Is it Fibromyalgia or Polymyalgia

[Kiasoul]

Hello my name is Linda I am 61 and for years I have been having a great deal of pain in my joints and muscles, my doctor has given me 30mg of co-codamol and 25mg of Naproxen and basically said it is age related. I have been looking on the internet and have come across polymyalgia that seem to fit with what pain I get, it tells me I can have a blood test that with tell you what inflammation you have. I am going to the doctors to request a blood test, was just wondering if anyone has heard of this.

[Mdaisy]

Welcome to the FMA UK Community Kiasoul !

This post might be of interest to you Polymyalgia V's Fibromyalgia;

healthunlocked.com/fibromya...

As a newbie I noticed your post is not locked to the community, on the whole members prefer to answer locked posts and this generates more replies. If you'd like to lock your post, here's a link with the information you need;

healthunlocked.com/fibromya...

Wishing you all the best

Emma

[Kiasoul in reply to Mdaisy]

Thankyou for your reply

[Dizzytwo]

Hello nice to meet you. welcome to our great support group. As your GP never taken any blood tests or had your joint pain X-rayed at all?

Could you maybe see a different doctor at your surgery. It may help to get a fresh input and opinion on you painful joints. I hope you enjoy the rest of your day and please feel welcomed to the group xx

Momo

[Kiasoul in reply to Dizzytwo]

Yes I have had X-ray and a scan and it came back that I have osteoporosis which he said it was age related. I have thought that I would see another doctor and request assessment on my medical history over the years to see if it is fibromyalgia has I no there is not a blood test that can tell if you have it. But the length of time I have had the pains I think they could make assessment. Thankyou for your advice and welcome so pleased to have come across this site.

[Dizzytwo in reply to Kiasoul]

Your very welcome most people get their diagnosis from a rheumatologist. I was diagnosed this way. I have had Fibro over 30 years. And 61 is definitely not old I speak from experience I'm 61 too lol xx

[Kiasoul in reply to Dizzytwo]

The way my body feels most days I feel like 80 Year old, but I am going to make appointment, hope I can get appointment in the next two weeks, will let you no how I get on.

[Collager in reply to Dizzytwo]

Hi.. I was initially diagnosed with fibromyalgia by a Neurologist on the phone, who sent me for various tests, an MRI & 13 blood tests. I then had a face to face appointment with the top Neurologist for the results, she confirmed Fibromyalgia & other problems. She was understanding & very supportive. Unfortunately she suggested to my Dr that I also see a Rheumatologist for a final diagnosis. This appointment I had at the beginning of February, he made no secret of the fact that he didn’t believe in it, he was dismissive and patronising. After avoiding any questions about it he just gave me a booklet & discharged me. My question is are these experts being forced to diagnose fibromyalgia when they obviously don’t believe in it? Also do you know anything about Functional Neurological Disorder, the Neurologist mentioned this & asked if I’d return after I had had time to accept my Fibromyalgia diagnosis. Finally I am also 61 and I feel ancient, I’m the sole carer for my 91 year old mum and shes in better condition than I am, she tries to understand & be supportive but she needs so much help herself. x x

[Kiasoul]

Thankyou for your reply I am already thinking of asking another doctor at my health centre and ask them for assessment instead of accepting that it is my age.

[Treewade]

Hi and welcome bloods would be a great place to start get em to check your auto immune too as there's lots of those that are similar to fibro while they got the needle in an extra tube of blood would confirm or rule out loads but rhumatoligist if you can get your doc to refer you generally have a good idea what it is and can do more thorough test xxxx

[Kiasoul in reply to Treewade]

Just like to say Thankyou all for your advice it's a great place to find out what I can actually ask for from my doctor it's knowing what to request from them I feel more in control and confident to ask with the information you have given me

[Treewade in reply to Kiasoul]

It's better than being mis diagnosed doctors will generally refer you if you ask xxxxx and do test you ask for xxxx

[Kiasoul in reply to Treewade]

Hopefully will get some answers thx

[Dorimori]

Hi, i thought fibromyalgia used to be called polymyalgia??? I may be wrong, whichever way, you need to be sorted out properly. I changed my doctor a couple of years ago because every complaint I had, she put down to age. Turns out, they were nothing of the sort, and I was coping with various illnesses which hadn't been addressed! Good luck xx

[ruthmel1 in reply to Dorimori]

No they're different. Polymyalgia is caused by inflammation and can be cured by steroids.My Mum had it.Where as Fibro, as you know isnt detectable with blood tests and isnt curable. Fibro used tob e called Fibrositis.

[Dorimori in reply to ruthmel1]

Thanks, I appreciate you taking the time to reply. I'm glad I know the difference now 🤗xx

[Hidden in reply to ruthmel1]

my gran was always complaining about her Fibrositis.... now i have fibromyalgia... is there a link i wonder? my mum just thought gran was complaining about nothing, she also thinks the same of me, unfortunately.

[ruthmel1 in reply to Hidden]

There is a hereditary element to it. My Mum had ahces and pains and what I now believe was restless leg syndrome, but in the 1980's her misogynist G.P gave her anti-depressants! I also have M.E and my 25 year old daughter sadly has M.E too.

