Could it be Polymyalgia?

Bones, joints and muscles
1

Hello all, I am new here. I am really struggling at the moment with painful symptoms and am getting absolutely nowhere with my GP. I suspect I have some sort of inflammatory condition or disease, and wondered if perhaps someone who has PMR would read my story and tell me if they think I am on the right track.

About a month ago, completely out of the blue I woke up with incredibly painful and stiff shoulders and upper arms. (I knew it was not exercise induced lactic acid muscle pain - I know how that feels, and I had done absolutely no ecercise over the preceeding days - the pain just came out of nowhere.) I found I could hardly get out of bed, and I could not lift my left arm above my head. I felt like I had been hit by a lorry. However, by the time I was moving around the stiffness had gone within about ten minutes, and the pain had lessened but I was aware of soreness in the muscles all day when ever I moved or used my arms. I thought perhaps I was getting the flu, or had a virus, or had slept awkwardly. However, it did not go away, and I have woken with this pain every day since for a month. It seems to be getting worse, spreading into all the muscles of my upper back, shoulders and arms, but I feel it mostly in my biceps and deltoids. The other day I leaned back from the passenger seat in the car to reach something on the back seat - and the pain was enough to stop my breath for a moment - a terrible pain that shot through my upper shoulder. I feel it is the muscles and not the joints. I am taking maximum dose Paracetamol and Ibuprofen in the morning and this helps the nagging, constant pain. I am aware of extreme pain with most arm movements such as wrapping a towel round me, putting on and taking off anything with sleeves...driving (turning the wheel) carrying shoppping bags, holding the dog lead at arms length. I just cannot do the simplest things without feeling pain. Some days are more painful than others and although I am not in constant pain, I have found certain movements will cause me to experience sudden pain which is really excruciating. I have never felt pain like it before, it is unlike any strain, or exercise induced pain I have ever felt.

I went to my GP two weeks ago, who told me I am 'anxious', and that aches and pains are probably perimenopausal in origin (I am 50) he really does not seem to understand just how painful this is. I am not one to argue with the doctor (yet!) so I just took his advice about 'massage' and 'relaxation' and left. I went back yesterday to see a female doctor, and told her I was feeling much worse. She examined me thoroughly (sods law I was having a good day and my muscles although sore, were pliable enough) and gave me a prescription for Naproxyn. 'Myalgia' of any sort was not mentioned. I just don't feel they are taking me seriously and I don't know what to ask them to do next

I have also been thinking back over the last year or so, and realise I have experienced a host of strange symptoms. I seem to have 'dried up'! I had painful inflamed skin on the inside of my nose for a long time - it was very irritated and dry and extremely sore - I used to rub on E5 with a cotton bud to try to get some relief. I never went to the doctor with it, as I thought it was fairly minor and was just an allergy. (This symptom has actually settled down now and I only get occasional flare ups.) However, my eyes are also very dry - especially when I open them in the morning - I get a slight ripping sensation as if the lids are stuck to my eyeball - which is probably exactly what is happening. I have been to my optician who did a little test with paper, and told me I did indeed have very dry eyes, but - because I am still producing tears - he did not refer me on to a anyone, , I was simply given Viscotears oily gel to place into the eye. Around January of this year I notoiced my mouth was also unusually dry. I find it hard to eat meals without water, and wake in the morning with my tongue stuck to the roof of my mouth. I also have a very strange 'taste' or sensation all the time. I find this very hard to describe as it is not really a 'taste'...more of a change in how my mouth feels. The inside of my lips and tongue feel irritated and almost tingly all the time. And this sounds comletely mad - but I have a genuine sensation of cool mint all the time, almost menthol, which I can feel on the surface of my eyeballs too. Almost like the sensation when you open a jar of menthol rub and breathe in the vaopur.

And lastly, I have a constant burning/tingling feeling on the skin of my face. It feels like mixture of sunburn, and that irritated nerve feeling when you are getting the flu.

I hope someone can identify with anything I have said and give me some advice. Thanks for reading.

2

I'll come back and answer more fully later but you do sound typical of someone with PMR - and you are not too young. Go to the PMR and GCA northeast support site which you will get a link to from the PINNED bit at the top of this PMR forum. The guidelines for diagnosis and treatment of PMR are there to download.

