May I have the benefit of your advice please....

[angiek]

Hello everyone! Am off to the GP again tomorrow and hoping I will finally get a diagnosis, or at least a referral, as I have been in increasing pain since the end of last Summer. I am 62, female. In August I started with muscle pain in the back of my upper right arm, then front of arm. Thought I had hurt it playing badminton, but didn't improve with rest. A few days later same pains started in left arm. Also lower arms are aching/throbbing. Stopped cycling in case it was something like carpal tunnel. Almost permanent dull headache. Finally made appt. to see GP at end of October, but came out with shingles rash the day before, so she treated that and said needed to be clear of shingles before further investigations. Pains have spread to shoulders/neck Sleep is difficult as pain can be very severe. I do find if I 'overdose' with Ibuprofen and get one of my kids to lather painful areas with ibuprofen gel it can sometimes help reduce the pain enough to get some sleep. Now find it very difficult to dress, reach up to cupboards etc. Finally felt shingles pain had gone so rang docs 17th January, she arranged blood tests. She did mention PMR as possible diagnosis -but blood didn't show anything much- ESR was only 17. Last week blood tests for autoimmune conditions but these tests results take up to 10 days, I have rung to see GP tomorrow because I am so sore, stiff, and feel like my eyesight is not as sharp in my right eye, and have also had 4 occasions of incredible pain when eating-in right jaw only. If you can give me your advice before GP appt I would appreciate it. I feel I am not being taken seriously and have so far only had telephone contact with GP.

1. Is it common for ESR not to be raised and be in so much pain?

2. As ibuprofen is anti inflammatory could that have lowered the ESR reading?

3. I have only had the jaw pain 4 times, is this likely to be unrelated?

4. I see that weight loss is a common symptom-I have not lost any weight, so is it unlikely that I have PMR?

Thank you in advance for your help.

Regards

Angie K

[Soraya_PMR]

1. Personally my ESR and CRP have never been raised (11 & 1 at initial testing). It happens. Of course my GP therefore dismissed PMR, but my rheum accepted that it does happen (up to 20% of people with PMR) but can offer no explanation for this. Therefore I am classified as ‘Atypical’. (Is it my imagination, or are those of us with no raised acute markers in the younger age bracket? Me: 56 at diagnosis)

2. ESR yes. CRP no.

ncbi.nlm.nih.gov/m/pubmed/2...

3. IMO ‘coincidences’ need a thorough check. Did the incredible pain ease after you stopped chewing? Definitely needs telling to your doc, particularly as you mention a sight change.

4. I lost about 7 lbs, definite lack of interest in food during the early stages. Also weariness meant I couldn’t be bothered. Maybe I’d have eaten more if I had food plonked in front of me by a.n.other? Or if I had to cook for a family? I don’t know your circumstances. I don’t believe weight loss happens to all.

How are your hips/ thighs? Can you get out of a chair easily? Is your stride when walking shortened? Do you stiffen up if you sit for half an hour?

[PMRpro Ambassador in reply to Soraya_PMR]

Atypical presentations are more common in younger patients yes.

[angiek in reply to Soraya_PMR]

Thank you for your answers Soraya, every little bit of info, especially regarding the ESR will help me when I see the GP. I don't think I had a CRP test- or at least I wasn't told what it was in the phone consultation. I'll have to follow it up. I live alone so have not had food prepared for me, nor had to cook for family, but I do know that because of the pain I am far less active than I was last year, so that could account for no weight loss.

I have had difficulty getting up from seated for several years, after I had very similar pains in my knees and thighs to those I now have in my arms, nothing other than 'mild' arthritis was found. Those pains disappeared as quickly as they came but did leave me less able. I do stiffen up if I sit still for even 15 minutes. But these things I have just put down to age, and the fact that I have not been exercising very much recently because of whatever is causing the current pains.

All my research led me to this group as I have most of the symptoms discussed here....so I hope I can get a diagnosis soon - I am a very resilient person and have a high pain threshold but I really don't look forward to feeling this unwell for the rest of my life!

[Soraya_PMR in reply to angiek]

Definitely make sure doc knows about your pelvic girdle stiffness as well.

Good luck tomorrow. Come back and update us.

[PMRpro Ambassador in reply to angiek]

" But these things I have just put down to age"

Oh yes - and that is why we are dismissed by so many GPs. "It's your age..."

Especially in the UK I think. Here where I live people are active well into their 80s. People with normally active lifestyles don't suddenly become unable to move easily as we so often do. So doctors listen a bit better here when someone says they can't do what they've been doing all their lives...

[powerwalk in reply to Soraya_PMR]

Oh I had lost weight too before diagnosis and starting pred. The pred took care of that!!!!!! Unfortuinately!

[borednow in reply to powerwalk]

Oh yes I can relate to that!! Pre PMR had been to Slimming World and lost over a stone. Then PMR struck and I got it all back plus more!! Just tried on clothes for forthcoming holiday and none fit so have just spent a fortune online restocking in LARGE sizes. Curses .........

[Soraya_PMR in reply to powerwalk]

The weight loss (unintentional) for me was the most worrying. I had none to lose! (BMI 18-19 my entire adult life) so a 7 lb loss was not good. I’ve put 14lbs back and am happy with that. I’ve gone up a size in clothes, good excuse for a new wardrobe 😉 I really enjoy the appetite pred has given me. Just hope I can hang on to my extra boobs!

[powerwalk in reply to Soraya_PMR]

I'd never put onweight in my life so not amused with the pred weight at all!!!!

[Soraya_PMR in reply to powerwalk]

Ah well, it allows us to experience life as a ‘larger lady’. This too shall pass.

