Fibromyalgia - any help gratefully accepted

There is an organisation called Versus Arthritis which is full of very good advice and lots of ideas. It is on FB too. I hope your Dd gets some relief from this awful illness.

Thankyou everyone who responded. My Dd has read all of your remarks. It so helpful to hear from others and how they manage the condition.

Best wishes to all sufferers and I hope you keep as well as possible. 🙏

It seems that years ago fibromyalgia was a Thing. All of a sudden many people were either diagnosed or claimed they had it. Was it a “fad” for Drs to call it that when they couldn’t satisfy the patients complaints? Now you don’t hear as much about it, only a few.

I don’t and never believed in this affliction. I worked in a hospital for 20 yrs.

I worked with a woman who always used the excuse her fibromyalgia flared and couldn’t come to work when she was under stress or overly anxious. We all worked with the same circumstances but never moaned about fibromyalgia. We didn’t have it.

First of all she was over medicated by her Doctor for other maladies (per this worker herself, but she couldn’t let go of this medicine). Second all her symptoms were the same as my arthritis. Third she was (sorry to say) a very anxious worry-wart.

Maybe a proper diagnosis by a different Dr is needed.

Chance would be a fine thing.

Temporal arteritis
Up to 1 in 5 people with polymyalgia rheumatica develop a more serious condition called temporal arteritis (also known as giant cell arteritis), where the arteries in the head and neck become inflamed.

Symptoms of temporal arteritis can include:

a new or frequent headache that usually develops suddenly (your scalp may also feel sore or tender)
^pain in the jaw muscles or tongue when eating or talking
problems with sight, such as double vision or loss of vision in 1 or both eyes^
If you have any of these symptoms, contact a GP immediately, go to 111.nhs.uk or call NHS 111.

Unlike polymyalgia rheumatica, temporal arteritis requires immediate medical attention. It can lead to serious problems like stroke or blindness if not treated quickly.

www.nhs.uk/conditions/polymyalgia-rheumatica/
Page last reviewed: 23 April 2023

I think most people would disagree with your opinion Gundy which sounds positively dangerous.

Oh gundy. I truly can’t agree with you. I fear you may offend and upset many sufferers and yes, suffer is what we do.

When I was first diagnosed I was told I had Yuppie Flu, the derogatory term used back then for what is now called ME or CFS. When the pain kicked in many concerned, well qualified medical professionals gave me things to read about fibromyalgia, as new to them as it was to me. At the time there was no sign of arthritis of any kind

Anyone can grasp a term and use it inappropriately. A headache becomes a migraine, a cold becomes flu. Some can claim fibromyalgia when they have other painful conditions. It doesn’t mean some people don’t have migraine, flu or fibromyalgia. I fear your judgement is clouded by your reaction to your colleague.

I also have widespread osteoarthritis and know how painful it is. It is a very different pain to that of fibromyalgia, I am well able to differentiate between the two and also the nerve pain I experience from a damaged spine. I’ll not return to this thread. Too upsetting to hear such comments about a real, disabling condition

Some people with polymalgia rheumatica are told it is fibromyalgia, yes it was termed Yuppie Flu and dismissed at first.

I don't think some GPs are at all up-to-date in recognising symptoms of either; the difference in treatment between surgeries is quite astonishing.

Don't leave cornergran.

I wonder what causes the onset? Ive heard it can be stress or trauma

One cause, I believe, could be glandular fever.
Another possibility could be a neck injury eg whiplash from a car accident.

I was diagnosed about 30 years ago with fibro by my GP - one of the very few doctors who actually acknowledged the condition and how do deal with it. I had never heard of it but subsequently educated myself on the subject, Used to be what some doctors called a 'dustbin diagnosis' when all else had failed!

All that I can say really is that you just have to get on with - know your 'triggers'(repetitive activity, extremes of temperature for in my case) and pop a paracetamol if the pains get troublesome. I used to get bad IBS when I was younger (sub condition linked to fibro) and did find that a short course of an SSRI calmed it down and switched off the trigger. However, I have never taken any course of drugs to keep the effects at bay as ultimately they mess up your system in other ways. And they will not stop the fibro.

Versus Arthritis webiste is quite informative and helpful and also a very good manual produced some years ago Starlanyl and Copeland eds Fibromyalgia & Chronic Myofascial Pain: A Survival Manual (2001) is an absolute bible. No fibro sufferer should be without it!