Update on my trials and tribulations regarding a diagnosis for my bilateral shoulder and hip pain......
Still haven't had any treatment or been given any medication bar pain killers and NSAIDs....
Got my referral letter for the NHS Rheumatology referral......Feb 24th 2024.....
Absolutely devastated. Unclear on what to go next to be honest.
Can't go on like this until February......I suppose A&E is the only option left as I have been advised previously.
Unfortunately sounds about par for the course.
Did you manage to get blood results from Benenden Hospital appointment.. and do you still have a follow up appointment/conversation with them?
.. and are the painkillers/NSAIDs from the GP? Any chance of persuading them to give you a trial of Pred - maybe dropping the ‘well I’ll have to go to A&E then’ comment in the conversation. That sometimes has an effect.
Unless you can go down the private route [obviously at your own cost] then as you say A&E seems the only option, but unless you have GCA type symptoms, it’s not really an emergency… in the true sense.
Blood results and face to face appointment at Benenden is booked for 17th December.......I suppose that's quite good.
This morning was just a particularly tough one and it's hit me mentally as well as physically I genuinely have no idea what this thing is and I'm still reeling.....very grateful for your responses as always.
I know -and some days it just gets too much. ☹️
Yes. Today was one of those. Spent three nights in a normal bed, not half propped up on the sofa and it just feels that my shoulders simply can't cope with being 'flat' I just couldn't get in ANY position where I was comfortable and I could feel my shoulders freezing up as the night went on and sure enough in the morning it was exactly as I expected......just unbearable.
Could barely lift the duvet off me without LOADS of pain.
Been there with GCA…. my sympathies..
Gratefully received
I had to manage it for 5 years - I was 51 when it started. But I couldn't get past the GP because my bloods weren't elevated - or at least, not "out of normal range". They were elevated for me. But as a woman I got the "it's your age" line. I did warn him not to go there with the "in your head" view so he didn't! Had I known better I could have gone to a different GP but the PMR expert was part time and had 2 lots of maternity leave in the period so was next to unavailable as she was very popular.
The ED is not really a solution - their role is to keep you alive, not triage you to a rheumatologist unless you are losing your vision with GCA. With PMR, if they recognise it, the direction to the rheumy department is unlikely to be any faster since it isn't an emergency and not only are there waiting lists but Christmas extends them. Two and a half months is really not too bad at all.
Will just have to suck it up. Feels a LONG way away but at least I have Benenden in a couple of weeks.
Hopefully that rheumy will have a view on it - and start treatment. It may not be PMR, it could be anklylosing spondylitis as you are a young male and nights are bad.
Then the question is whether they can/will add you to their NHS list for continuity. I doubt Benenden will cover you ongoing at the end of this coverage period.
Do go to Emergency if it continues after trying to see if your GP will give you a trial of Pred.Has the GP actually given you a blood test at the surgery for your inflammatory markers?
Have you had any relief from NSAIDs at all?
You could ask the GP to do blood tests again , even if you have an appointment on December 17th, because the results would come back this week and if they are still high after trying other anti-inflammatories you would have more evidence to request steroids from your GP to trial them.
But if not , it's sounds bad , but A and E is probably you're only way to get treatment quicker in the UK.
They may only triage , but if you are in that level of pain and you go in normal working hours explaining that you are also waiting to see a Rheumatologist they are more likely to call one in to assess you in the see and treat area and order blood tests and x-rays on the spot.
It could mean you get steroid treatment given from that visit, at the very least your visit to AandE will be recorded so you have proof of how bad it has got without treatment , and Rheumatology is notified of the AandE attendance so your case us classed as more urgent and you could get your Rheumatologist appointment brought forward to January.
Hope you get some help soon , I completely understand how mentally draining it is to be in pain all the time.
Can you get some firm pillows to elevate your head and shoulders in bed in the meantime if that gives you relief when you sleep?
Take care , Bee
Thank you so much for this.
My Rheumatologist appt has been bumped forwards to this Saturday......hanging my hopes on that.
I believe NSAID'S do seem to provide a bit of relief but not much and I think a lot of it is coincidence.....I'm other words, that I think the symptoms ease later in the day.
I have tried taking Naproxen or Diclofenac prior to bed to see if I can get through but I still wake up around 3 hours after falling asleep in proper pain so.....I don't know we whether they work.