It may not be simply PMR - but it is almost certainly an autoimmune problem of some sort and it needs investigating. If your current GP won't help, find another - it is your right to a second opinion - and then demand a referral to a rheumatologist if they won't help. At worst you could have a private consultation - where do you live? If you go privately you can choose more but you still need someone who knows what they are talking about.

see you later,

Eileen

3

get arguing with your doctor or change gp i cant stand drs who dimiss things as anxiety insists on some bloods and a referral onwards , all he has to do is put you on pred and judge the reaction its not rocket science ,gather info so you are armed with ammunition to throw at him and insist something is done carolk

4

CarolK, I completely agree with you. In 2000 at age 38 , my sister went to the GP with sudden onset heart palpitations, chest pain and missed beats, and was told she was suffering from 'anxiety' and the GP would not even listen to her heart because it would 'feed her anxiety and hypochondria'. He gave her Zispin an anti anxiety drug which just made things worse. She ended up in coronary care three weeks later as an ambulance admission with a long QT heart episode (probably caused by a reaction to a quinolone antibiotic) and has been left with a left bundle branch block for life, possible pacemaker. ...if the GP had listened to her heart she could have had treatment and avoided this. (He came in to see her in hospital and apologised for not listening..she did not 'fit' the heart patient model. She told him if he listened to one other 38 year old with heart symptoms it would all be worth it)

GP's just HATE when patients self diagnose.... how dare we!! two clicks and we know it all, while they spend seven years training. Well they need to realise that time moves on, the internet is a wonderful education and resource and yes, through other patient testimony online we DO know about diseases and symptoms, we know our own bodies and if they just listened to us and worked WITH us instead of getting all huffy with us for our suggestions, we would all be on the road to getting well.

My symptoms are now much worse...I feel terrible. The pains have spread into my groins, and I just know there is something going on. I am going to go back to my GP and argue with him for some sort of investigation.

5

good for you and good luck carolk

6

Hi lesley , just read yor post with interest , have you had any blood tests to see what your hormone levels are , you could well be starting with menopausal symptoms , they can be horrendous , chronic fatique and muscle pain and joint pain , its a bit alarming that they are throwing you endless pain killers instead of getting to the root pf the problem , you could check put some of the menopause web sites , they are excellent and could point you on a new direction , obviously , you will know where you are regarding your menopause (not wanting to pry ), but reduction in certain hormones will give you all the symptoms you are suffering with , you can treat these without all these awfull pain killers , they are jot going to solve the problem , hope this info helps , also well women clinic may be of some help to you

Best wishes

Helen

7

Helen - thank you SO much for your post. I do often wonder if this has anything to do with the change...but I had never heard of joint or muscle pain being part of the menopause! I am not sure where I am actually...after a lifetime of being like clockwork, I have had two years of being all over the place and very irregular, followed by six months with nothing, followed by a very light and scant period last month. So I guess I am almost at menopause - and definitely *well* into peri which I know can last for years. I am not sure at which point your hormones (or lack of) kick in and cause symptoms! I always thought it would be at the beginning, not toward the end. I don't have, and have never had night sweats or hot flushes, but I do regularly get awful heart palpitations and adrenaline 'surges' at night which wake me up on the point of sleep. I don't particularly want to go down the HRT route but think I might have to look into it if I carry on feeling this bad. I wonder if such sudden onset and crippling muscle pain can be hormonal? I find it all so strange. Today, the pains in my groin have completely gone, and I only feel the arm pain if I use the muscles in a certain way - if I stretch my arms for instance. It has gone from being a constant acute pain to being a deep ache in my biceps which 'burns' for a moment if I move a certain way, then subsides to nothing. Oh dear...sometimes I wonder if I am over anyalysing everything - I have been in such pain, and worrying for so long I cant remember what 'normal' feels like anymore.

I have been wondering about viral myalgia...as I have felt so bad so quickly, and I have also been recently reading about Sjogrens, which I had never heard of until I came here. It can cause dry eyes and mouth which I find extremely interesting as I said above - I really feel like I have 'dried up' over the past few years, and can certainly identify with burning mouth syndrome too. I often have an odd, almost 'chemical' sensation in my mouth with a funny feeling in my lips, somewhere between burning and tingling.

I have another appointment with my GP on Friday to tell her the pains have not gone and discuss auto immune, whether she want me to self diagnose or not!! I am also going to ask about hormonal causes and ask for a blood test to see where I am.

Again - thank you so much for mentioning that this could be hormonal. It has confirmed my own thoughts and made me feel much less anxious.

