Could it be Polymyalgia?

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

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

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 theyspend 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 ofgetting 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.

good for you and good luck carolk

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

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

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 )

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

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.

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.

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

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