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What should I do if I think I have fibromyalgia?

What should I do if I think I have fibromyalgia?

Firstly, you are not alone and there are many that have started this journey before you. There will be people that you can get information, tips, and advice from that may help you. There is peer to peer support available within our communities and support groups that you can engage with. 

The diagnosis of fibromyalgia can take 2 years or more to be diagnosed and can be complex with having to rule out other conditions that present with similar symptoms. If you have any of the 4 core symptoms mentioned here or if you are not feeling right then please contact your GP and talk to them. 

It is hard to pinpoint where fibromyalgia may begin. Some people looking back can highlight a piece of trauma that their fibromyalgia may be connected to, like a car crash or an operation. Often people will go to their GP with complaints about pain that may initially be localised to an area, or it could be the non-refreshing sleep. The time it takes to be diagnosed can be frustratingly long, with visits to many health professionals. Your health team may need to carry out various tests and explore other conditions before coming to a diagnosis.

Most people who have unexplained symptoms will not have fibromyalgia, but you should consult your GP.

Why is Fibromyalgia difficult to diagnose?

Diagnosis of fibromyalgia is challenging to diagnose for a number of reasons, and not least that the symptoms can be present in many other conditions. Symptoms also vary, and there can be a number of them, and they can fluctuate as well. A patient can have difficulty trying to describe all that is going on to their health professional. Sometimes this can result in an information overload for the health professional. Short appointments can also add to the difficulty, and patients may be diagnosed incorrectly with alternative conditions and only receive a diagnosis after years of delay. Conversely, it is also possible to be misdiagnosed with fibromyalgia for the same reason.

Your health professional can be your best asset in your fibromyalgia journey, especially if they work as your partner, helping you to navigate while listening to your contributions. Their confidence level in fibromyalgia can make the difference between them being able to diagnose or help you. This does make them a bad health professional and if they learn from you, they can become more confident and helpful.  

RCP Diagnostic guidelines

The Royal College of Physicians created guidelines called the diagnosis of fibromyalgia syndrome in August 2021 that aim to support clinicians diagnose fibromyalgia, no matter if it is at a rheumatology clinic or more commonly now at your GP practice.

These guidelines were produced with the input of many professionals as well as patient input. A patient can point their health professional to the clinicians version of these guidelines below if they express difficulty in diagnosing or accepting the condition. 

You can read the guidelines below, and we would recommend the patient guide and the diagnostic worksheet below:

NICE guidance on chronic primary pain (NG193)

NICE published guidance on the treatment of chronic pain in over 16s in April 2021. This was the result of looking at previous studies too with an aim to provide the safest and most effective treatments. While it was not focussed on fibromyalgia, our condition featured significantly as the example of chronic primary pain without a clear underlying cause.
 
Most of your ongoing treatment will be conducted by your GP, and they will look to this guidance, but they can vary your treatment in order to provider better outcome for you.
 
Part of this guidance removed some previous options from being recommended, e.g. Tramadol or Pregabalin. However, it also states that if you are using a treatment like these that is effective for you, then it should be a shared decision-making process and any working treatment should not be stopped unilaterally.
 

Support Resources

You can find out more about our helplines and support groups here including any notice due to holidays or closures. 

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