Mrs Dawn Smith

[Dawnie08]

Hi, my name is Dawn and I have had issues with swollen tendons and fluid in right shoulder since November last year. In December I had X-ray and ultrasound to find all this out, but since then have increased pain and lack of movement and now also. Affects left arm too. Feels like my muscle are being ripped from my arms and stabbing nerve sensation in shoulder. They feel like they don't sit in the sockets. Pain excrutiating at night and in the morning and never lets up too much in the day either all down arms.  Being tested for PMR. Pain control doesn't seem to touch it and don't sleep well because of pain. I was always active. Badminton, waterskiing and gym classes. Does it get better????

[PMRpro Ambassador]

If it is PMR you have and you are put onto corticosteroids then yes, it gets a lot better! Maybe not overnight for all the pain - but I went from barely being able to get up and down stairs (except like a toddler one step at a time down, and up on hands and knees) to being able to walk normally in 6 hours. The hip bursitis took longer, a few months before I realised it had all gone. And it isn't a case of take a course or pred and stop - you start at a dose that is plenty and reduce slowly to find the lowest dose that manages the pain/stiffness.

However - just because the pain is lots better it doesn't mean you will necessarily be able to go back to your sports because there are other aspects to PMR - notably fatigue and the underlying autoimmune disorder that causes the inflammation that leads to the pain and stiffness remains active. That makes your muscles intolerant of acute exercise so you may still find some restrictions there - especially if you overdo things. 

I continued to ski - but it took most of the season to build up from a few very short runs on alternate days to a normal morning skiing more often and even then I needed the rests on the lift between the shorter runs or a rest half way down a longer one. Many people who were in very good physical shape and who weren't ill for long before diagnosis do seem to do better with activity but it really is a case of seeing how you are. Everyone is different and some people are far more disabled even when taking enough pred than others. For some people pred has its own downsides that restrict their activities but no-one can tell in advance who will be which. Nor how long it will last - which is years rather than months for most people. 

Once you are on pred don't be in a rush to reduce nor to reduce too far - either will just lead to a return of the pain and stiffness. Small steps and not too fast is the way to go - and any return of symptoms should prompt a reappraisal of how you are going about things. If you really struggle to reduce the dose, even in tiny steps, then your doctor may wonder later if it is another inflammatory arthritis - about 1 in 6 patients originally told they have PMR have it revised at some point, usually to late onset RA. It is treated differently, with DMARDs not steroids alone.

There are, by the way, no "tests for PMR" - it is a clinical diagnosis made on the basis of ruling out all the other options and looking at the symptoms. Doctors will often tell you that "your ESR/CRP tests show you have PMR..." That is not true, they are just general signs of inflammation and are raised in many things. And for about 1 in 5 patients with PMR - they are never raised in the first place so having normal results there does not mean you DON'T have PMR either. 

But come and ask any questions you may think of - someone will have been there and got the t-shirt.

[DorsetLady PMRGCAuk volunteer]

Hi Dawn, 

Welcome. If it is PMR and you are prescribed Prednisolone, then yes it will get better. Most people's pain reduces by at least 70%, some lucky people have no pain once on the tablets.

However, if it's PMR then you have to do your bit as well, you can keep exercising, but not too vigorously or repetitive - nice and gentle! You need to pace your actitivites- not doing too much one day because you are pain free, because the next day you'll be fatigued. Give yourself some TLC.  There is no cure for PMR, but it can be controlled very successfully with steroids, but you'll be in for the long haul I'm afraid, so one thing you have to learn is patience. 

I'm sure others with come along with much more advice, and links to other forums and readings etc, but there is a book by Kate Gilbert - PMR GCA - A survivors guide, in hard or soft copy on Amazon which may help. 

Hopefully you will get a diagnosis quickly, and it may not be PMR, but if it is then I'm sure you'll be back with many more questions that someone will be able to answer for you. 

[piglette]

Have you had blood tests for ESR and CRP?  This indicates inflammation which happens with PMR, although twenty per cent of people do not have raised levels the majority do. I had pain even trying to lift my arm to scratch my nose, the pain was excruciating, it initially started in my shoulders then went down to my hips and thighs. I was ready to buy a wheelchair. On taking steroids it was like magic within less than twenty four hours I was a new person. Usually doctors give people a short trial of around 15mg to see if this happens, which is an indicator of PMR. if the steroids do not work you can stop them within a few days with no problems and do not have to taper the dose which is needed if you are on them for longer. I am surprised they have not tried a short test for you if they suspect PMR and have discounted everything else.

[Dawnie08 in reply to piglette]

I had all the blood tests on Tuesday, so just waiting for the results. In a way I hope it is PMR so I can get on with my life. Is that the wrong thing to say????

[piglette in reply to Dawnie08]

I do hope they let you have a steroid trial quickly. If it works you won't know yourself, if it doesn't at least you can discount PMR. I understand you wanting a diagnosis, there are a lot of things much worse than PMR. 

[Dawnie08 in reply to piglette]

Thank you x

[Frankie40 in reply to Dawnie08]

Just a reminder of what other people have said Dawn.  Normal ESR doesn't necessarily mean you don't have PMR.  Both I and my GP thought it did, so even though a short course of Prednisolone had worked wonders I stopped taking it as we agreed I hadn't got PMR.  Later, a rheumatologist said I do have PMR even though blood tests are normal.  Being on steroids is great but I am gradually realising this is a long haul thing and will take time.

[Dawnie08 in reply to Frankie40]

All my bloods came back normal. I've started seeing a chiro but still have lot of pain. I'm having a nuclea med bone scan on Tuesday so most people won't touch me in case they are doing more damage. My back, shoulders, arms chest and neck are all painful. Pain subsided a bit in right arm but shoulder still frozen. Left arm is worse now and shoulder frozen too. Can't dress myself or do my hair and feel like I'm sinking into an abyss.. Soo down been without use of both arms for nearly 2 months now.. All in all started 6 months ago ..

[8sandylou]

Hi Dawn hope you continue to feel better if prescribed Prednisolone.   I did to, but was taken cold turkey off them after leaving Hosp from TA Biopsy (got a Negative) and other than go Dr shopping after 20 years happy with current GP treating other chronic disabling pain, I am at home after two wks not feeling at all well, dealing with the side effects of Sepsis in Biopsy scar not going to anyone since my heavy duty anti Biotics finished.....I hope you don't need to go down this path.....and your team are onto your treatment.....I felt that shoulder feeling like it was about to pot out while in the MRI.....awful feeling had to take a few deep breaths in pause to settle shoulder down to keep on with rest of MRI......good luck will be watching out for you.....hugs 😄

[Dawnie08 in reply to 8sandylou]

Thank you, even if I don't have PMR it nice to know that people care enough to reply to a complete stranger. I'll let you know how my bone scan goes. Not looking forward to it I have to say... Gonna be about 4-5 hours in all after being injected with radioactive dye and having to wait... Thx xx