and monitor my BP twice daily until I see him in a weeks time. I did buy one and It remains high but with the readings he can work out an average. He booked me an ECG on Tuesday. I will keep you updated. Thanks so much for listening. I will also try and bring the rhumatologist appointment forward if I can.
Hi I am 45, my doctor put me on steroids after two blood tests and I'm waiting to see a Rheumatologist. Within 3 days the symptoms have gone but are back at about 3am. I would insist they try steroids. Good luck.
Hi Michelle, I had to wait a couple of weeks to see a rheumatologist privately as he was on holidays, the waiting was awful. My GP said I had a virus, a long term virus. Can you see your GP now rather than going to a rheumatologist?
Hi michelle06123
I can recall reading on the forum that another member, who's forum name i can't recall, developed PMR after a foot operation. I wonder if there is a vonnection with anaesthetic and muscle paralysis which is involved in anaesthetic and PMR. Over the counter meds will not alleviate PMR pain but a little exercise may help and perhaps a script from doc for tramadol....
The post-op muscle problems are a different thing though you are quite right to think about it. It should start immediately after the anaesthetic wears off. If there is a delay it is less likely.. Even Tramadol doesn't help PMR though!
Yes I will shout louder tomorrow morning when I call. May I ask you something, my wrists are affected as are all my joints but this weekend after driving to work each day last week which is starting prove difficult my wrists were very sore and after preparing a homemade soup and all it entails my wrists became so swollen that I can not even lift the kettle to make a cup of tea. Is the swelling part of the condition?
Thanks Eileen. The pain and stiffness was pretty instantaneous after surgery and just got progressively worse, I do remember the orthopaedic surgion saying that he’s seen this type of reaction on muscles following surgery but didn’t say why it happens.
Hi EileenH
I did some research on anaesthesia and it says if someone is given Succynilcholine during the op it causes pain in the muscles post op which can be severe and it can last for a while after......
Yes it is a possibility. The surgery was done at the same hospital and it was the orthopaedic surgion who referred me to the rhumatologist so I’m sure they can find out. It’s all such a worry and there are many conditions which present similiar symptoms but I guess all will become clear once the blood results are back. But the high blood pressure worries me it remains consistently high and I don’t know yet whether the 2 are related or not. I will try to bring my appointment forward with rhumatologist and book some holidays from work next week whilst I’m feeling at my worst. I will keep you posted and thanks for listening as i have at least somewhere to turn and I’m grateful for that.
Hi michelle06124
Prednisolone causes high blood pressure too. Your GP and a Rheumatologist will be aware of this. If you are put on preds you may be prescribed a blood pressure med such as Ramipiril or the like...I hope you get things sorted soon so you know where you are and can deal with whatever the problem is...
Hi Stephen,
Re your symptoms returning about 3 am, you might try splitting your dose. There are numerous posts on this forum about that. Many seem to use 2/3 at breakfast and 1/3 in the evening.....but you would need to experiment to see what your body likes.
Just a thought.....