Coping with Fibromyalgia

Diagnosis & Grieving

Being diagnosed with a chronic condition like fibromyalgia can turn your world upside down. The impact of the diagnosis and the realisation of what fibromyalgia is along with the knowledge that there is no cure can cause desolation and an outpouring of every negative emotion we have.

There are a number of articles and information about this subject that relate these feeling to the grieving process.

Many people believe the grieving process only relates to death of a loved one/family pets and people we know, but research has shown that the process is also evident in health care from soldiers loosing a limb to being diagnosed with an uncurable illness.

There is a very good book by Elizabeth Kubler-Ross which breaks down the grieving process into recogisable steps,

Denial- It's common for fibro sufferers to reject their initial diagnosis and try to ignore it

Anger- This is the 'why me' 'what have I done wrong to deserve this' and the anger can be inwards or focused at those who care for us.

Bargaining- This phase can entail sufferers trying to make a deal with God for example, 'If i'm really good' or 'i'll do something' if in return you make this fibromyalgia go away.

Depression- At this stage you give up fighting the fibromyalgia and diagnosis, with the realisation that it is not going to go away and nothing you can do will make it go away.

Acceptance- This is the point where you come to terms with the diagnosis and the fact it won't go away. This allows you to move on and deal with your own individual situation in a more positive way.

People move through these steps at different lengths of time and not neccessarily in the above order as well. Sufferers are all individuals and fibromyalgia affects everyone differently and this is reflected in how they deal with it and the diagnosis. For sufferers who have waited a long time for diagnosis may initially feel relieved, then the realisation can hit home that there is no cure and that they can't return to their 'normal' life. It may be at this point that they start to go through the grieving process.

After diagnosis if the fibromyalgia causes a deteriation which could mean loosing a job, restricting their social life or how to care for their own children, can cause the grieving process to kick in again as you morn for the lifesyle you've lost.

Knowing about the grieving process doesn't stop you from going through it, but it does help you understand that this is a normal and natural process and that you aren't going crazy. Also with this awareness it could help you recognise if you get stuck in one stage enabling you to seek the help you need. Finally when you recieve your diagnosis it can seem like a life sentance, but with the help of information such as this it can help you see it as a new begining of your life with fibromyalgia.

Managing Travel & Special Events

Going on holiday, nights out or even having someone calling round for a meal can really throw a fibro sufferer. It can cause anxiety and use all their valuable energy at double the normal rate every day activities would use it, possibly resulting in increased pain/symptoms or a flare. With a bit of planning in advance sufferers can counteract this resulting in an enjoyable time rather than an exhausting and painfull time.

Step one

Take lots of rest before, during and after the event.

Before the event rest so you can store up energy and minimise any symptoms

During the event rest to limit any symptoms

After to help recover your energy and deal with any symptoms.

An example of this is going on holiday for 2 weeks, but plan for 3 weeks, enabling you to have 3 days before the holiday resting etc, then the holiday with built in resting time and ending with another 3-4 days to help recovery.

Step two

Plan your event in great detail to minimise any potential problems occuring which could cause a flare up of your fibro symptoms.

Travelling - add in regular rest breaks, at the airport book a wheelchair or book help at the trainstation etc

Finding out the schedule at an event ie a family wedding or party so you can plan how much you can participate or where/when you could rest

On holiday plan activities that you can do when you're ok and activities/rest when your energy levels are low

So by having these plans in place it will give you the strength to resist pressure from yourself or others to do more than your able which could result in a flare.

Step three

When you've put your plans into place talk to the people involved ie, your partner/family or the event's hosts so they are aware that you may need extra time to do things or that you may not be able to participate fully and will need to rest at times but more importantly make others aware of the unpredictability of fibromyalgia. This will help to prevent uncomfertable situations, limit pressure to participate and hopefully limit your symptoms.

Step four

If your normally would be in charge of arranging holidays or family celebrations, look to changing your role and ask for help. If the family always come to you at christmas, see if someone else could do the cooking/preperations or they bring a dish each. If you normally drive ask someone else to drive instead. By making even small changes to what you normally do could reduce your symptoms or the risk/level of a flare afterwards

Barnsley Fibromyalgia Support group

Supporting fibromites their family & friends