I will get the results from my full Rheumatology screening on Saturday so whilst I'm worried, at least I will be closer to knowing what it is/isn't I suppose
NSAIDs will help a little on the current daily shed of inflammation - but not enough to mop up the accumulated amount as well…
Thanks, that's kind of how it feels....an initial bump of improvement but not really touching the sides of the overall hellscape 🤣
I think so. It needs to be much sooner than February, unless another doctor is an option, maybe privately although I loathe to say it. Your health is just too important. Pred is a good diagnostic tool as DorsetLady advises.
I sympathise with you l have been dealing with worsening bilateral hip pain for two years. My GP was useless just saying to take another 100 mg of Gabapentine. My husband took me to our local hospital which has a walk in unit as it got so bad. The unit is not quite a and E where l was seen by a very rude unpleasant unsmiling nurse who had me in tears at one point which is most definitely not my style. She must ignored me being upset. She did however x-ray my hip which is ok. I also got strong co codomol which takes edge of it. I then saw another GP who continued the prescription and l have since been referred to orthopaedics and am having an MRI next week. Sorry to go on about myself but l hoped this tale might give you optimism that help is there. And l do hope you get it. If it gets so bad go to A and E
I agree with Dorset Lady and Jane. You shouldn’t have to be in unbearable pain until the end of February. Your GP surely can’t see it as unreasonable to give you a trial of Pred.
It can’t do any harm and could give you a much needed answer .
Yes......I think that I will try to limp through to my private Rheumatology appointment next week before going all out for some treatment of some description
At this point, it would be a dream to have the steroids work. Just anything to stop me waking up at 4am like this........last night was just the worst.....any movement was excruciating.....couldn't lift my blanket, it felt about 20kgs.........couldn't get up......eased off a lot now but I just don't think being like that for the next 3 months is sustainable mentally for me
UPDATE: Benenden have shunted my Rheumatologist appointment a week forward to this Saturday the 9th December.
Hopefully will get some answers then. My blood results are back and urine too so let's see......dreading it but can't go on like this so I suppose I need to know.
I have money left to use with them.....should I be asking for any scans etc or is the Rheumatology screening the specialist has done enough?
I should wait and see what rheumatologist comes up before you spend any more….you might not need to. Hope you get some sensible answers.
Cheers x
UPDATE: Got my initial consultation letter back today prior to my follow up on Saturday.....not exactly what was discussed on the day as the main focus was on the shoulders from my perspective.....I need to get that across on Saturday as it's the main issue.
Not sure what synovitis is but it looks as though the tests are thorough......thanks again to everyone for their help and advice here.
Amazing kindness shown by everyone and I'm massively grateful.
Synovitis is inflammation of the lining of the joints and is often seen in PMR but without the erosion that is seen in other inflammatory condition
hss.edu/condition-list_syno...
pubmed.ncbi.nlm.nih.gov/118....
The other tests are about right for a good differential diagnosis including myeloma.
So if no synovitis it found it suggests that PMR is not the culprit for what I am experiencing........
I'd kind of hoped that a PMR diagnosis may have at least brought some fast relief through the use of steroids.
Seemingly I'm now not looking at that as a diagnosis and so I suppose I just have to wait and see the Rheumatologist's results and opinion.
You haven't had any imaging - that must be clinical signs. Synovitis is what usually causes the hot swollen joints in inflammatory arthritis. It doesn't do that in PMR so no, I would say it is more ruling out inflammatory arthritis, but I'm second guessing him.
Wait and see what he says.
OK.....thanks. Appreciate it.
I am just popping in to say that in the months I was waiting dor my diagnosis, the only thing that helped was deep heat. I couldn’t get it wvery day bit the days I could I wasn’t in tears all day. Hot tub, sauna or heated towels from physio. Maybe that can take the edge off for you while you await your appointment.
Thanks. I've been doing the hot showers which help in but getting from bed to the bathroom first thing is diabolical
I'll try deep heat.
Yes - PMRCanada reminds me another tip was to make a duvet sandwich to keep you extra warm AND soften your bed.
Duvet Sandwich!! Love that!! You should patent this!!
I’m fact the first time my shoulders became involved with my PMR pre-diagnosis was when we vacationed in Mexico and slept on a very firm bed. Woke up at 3am in agony and just stayed sitting on our balcony until morning as to not wake up hubby. Requested a foam pad, and then another to lay on top of the mattress (which helped a bit).