I'm sorry your Mum doesnt believe you. print her out some info on Fibro and get her to read it. Thousands of us cant be making up these symptoms! Good luck

[Mdaisy in reply to ruthmel1]

The current research points towards a genetic predisposition rather than being hereditary in the traditional sense of the word. It takes a trigger of trauma, virus, bereavement etc to develop Fibromyalgia, however two siblings could experience the same trauma but only one might go on to have the condition. This needs further research but often members do report other members in the family often have it although in my family I'm the only one with this diagnosis.

[ruthmel1 in reply to Mdaisy]

yes thats what I meant! I chose the wrong description.Blame it on brain fog!!!! It is interesting how ones body reacts to certain situations. I have a friend who has coped with trauma after trauma and has just breezed through it. Whereas my body has rebelled, My sister is a totally different nature to me and is fine. They do say type A personalities-perfectionists, wanting to be a high achiever, are pre-disposed to these type of illness's

[Mdaisy in reply to ruthmel1]

I understand, I just wanted to clarify and add this information to this post for the newbies Yes there also been studies on Type A personalities, which most certain relates to me..... it seems it needs certain bits of the puzzle to come together, doesn't it?. Wish we'd lost a piece though......

[KnackeredKaty]

Hi Linda

I sympathise with you. I think GP's underestimate joint pain. I have been going to GP's with joint pains for at least 30 years and I've had joint pains since I was at primary school. I was only diagnosed once I had seen a rheumatologist and I had an auto-immune screen. I had around 14 blood tests which gave me a diagnosis. Your GP might be better to refer you to a Consultant.

[Kiasoul in reply to KnackeredKaty]

Thankyou for your comments I to have had joint pain for a long time I could easily go back 30 years and it would say in my medical notes that I have been complaining about it. I am definitely going to ask Gp to refer me.

[Angelcake1]

Hi I had PMR ( polymyalgia rheumatica) for over 3 years and now have fibro.

My crp and esr levels were very high, but you can still have PMR without these being raised. My PMR responded within a few hours of having 15mg of steroid, for some it takes a bit longer but because of this reaction it was a sure fire way of knowing I had the right diagnosis. Prior to the steriods I was given naproxen, which had no effect at all, but I've been given it for the fibromyalgia too and it doesn't work. By the time I was diagnosed I couldn't move my head elbows, all over pain, bursitis and just shuffled around, I was 59yrs old. It started in my shoulders, but so has the fibro and the back of neck/top of the spine is my worst area.

I

[Kiasoul in reply to Angelcake1]

You have just described exactly what I have been experiencing I to have had bursitis twice, my left arm I can hardly move , shoulders neck and back hurt like mad and the constant dull headache. They have given me excise for my arm and shoulder it helps a little but still can't lift it have to go back to the physical therapist on April 26th so will try and carry on doing them. I keep taking the pills and I will request a referral. Thankyou for your comments have been a great help.

[Angelcake1]

I had bursitis in my neck, elbow and hand, I told the doctor after many weeks that my friend thought I had PMR as I presented the same as someone whom she knows well with PMR. The doc just said PMR means many muscle pain and your not looking after yourself grrrrr. Inthe end I just went and sat in AE, I did look a sorry sight, they gave me a high but quick reducing course of Prednisone, I then had to fight to get a regular ongoing steriods. Phew we really have to go through so much pain, unfortunately as the PMR was on its way out I have fibro.

Good Luck, be adamant that you want it sorting each day with this kind of pain is one too many x

[Kiasoul]

I think after reading all the comments that people have sent me I have got to be more assertive with my doctor and not just accept it is my age or life style I have put weight on I am 5ft 2 and I am 12stone it's getting that I don't want to move at all and I no I am not doing myself any good but if I try to do some exercise I am in so much discomfort have to take pills and feel I have to rest. Like I keep going around and around and never getting any where.

[matty51]

I have not head of this condition before.

[Kiasoul]

I had not heard of it before until I researched it to try and find out myself why my muscles and joints are always in pain and still I don't no if I have either until I request to see a consultant and have some test done. That is why I asked the question and the comments have been very positive, could I be a suffer of one or two of them . Has the symptoms are what I am experiencing.

[Poppy_the_cat]

What a load of nonsense- 61 is young!!

Well just to throw the cat amongst the pigeons, after all it is a Sunday morning! In France PMR is unknown, because they consider it to be Fibromyalgia! This makes perfect sense to me. It is the medical profession that love to give us labels. They don't even really know what Fibromyalgia is and that is why it is called a syndrome!

In my personal experience the extreme spectrum is possibly what gets called PMR; they are all part and parcel of the same thing. The big question is how to treat either of them effectively? But how can this be fine when neither is truly properly understood??

Blood tests! Well, some people can have all the symptoms of a condition but nothing shows up in blood tests. Blood tests can come back as perfectly normal- not that we want them to be abnormal, but they can give a false impression. As my own GP says, my 'normal results' are simply because they have not yet found the right blood test to give me!

