Frequently asked questions about Fibromyalgia

What is fibromyalgia and other frequently asked questions.

In this article, I will explore the frequently asked questions about Fibromyalgia using my personal experience of being chronically ill. Furthermore, I will refer to useful websites and will include the links for you to continue researching yourself.

This frequently asked questions post will be useful to those of us with fibromyalgia to understand more about our condition. It will support our learning journey with this condition. Also, it could help a loved one or a family member learn more about having a chronic illness. Conversely, an employer could read this to help find the best way to offer support.

What is fibromyalgia?

My understanding of fibromyalgia is that it is a chronic condition that causes wide spread pain and debilitating fatigue, as well as other unpleasant symptoms like brain fog.

The NHS website states that “fibromyalgia is a long term condition that causes pain all over the body.” To add to this, Versus Arthritis describes it as “tenderness all over your body.”

What are the signs and symptoms of fibromyalgia?

The signs and symptoms of fibromyalgia vary from person to person but my main symptoms are:

• Widespread burning sensations felt in the upper and lower back and arms and legs.
• Debilitating fatigue and unrefreshed sleep
• Difficulty falling asleep
• Widespread pain in the shoulders, neck, back, arms, hips, hands, wrists, knees and feet.
• Brain fog
• Anxiety and depression
• IBS
• Noise and light sensitivity

According to the NHS, “the symptoms of fibromyalgia are changeable – for example, they can sometimes suddenly improve or get worse.”

With the condition, I also struggle with stress, worry or low mood.

Can fibromyalgia be cured?

I constantly search for this frequently asked question but as the name suggests, fibromyalgia is a chronic condition that cannot be cured. “At the present time the current treatments aim is to reduce and improve sleep” suggests FMA booklet on fibromyalgia, which also aims to answer the most frequently asked questions. It is a condition you have to learn how to self manage.

The NHS website says that “treatment can ease some of the symptoms, although they are unlikely to disappear completely.”

Are there any medications I can take for my fibromyalgia?

Painkillers have their place for me as do anti-depressant medications, however in terms of medication your GP is the best person to speak to. The NHS website also has useful links for medicines your GP could prescribe including antidepressants “to help relieve the pain of fibromyalgia.”

How do I self manage my fibromyalgia?

Pacing is the best way that I try and manage my fibromyalgia. Resting when I need to or having a nap are also other ways I cope.

Meditating can have its place in my toolkit of self management techniques as can heat from a hot water bottle, deep heat or a hot bath. Building a fibromyalgia support network is key, too. On the NHS website, it describes “lifestyle changes such as exercise programmes and relaxation techniques ” can help with the symptoms of fibromyalgia.

How do I get a diagnosis of fibromyalgia?

Getting a diagnosis of fibromyalgia can be a long process, in my personal experience, and your GP likes to rule out other conditions first. You may have blood tests to check there is no underlying cause for your symptoms. They may refer you to physiotherapy first if you are having aches and pains and perhaps conduct X-rays or MRI’s to rule out other conditions. After I had all these tests, I was then referred to a rheumatologist. Versus arthritis lists that your GP may also send you to “a clinical psychologist, an occupational therapist or a pain clinic, too.”

A rheumatologist confirmed my diagnosis and he completed the pressure point test on my body and I scored 18/18. He also did the Beignton score, which is a measure of your hypermobility and I scored 5/8. The pressure point test is quite an outdated model now and a more rounded view of your health is discussed and looked at in detail before determining the diagnosis.

Can I claim health benefits with fibromyalgia?

The FMAUK website states that “if you contact your local council, they may be able to make you aware of benefits advice services in your area”. I found that the Citizens Advice Bureau were incredibly helpful for me.

Personal Independence Payment is currently something I am trying to apply for at the moment. In order to apply, you need to phone the DWP to request paper forms or use their new online service. Then, you will have an assessment with PIP assessor who will ask you more questions about how your condition affects you. The DWP will make the decision based on the answers you gave.

