Starting 5 or 6 years ago I was increasingly suffering from stiff and painful joints after being inactive for a few minutes and more particularly in the mornings (getting out of bed) As time has gone on this pain is now well defined across neck, shoulders and upper arms, significantly worse in hips, buttocks and upper ham-string. Also painful in both knees and the balls of my feet and toes. General mobility is difficult, especially standing up or sitting down following periods of inactivity. Fatigue and general malaise is prominent. I have lost appetite and 10 lbs in weight. My ESR and CPS levels are normal, which although unusual is not uncommon in PMR. The acid test for me is that on 4 occasions in the last 5 years I have had corticosteroid injections for costochondritis on each occasion all of my "PMR" symptoms have disappeared within hours. This phenomena has been widely ignored by my GP and Consultants who insist I cannot have PMR. Also this last fortnight whilst being treated for a dental abscess with antibiotics my symptoms have eased significantly. Can anyone offer any advice or recommend a consultant I could see privately as I am taking significant amounts of opiate painkiller and wish to stop. I am type II diabetic (insulin treated) and have had 3 strokes since 2007, I am 61, non smoker, non drinker. Thanks.
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Was interested in your post, as your symptoms sound as though you may have Ankylosing Spondylitis. And, yes, CRP and ESR levels can give normal readings in AS. Suggestion would be to see a rheumatologist who has a subspecialty in AS.
Are you living in the USA or the UK ? IF the UK then roughly whereabouts - there are excellent rheumies whom I know of in the UK who specialise in AS. (I have AS.)
Hi Thanks for your reply, having being brushed off by my GPs I have had to take the clinical lead, consequently I get told "you shouldn't google your symptoms". I had not considered AS, but I will investigate asap. I have seen a Consultant Rheumatologist(Professor) who made a note of the steroid affect, but brushed it off. He was more interested in the lack of mobility around my shoulders, ignoring my hips, buttocks and hamstrings. I am scheduled to have physio for frozen shoulder syndrome on March 4th. The referral letter from my GP was dismissive and patronising as was the attitude of the Professor to my wife and I. I had a "pat on the head" and told to "run along to Physiotherapy"
Your nearest high level AS specialist one looks to be : Dr Helena Marzo-Ortega (Rheumatology Advisor)
Dr Marzo-Ortega is a Consultant Rheumatologist for the Leeds Teaching Hospitals NHS Trust and an Honorary Clinical Associate Professor at the University of Leeds. She is the Clinical Lead of the Spondyloarthropathy service at the Section of Musculoskeletal Disease and the Clinical Lead for the MSK Specialty Group of the West Yorkshire UKCRN CLRN. Her main areas of interest are within the field of early arthritis, undifferentiated arthritis and spondyloarthritis including Psoriatic arthritis, with a special focus on the role of imaging biomarkers and biologic therapies.
Dr Helena is good and at an international level.
It is quite possible that your GP will try and brush you off, you will need to be insistant. Certainly your present rheumatology will brush you off and 'maybe' suggest the HLA-B27 blood test marker ... Hmmmm. Not all spondys are positive for the HLA-B27 gene. Get the test, IF you are positive for it, then, that will be winning marker, if negative, one does not have to be positive ! Being positive is not a definitive marker, otherwise all those with the marker would no doubt carry the Dx for AS, and all those who are negative would not have such a Dx. Neither of which is the case !
Take care - be careful of those NSAIDS - they insult the stomach and do a right number on the intestines. As for cortisone injections into the shoulders, desist. Cortisone kills of tendons and ligaments, and the shoulders can be particularly badly affected ! Frozen shoulder, icing and physio. Will need a good sports medicine physio. Can be a long haul, but this is where one starts with frozen shoulder.
Come back to me as needed. Yes, I can rustle up papers for you, and a ton of further information. Above is for starters.
Here's a search criteria that can also set you on your way :-
Ankylosing Spondylitis and the Microbiome -
The gut, the microbiome, see The Microbiome Research Project - is very much tied up with AS, hence the reason why NSAIDs play such havoc with the spondy gut.
What an awful situation , and all too common unfortunately.
Have the Doctors given you any other explanation for the widespread body pain other than PMR?