Now if I ever hear those flippant comments about ‘fat’ people my immediate response is ‘leave them alone, they may be on pred!’

[PMRpro Ambassador]

ESR/CRP are not raised in up to 20% of patients with PMR/GCA. I never lost weight with PMR and I had it for 5 years without treatment - I gained weight because I couldn't exercise.

Like Soraya, I don't believe in coincidence until it is proven. If you are worried about jaw pain of any sort when eating AND your sight, if your GP is unhelpful then go to an optician (one that does the lot, not just dispenses specs to a prescription), explain that PMR is a possibility and ask for your eyes to be examined immediately. If AION is present in GCA it changes the appearance of the area where the optic nerve enters the back of the eye. If you can't get an immediate exam in one place - keep trying having made sure you have a soon appointment. Then take the earliest. If that doesn't work - try A&E.

[angiek in reply to PMRpro]

Thank you PMRpro, I have made an appointment to see my Optician next week- and hope my GP is more proactive when I see her in person tomorrow. Can you tell me what AION stands for?

Like you I have vastly reduced the exercise I can do in the last six months, so that would probably negate any weight loss.

[Soraya_PMR in reply to angiek]

Anterior Ischaemic Optic Neuropathy

emedicine.medscape.com/arti...

[PMRpro Ambassador in reply to Soraya_PMR]

Ta xxxx

[PMRpro Ambassador in reply to angiek]

If your vision gets any worse - please don't wait until next week.

[Hidden]

Hi Angie, your story sounds very like my own. I am 66 and earlier this year I had an odd eye event, then developed jaw pain on chewing and talking and in September thought I had injured my arm (and also stopped riding my bike and found showering and dressing really painful with arm pain). I had weight loss and muscle wasting. It was a really anxious time. I had been diagnosed with Polymyalgia in 2015 but even though I believed I might have GCA and stated this I was told I was fine and sent home from the Emergency department twice.

It transpired I was correct and had I had an earlier diagnosis treatment could have started much sooner. In my case the arm pain was caused by the GCA causing narrowing of the subclavain and brachial arteries which meant insufficient blood flow to my arms causing claudication pain. This is not to say that this is what is happening to you.

I urge you to be proactive and persistent. If is is GCA then you need to protect your vision. I wrote down a time line of all my symptoms and said I wanted a temporal artery biopsy which confirmed the diagnosis. I was fortunate that my sight had not been compromised given the 6 month delay but an earlier diagnosis and earlier treatment could have made a big difference

I wish you well and would encourage you to read Kate Gilbert's great book Polymyalgia Rheumatica and Giant Call Arteritis which is available on Amazon. She is associated with this forum. Get yourself as well informed as you can. You are your own advocate and you know your body better than anyone. Trust yourself.

Go well.

[angiek]

Thoroughly fed up! The telephone call from the GP ( my surgery has a system whereby you ring and then a GP rings you back to make an appointment, if they deem it necessary) did not even lead to a face to face appointment, she has referred me to Rheumatology, with no indication of how long I will have to wait!

She repeated that "your ESR is only 17 which means it is not PMR/GCA". I told her (twice) that I had seen plenty of evidence to suggest that ESR is not always raised but she wouldn't even discuss it. All she said was "You wouldn't want me to prescribe steroids unnecessarily, would you?" And that was that.

I can ring the surgery office to see if they have any idea of how long I may have to wait for an appointment- I will have a choice of Ipswich or West Suffolk hospitals. I live on quite a tight budget but am thinking I may have to go privately- any recommendations in Ipswich/Bury St Edmunds areas of Suffolk?

[PMRpro Ambassador in reply to angiek]

Southend is top dog in your general area. Prof Dasgupta's group. You could ring the hospital and ask what the waiting times are and I'm fairly sure Dasgupta does private but I have no idea what he charges. If I remember rightly, Chelmsford is not to be recommended. You may be referred to Southend if that is your choice - it is your legal right in England:

nhs.uk/NHSEngland/patient-c...

Here are a few references about normal bloods in PMR - she sounds totally arrogant but printing out these and showing them to another GP in the practice MIGHT achieve something:

Polymyalgia rheumatica with normal erythrocyte sedimentation rate: clinical aspects.

by Martínez-Taboada VM

ncbi.nlm.nih.gov/pubmed/109...

and uptodate.com/contents/clini...

mentions the normal bloods in Laboratory findings.

And actually - yes, I DO want you to try a week of pred to see if it helps me. As described here:

rcpe.ac.uk/sites/default/fi...

which your GPs may also find handy for their bedtime reading. If it doesn't help at all there is no need to continue - but you need to have the option to try that.

[angiek in reply to PMRpro]

Thank you again PMRpro, I am going to try and get an actual face to face appointment with a different GP at the practice, and I'll print out the info you sent me to take with me.

[Scarter]

Hello

Had you taken a shingles shot prior to the shingles event? I got PMR shortly after a shingles shot and wondered if it contributed to it. No one knows. Your symptoms mimic PMR right down the line. Try to find a doctor that understands this condition if this one doesn’t. Headaches are a symptom as well. Weakness is a symptom . I hope you find good care soon.

[angiek in reply to Scarter]

No Scarter I hadn't had a shingles shot, in the UK I think we have to be 70+ ?

I think maybe as I had already been feeling quite low/tired with muscle pains etc the Shingles virus took advantage of my immune system being weak? (Although I had been using Kefir for a few months which should have boosted my immune system) Unfortunately I think my GP has forgotten that when I presented with Shingles in October I had already been suffering muscles pains since August! Am going to attempt to get an appointment, face to face, with a different GP and armed with printouts from links that PMRpro has sent me.