Advice required please

[Blueholidaytime]

Ten years ago I had ovarian cancer, I’m well now. Gradually ever since the extensive surgery I had, I’ve developed symptoms such as widespread pain, insomnia, stiffness in joints and muscles, severe cramps, fatigue, anxiety/depression, brain fog, irritable bladder, gut issues and restless legs. I’ve spoken to many different GPs over the years and I’ve been referred for physio and referred to a pain clinic. I’ve been prescribed Amitriptyline, naproxen, paracetamol, codeine, celecoxib, and now Mirtazapine. I take Laxidol for my bowels and Esomeprazole for my stomach. I also use a hormone pessary for bladder irritation and Zopiclone, when I can beg some.

I’m beginning to think I have fibromyalgia. As I’ve spoken to so many different GPs, mostly on the phone and it feels like no one has ever joined up the dots. What should I do? Does this sound like Fibromyalgia? Do I tell the GP that I think it’s fibromyalgia? Do I need a formal diagnosis? Are there better treatments more suited to Fibromyalgia? Thanks for reading.

[CM1EDSUK]

Whilst you don't need a diagnosis, personally I always think it helps, if only to validate your concerns. It may, or may not be fibro, but there's no harm in asking your GP for their opinion as to whether your problems might be due to fibro.

I've often thought that if you could get all the specialists you might see in one room so they could talk to each other, much like your joining up the dots, that many would get a quicker diagnosis, not just about fibro, but other disorders as well!

[Cat00]

Sounds like fibro to me. Very similar to experience anyway.

[Fra22-57]

to be honest I don’t think they would give you any more medication to help than you already are on.Diagnosis is a shock but at least then you would know

[nomoreibsc]

Dear Blueholidaytime, just want to celebrate and applaud you for successfully beating cancer. Treatment is very harsh and can leave you with all kinds of side effects. Can take years to resolve. I went through the cancer journey almost ten years ago and suffered similar symptoms as yourself after treatment. It's been a battle to regain my health since. I was diagnosed with Fibromyalgia before chemo and radiotherapy but treatment seemed to ramp up the symptoms. I was able to access pain management courses which helped me to pace, manage pain naturally and deal with insomnia. I was lucky to get CBT for chronic fatigue. Really made a difference. Yoga and Pilates also helps me to manage the pain. I had to start very slowly and be kind to myself during practice. Over the years my achy, stiff joints and muscles have lessen. I have more energy and I have less low moods. I also changed my diet, cut out high carbs, coffee chocolate, eat more leafy greens, salads, etc. Was trial and error but all this had helped me feel more normal. I hope you find something that works for you. Best wishes. x

[Dinkie]

May be that you have fibro but I would suggest you ask your GP for a referral to a rheumatologist. Put the request in writing, follow it up with a telephone consult, this way the request will not be lost or fail to be recorded on your notes. Don't be surprised if it takes forever to get a formal diagnosis. Fibro is usuallly only diagnosed after everything else has been ruled out, but at least doing it this way you are more likely to get the ball moving.

[Bluenomore]

Hi , I have fibromyalgia and your symptoms certainly sound like it . From personal experience I was diagnosed by a neurologist who along with an extensive detailed history of years of symptoms can also diagnose by applying pressure to certain parts of the body to see if they produce a pain response which a person without fibromyalgia would not feel. I have learnt over 20 years of having fibro that you have to find what meds help you by trial and error , I have taken amytripyline for mine , but that a change of lifestyle helps and it is better to take matters into your own hands. For example , like a previous response here the triggers for me are wheat caffeine and sugar . If I cut these out or down there is a dramatic improvement. Learning to schedule in regular rest periods , rest when you are tired not when your exhausted is a good plan ! And to get as much gentle excercise as you can for example walking swimming and yoga. Whatever we name our symptoms , for me, it all boils down to taking time each day for self care , meditation also helps me a lot and I do this twice a day. I hope you feel an improvement soon .

[Kelv1]

Yes your symptoms sound the same as mine, i was convinced it was bad arthritis , fist doctors put it down to muscle injury so I changed doctors where I spent about a year bouncing between physiotherapy ipass until they realised there was no change more to the point I was getting worse I couldn't walk at timesI Was sent to the romatolagist whe he instantly said this is fibromyalgia.

A questionnaire was given where it was a yes to all questions of symptoms.

I Was given my diagnosis of fibromyalgia

And booked in with pain clinic and put on 30/500 codin paracetamol...

Witch I found helpful for about a week but it only took the edge off the pain.

Had enough of pain after about a year of putting up with codin as still was waiting to see what the pain clinic could do for me

Gave up with waiting two weeks ago and ask the GP for help where I was told codin doesn't really work for fibromyalgia.

I was then put onto duloxetline( antidepressants) as a pain blocker witch I have been taking for just over a week.

But I understand it will take seven weeks before I feel any pain relief but the duloxetline lifts your mood alittle.

I've been advised this may only help for a few months where I will have to try something else. Another alternative

I'm still waiting for pain clinic,

I

[Kelv1 in reply to Kelv1]

I hope this is of help to you

[Blueholidaytime]

Thanks very much for the replies.