Lesley

8

Hi Lesley so pleased this has been of some help , i would say you are suffering with menopausal symptoms , as , all the other things you say are indicative , try the menopause web sites google for them ,they are extremely helpfull , i am concerned that naproxen has been offered to you , this is extremely strong there are many holistic approaches you can take , and natural supplements to balance your hormones, get checked out with the doctor it may help to see a lady doctor, some gentlemen doctors arent very helpfull, but yours may be different

A series of blood tests will tell what your oestrogen levels are , when these drop , these cause all the problems you seem to be experiencing , hrt can gelp , but diet , exercise , and things like soya suupkements and some herbs , may be preferable , good luck my friend

Keep in touch

Helen ( Im not a doctor , i an an holistic therapist , spent many hours on this subject , hope this helps to track down the cause of your problems )

9

I just lost a long post - grrr!

Helen may be right or she may be wrong - your description sounds like me and it wasn't the menopause (checked out properly earlier and it was different). I've recently spent 3 weeks in hospital after an experience similar to your sister's, Lesley, also the end result of a quinolone but in my case combined with medrol which is even worse. I have atrial fibrillation, sick sinus syndrome and residual tachy/brady syndrome. Lovely! Hope you've had those symptoms checked too? But Helen is 100% right about the painkillers.

However, a simple (and recommended by rheumatologists too) trick is to try a short course of pred at 15 or 20mg (absolute max) and if the symptoms respond to 70% within a few days it is very likely to be PMR, if it doesn't then it needs a specialist as it could be atypical PMR (very likely if it is PMR as you are young) or something else amongst the range of illnesses that should be ruled out to make a diagnosis of PMR, A higher dose would cause some other things to respond too, hence the lowish trial dose, only PMR would respond so promptly to that challenge. A few days of pred to see will do no harm at all.

Eileen

10

Eileen - thank you for taking the time to come back and reply. Dont you just hate it when you type a great long post and then lose it?? I have had that happen to me so many times in forums - I hit some key on the keyboard by mistake while my fingers are flying over the keys (I am a fast typist) and the screen goes blank!! I can never remember what I wrote and get so frustrated having to start again.

So sorry to hear of your troubles...gosh, PMR and that awful reaction to a quinolone - you have had a raw deal. My sister went through hell with that drug. She was given Ciprofloxacin for a mild sinus infection, and from day one she felt ill on it, but took it because she was told to. She had all sorts of horrible central nervous system symptoms too but the heart thing was the worst. She was told the drug had done something to affect her potassium levels,(which on its own can do real harm to the body without all the other additional problems.) Then she was given Zispin which exacerbated the symptoms. Like I say, it has left her with a lifetime of cardiac issues - you wonder why these drugs are allowed to be prescribed - but of course doctors wont hear a word said about antibiotics - and rightly so for the most part they are lifesavers- but these 'big guns' fleuroquinolones are just pure poison to the body and should only be used as a last resort - in my opinion.

Anyway - I am still struggling with this pain - but the naproxyn is certainly helping hugely. I wonder if it is actually originating in the joints. I don't know how to differentiate between joint and muscle pain. The muscles are definitely involved too...but the pain my my biceps has now receded a little, and I feel it in more now mostly in my shoulder and elbow joints. My left elbow is popping and clicking constantly, and is very hot. My hips are sore too. I am no wondering if it could be plain old arthritis.

I am getting really confused now trying to diagnose myself (and believe me, I have been sat here every day for about a month looking it all up until I am dizzy...(I have a lot of symptoms that fit a lot of conditions, from PMR to underactive thyroid, to even more sinister and worrying diseases) I am frantically hoping it IS something to do with meno so I can see light at the end of the tunnel. I am going to ask the GP on Friday for a full thyroid blood test, a hormone test and an ESR. I will also ask her about trying the steriod for a few days...but I have to say I am terrified to go down that route. I HATE the though of steriods. I know they can be a lifesaver in PMR and I of course I will take them if I have to..but I don't relish the thought.

Thanks again for your input - made a lot of sense to me.

11

Just to add...i feel very stupid, but I just looked at the box more carefully and it is actually NAPROSYN I am on..not naproxyn! I don't know how I misread it, I must have have the word naproxyn in my head. Not sure if that is a less strong drug, or if the two are the same...but it definitely works for the pain.

12

Has late onset rheumatoid arthritis been considered? In your 40s is a common time for it to start, it may appear very similar to PMR and can typically flit from place to place all over your body. I only ask as I was talking to someone the day before yesterday with what is almost certainly LORA, responding very well to plaquenil, and her description was so like yours.

Just6 back from a holiday and catching up ;-)

Eileen

13

Hello again Eileen, hope you had a relaxing break!

