Fibromyalgia - any help gratefully accepted

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!

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.

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.

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

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.

Chance would be a fine thing.

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.

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. 🙏

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.

About being referred to the Pain Clinic...... In my area the waiting time was 4 years. Eventually at my request my GP wrote and requested I went into the urgent list. I was seen after 18 months. I suggest your DD makes sure she is on the urgent list.

As awful as this condition is, I can only speak from my involvement in holistic health care for decades and know that there is much that can be done to improve things. Disregard anything that makes no sense to you but I found physical and, or, emotional trauma to be a big part of most sufferers picture.Sometimes, talking about it isn’t enough. It’s as if the body holds an imprint of the trauma and until released, it manifests as physical symptoms. Therapies that may help this include homeopathy, Craniosacral therapy, acupuncture, and some others, especially involving gentle bodywork. This need not exclude also using prescribed meds if they help.
Other things to consider are nutrition, supplements, very gentle exercise each day eg stretching, walking, getting out into nature, sleep (lots of), relaxation, meditation and prioritising self care. Sometimes some life changes need to be made. Hope this helps a little.

Thank you.

I have fibromyalgia, osteoarthritis and many other irritating conditions. This thread has thrown up suggestions that I hadn’t heard of before so many thanks GN’s for that. I’m a firm believer in meditation and visualisation because when the pain is bad medication only does so much. By focusing on breathing and something other than the pain it really can help distract the brain. I use the Calm app which I really like. Other apps are available. Also do join any local support groups. It’s good to be sat in a room with other sufferer’s who know how bad it is, and share tips and a shoulder to cry on at times.

My GP told me about it but I knew it existed because of my sister. Try Googling it as our nearest one came up when I did. If you look at the NHS website and the symptoms for Chronic Fatigue Syndrome the list of symptoms is huge and can be for Fibro too. My DGD has fibro and has private prescription for canibis which although expensive does help her.

Ooh, I've not heard of that service before.

I wonder if it might help me, because I feel I have so much going on, that nothing seems to help.

I have had CFS for over 30 years, not much helps and I am fortunate that I can get away with just paracetamol for any pain as I can't take other painkillers. You could see if there is a Persistant Physical Symptoms Service near you, GP can recommend but I think you can self refer. I haven't tried it myself but my sister has used something similar that really helped her. I find pacing myself helps a lot and if I know I will have a busy (for me) day then plan to do nothing the day before and after.

Yes, if amitriptylline doesn't turn you into a zombie, it can help. Pregabalin helps me, but then I don't just have FM; I have seven wedge fractures. Pregabalin, along with Tramadol 45 minutes before, helps me sleep.

Hello, I have had Fibromyalgia for a long time now and I help run a support group.
Fibromyalgia is a very unique condition as it affects people very differently.
I manage my symptoms well and pacing yourself is so important...but not naturally easy to do when you were previously an active person.
I put my timer on for 15 minutes whatever I'm doing... gardening, ironing etc and when it goes off I then rest for 15 minutes and so on.
I achieve so much more when I pace myself.
Yesterday I potted up 8 pots with summer bedding. It took a long time but I was so pleased with myself.
Fibromyalgia can be so debilitating and overwhelming. I am so sorry you are struggling.
F M A UK can be supportive and there may be a Support group nearby.
Ours is a very friendly, approachable and cheerful group and I hope you find some answers soon.
Please message me if you need any more info or just want a chat.
Take care...x

Goodness, apologies for the length of that. Got carried away.

I was diagnosed 33 years ago, initially CFS then fibro as the pain kicked in. In my case it arrived after a 6 month course of antibiotics to deal with kidney problems and just after my Mum has died very suddenly.

Over the years I’ve tried most things. Unfortunately side effects from strong pain killers make them an impossibility for me. I am prescribed slow release ibuprofen at maximum dose and 8 a day of paracetamol, as has been said previously it takes the edge of.

