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I have been diagnosed with fibro - What's next?

Fibromyalgia is a chronic pain condition that affects you in so many ways.

There are over 200 symptoms that you may experience, hopefully not all at once.

Some people may deal with this easier than others, it’s down to the individual, how you deal with things may suit you and not another person.

Fibromyalgia affects 1 in 20 people and mainly females. It can be like having the flu 24/7.

Fibromyalgia is a very difficult condition to understand, it has been said that it can all be in your head, it’s not real. But it is real. Finding a G.P that understands you will help greatly. If your G.P doesn’t understand you try looking for another G.P. That can be half the battle. You need to have a medical professional that understands you.

It can be very difficult to come to terms with the fact that ‘this is you now’.

Try and research as much as you can. That might be going online, speaking to medical professions such as rheumatologists, physiotherapists, G.P’s etc.

Wherever possible join a support group. There are many Facebook pages that you can ask to join, also check your local area, there may be one local to you that you can go to every month or so. It’s been rumoured there is a great one in Coventry!!!

Talking to people that understand can help so much, it’s almost like having a lifeline when no one else understands what you are going through, what you are feeling, you can ask people how do they deal with fibromyalgia, do they stay positive or become very depressed, can they see something positive come from something that feels so negative?

Please don’t try and deal with this on your own. Everyone needs someone to talk to. In a way you are starting a new life, in some respects your ‘old life’ has gone.

It is very much like going through the grieving process –

  • Why me?  What have I done to deserve this?

  • Anger, depression and many tears may be shed once you have been diagnosed.

  • Acceptance – ok try and look forward. There is a future for you but you have to make that choice. Do you let fibromyalgia take your life over or do you fight it and try to adapt to who you are now.

  • Are you still able to continue at work? Talk to your employers to see if there are adaption’s that can be made in your work place. Take a look at Access to Work online, this may give you some idea of what adaptions can be put in place so you can continue to work and do your job. If allowed, see if you can work from home so many days a week?

  • If you are unable to continue to work look into claiming benefits. This is not a nice thing to go through and can be very frustrating at times BUT there is a lot of help out there to help you claim for what you are entitled to. C.A.B., support groups usually have a lot of information either written or the members have first hand experience of this – talk to people there, ask questions, ask for help. Someone will always help you – just ask.

Learn what is best for you. Everyone is different and deals with things in different ways. What works for one person may not work for another. This can be learning how to cope, medication, dealing with home life, dealing with depression, trying to find a work/life balance, etc.

Fibromyalgia is a lifelong condition. Some days will be better than others. Some days will seem never ending when dealing with extreme pain, fatigue, migraines, I.B.S., fluctuating temperature, etc.

You need to try and find the right balance that works for you.

If you know you have a busy time ahead try to rest for a few days before and afterwards.

If we are having a fairly good day, we do tend to push ourselves more and more but then suffer for it greatly over the next days. It’s about pacing yourself. Try to set realistic goals. Example – the washing up needs doing, the house work needs to be done, the beds need changing, etc. Most of the time these will not be possible to achieve in one day so try and break it down. Maybe wash up and do a little vacuuming or do one lot of washing and make yourself a snack. You need to rest in between what you are trying to achieve on that day. There is nothing wrong in doing a little and then having a rest and a cuppa. You need to allow yourself time to recharge your batteries.

Once diagnosed, it may take a while to find the right balance of medication that suits you. Remember what works for one person may not work for you. It is usually a combination of pain killers, anti inflammatory, anti depressants. There is a vast combination of meds that can help you if your body can tolerate them. Try and take your meds regularly, this may help to keep on top of your pain, some days you may feel the benefit of them but on other days you might need extra pain relief. Your G.P/Rheumatologist will hopefully prescribe what may help you. If they do not work try something different . Keep trying until you find the right balance for you.

Gentle exercise is said to help a little. Some people try swimming, Tai Chi, Pilates, meditation, walking etc. Every one may find their own way of trying to do a little exercise. Not everyone does, some people find it hurts to much after so, is it really worth the pain and suffering afterwards? You decide what is best for you.

Family members and friends may not understand why you are like you are. On the outside we can look ‘well’ but on the inside you are in agony, suffering in pain, mostly suffering in silence as we don't want to admit to ourselves that we are in pain, having a bad day, don't want to keep saying no and letting family/friends down. 

Try to encourage them to read up on fibromyalgia, if you attend a support group take someone with you so they understand a bit more. There will be days when you have to say 'no I can’t do that today', or 'I need to see how I feel' if something is coming up, an event etc.

Learning to say no can be very difficult and frustrating. You may lose people you though were friends because they do not understand what you are going through.

Wherever possible, joining a support group in your local area can help greatly. It will be a lifeline for you. People that go know how you are feeling, understand what you are going through. There is usually a good support network with support groups. There is normally a Facebook page, email address, phone line, messenger, WhatsApp etc that you can access when you need to talk to someone that can help with what you are going through.

There is always help somewhere, instead of feeling depressed, lonely and trying to fight this on your own, seek help.

If possible, try not to let fibromyalgia become a death sentence for you. Once you start on a downward spiral it can be very difficult to find a way back up.

Yes it can be very painful, some days you may have to stay in bed due to pain, not sleeping etc but if possible try to stay positive. If you have managed to achieve 1 or 2 things in a day, look at it as an achievement rather than looking and saying ‘oh I have not done this or not done that’. It doesn’t matter, what matters is you and trying to stay positive.

If you need a nap – have one. You will recharge your batteries for a while and that may help you to do something else later that day.

Talking helps greatly, remember 2 heads are better than 1. The other person may suggest something that you haven’t thought about. How to tackle something that needs doing so it won’t affect you as much as it would normally, etc.

From my own personal point of view, the best thing I ever did was join a support group. After the first group, I left to meet my mum and I cried. My mum said ‘What’s wrong’? My reply was,  ‘I’m not on my own anymore’, people knew what I was talking about and that was the greatest feeling I had had since being diagnosed.

I can’t recommend it enough. You will never be lonely (hopefully) when you join a support group. You will make many true friends that will be there for you when you need them. There is a great support network available to you.

                 Good luck with the next chapter in your life and keep smiling.   

This was written by Claire (Chair of Coventry Fibromyalgia Support Group) for people to read and understand that what they are going through is real and hopefully to offer some light at the end of the tunnel that they are not alone and there is

I have been diagnosed with fibro - what's next?: About Us

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