The citizens advice bureau are an invaluable source of help when applying for PIP. They can also answer lots of frequently asked questions. Appeal If you are turned down for PIP. Fight for your rights!

Furthermore, I contacted the charity FMAUK who sent me a very useful booklet for how to fill out my PIP assessment form.

Are there any charities for fibromyalgia?

FMAUK are a specific fibromyalgia charity I am aware of. There mission statement is “to improve the lives of people with fibromyalgia by increasing awareness of the condition throughout the UK and elsewhere, and improve the awareness of and access to treatments.”

Can I exercise with fibromyalgia?

Exercise can help fibromyalgia as long as it is graded, paced and okayed by a doctor or specialist. I received graded exercise sheets by the rheumatology physio department. These were slowly and gradually increased. When it comes to exercise, pacing is key and listening to your body. The NHS conditions page stresses that “exercise has a number of important benefits for people with fibromyalgia, including helping to reduce pain.”

Is there a specific diet that helps with fibromyalgia?

This is another one of those frequently asked questions out there about fibromyalgia. Unfortunately, there is no specific cure all diet out there and Versus Arthritis backs this up by saying “there’s no particular diet that’s been proven to help fibromyalgia. However it is recommended that you keep to a healthy weight by eating a balanced diet.”

Gluten free diet

I, however, chose to go gluten free for a number of reasons. The first one was I had stomach issues for years involving bloating, constipation, diarrhoea and painful stomach pains. I was back and forth to the doctors a lot and they suggested various diets from the Mediterranean diet to a low FODMAP diet, all which I found very limiting and confusing. Eventually through a process of elimination, I went gluten free and my IBS symptoms cleared up! Secondly, I have tried on numerous occasions to introduce gluten back into my diet but every time I have done it, I get a flare up of my fibromyalgia symptoms. So for me, cutting gluten out worked but I am in no way qualified to say that you should do this. Please do speak to a medical professional before eliminating food groups from your diet.

How can I look after my mental health with a chronic illness

For me, having a supportive partner has been invaluable to my mental health throughout my fibromyalgia journey. I know I can talk to him and he will help me. He also takes a lot of my worries away by doing a lot of the housework for me.

Also, finding hobbies that take me away from my pain even for a short amount of time are useful to my mental wellbeing. TV, films, reading, podcasts and music are an amazing escapism from the pain.

Friendships and groups help me manage my anxiety and depression, too. Furthermore, the NHS website lists talking therapies “that may be able to help reduce pain.” Please remember there is no shame in seeking mental health support!

Mummy the Fibro Warrior Top Tip:

1. Learn as much as you can about fibromyalgia and research the most frequently asked questions to help yourself accept and come to terms with your diagnosis and educate others.

If there is one takeaway I’d like you all to remember today is that fibromyalgia is a chronic condition that with the right help and support can be managed successfully. I need you to know you are doing the best you can, your child/children love you just as you are and you are Mummy the Fibro Warrior.

Until next time,

x

Sources of information

1. https://www.nhs.uk/conditions/fibromyalgia/
2. https://www.versusarthritis.org/about-arthritis/conditions/fibromyalgia/?gad=1&gclid=CjwKCAjw29ymBhAKEiwAHJbJ8ujz7ysxVsq1WUVEppqdOgje-4rAlK3t4FHpopjms8u–Mv-w8ZNchoC8YoQAvD_BwE
3. https://www.fmauk.org/
4. https://www.fmauk.org/home-mainmenu-1/about-fma-uk-mainmenu-44
5. https://www.fmauk.org/dmdocuments/FMAUKInformationBooklet.pdf
6. https://www.citizensadvice.org.uk/
7. Certain images taken from https://www.rcplondon.ac.uk/guidelines-policy/diagnosis-fibromyalgia-syndrome

P.S. What frequently asked questions do you want the answers to? Please do comment with any useful advice or suggestions for fellow chronic illness warriors.