Could it be Polymyalgia?
Posted , 57 users are following.
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.
4 likes, 147 replies
Valdo1289 Lesley998
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EileenH Valdo1289
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https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316
If you follow this link you will find a lot of information about polymyalgia rheumatica - have a read and see if you fit any of it. Starting with the heading "Bristol paper" you will find various papers that describe PMR.
Basically, the symptoms of PMR are stiffness in shoulder and hip girdles, morning stiffness that lasts at least an hour - but most of us would say all day, or returns after a brief period of sitting. You may have hot sweats, fatigue and feel generally unwell, Typically, patients cannot raise their arms above shoulder height and find difficulty standing from a chair or to get off the toilet. In 80% of patients the sed rate and CRP (C-reactive protein, both indicators of inflammation in the body) are raised but that is not an essential - the other 20% have normal levels.
Most of us find no ordinary painkillers help but some find they take the edge off. You say you have been vit D deficient in the past - being out in the sun isn't a guarantee you aren't deficient as the mechanism that makes vit D in the skin becomes less efficient as we age and a large percentage of the population is low on vit D. It can cause similar symptoms so I hope they do check it.
The link I gave you is the "front page" of the forum - scroll down and you will find a list of the threads which you may find helpful. At the side of the page you will see Related Information - also useful maybe.
I don't know how many replies you will get - this is, as you noticed, a very old thread and many of the contributors are no longer on this forum.
Valdo1289 EileenH
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EileenH Valdo1289
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eileen11130 Lesley998
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EileenH eileen11130
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What you describe is either not PMR or you are simply not on a high enough dose to manage the symptoms. There is no virtue in being on too low a dose - it achieves nothing to balance out the downsides of pred.
rosemary25383 Lesley998
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I recently joined this website to join another forum for Primary Hyperparathyroidism (PHPT) and I saw this one - PMR is what I was originally diagnosed with - and it turned out to be WRONG.
In answer to the discussion question "Could it be polymyalgia (PMR)" - can I just throw this out there - yours may not be either.
It could be this disease called Primary Hyperparathyroidism.
I will tell you my story in a nutshell.
I had very similar and some identical symptoms to other people on here. They started very suddenly in my very early 50s and long story short, my Rheumy said although I was really too young to have PMR, that's what she said it was and put me on Prednisolone with resulting awful side-effects. I did have a high ESR and CRP but these blood tests are non-specific and I have often had a high ESR many years ago with little consequence.
Long story short, after getting so much worse to the point of not being able to even get out of bed, on further blood tests they finally discovered I had high calcium together with a high PTH (parathyroid hormone level) which meant that
I actually had a disease called Primary Hyperparathyroidism. There are 4 tiny parathyroid glands behind the thyroid which regulate calcium tightly in the body and the disease occurs when one or more of these glands develops an adenoma (a benign tumour) which produces too much parathyroid hormone and this hormone takes excessive amounts of calcium from the bones and puts it in the blood which causes all the terrible muscle aches and joint pains, flu-like symptoms, and many other symptoms.
There is a forum called Thyroid and Parathyroid problems on this Patient website and if you look on there, you can compare notes with other sufferers (including myself). This parathyroid disease (PHPT) is also often mistaken for Fibromyalgia. Prednisolone did improve the pain at a dose of 5mg and upwards, but below that it had no effect at all and neither did Paracetamol or Ibuprofen ever provide any relief.
If you get your calcium and PTH tested and both are above the normal range, then it is very likely you have PHPT which is a very underdiagnosed and misunderstood disease which is often mistaken for PMR and Fibromyalgia and also depression because the calcium affects the cental nervous system (inc the brain) and causes depression-like syptoms as well as memory loss and poor concentration, heart palpitations and many other symptoms. PHPT ALWAYS leads to osteopenia and then osteoporosis over time and severely affects the musculoskeletal system and muscles.
I tried not to make this too long but it would be wise just to check you don't have high calcium and a high PTH (in a small no. of cases it can be high normal and still be PHPT), as those 2 high levels together almost certainly mean you have PHPT.
My symptoms started to improve almost immediately after the adenoma was removed and over time most of my symptoms (esp the joint and muscles aches and pains) have more or less gone and I feel soooo much better. Now if I take a Paracetamol or Ibuprofen for any pain or muscle pain - it works!!
PHPT mainly affects postmenopausal women but does also affect men and younger people but to a lesser degree.
If you look up parathyroid disease on the website, it will give you lots of info, esp one particular site which gives a lot of educational medical information about PHPT.