My joint pain has started to fluctuate a little over the last few days. I am still waking up with very stiff and painful shoulders and arms every morning, but I had two days of feeling nothing during the day, and I began to relax a bit - then today I have had an awful time of it, with acute and searing pains in my shoulder joints whenever I make certain arm movements - like putting arms in or out of sleeves, arms behind back to put a towel round me - even stretching into a cupboard etc.

I did go back to the doc on Tuesday past. I am told it is unlikely to be PMR as the pain was not typical (according to the GP, it is originating in the joint rather then muscle.) However, he did order a sediment blood test to see if there was inflammation, and we discussed Sjogrens. The other thing he mentioned was it could be something viral or bacterial which has affected the joints (reactive arthritis?) and the blood test might pick that up too. Apparently 'Parvo' is doing the rounds at the moment, and it and Rubella can both cause joint pains in older women with no other symptoms. It's funny - because I have since been thinking about that (and googling it of course) and I remembered about a month ago I genuinely had a really strange rash on my face - I was at the dentist, and I remember looking in the mirror in the hall on the way out at my front teeth, and noticing my face was really red. Then I really noticed it again on the drive home. It was not spotty or anything, but my whole face was really red and flushed like sunburn - but it stopped at my chin, like a red tide mark - it did not go down my neck or anywhere else. Could be a coincidence - but Parvo is also known as 'slap cheek'!

Phoning for bloods results on Monday so will let you know.

Thanks for help and advice.

Lesley

14

Hi Lesley

I'm late joining in this thread but having read your original post, I believe your symptoms strongly suggest Sjogren's Syndrome. You need certain blood tests (ANA?) to either confirm or rule this out.

I suffer from PMR and GCA but was diagnosed with Sjogren's about 18 months ago following a severe throat infection that left me with long term swollen neck/salivary glands and all the symptoms that you describe including dry mouth, with my tongue sticking to the roof of my mouth during the night. As the blood test results came back negative, the diagnosis was later changed to Mickulitz's Syndrome (a very close relative of Sjogren's) although I have since discovered that the tests are not foolproof. However, unlike Sjogren's, Mickulitz's Syndrome can eventually resolve itself, and happily for me all the dryness did resolve within about 6 months but the glands do still swell on and off. Apparently when you suffer from one auto immune disease it can be easy to succumb to another.

Do hope this helps and you get a definitive diagnosis and the relevant treatment soon.

15

Hello Lesley, My name is Brian, the symptons you are having indicate P.M.R. I started with pains in my lower back and back thighs. I went to the Docs who suggested it was the seats in my Fiat car probably causing these pains. He gave me paracetamol to see how I went on. This was in August 1997. About a month later, a Sunday afternoon, I cam down from bed at 2pm, I was due to visit my father. Truing to get my shoes on left me frozen unable to move, so much so the emergency Doc was called for. He could not diagnose the problem and .I was in hospital by about 4.30pm ii took 3 weeks to diagnose what I had, and immediately I was given 44MG of steriods. Within an hour it was as though I had never had the pain. Since that time I have had heart bypass, two new knee replacements, bone density problems Osteoarthritis, Osteoporosis. and Type 2 Diabetes. All because of P.M.R. I now take 5mg a day, just upted from 4mg because my PMR is acting up again. I have asked my GP and Hospital staff to what readings of the E.S.R. is relevant to the test with no satisfactory answer. I am told that normally anyone picking up P.M.R can usually be reliefed of it within 2-5years, sadly I am one to whom it will be with me until death. Please feel free to ask me any questions

16

Thanks you MrsO and Brian for your replies. I am absolutely gutted today as I phoned the surgery this morning and my blood results are completely 'normal' according to the receptionist. I asked to speak to the doctor, and he phoned me back half an hour ago, and simply told me again that all of my blood tests had come back within normal range. I explained that I was still in constant pain and he advised me to make another appointment to see how things were in a week - meantime he has prescribed amytriptilene for what he now thinks is 'nerve pain'. (I can understand how you might get one trapped nerve...but in both your shoulders, and elbows at the same time??)

I just don't know what to do or say to them next. How do I make them understand how painful this is and how worried I am..? Pain like this is just not normal, and I don't know how long I can try to carry on as usual - even making the beds today had me almost weeping. I just feel so frustrated and upset.

Can I make a private appointment with a rheumatologist to discuss my worries about auto immune? Is there any point if my bloods don't show inflammation?

Thanks for listening.

