Seeking help for chronic pain

I have been experiencing chronic pain throughout my whole body and we have a history of fibromyalgia in my family.  My grandma suffered and sadly passed away because of it.  Her loss deeply affected me and left me with PTSD.

I believe I have been asking my doctors for help to manage this chronic pain.  I have been telling them about my pain and the symptoms I go through every day.  The stiffness, the irritated bowels, the brain fog and memory loss.  I am at a point, I just don’t know what else to do.  It is overwhelming.

I need someone to help me get through these symptoms.

Recently, I spoke to my GP and finally she gave me a checklist where I can document where my pain is in the body and I can indicate the severity of the pain.  I have completed the form but wait for the doctor to help get me the right support and help.

What would I like healthcare professionals to learn from my experience?

Doctors need to take people’s theories into consideration.  It is our body and we know how it feels.  We know better than anyone else if we are going through pain.  There is actually a reason we are going to see them and why we are complaining about it.

What would I like other patient’s to learn from my experience?

That you are not alone and you can access support if you just look for it and ask for it.

Summary

This woman (name omitted) provides her heartfelt and highly personal experience of living with the consequences of fibromyalgia and chronic pain.  Her desire to be heard and supported by her clinical teams is clear for all to read.

I have not personally reviewed these resources, but for anyone interested to explore further sources of support, it might be worth taking a look at the NHS overview of Fibromyalgia or Fibromyalgia Action UK, a UK based charity offering resources, helplines and patient guides.

Additional guidance to help you prepare for a consultation with a healthcare professional

On this page we have a patient consultation tool called ‘Your Consultation’ which might offer some help you feel more confident when preparing to meet with your doctor, nurse or other healthcare professional.  While this resource was originally developed in the context of cancer services, the principles are easily transferable to other clinical situations. The key areas to think about are;

• What do you need help with – write one or two clear sentences to share with your healthcare professional.  For example:

   I am in constant pain throughout my body which is affecting my quality of life and emotional wellbeing.

• What help you want from your healthcare professional?  Be specific about what kind of support you need.  For example:

I need you to listen to me, support me and take me seriously because I am the expert in relation to how my body feels.

• What you hope to achieve in the consultation – Setting a clear goal can help steer the conversation.  For example:

I want help managing my pain or a referral to a specialist who can help me.

• How much information you want – Let them know how you prefer to receive information.  For example:

I like detailed information but please check that I have understood everything before I leave.

Having a structure like this can help you plan your conversation and manage your expectations.  If your concerns aren’t addressed during the consultation you can refer back to your notes to make sure nothing is left out.  Writing down what you want to say and bringing it with you can help you stay focused,  feel more in control and reduce the emotional stress of the moment.  It can also help your doctor be really clear about what the problem is and what you need help with.