Showing all the symptoms of Polymyalgia, still waiting to be officially diagnosed after 4 months of unbearable pain

[Pebble1]

I started having severe pain in my arms, shoulders and fingers in May. Saw GP after 4 weeks as the pain began to spread. She immediately said Polymyalgia, which I had never heard of. Had two negative blood tests, she then decided it was Osteoarthritis and prescribed Naproxen, which didn't touch the pain at all. Began to research both, and made sympton comparisons which come out as 80% polymyalgia 20% osteoarthritis. have been reading the book by Kate Gilbert, and reading posts in your forum, I have never been on a forum before. I am a 65 year old female. Am taking 400mg doses of Ibuprofen through the day and Co Codamol at bedtime which I take for a long term back problem. They don't really help, just take the edge off. I wake between 3 and 4 every morning needing more painkillers. Can't move in the morning, my husband has to get me out of bed, my Arms are stuck rigid with pain. Shoulders in agony, collar bone, shoulder bones, lower back, outer sides of both legs, buttocks, can't sit without pain after 5 minutes, carry a cushion around. I also sweat profusely out of my head, and have had a hoarse voice for the past 2 months. I keep losing my concentration. Last saw GP 4 weeks ago, broke down in surgery, she decided to refer me to a Rheumy. So far heard nothing, I managed to get through to secretary after hours waiting in queues on phone line, she said there was a six week backlog and as my GP had only referred me as routine I could be waiting longer. Have made another appointment to see GP on Wednesday, facing a long car journey in 3 weeks, dreading it, need proper pain relief, I have the impression she is not taking me seriously, doesn't quite believe me, thinks I am exaggerating the symptons, possibly an 'hysterical elderly woman' which I am definitely Not, I am usually quite laid back! I feel helpless and at the mercy of the medical profession and their lack of understanding. Thank you for listening.

[Lainie44]

I am so sorry for your pain and your treatment. It is so frustrating not to have a diagnosis. I have not received a definitive diagnosis, but like you have all the symptoms and have purchased a copy of Kate Gilbert's book which I find very informative. It explains why I have so much pain at night and feel so awful in the morning. By about noontime, I feel somewhat human. My pain is centered in the "pelvic girdle" as Kate puts it; mine is in the very lower spine, the tailbone. It hurts so much to sit, turn over in bed, etc. The extreme exhaustion is so debilitating. Now the rheumy has sent me for all kinds of x-rays and lab tests for rheumatoid arthritis. I do not have rheumatoid and have been tested for that a few times before and I told her that. The doctors do not seem to be educated about this disease, and we pay the price. Also, it is not a "cookie cutter" disease, meaning that everyone has differing symptoms and pains. And as you know there is no definitive test for it. All that makes it very confounding, not only for us but for them. Do hang in there and know that many others are in the same painful situation.

[PMRpro Ambassador in reply to Lainie44]

Having a "negative rheumatoid factor" result doesn't rule out RA - it merely means it is what is called sero-negative. Being sero-positive can sometimes rule OUT possible illnesses. Not as simple as it seems!

[PMRpro Ambassador]

Take your husband with you - that often concentrates a GP's mind. It shouldn't make a difference but it does.

And she cannot say "the tests were negative" - there is no test for PMR, it is a clinical diagnosis based on the symptoms. The blood tests are for what are called "acute phase reactants", better known as ESR (erythrocyte sedimentation rate, the speed with which red blood cells fall to the bottom of a tube)) and CRP (c-reactive protein), which are raised due to the presence of inflammation in the body and the production of certain proteins. One in five patients with PMR never develop this response - and their ESR and CRP remain within the normal range. They are merely another piece in the jigsaw.

She can also try a test of a week of 15mg/day prednisolone - if it is PMR that should achieve a striking improvement in the symptoms within that time which then return in the same time frame when the pred is stopped. The usual criterion is a 70% global improvement in symptoms. There is no reason at all why she can't try that - as described in this paper:

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

Quick and Kirwan do suggest that the ESR/CRP should be raised and if they aren't then the patient should be referred to a specialist. However - there is no reason at all why she can't try that in the meantime. If she can't be bothered to take her patient's word for the degree of pain and disability she should have referred you as at least "urgent" - even that takes 3 or 4 months these days. Routine can be far longer.

I would probably have had a fit of hysterics at such an uncaring attitude! I would also ask to see a different doctor.