Have they found Osteoarthritis or spoken of Fibromyalgia or other Muscle or Nerve conditions or another chronic condition that you have been treated for for years?
Obviously , you can have PMR as well as any of these things . Health conditions are not an either / or , but Doctors can get bound up in one diagnosis and then try and push all of your symptoms onto what you have been diagnosed with before.
They brush off something new and then you are stuck not getting the diagnosis and help you need.
It may help if you say which country or region you live in so that people whom live there to will recommend someone close to you.
You don't deserve to be left without answers or treatment , a private consultation may help.
Thanks for your reply I live in North East Wales. My consultant at the pain clinic ruled out Fibro and I have seen a consultant Rheumatologist who made a note of the steroid affect and concentrated on my poor mobility around my shoulders, but ignored my severe discomfort around my hips and thighs, he has recommended physio! All other forms of rheumatoid conditions have been ruled out, and gastric, I have had several MRi and CT scans, also colonoscopy.
I would definitely consider taking a recommendation from the forum for a Private Rheumy to see in North West England it will save you a lot of time and stress over all if you can afford it.
Unfortunately , you will be unlikely to be able to continue being treated on their NHS books afterwards because Wales NHS do not refer peopled over the border for treatment as standard except for in very exceptional circumstances.
The Private Rheumatologist can suggest tests for you , to your GP, for them to book on the NHS to help reduce your costs. The Private Consultant can then use these results to finalise their diagnosis ( this may involve delays though).
Afterwards , they can send their diagnosis and treatment recommendations to all the Depts you are currently under , and a copy to you , so you have more evidence to strengthen your case for specific care if your current Doctors try to dispute the advice you have been given , or say they must repeat the tests before they agree. This doesn't always happen , but unfortunately it does happen to some.
Making sure this Private Consultant has specialist knowledge of GCA/ PMR will be important , but , in your case , getting a Consultant whom also treats more Neuro/ Muscular conditions as well , like Fibro , Connective Disorders and Chronic Pain Syndrome associated with Post Illness Trauma will also be important.
You may have PMR , but based on your history you could have something else , it could be a Neuro as well as Rheumatology problem, or a number of conditions that need treating together including PMR. A Senior Consultant with a good reputation in a number of Pain and Rheumatology issues will serve you well.
Unfortunately , getting relief from Steroid injections doesn't always clear up the picture for people with Complex Multi System Pain Disorders because things from a Neuro or Muscle origin , including Fibro , can have short term relief from Steroid use.
North Wales are both short of Rheumatologists , but also short of Rheumatologists with specialism outside Arthritis. They may have stated you do not have Fibro or PMR but this is likely to be because they are not as specialised in these things and are inclined to try and sweep you on to another Dept or back to the GP as soon as possible , if a case seems more complex.
The Pain Clinic is good and will eventually help you convince your other Consultants to use better combinations of drugs and care to help with most conditions , but they don't like to take over control of diagnosis in your initial visits and do usually request for use of Physio as a first step to help them see the results and make a diagnosis afterwards.
I was only diagnosed with all of my conditions ( some of which I have had all my life) when I was sent cross border for tests for Behcets , up until then Rheumatology were more than happy to brush off my symptoms of just a part of my Neuralgic and Chronic Pain Issues , despite seeing me on several occasions over more than ten years.
The Consultants never looked past my original diagnosis except with ordering the most basic blood tests and x-rays and joint mobility checks .
What Opiod are you on at the moment , if you don't mind me asking ?
Hi, I am currently back on Oxycodone LongTec and ShortTec. Previously I have tried MST with Oramorph also Buprenorphine patches. They do not alleviate the pain in anyway, but they do take the edge off. Fentanyl has been suggested, but I don't really fancy that, for obvious reasons. I titrate the dose as my pain ebbs and peaks, I hate the Twilight world that exists with opiates. For the life of me I cannot understand ho people enjoy taking them!
Still on the books with the pain clinic, I am having steroid injections in my ribs for Costochondritis on March 6th, which I don’t need tbh, but I know will alleviate all my other symptoms for 3/4 months
It may be a good idea to request to see one of the Senior Consultants in Clinic that day to discuss through all of this again before you have the injection put in .
