Fibro for Life?

I too had undiagnosed fibro for many years until finally a diagnosis and I thought that would be that. Get some pills, some therapy and I'd get my life back. Six years on it has not happened , you grow tolerant of pain medications, or addicted and then suffer withdrawal which is horrid. The best you can hope to achieve is pain and fatigue management and stop fighting it.

I get cross when people say 'a positive attitude will help' when they do not know what 24hr pain feels like but I do think that acceptance of the fact you are never going to be the same person again ever, helps. BUT, a big but, do not let this condition define you as a human being or you will loose your self to it and never recover from its grasp, It will truly become a downhill battle.

I began by getting some help from the pain clinic, most hospital have one. I tried acupuncture , no good for me, but I did have some behaviour cognitive therapy which looks at how you handle pain, your thought processes and basically its nice to have someone who understands how these processes can make the condition worse, to help you.

I have Fibromyalgia it does not have me.

Every day is a testament to how I manage it, and that includes all the bad days lying in bed wishing I could tear my skin off! On the good days though I achieve more, even if it is a visit out somewhere, with help of course. I also do a lot of crafts which give me a sense of achievement, not suitable for all, I know but with time and patience and a constant monitoring of your self, - here's that word,- positively, can make a big difference to how you let this chronic condition take your life away - or not.

Start by saying I can, instead of I can't." I can make a drink for myself, if you could carry it in to the living room for me" - an example of acknowledging what you can do and at what LIMIT you acknowledge you need help.

It took a long time for me to acknowledge I needed to use a wheelchair for longer trips out. If I was stubborn and walked for the day I would flare or crash, that feeling of someone pulling the plug, but if I swallowed some pride and let my sister push me around town, I have a better day and enjoy it.

Just a rough example of how if you approach these disease differently, with acceptance and not confrontation, it can be handled to a degree. As said it is a life long condition, as are many other's. You can sit back and bemoan your lot (been there) or do something about it.

"little steps" "plan and pace" these are a place to start. I hope this helps a little and I didn't become too preachee. like Butcher 79 said about her kids, she wouldn't know what she would do with out them, my three grown up girls helped me too , still help me, and I would never of pulled myself through the initial depressing stages of fibro if it hadn't been for their unconditional love and acceptance.

Stephanie.

4 Replies

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  • What a wonderful post Stephanie. You have clearly found your own acceptance of this wretched condition and your words of wisdom can help us all. I think I have only just started the 'acceptance' phase myself having spent the last year or so desperately looking for some kind of cure so that I could get back to the job I loved. I am now beginning to accept that this is very unlikely to happen. I do have a great GP though and she helps me to manage my symptoms as much as possible so I should count my blessings. All best wishes to you. Jane x

  • Very inspiring Stephanie, thanks for posting this! I have accepted my Fibro, took me a few years. I think we all go through a kind of mourning phase for the old us, I know I did. Once I had come through that stage, it was onward and upward. The doesn't mean to say I don't have the odd day where I don't feel like screaming the four walls down, but on the whole I just get on with it.

    There will be bed days, good days, bad days etc., it's all part and parcel. I am determined that Fibro won't finish me off as I thought it would at the beginning. I am still able to do a lot of things just in a different and slower way. I don't think many of us realise our full potential because we are so exhausted and in so much pain all the time. Once our pain and fatigue is better managed and controlled I am sure we could do far more than we ever dreamed of, on a good day of course. ;)

  • Angelstar I agree with you "I have Firo it does not have me" we may not be able to completely beat it but by acknowledging it we can learn to deal with it. The problems arise for many of us when it is not the sole problem but fights with our secondarys. The overlap between can have so much debilitation We are back to the power of positive thought"Ican so I will" dont let it beat you xgins

  • Angelstar - what a lovely post and what a great way to think of fibro - you have it, not it having you. Never thought of it like that. I agree that we should all look at the positives and what we can do, but unfortunately it's tough sometimes when then seem to be so many negatives. On a positive note today, my pain levels are not too bad, but my head feels like cotton wool LOL. Going to a family christening tomorrow and I'm looking forward to that so I'm going to pace myself today because I'll need all my energy for tomorrow. That's what we have to do - pace ourselves, think ahead and plan what we give up our energy to. Hope you and everyone else has a lovely weekend. Wrap up warm if anyone is going out to a bonfire display (we can't go because our little dog is terrified of fire works so we have to stay home with her). Love and gentle (warm) hugs to everyone. I am going to be positive today.

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