Until that point PMR symptoms had been in my knees, hips, quads and hamstrings. Once the shoulders neck and upper arms chimed in I was gutted and started thinking I had MS. Gratefully my new (wonderful) GP diagnosed me 2 weeks after our return home. It had been 5.5 months of hell suffering with progressively worsening symptoms. How PMRPro managed for 5 years is hard to fathom!
Hoping you get some answers, options, and relief. Keep us updated about how it goes Saturday.
Agreed! Pre-diagnosis the only thing that really provided relief was deep heat (for me in the form of a 20 minute dip in the hot tub). Another helpful tool was a Magic Bag…a long fabric tube that could be heated in a microwave and draped over my shoulders. I could not bear a hard/firm flat bed either.
Yeah.....flat beds ......excruciating.....in the early stages of this I thought it may be my mattress so I slept on a camping mat on the floor one night.
MASSIVE ERROR 😂😂. Thought my arms were going to snap in half when I woke up....to be honest....the pain at that moment....I'd have been tempted with chopping both arms off!!
Do you sleep on your back or your side?
Preferably side or front......but not since this started.....has to be my back unless I'm having a particularly good day and can lie on my slightly better side for a bit......
That sounds like trochanteric bursitis in your hips? But on your back with pillows supporting knees and back may help. I also prefer side or front - and my back says no!
To be honest it's the shoulders that hurt worst when I'm lying on my side......although they hurt when I'm lying on my back too.....in fact they just HURT 😂😂
No, don't have one......alas
I have found a hammock very comfortable...for a while, although, lets face it, nowhere is comfortable for long! When lying on your back, the hammock tends to support your shoulders and pulls them forward a bit. The sofa is pretty good like that too. Because the pain tends to keep me awake at night a fair bit, and I often abandon my bed for the sofa in the middle of the night. I get up very early, not because I feel rested but because moving around is preferable to trying to rest in pain...but I have a midday snooze in the hammock/sofa for an hour or so and in that way I get the equivalent (nearly) of a full night's sleep but split into several shorter periods...I am off for my snooze right now!
Have a lovely snooze
Obviously a lottery what treatment you get from the NHS. After 2 weeks of increasingly severe shoulder pain, caused, I thought, by a fall, I messaged my doctor to complain about pain which was now migrating to other joints. Within a day I was referred to a physio attached to the practise. She saw me next day and initially treated it as a rotor cuff injury. She realised after 2 weeks it was more complicated, especially as by then my blood test results showed inflammation. Consequently, last week her and the doctor have decided to prescribe steroids as they think it's polymyalgia. No reference to a rheumatologist. Probably took a month from when I first asked for help.
Yes. Without a doubt. Flare ups diminished. Symptoms now tend to be aches rather than sharp pains. Early days. Wishing you all the best on your path to recovery.
Hey Paul...you have a rheumatology appointment tomorrow...is that right? Good luck! I am just sending you some solidarity in your predicament. I am in a similar spot to you...I was up at 2am taking codeine and paracetamol then again at 4.30am for more codeine and a change of sleeping arrangement, finally giving up at 6am and a strong espresso to start the day. Shoulder and bicep pain! I had a steroid jab 3 weeks ago and I felt like a new man for about 10 days... I get a review mid January when I hope/expect to start on oral steroids...but until then it is a bit of a pain in the arms! Good luck and I hope you get sorted soon!
Ah, I feel for you......this is no fun. Thanks for thinking of me.....yes, it's tomorrow, 8.30am....staying in a hotel near the hospital because I'm not sure my glass arms and numb legs could drive me for 90 mins!
Thanks for the message. Means a lot......not looking forward to it, don't know what yo expect...... apprehensive I think is the word.
Hope you get some relief soon xx
Good luck with appointment-hope you get some good information and a way forward… and natural to be apprehensive..
Thanks DL......I'll let everyone know xx
We'll all be thinking of you tomorrow. Hoping that by 8.30pm tomorrow evening you may be able to look forward to a more comfortable night.
God.......imagine that.......I've dreamt about waking up with general aches and pains and not glass arms for over a month......
I look at adverts and TV shows on telly with people in bed and think......wow......must be so nice to just lie down and sleep!!! Straight through!! 🤣🤣
The stuff I used to take for granted!!
NHS Physio appointment
Rheumatology appointment at last!
Satisfactory Rheumatology Appointment 
First Rheumatology Appointment 