Really thrash through all that has happened so far and discuss what medications you are on now and just ask if you actually need more help and investigations done before having the steroid injection done to make sure that you don't need anything different or some changes in your long term care.
Don't hold back on information but try not to get too emotional. Tell them exactly how you are on your worst days and were the pain is worst and has been worst over the last three months. Tell them all your symptoms even if they only occasional or unusual. Most importantly , show them you are convinced that you need more help with your care as you feel that things are only getting worse .
Going to the GP in the meantime is also a good idea .
Thanks for that, I had planned on requesting a full review, but after the injection in my ribs, which will help the costochondritis and alleviate the other symptoms, drastically improving my quality of life. I have tried to book a half hour appointment with the doctor to review my condition, but 10 mins is the maximum, maybe 20 minutes at a push! Every GP I see is reticent to even discuss prescribing pred or similar due to risk re my stroke and diabetic history. My attitude is to balance the risk with a quality of life! All my GP will say is "it's beyond their expertise"
I will collar the consultant anaesthetist the moment after the injection, but I am reticent to ask him before the procedure in case he changes his mind. Of course he has said to me in the past he is there (as a pain consultant) to treat the symptoms and not the cause.
Why is pred off because of stroke history? If what you have did turn out to be GCA or LVV (large vessel vasculitis) that increases your risk of another stroke.
I've not challenged the reason, certainly I'm aware steroids can affect blood sugars, my strokes always crop up as a reason for doing or not doing something. My plan is to ask for a complete review with the senior partner at my GP practice, who seems to be the best one to go to.
Sounds like you really would benefit from sitting right in the Pain Clinic and asking to speak to a Pain Consultant or for them to calm down a Rheumy to properly thrash this out. A GP isn't really specialised or qualified enough to make these decisions on a patient with a more complicated and multi system medical history .
You never know if you force them to give you some answers before you get the needle put in you may get a more positive outcome , and get a pain jab , Good luck , let us know what happens xx
My GP kept saying I had a virus. In the end I went privately to a rheumatologist who diagnosed PMR virtually immediately. You do need to have some sort of reasonable diagnosis, you don’t want to continue with pain like that. Do the opioids help? I tried Tramadol and it had no effect at all, which does seem to happen with PMR.
We can't really suggest someone without knowing where you are and how far you are willing to travel.
Aaaaahhhh - light dawns - you are in Wales. Well that answers a lot of questions I fear.
Do the opiates help? That would be unusual with PMR to be fair. However, I am appalled that all the doctors have dismissed symptoms like that - whatever they are due to, they are due to something.
As Ruadh mentions, AS and PMR can sometimes present very very similarly - but I personally don't see anything there that suggests AS as opposed to PMR except you mention joints. I had all over pain much as you describe. Do you have night time pain? Does it improve in the morning once you get moving?
It is not uncommon for patients to be treated for "frozen shoulder" that is the presenting symptom for their PMR - but be very careful with the physio because physio can make PMR worse.
What investigations led to the rejection of fibro and "all other forms of rheumatic conditions" as diagnoses? How did the strokes and the PMR-type symptoms relate in terms of time? Do you have any symptoms that might be construed to be GCA-related?
Hi PMRpro, thanks for your interest and reply, below I have tried to answer all your questions.
Do the opiates help? - Not really, I titrate the dosage up and down as the pain ebbs and peaks. It does take the edge off though. I take slow release preparations and top up when i experience breakthrough pain (all the time) Fentanyl has been mentioned as the next step, which I do not fancy
Do you have night time pain? Does it improve in the morning once you get moving?
Night time is the worst, I cannot sleep on my side as I fear waking up in excruciating pain as I start moving my shoulders, sleeping on my back aggravates my hips, pelvis and buttocks. Getting out of bed is very painful and stiff, but I improve dramatically after 30/45 minutes. I have been typing at my desk for nearly an hour, I know when I haul myself up, I will grimace and move like a zombie for the first 25 yards
What investigations led to the rejection of fibro and "all other forms of rheumatic conditions" as diagnoses?
