Pre Diagnosis
Posted , 5 users are following.
HI there...as you can see I'm new to the discussions forum. After having aches and pains over the past few months, I've had a blood test to determine inflammation. I'd be interested in any comments re pre-diagnosis: what were you experiencing and how it was dealt with my the medics. I found out about PMR by searching for blood tests for inflammation and the symptoms do tally with mine. In a way I'm hoping something does show up from my blood test because I feel as though I'm not been taken seriously. Thank you.
1 like, 24 replies
tavidu ailsa29683
Posted
MrsO-UK_Surrey ailsa29683
Posted
PMR pain is generally felt around the shoulder and hip girdle and can occur in the groin and down the front of the thighs. It can be difficult to raise one's arms. However, people do present differently with some experiencing leg pain whilst others have just the arm pain.
The ESR and CRP blood tests are just a guide as to whether ther is inflammation in the body. However, about a quarter of sufferers never have raised markers. Some people experience night sweats and weight loss pre-diagnosis and treatment, and the majority feel very fatigued. A very common experience is having great difficulty getting out of bed or turning over because of the pain and stiffness. In PMR, this pain and stiffness can often improve during the day.
Whilst some GPs are good at spotting the symptoms of PMR and knowing how to deal with it, others have never seen it before and have not made themselves aware of symptoms to look out for. Often it is down to us to educate them!
I hope that helps whilst you await your blood tests results. Do let us know how you get on.
MrsO-UK_Surrey
Posted
erika59785 MrsO-UK_Surrey
Posted
I had to educate my Physio yesterday about PMR and showed him a printed copy of the Mayo Clinic description. He had never heard of it, and I kindly asked him NOT to have me do repetetive exercises for the pain in my left arm in particular. He did ultra sound and heat for the lower back. It did help some, but of course I am still on a burst of prednisone which is 25 mg for three days, and then to lower to 20 for a week or so, depending on the pain.
With thanks for helping us newcomers to understand....Erika
jennie34011 MrsO-UK_Surrey
Posted
I am also new to being diagnosed with PMR. Mrs O...I had all the symptons you mentioned. Mine started of with big cronic daily headaches
for which I had a CT scan..nothing was wrong. I have suffered with depression for 40 years...so the doc thought it was all down to that and stress...So Ailsa, when you say you don't feel like you are being taken seriously, I so know that feeling!! I have been on steroids for just over a week. They didn't take long to kick in. My blood tests didn't show raised inflammatory levels. So when I saw my doc yesterday, he was shocked to hear the prednisolone had worked...as he thought it was Fibromyalgia. Apparently steroids don't help Fibromyalgia.
All I know is I feel almost human again. I'm going back to work on Monday, having been off for 3-4 months. I still get the achey bits and pieces, but nothing like before. Hope sharing this has helped Ailsa?
I wish you all the best. Keep in touch.
Jennie
MrsO-UK_Surrey jennie34011
Posted
You haven't said what dose you were started on. Often with the head pain symptom, the cause is GCA (Giant Cell Arteritis) which is linked to PMR but which needs a much higher starting dose. Fortunately, whatever dose you started on it has solved your head pain which must be such a relief for you.
Be very careful to avoid stress when you return to work - it is early days in your treatment and you need to have plenty of rest and not overdo things. The steroids are not curing anything but just damping down the inflammation whilst the disease runs it course, and we have to do our bit to help by taking special care of ourselves.
I'm so glad you are feeling much better and long may that continue.
jennie34011 MrsO-UK_Surrey
Posted
Thank you for your kind thoughts. Funnily enough the doc hasn't mentioned the headaches! I'm just putting two and two together. It all came on one thing after the other. I haven't suffered from headaches before. So, I do believe they were a part of this PMR. I'm on 15mg of prednisolone a day. I do feel tired bodily, but wide awake. Strange! I guess it's the steroids?
I've been under the Rheumatologist for the past 2-3 years. He was treating me for Psoriatic Arthritis. I don't have psoriasis...my dad did. He was reluctant to label me with Fibromyalgia...wonder what he will say with PMR?? So, my problem is that the inflammatory levels don't show high in my blood tests!!! So my joint pain has been classed as "mild"...
when I know it certainly is not! Don't know if you have heard of anything like this before Mrs O?
I do hope you are ok Mrs O? Have you had this for long?