I hope this information helps at least some of you and I hope you will all be feeling better soon, I know only too well just how painful all those symptoms are. Be sure you have the right diagnosis.
Kind regards.
Rosemary25383
rosemary25383 Lesley998
Posted
I am new here and just typed quite a long reply which seems to have got lost in the ether (or has got stuck with the moderator for some strange reason).
I had all your symptoms and was misdiagnosed with Polymyalgia when what I really had was Primary Hyperparathyroidism (a high calcium and high PTH (parathyroid hormone) which caused all the symptoms some of you have and more.
PHPT is sometimes mistaken for Fibromyalgia as well.
You can see the symptoms for this and lots of educational medical info on the webside for parathyroid disease.
It mainly affects postmenopausal women but to a lesser degree also can affect men and younger people.
There is also a lot of information about it on the Patient Thyroid and Parathyroid forum including my story of being diagnosed with PMR when it was in fact Primary Hyperparathyroidism.
I don't know what happened to my long post just now but it looks like it has disappeared so I hope this shorter version helps.
I hope everyone here feels better soon.
Kind regards.
Rosemary25383
Riverdog rosemary25383
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I replied to Lesley becuase I have had all of the same symptoms, except for the itchiness, but I cannot ascribe it to menapausal factors because I am a man. How did your docs determine your new diagnosis?
rosemary25383 Riverdog
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Hello Riverdog, sorry for the delay replying, tried yesterday but my account was locked for some reason.
Anyway in answer to your question....My Rheumy did say she wasn't sure it was PMR and gave me steroids anyway! Primary Hyperparathyroidism (PHPT) which is what I actually had, has 21 different symptoms and some of them such as joint and muscle aches overlap with menopause symptoms but men can get muscle and joint pain with PHPT. I lost lots of calcium from my bones (got osteopenia, almost osteoporosis) and I actually broke 3 of my teeth! I mentioned this to my doctor who said "we had better do a calcium test" - which came back high, and then she said we need to do a DEXA bone scan - which showed my bone loss. The steroids made this bone loss worse, they gave me large doses of calcium + Vit D with the "PMR" when I already had far too much including a high PTH (high calcium and a high PTH level almost always means you have an adenoma on one of the 4 parathyroid glands (PHPT). My doctor stopped my calcium immediately and then I was sent back to the Rheumy. I'm in the UK (sadly docs don't know much about PHPT, neither did my doc) so I went to the specialist centre in Florida and had my adenoma removed. I'm now almost 100% better, just need a bit more calcium in my bones which have greatly improved in the 3 years since my op.
Crucially, whilst erroneously on Prednisolone, I found that when I reduced (very, very slowly), eventually down to 5 mg, all the aches and pains returned so I upped it to 7 mg and it was enough to just MASK the pain/problem so I could get the flight to Tampa (I thank God I did). High calcium + high PTH always always = PHPT (although some people sometimes can have high normal but still have a tumour, and one or 2 other variations, but most of the time it's those 2 blood tests done together which is when my Rheumy said I probably had PHPT not PMR but by then I had booked my flight to Tampa!
I hope that helps, if you have any other questions I'd be happy to share. Best wishes.
Rosemary
Valdo1289 Lesley998
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rosemary25383 Valdo1289
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Hello Valdo1289
I'm glad my info got through as it may well help you or someone else.
I have just spotted your other posts, I hadn't seen those before I sent mine.
Regarding a low Vitamin D, most people with Primary Hyperparathyroidism have a very low Vit D count due to the fact that when you have a parathyroid adenoma the body deliberately lowers it as a protective measure. Some people of course do have a low Vit D in this country due to lack of sun but it is very prevalent in PHPT. Giving Vit D to people with low Vit D when they have a parathyroid adenoma just makes you more sick.
It is worth checking your calcium levels, PTH and Vit D (although the Vit D may have been forced up somewhat by the supplements) but it would be helpful to at least rule out this disease as women our age (I am nearly 58 now) are biggest sufferers although it is not known why. But people who take Lithium or have had radiation to their neck or have had Iodine 131 treatment to kill the thyroid are also more likely to get Primary Hyperparathyroidism and because so many of the symptoms can overlap menopause, Polymyalgia and Fibromyalgia it can be difficult to pinpoint the exact disease.
Hope this helps.
Rosemary25383
maria22117 Lesley998
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EileenH maria22117
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crash1949 Lesley998
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Yes, it could be polymyalgia. I've got it and it sounds like you might well too. See another GP.