Lesley

17

it is possible to have pmr with bloods in the normal range, the diagnosis of pmr is not dependant on blood results alone but your rapid improvement on taking steroids carolk

18

Lesley - as Carol has said, some people do have normal blood markers in spite of eventually being diagnosed with PMR. Likewise, with Sjogren's but the blood tests are different - they are called anti-Ro and anti-La. Do you still have the very dry mouth and dry eye symptoms - if so, then this does point more to a diagnosis of Sjogren's which can also cause arthritic-type pain in the body. I am horrified when GPs prescribe medications for what they just "think" might be a certain condition. Perhaps there is another GP in the practice who is a better listener! I have come across a few people who in your position sought the advice of a rheumatologist privately with great success. We shouldn't have to but it's worth it for peace of mind. Good luck.

19

Lesley: Ah well - what is normal? According to the books the "normal" range for ESR found in the general population is up to about 40, but all that means is that people can have any reading between 1 and 40 without necessarily being ill. I have a reading that is consistently below 10, usually between 4 and 7 - even when I can't move because of the PMR pain. About 1 in 6 of patients have a perfectly normal set of blood readings and this is more common in younger patients - which you are. The response to a dose of about 15 to 20mg of pred is often taken as confirming PMR if you get a very rapid response, it isn't 100% certain but very suggestive. For other things you tend to need a higher dose and the response is slower.

You doctor hasn't said it but he probably is classifying you with the people who have fibromyalgia which often responds to amitryptiline - but there are actually also criteria for that diagnosis too. He is wrong about joint pain - bursitis and tendonitis/synovitis are also common in PMR and I had horrid pain in finger joints and elbows, both consistent, ongoing pain and sharp stabbing pains associated with certain movements. His "nerve pain" isn't in the sense of trapped nerves. What he is very wrong in doing is dismissing you as "hysterical" or "psychosomatic" and I'm using that in the proper medical sense.

You have a right to see any doctor in your practice - maybe another might take the time to listen. You can go privately to a rheumatologist but even then you usually need a letter of referral from your GP, it depends. However, it is your right to be referred to someone and in this case a rheumatologist is the right direction - but on the NHS it could take up to 3 or 4 months (or more since the current gubmint removed the targets).

And whilst it pains me to say this - are you in a relationship? Take your other half with you. It is amazing what the presence of a man does to the hearing of some doctors when faced with a "menopausal woman". I was told that for 5 years too as my symptoms started when I was in my early 50s and I can really empathise with the feeling of being close to tears when faced with a task that suddenly is beyond you, especially bed making. And frankly - if he's classifying you with what he sees as middle-aged women with problems, take advantage of it. Take the OH and don't even try to hold back the tears. Write down the course of what has happened, take it with you and stick to your guns. MrsO who has replied suggesting it could be Sjogrens ended up in a wheelchair being taken to hospital by ambulance for appointments because she wasn't listened to before finally being diagnosed. You are not on your own in feeling ignored, many of us have been there.

Where do you live? If you go over to the other forum, the northeast PMR and GCA support group one with a link at the top of this discussion, there are contacts for support groups in various areas and people mention particularly good or bad rheumy departments. We are not allowed to recommend specific consultants but people will send a private message suggestion of somewhere/one worth trying.

Eileen

20

Your post above made me well up a little - at least someone understands my position! I wish doctors would come on here and read some of these posts. I honestly came away from my GP the other day - in considerable pain - but feeling like an over anxious malingerer. Its a panicky sort of feeling too - I mean, if my own GP (who is supposed to help and support) either doesn't believe me, or simply doesn't know what is going on with me - where the hell do I go next with this. I can't live with this pain for the rest of my life. Every morning I wake up and it is a little worse, and I can't get rid of that feeling of dread when it dawns on me that it hasn't just 'gone' over night as quickly as it came like I hoped, and it probably wont.

I know my GP has me down as the hormonal, anxious sort. He is always a bit patronising and has asked more than once if I have been 'googling' my symptoms because I seem to know too much!! I get the feeling that if I ask for steroids (ie diagnosing myself with PMR) just to see if there is any improvement like you say - he will say no. I brought up the subject of PMR and Sjogrens at my at the previous appointment and he dismissed the idea then - and my range of motion in the surgery and the latest bloods results won't have changed his mind - he was quite definite on the phone that he thinks it is nerve pain.

Will take your advice on taking the OH (although I wish I could take someone from the forum! and will look at the links for a rheumy as I think that it what it is going to take.

Feels like I am in it for the long haul. sad

Thanks again

Lesley