EileenH jennie34011
Posted
I had had PMR for at least 5 years before it went haywire and I could barely move. After 6 months and working out for myself what it was I saw a rheumy because my GP wouldn't accept the lack of blood markers. Neither would he - he wanted it to be anything except PMR and psoriatric arthritis was pushed quite hard. He gave me 6 weeks of pred in the mentime as I had to go to the USA and had no idea how I would manage. Six hours after the first 15mg I felt great! Said rheumy wasn't interested in that - wouldn't listen and told me he thought it was "another inflammatory arthritis". Luckily a different GP in the practice was convinced.
I'm pleased he didn't want to label you with fibromyalgia - since it was the wrong diagnosis.
jennie34011 EileenH
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tavidu EileenH
Posted
EileenH jennie34011
Posted
They more often take a temporal artery biopsy (cut out a bit of the artery at your temple) then use ultrasound, that is also a relatively new technique and not widely available except where the study for it was done. i think it is unlikely that the lump under your arm is an arteritis - but it is a bit silly NOT to ask the doctor just because he is male. They have seen it all before and it's their job. You can't say they aren't putting 2 and 2 together if you don't show and tell! It could be all sorts of things and DOES need keeping an eye on.
GCA only really is a serious concern when it affects certain arteries supplying the optic nerve and then it can affect your sight. Only about a fifth of patients with PMR go on to develop GCA and usually you get warnings with headache, jaw pain when chewing, sometimes scalp pain and finally visual symptoms. You can have one without the other in both cases and for some GCA patients they also develop PMR symptoms but not always.
EileenH tavidu
Posted
"PMR doesn't affect the legs"? Well it darn well affected mine! It is more hip stiffness that is absolutely typical - but that can affect moving your legs, you walk wrongly and that causes other back and leg pain as a result. I had thigh and calf pain, claudication, when walking or climbing stairs. That is a typical PMR/GCA symptom.
It doesn't really matter though does it - if he accepts the shoulder and arms are PMR you probably do have PMR! I do wish they'd all put their brains in gear...
tavidu EileenH
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MrsO-UK_Surrey jennie34011
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I spent a year in agony, undiagnosed by GPs or my first rheumy. If, like you, a family member had ever suffered with psoriasis, then I would surely have been labelled as having that, as that is the only question my first rheumy asked. I wasn't diagnosed until a year later when the symptoms of GCA joined in the 'fun' with what the previous year had been PMR, and that diagnosis was suggested by a pharmacist! Happily my first dose of 40mg of Pred proved successful in just a few hours and the very worst symptoms of GCA disappeare as if by magic. Even more happily, both conditions went into remission just over 2 years ago. It did take 5-6 years to resolve but everyone is different in the way they illness present and their response to the treatment.
As for you describing feeling "bodily tired, but wide awake", that isn't at all unusual. The starting dose of steroids can give us a 'high' but at the same time can disrupt our sleep. That is why it is so important to try and set aside some time during the day to have a catnap. Both the inflammation of PMR and the steroids can contribute to the tiredness/fatigue - again rest whenever you can
Many people we have come across who are at working age when this condition strikes have found they have to stop work for a while in the early days and/or return to work on a part-time basis when they start to feel better, gradually building up their hours.
You are not alone in having PMR but having blood tests which fail to reveal any raised markers - just over a quarter of sufferers never has raised markers. It's a pity that your medics obviously weren't aware of that fact, and with your Dr not commenting on the headaches, I wonder if he is even aware of sudden onset severe head pain raising the possibility of GCA? Probably not if 3 of my GPs failed to find an answer!
Symptoms to look out for in GCA are severe head pain, often around the temple area, and tenderness over the scalp; jaw pain when chewing; and any visual problems, such as blurriness or pain. Often if GCA is suspected, a large dose of steroids (40mg and above) will be prescribed and immediate referral to a rheumatologist arranged,who will usually carry out a biopsy of the temple area to look for any large cells indicative of GCA. However, it is possible for any large cells to escape the tiny portion of artery removed. GCA can also affect other arteries in the body. Jennie, you should not dwell on any of this but just remain alert to the signs, especially as you are having such a good response to your 15mg starting dose. So enjoy the moment!
jennie34011 MrsO-UK_Surrey
Posted
It makes such a difference when we learn what we are dealing with.
I always say, if we know what we are dealing with we will cope. It's the NOT knowing that is the problem. And, like you say being aware of signs.
I Wish you both well & will keep you posted.