All I can advise from personal experience is painkillers in general, long term are a bad thing. It's all swings and roundabouts. You cannot take any medication without experiencing an unwanted side effect of some kind.

As all this Hashimotos, Fibromyalgia, and in my opinion PMR and food intolerance business/leaky gut issues are all related to Autoimmune issues, the place to start is in the Gut. By improving our gut biome health we stand a chance of reversing or at least lessening our collective symptoms.

We are not born with a medicine cabinet, but we are provided with our own immune system. We just need to subtract the negative agents that provoke illness and bolster our Immune System to bring it back on line. It's our first line of defence. Modern living, Antibiotics fed meat sources, pesticides, poisoned soil, heavy metals in our bigger fish etc make for a severe threat to our general health, so it should come as no surprise that we are getting so ill.

61 years of age is not old.

Look to research Nutrition and see how you can better position yourself with improving the health of your gut biome. People to read are our Dr Michael Mosley's...and Dr Mark Human in the States.

Poppy the 🐈

[desquinn Partner Volunteer FMAUK Trustee in reply to Poppy_the_cat]

Sorry but your incorrect. PMR quickly responds to steroid treatment on most people and is comparatively easy to treat relative to fibro, It is a differential diagnosis and not the same as fibro.

[Poppy_the_cat in reply to desquinn]

Everybody is entitled t their own observations 😁

[Mdaisy in reply to Poppy_the_cat]

Yes you are but as the charity FMAUK run this community, they add this information for other members to balance out the replies and add to the discussion. desquinn is the Chair of Fibromyalgia Action UK and therefore should explain it is two different conditions.

[desquinn Partner Volunteer FMAUK Trustee in reply to Poppy_the_cat]

Sorry to be direct but an opinion is one thing but a fact is another. I would rather my doctor dealt in medical facts.

[Kiasoul]

Thankyou Poppy it is worth some investigating will look into. I would love to come off the pills all the better.

[Mdaisy]

Hi again

I think to get fully informed it might be worth posting this post also in the PMR HealthUnlocked (HU) site. Charities and community groups run the different communities using the HU platform and the admin there will be able to share their knowledge with you too.

Here's the link

healthunlocked.com/pmrgcauk

Being an informed patient and making healthcare decisions with your own GP is probably the best way to work towards looking after your own health.

Hope this helps

Emma

[Kiasoul in reply to Mdaisy]

Thx Emma will look into it

[jayfer]

My mum has polymyalgia rheumatica and is on steroids for this, a friend (75) has it too but my gp told me I was too young (61) for it. I have lupus and fibromyalgia. I was told polyomyalgia usually lasts no more than 2 yr with a gradual reduction in steroids

[desquinn Partner Volunteer FMAUK Trustee in reply to jayfer]

there are some difficult cases that will take longer than 2 years of treatment but these are the minority. But I believe that the treatment brings relief irrespective.

[jayfer in reply to desquinn]

Yes my mum has stayed on 5mg forever lol my friend reducing well after 12 mth. But both felt benefit almost immediately

[Kiasoul]

Yes I have read this it will be worth mentioning it to my GP

[ruthmel1]

My Mum had Polymyalgia.The difference with it and Fibro is that Polymyalgia is caused by inflammation which will show up in a blood test and is curable with steroids. Nothing will show up in the blood for Fibro and its not curable. You need a definite diagnosis.Dont be fobbed off by your G.P. ask for a second opinion.

[Kiasoul in reply to ruthmel1]

This is my goal will be making appointment

[mo1mo2]

Hi Maureen here I have fibro and I think that is what you have The blood test will rule ou polymygalia if your EAR is normal Try and pace yourself as over tired or stressed makes it worse

[Kiasoul]

Thankyou Maureen I have just got to wait now to see my GP hopefully I get some answers.

[Bossy14]

HI I HAVE HEARED OF THIS BUT SOMETIMES GP,S ARE RELUCTANT TO DIAGNOSE I HAVE A VERY UNDERSTANDING DOC IF YOU WAS TO TELL YOUR GP YOUR SYMPTOMS ARE SIMILAR TO WHAT YOU HAVE GOOGLED IM SURE THEY WOULD INVESTIGATE GOOD LUCK

[Kiasoul]

Thx I am at the doctors next week so fingers crossed I will get some where.

[Wrecklesham]

Hello, just wanted to say that I have suffered fibromyalgia and Polymyalgia. I was told that fibromyalgia can move around the body, but Polymyalgia is from the waist up and of course down the arms. The other thing to watch for is any site spots in your scalp with Polymyalgia as this is a sign of a bigger problem, only know if as GCA although there are others. If this occurs you immediately need to fallout doctor. Fortunately mine checked with me and I had to go straight into huge doses of steroids if ignored can hit the veins around the side of the scalp and cause very severe problems. So please if your pain is consistently above the waist and doesn't move lower down go back to your doctor and demand to see a consultant. Don't want to alarm you but always better safe than sorry as I know. Although horrid hope it is fibromyalgia.