Fibromyalgia - any help gratefully accepted

My daughter finds that amitriptylene gives here relief from the pain. Prescribed by her consultant but having difficulty getting GP to take over the prescription, despite a letter from the consultant.

Not “read smitten” Re-admitted! !

I have Fibro, ME & osteoarthritis.

I have tried a myriad of treatments/meds for over 20 years now.

This is what works for me!

Very light exercise, gentle stretching every morning and night, a very decent mattress, good feather/down pillows, an electric heat pad, massage, hot tubs/jacuzzi, steam rooms. In terms of meds, I’ve tried quite a few thus far, but I’m now on pain patches, morphine based, and I’ve an appt next week with a rheumatologist.

I “developed” Fibro/ME after the birth of my last child nearly 22 years ago, it was a very quick birth, I was read smitten a couple of days after discharge with baby as he developed jaundice. We were only on the children’s ward for 48 hours but I managed to contract a hospital infection so was then readmitted to maternity 2 days after discharge from children’s ward, for 6 nights, in isolation, on intravenous antibiotics and it’s been downhill since then. I was 44 when my last child was born and prior to this was a very fit and healthy and mobile and energetic person. It ruined my life frankly. Along with this I developed IBS, then Diverticular disease. Life can be horrific at times!

Hi I’ve also got it along with arthritis Os and few others lol tell her to join healthunlocked it’s for anyone with any medical condition you name it you will find information about it on there. It’s different groups with ppl with the same condition that you have you will get all the information and tips you need and she can chat or read with other ppl who are living with the condition and understand what she is going through.

Useful article on MEDSCAPE - actually for physicians, but publicly available: emedicine.medscape.com/article/329838-overview#a2

I have a friend, Janice Maddock she is involved with the Polymyalgia Rheumatica and Giant Cell Arteritis UK. She helps raise funds for research, does a lot of good work in this field.

Amitryptaline really helped me. I take two at night. It acts as a pain killer
And eight paracetamol in the day time. At least I can function now!

blue14 no sadly, I'm needed at school as a TA and for SEN interventions and I also truly love my job exhausting as it is... One day lol

VioletSky - I'm so sorry to read how bad your symptoms are. It just reminds me how things were with me when I was also working full time. As you say the pain is just THERE.
I agree with you completely about how hard it is to explain to others.

Things improved a lot when I was able to retire.
IBS is also linked to fibromyalgia as are the sleepless nights you describe. I suffered with both when working and although I still have poor sleep I no longer suffer with IBS.
Are you able to go part time?

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

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.

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

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.

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.

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

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)

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 🙏

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.

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

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 . 🙏

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.

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 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.

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.

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