Referrals to a pain consultant ruled out Fibro. Then consultants in Neurology and Rheumatism ruled out everything else. GP has ruled out PMR due to no raised ESR or CRP, when I explained that was possible, it was "beyond her expertise"
How did the strokes and the PMR-type symptoms relate in terms of time?
My first stroke was 2007, my third February 2014. I first presented with acute and persistent pain in my middle back, I also complained that I struggled to stand from a sitting position without stiffness and pain in late 2013. The widespread chronic pain was well established by late 2014. At this time I was diagnosed with Costochondtritis, which is how I realised the steroid injections completely and swiftly alleviate all of the pain symptoms. This "phenomena" has been dismissed by the pain consultant as "The Steroid Affect". I have another injection booked on March 6th, which is over 12 months since the last one. The Costo is not really bothering me, but I'll take it anyway!
Do you have any symptoms that might be construed to be GCA-related?
I have complained for years of severe, debilitating headaches across my temple. Even when I feel OK, if I bend over, sneeze or cough I have to hold my head firmly as it is really painful.
I am going blind in my left eye (distorted vision) I can only just make out the top line of a standard eye test chart and my scalp in tender to touch from time to time. The headaches have been totally ignored and the blindness is due to my diabetic laser treatment.
"Night time is the worst, I cannot sleep on my side as I fear waking up in excruciating pain as I start moving my shoulders, sleeping on my back aggravates my hips, pelvis and buttocks. Getting out of bed is very painful and stiff, but I improve dramatically after 30/45 minutes"
really does make me agree with Ruadh about AS - night time pain that resolves rapidly with morning movement is absolutely typical of AS. And pred CAN have a dramatic effect in AS too - one lady in Kent on another forum was dx'd with PMR but her somewhat useless rheumy refused to say it could be GCA despite tongue claudication and headaches but she was never able to reduce her pred dose without a return of symptoms. Eventually she was sent to Prof Dasgupta who said (much to the disgust of the Kent rheumy) he thought it had been GCA but burnt out and it should be treated on the basis of symptom relief. But wouldn't approve enough pred which was the only thing that helped! In the end she arranged an NHS referral to Prof Mackie in Leeds who was stumped at first and somewhat upset she couldn't sort it out to her satisfaction. Then one day our lady mentioned night time spinal pain - she was sent for a specialist MRI and bingo: ankylosing spondylitis was diagnosed. She started on (I think) Naproxen until they could identify which anti-TNF agent would be best, there is a choice of 5 I think. End of story as far as I know.
I'm appalled at your doctors' attitudes but I'm not surprised. Ruadh knows far better than I which direction you might try for help. Me? I'd seriously consider moving, even temporarily.
Yes. Stiffen up with lying down, first thing in the morning, pain; moving after sitting; pain. Tells a possible AS story. Think I'd move pro-tem.! Get to Leeds, they will sort. Very good rheumatology dept and neurology.
I was aware that Wales were difficult ;they have a certain reputation !
The best of everything in sorting - positive thoughts for a good outcome. Take care.
No money have they? Have a lupus friend in the south - denied access to specialist. A GP with a dermy interest was said to be enough to care for her - and then he naffed off too. She had a superb rheumy who then moved to Cardiff - and she was denied access to him although he was quite happy to take her. There are several areas in the UK I wouldn't move to for that reason.
Phew. I only knew of Wales, but other areas ? Thought they had introduced 'patients rights to seeing a *specialist, no matter the area'. IF I ever have to return...please let me find a place that offers excellent health services. Here in France, 2002, set in concrete, can see a specific specialist - so long as they were willing to take one on ! There are always the pvt clinics, which are reimbursed.
Good luck with getting a satisfactory diagnosis . I have PMR , my son has AS and my nephew has Elhers Danlos syndrome. Before I was diagnosed I wasted a lot of money and experienced extreme discomfort being treated for a “ frozen shoulder” by a sports masseuse . Ditto with a physio for back and hip pain .
Before he was diagnosed with AS my son had a lot of physio which didn’t help at all . Ditto my nephew . I was recently told by a physio that if you don’t feel better after 3 sessions it’s the wrong treatment 🤷♀️.
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