Fibromyalgia - any help gratefully accepted

Has she been given any medication or advice from a rheumatologist?
I take zapain for pain, and find it takes the edge off the pain, and that was prescribed by my gp.
I do have other issues with my back though, so I'm never sure what causes the pain.

Zapain takes the edge off it all though.

Also, I think you have to be careful with regard to exercise.
At one time it was advised, but new info is that it can do more harm than good.

They are going to update the 'nice' guidelines to ensure it is giving correct info.

Someone I know suffers and uses cannabis, I don’t know if she eats or smokes it but she swears by it.

Just bumping this in the hope that someone more knowledgeable than me can help you.

I have fibromyalgia/ ME, started about 5 years ago when I had a serious accident. It's improving gradually. I take cocodamol at times but the most helpful thing has been amitriptylene. I know people look at it and think, it's just an antidepressant, but that isn't how it's working; it seems to stop your brain registering it as pain.
Try the ME society website, meassociation.org.uk/

Do you exercise, babsinthewood?

Yes, but quite carefully. I get very frustrated because there's so much I want to do! If I overdo it one day it can take several days or longer to recover. I'm not a gym bunny anyway. I try to have a walk most days, unless I'm having a 'crash' from overdoing it. And I enjoy gardening ( but I do have to pace myself). If I work up very gradually over weeks and months I can do quite a bit. It's very frustrating, because if I get any sort of 'bug' it can really throw the ME and pain off kilter again; it's the 'pacing' myself I find really hard. Thank heavens I'm retired, and fortunate enough to have an understanding husband. It's something that often doesn't get much sympathy from people who don't understand it.

Thank you.
I'm still finding my way around the world autoimmune problems, which I find incredibly difficult.
I was sceptical, which doesn't help matters, I'm sure.
My life seems to be one long flare up, with no respite, and it's really frustrating.

I have undifferentiated connective tissue disease/disorder, so I'm told.
A mixture of most of the conditions, but not enough of any one of them to label it as that.

Oh, I do have sjogrens syndrome too. Happy days!

I've known three people who had it and at least two were treated with steroids and with anti-inflammatories.

Many GPs will not prescribe anti-inflammatories now but some may. Steroids tend to cause weight gain and puffiness but the treatment is not long-term.

One 80 year old I know who had this a few years ago has a new lease of life, can't keep up with her.

I do hope your DD's GP can put her on the correct treatment, Gingster and that she gets through this. It does need proper, prompt, prescribed treatment.

MissA, I have connective tissue disorder, Sjögren’s syndrome, psoriatic arthritis, occasional uveitis and other auto immune conditions.
My diagnosis was about 30 years ago. I crack on as best I can. I do have biological treatments now which help but stiffness, tiredness etc never go away just sometimes easier than others

I'm convinced I have something else going on, somewhere, because I can barely do a thing.
I'm waiting for a better day, or week at some point.

Thanks for all your suggestions.
Her gp isn’t overly helpful. She’s on Tramadol but has asked for Amitriptyline, so hopefully that will help. She has been on short spells of steroids which works like magic but she can’t stay on those for too long.
It’s such a horrible condition and my sympathies are with you all . 🙏

She is being referred to a pain clinic . Goodness knows how long that will take.

Hi Gingster - I was diagnosed with Fibromyalgia in my mid/late forties. My doctor was helpful and I tried various medications including Pregabalin, Duloxatine, Amitriptylene and various muscle relaxants and pain killers. Steroids did work but kept me awake all night and, of course, you can't be on them long term. At the time I also paid privately for acupuncture.
I also attended a ten week course at a pain clinic - I did get some helpful ideas from this.

I'm now retired and not on any medication apart from Tramadol as and when necessary.
I've found now that the best thing is to just pace myself. If I have a day gardening I make sure that nothing is planned for the following day. I enjoy visiting gardens but find I can only walk comfortably for 20/30 minutes - often even for a shorter period. After a rest I'm able to continue. (Family and friends are very kind and aware of these problems.)

I did attend a group for fibromyalgia sufferers but so many of the people there were 'moaners' and I didn't get any constructive help.
There is a Fibromyalgia Association. They produce helpful information and also have a telephone helpline 0300 999 3333
I don't use them now but there was always a kind, reassuring and understanding voice at the end of the line.
I sympathise completely with your daughter and hope that she will find what works for her and get some relief from the unrelenting symptoms.

Thankyou blue14.
My Dd is 45 , so roughly the same age as when you first had it.

I suppose the reality is you just have to manage it the best you can, and find which meds suit you .

I wonder what causes the onset? Ive heard it can be stress or trauma. My daughter has had cancer a d although she kept well during treatment, she hasn’t been well since . I think the immune system must be compromised and this causes many different conditions.

Best wishes to you all 🙏

I was asked about trauma, and can only think it was my daughters death that triggered it.

It all sounds a bit daft to me, to be perfectly honest, but I suppose I'm having to eat my words. (Learning the hard way, its called)

MissAdventure - The Body Keeps The Score - mind, brain and body in the transformation of traumas, book by Bessel van Der Kolk
The author has many years experience working with trauma survivors. Ive dipped in and out - it fits with my health issues and tough times

When I was first diagnosed I was told it could be caused by some type of physical or emotional trauma. Several different doctors said something like a car crash although this doesn't apply to me.
So, Gingster, your daughter suffering cancer would fall into both these areas of trauma and MissAdventure, I'm so sorry to hear of your daughters death, but this would be the most serious emotional trauma one could experience.

Thank you, and yes, it's true about the terrible trauma.

To my mind, I had counselling, I took pills, had more (different) counselling, so it couldnt possibly be that.

Logically I realise it must be, but for some reason it embarrasses me.

Thankyou to everyone who has given advice on this thread. Absolutely any information on the condition is better than anything I have had from GPs over the 25 years I have suffered with this condition. I am having a flair up now and no painkillers work. I have taken coodamol for many years but that seems to have no effect any longer. It is a depressing illness. I try to stay positive and take pleasure in what I can do (read GN for one) but it can get me down at times. I’ve never tried the fibromyalgia association helpline so will definitely give that a go. Thanks blue14

So sad to hear of your DD’s death Misadventure . So sorry !
It really does seem that Fibromyalia is brought on by a trauma.
I’m interested to read the book Iam64. I’ll Google it and have a look.
Thankyou everyone for all your information and thoughts.

I have Fibro, It's very very difficult to explain to people.

I work and I do quite a physical job and I am exhausted when I get home but if I sit down for a coffee my joints then go stiff and I can barely move.

Some nights I cannot sleep at all and don't even get enough to reset my body and start the next day stiff and sore. With no distractions the pain is just THERE

You get used to a certain level of pain during the day, It's there but you are just used to it, it's the reality of existence... But add anything else on top like a virus or an injury and suddenly you can feel all of it and it is just unbearable. Then there are flare-ups from stress etc

I also have IBS and reflux which are both triggered by stress and have led to ulcers in the past

I have a lot of trauma in my past and believe the link. We know that throughout life we are growing and repairing brain connections and that stress can impact that.

I would really recommend her asking about Amitriptyline. In low doses it works to help nerve pain and taking it a few hours before bed helps sleep. Yoga is good for Flexibility but it's easy to advise and impossible to do on a bad day. An electric blanket in cold weather is truly life changing for painful muscles and joints and has made sleeping so much easier

Even talking about it the hyper awareness of my body, I can feel all of it so I better go get the blanket on ready and hope the weather warms enough soon that I don't need it

Massive love to your daughter and her caring supportive mum