[piglette]

It reminds me so much of my symptoms pre diagnosis apart from the hoarse voice. As PMRPro says try and get your GP to allow you a week's trial on prednisolone (steroids) if they work it is often pretty miraculous the improvement. As you say it could take ages to see a rheumy and you may be suffering pain when it could be so much improved. Good luck.

[PMRpro Ambassador in reply to piglette]

I had the hoarseness - stopped me singing in the choir!

[Celtic PMRGCAuk volunteer]

Pebble1, I have been exactly where you are now and I do so sympathise and empathise with what you are going through. I spent 4 agonising months during my first year of non-diagnosis stuck in bed except for travelling to occasional rheumy appointments by ambulance and wheelchair. Although I didn't know at the time, all I needed was a 15mg trial dose of steroids to give me back my life but it took a whole year and the arrival of GCA before I eventually received a diagnosis and 40mg of Prednisolone to work its magic.

I really feel for you if you have to suffer this dreadful pain a day longer - if it was me, I wouldn't wait for Wednesday's appointment but would ring on Monday and ask for an emergency appointment preferably with a different doctor, hopefully one who will prove more knowledgeable......and take you seriously! Good luck.

[greenheath]

My goodness. Everyone has a different tale to tell, but your GP sounds like an amateur. I well remember that pain. When I was at your stage, I insisted that the GP referred me to a private Rheumy and I was diagnosed two days later.

You might need 2/3 appointments for blood tests and confirmation, of course. If you can afford it or have any insurance, suggest you do the same. It's worth the money. The longer you wait, the more pain, anxiety and problems you'll have. I am still with the same Rheumy, who now sees me at his NHS clinic at a local hospital -- albeit without the same degree of welcome and politeness!! Which I find disappointing, but at least I'm being properly treated. Good luck.

Greenheath

[moskin]

Hello,just a suggestion.I am a 71 yr old practice nurse with P M R for the last 2 yrs.

I sympatise with you not getting tosee a rheumatologist,itcertainly soundslike PM R.

Why dont you get a private appointment ,if funds allow,about £ 150 ,you will thenget the answers and go nhs after this,it will be worth it

[Jora]

You have my empathy. Two years ago, aged nearly 70, I was in agony. In my case, it was the shoulder girdle and knees. I had difficulty in swallowing and could barely move across the bed .going to the loo was agony and a major engineering feat! I had terrible night sweats and a slight fever. I managed to get to my.GP, but only saw a locum. She said she would refer me to NHS rheumatology, but warned me that it would mean a wait of about 8 weeks. So, I invested in a private consultation. The locum begrudgingly wrote the referral. I asked her to refer me to the NHS clinic in the meantime as I knew I wouldn't be able to afford ongoing private treatment.

The consultant diagnosed polymyamgia rheumatic a and gave me an immediate steroid 160 mg injection. He wrote to my GP, suggesting that I had a comprehensive range of tests pending my NHS appointment, and a follow injection In Two weeks' time.. He also said that rheumatoid Arthritis was an alternative diagnosis. My ESR and CRP came back as sky high and my Anti CCP was off the chart. I was taken into hospital for a few days. I think I exhausted the NHS'srepetoire of tests including MRI, C Scan, X-rays, echocardiogram and an armful of blood tests . The final diagnosis was polymyamgia-onset Rheumatoid Arthritis. In order words, a double whammy! Basically, I'm treated for RA - methotrexate, Prednisilone and a biological - but if the steroids are reduced below about 10 mg, the polymyalgia rears its ugly head.

If you can afford a one-off consultation, I would grab that, making it clear to the consultant that this is what you are doing. And asking him/ her to recommend tests pending the NHS giving you an appointment. That speeded up the process considerably.

Do let us know how you get on.

Jo

[Lyn_seaside]

Missed this but had to chime in. It took four months for my diagnosis (I wasn't in as much pain as you describe, but felt as though I'd aged 100 years in a week when it first started). I was put on a trial dose of Pred, on the basis that if it worked it was PMR, if it didn't, it wasn't. I took 15mg of Pred at 11.00 when I came out of the surgery and by 3.00 I could touch my toes and felt normal again. That was in March and I'm down to 5mg now and apart from tiny niggles have been pain-free ever since. Strongly suggest that you ask if you can try Pred for a week, you'll soon know. Really hope it works for you. Keep us posted.