Undiagnosed

[Lseen]

Hi All

I have not been diagnosed (I did overhear the doc mention PMR while looking at the computer screen and looked it up).

I started getting extremely sore around the neck, shoulders and jaw about a week after starting on heart medication a couple of months ago. One of my practice docs tried to assure me that the symptoms where absolutely un-connected. She was very patronising and made me feel so stupid, I forgot to ask for my prescription for heart tabs!!! I just wanted to get out of there.

Hmmm! All parts of my body are definitely connected and serviced by the same bloodflow, just saying.

Anyway, the muscle pain goes right down the inside of my arms (as if I'd been throwing darts or similar) and down my back to about waist level, comes around my ribs and hits my thighs - although leg pain not so acute. I also have had some pain in my lower abdomen which affects my bladder and have had the odd little mishap.

The pain is much worse in the evening with me and during the night.

I wake up so often I wondered if I have slept at all!

I have to 'carry' my breasts when I get up after lying down as the shift in gravity seems to particularly affect me. It often feels as if the skin is trying to pull free from my breast bone. Ouch!

After a few minutes upright I feel 90% better. Physically. Although I do feel very tired and have overslept several times lately. At the same time, I don't appear to have lost any strength - I can still lift my 2 year old grandson with no problem!

I really don't want to take Steroids as the side effects appear to be more problematic that the illness!

Firstly, do you think I definitely have PMR? Or is it just some kind of neurosis - a figment of my imagination?

And secondly, does anyone know of any proven alternative treatments?

Help!

Lseen

[SheffieldJane]

Hi Lseen

I was diagnosed with PMR in March of this year. Blood tests will show raised inflammatory markers, but the best indicator is your symptom picture. I recognise everything you describe including the breast thing that I hadn't connected before. I did get to the stage where I couldn't lift my toddler grandson, he was very interested in the oofs of pain I uttered when trying to. I care for him three times a week.

I was prescribed 20mgs of Prednisolone and with great reluctance started to take them. Within 48 hours I was pain free and felt strong, a persistent low mood lifted and I felt better than I had in years. I was on a ( slightly giddy) high for about 6 weeks. I feel more normal now and some of the drawbacks of this steroid drug have become apparent e.g. Insomnia, upset tummy, greedy appetite ( chocolate monster) hypertension etc.

No there isn't really an alternative at present. Strict self care, pacing yourself, plenty of rest, avoid stress, good diet, vit. D and Calcium supplements. You can't soldier on untreated, it's harmful and dangerous.

You may be lucky and the condition burns out ( with the Prednisolone controlling the inflammation) in a couple of years. Doctors will be keen to get you off steroids (really gradually, advice available on this great website) as soon as the inflammation is under control.

As for your patronising doctor, we've all been there, I think this is a condition some doctors are insecure about. We need to become well informed intelligent patients. There is a lot of knowledge and wisdom on here.

Sorry for the essay, you reminded me of where I was a few months ago.

Wishing you well, whatever the outcome. Get a blood test and get researching.

[HeronNS]

Did any of the doctors have any other explanation for the symptoms? Are they possibly side effects from your heart medication? I hope it's something easily resolved. But as Sheffieldjane says, taking a steroid for PMR is not the end of the road. It can usually be managed well, and the miraculous vanishing of pain is truly remarkable!

[PMRpro Ambassador]

It could be PMR - but none of us could say that for sure. Jane mentions blood tests - they aren't entirely reliable, for 20% of us they aren't raised. And I don't think it is "all in your head" - and most of us have had that insinuated!

When you were put onto the heart medication - did they also put you on a statin? If so, which one?

However - for most of us the pain and stiffness (which you don't really mention) are worse in the mornings and through the day, easing somewhat as we get moving through the day. Is there any particular pain that is worse at night? Something that can appear very similar to PMR but is accompanied by nocturnal back pain is ankylosing spondylitis. If you recognise any of this:

"Typically, inflammatory back pain:

Starts before the age of 40 years

Has been present for at least 3 months

Has come on slowly over time

Is worse in the mornings

Causes stiffness in the mornings lasting for at least 30 minutes (stiffness is perhaps best described as the sort of aching you get the day after heavy exercise)

Improves with exercise, and is worse with rest

Improves with anti-inflammatory drugs (e.g. ibuprofen)

Can wake people from sleep, often in the second half of the night

Can often cause pain in the buttocks, but rarely pain shooting down the leg (sciatica)"

then ankylosing spondylitis of some form should be considered. The one thing I find strange there is the "under 40" bit - rheumies don't seem to mind age! However - if you think that sounds familiar I'd suggest you go over to the VasculitisUK and ask a question there - Keyes on that forum was originally diagnosed with PMR but after a lot of research found someone who diagnosed ankylosing spondylitis with an add-on. She is very knowledgeable about PMR-mimics.

If it is PMR then pred is the only reliable answer I'm afraid. But it isn't as bad as you think - especially when you have so little pain and can get back to a fairly normal life! Pred has over 80 listed side effects - no-one gets them all, many of us have next to none.

If it isn't PMR - well, there are a load of options depending on what they decide it is and there is no way anyone could second guess that.

[SheffieldJane]

PS I have recently had Fibromyalgia added to my PMR diagnosis which confuses my symptom picture somewhat.

Don't be palmed off. Whatever is causing your symptoms needs to be investigated. You could keep a diary of your symptoms for a week or so, with times of day, proximity to taking medication etc. I find that it helps to present the GP with a coherent story rather than the confused, complex, moan I would naturally come out with.