Pacing, distraction, care with diet and gentle movement all help along with heat when needed. In flare ups my base line for any activity is just ten minutes. I can judge in the day if longer is advisable or possible. So it can be ten minutes, a rest, another ten minutes and repeat. Serious issues with my spine and osteoarthritis add to the pain load. Most of the time I can concentrate on other things and ignore the pain, lack of energy and head fog are harder to combat. It has been very difficult since Christmas when Covid aggravated symptoms, they aren’t settling yet.

Having said all that for the vast majority of the time it is manageable. I ask myself each day ‘what does it want’. If it wants me to stop after ten minutes I do, if it’s happy for an hour or more than I make good use of the time. We do a lot of sitting in coffee shops watching the world go by.

It is harder when younger. I was working with a just teenage family. Eventually I adapted,, kept working part time, employed a cleaner and finally secured a masters degree as a very mature student with a lot of help from the University which enabled me to work professionally in a sector where I could manage my energy. In my case most things can be done, just differently.

A pain clinic is an excellent idea, the acupuncture arranged in the clinic moved me out of a very stuck place. It’s good to share the diagnosis with friends and wider family, awareness has increased now. Early days I was met with blank stares. CBT can help with challenging the negative messages that whizz round the head, mindfulness helps me work out which bits of me don’t hurt. Just as important to know. Help with diet moved me on, I have to be careful with sugar which knocks me out, everyone is different though. Homeopathy was a game changer, I was referred to a homeopathic hospital when the NHS tolerated the approach, still use some remedies.

It’s important to remember something as simple as reading or chatting uses energy. It’s not just physical activity. It’s also important to make time and keep energy for positive, enjoyable things, not just the ‘have to’s’ of life. We’re all different, need different things in our lives, in my experience fibro isn’t a one stop fix, it’s a case of working out what helps, keeping an open mind, trying anything that won’t actually harm us, we all respond to different things, and doing the best we can to keep positive, not always easy for sure.

My best wishes to everyone managing this or other chronic illnesses.

Gentle stretching can help too but overall its a miserable condition and hard not to become depressed. Life isn't always easy so it's good to see so many sharing tips and experiences. Let's hope they help.

I have had fibromyalgia and sjogrens for the past 20 years or so. I take pregabalin and hydroxychloroquine, which generally help to a certain extent. I also take amitriptyline at night which can help with sleep problems. In the early days I was prescribed steroids which, with hindsight, I should have refused. Fast forward 14 years and I developed avascular necrosis in my talus. This caused indescribable pain as my ankle joint collapsed. I ended up with my foot being rebuilt and my ankle fused - this was caused by previous use of steroids. I now have considerably restricted my mobility and I had to retire from work on ill health grounds. I'm not telling this as a sob story - more of a warning of the damage steroids can do

There are several local fibromyalgia groups on FB that she would find very useful and a lot of them meet up once a month - the best people to help are those that are going through it

14 months of trying to move (4 sales and 4 purchases falling through until final sale which had to complete in 6 weeks) from Somerset nearer to my family in Wiltshire made me really ill with what I thought was fibromyalgia. Did my research and turns out, as I'm a type 1 Diabetic, it's actually something which no GP knows about (or cares to be enlightened about) called Diabetic Amyotrophy.
Has all symptoms of fibromyalgia but thank heavens is self limiting in 1-2 years. Thought it was going as renting in next town to my daughter but buying process for new house which needs work plunged me back so in my case definitely down to stress! I'd also missed the 'episodic' bit in my research but with super help from my new Diabetes Specialist Nurse who has another patient in her 70s with it, I just keep taking paracetamol and Imodium when I need it and have my fingers crossed it will go in time. Why do these horrible conditions seem to affect women more than men???

Have you considered seeing a naturopath/homeopath. Have you also looked at Parasites which can be a cause of so much ‘dis’ ease? Here is a FB group you may like to look at. If you type in Fibromyalgia in the group search, a few things come up about it.