However this year has really been bad and I don't know where to turn, the pain and tiredness has reached new levels and nothing my doctor prescribes works effectively. It's like my whole life has been changed and my world has become so much smaller, just a trip to the shops is an effort and has consequences for my whole body. Is this how everyone feel or is it just me. I feel that I am screaming and nobody hears. My nearest and dearest don't really understand they say they do but how can they. There's nothing to see just me complaining.
Does everyone feel like this?
Written by
Ktatmolehole
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I really understand what you mean as I am exactly the same.I was diagnosed nearly two years ago and I am much worse now, I now have to use a stick when I go out. Just recently my back is so bad I don't feel able to go out at all. I feel half the woman I used to be and I hate it
I can relate to this so much, I keep thinking about the past what I could do and comparing it to my limited lifestyle now. You never dream that this kind of thing will happen to you it's always someone else. Hopefully talking on this site will help us all get stronger in mind to deal with this horrible illness. Xxx
omg this is so me im having to pace at a new level but just before this I tend to fight the changes and push myself and end up making it worse well don't know if you've attended a fibro management course but they really help one learn how and when to manage your own fibro. and don't worry too much I know how distressed you must be feeling but if you just take it easy on yourself and start your day again and if your able to cause I know how consuming this illness can be you might loose a few moans be able to take a moment of interest in one of your family or some affirmations to someone this might help just a little as our family's have always relied on us and fibro changes this to some degree and these changes can leave us little stressed. well im stressed now I've spilled coffee on my keyboard as a result of one of my fibro pass outs so using an on screen keyboard god its almost as slow as I am lol love and blessings xxx
Yes when I'm having a good day I push myself and do far too much and later in the day and for the next few days I am in so much pain it's unreal. I do feel like I am letting my family down I was always the one organising trips and going places, running the home as well as a part time teacher. All that has stopped I rely on my hubby and children which I find hard to accept. I haven't heard of a fibro management course is it run by the NHS can I ask my doctor about it. I do think I need some help I am not coping as well as I was. But thankyou for contacting me it helps. Xxx
hi there its nhs linked Sequol is like our local social services for all types off care they have a psychology department that offers a fibro management course, I hope they have something similar in your area probably worth asking your doctor really hope this is helpful xx
welcome. We can relate to what you are feeling. You have landed somewhere where we all understand what it's like so hopefully you won't feel isolated. Like you, I felt relief to have a diagnosis but it is life changing in many ways. It is trial and error to find the medication and support that works best as it is a very individual problem. It can be hard to explain to others just what it is like unfortunately.
Thankyou for contacting me. It does help to hear others have the same thoughts and feelings. I don't feel quite so alone know I've found this site. I just wish there was more help for us out there it seems to be the poor mans illness, people find it difficult to understand that you look perfectly fine but on the inside are hurting like hell.
Welcome to the FibroAction Community Forum ! You can always come here to talk to others as we share our experiences in the hope it will help others.
I personally think many people living with Fibro have felt this way, as I know I have. The journey to acceptance is not an easy one and I'm afraid it's usually an emotional journey of ups & down. Accepting you have Fibro doesn't necessarily mean you've given up fighting it but more often than not realised you have to learn how to adapt and listen to your body. This comes usually after a little time and often using a combined approach the symptoms can be managed by many to maintain a relative quality of life for long periods of time.
Many people living with Fibro fall into the the trap of Boom & Bust or Push & Crash cycle as explained in the following post;
Please try not to 'beat yourself up' so to speak I think you'll find these are normal feelings that you will go through. Kubler Ross (1969) states that the five stages are denial, anger, bargaining, depression and acceptance but please know we are here as you take time to come to terms with your recent diagnosis.
You mention you are struggling with your symptoms, the best advice I would like you to consider is reading through the 'All about Fibro' series of factsheets and in particular evidence based recommended treatments for Fibro. You can download all factsheets and print them for reference or take with you to discuss your treatment plan with your GP.
Here is a couple of links from our FAQ section which you may find helpful;
Firstly, I would sincerely like to welcome you to the forum, and I really hope that you are feeling as well as you possibly can be today?
I am so sorry to read that have have this horrid illness and I am genuinely sorry to read that you have been suffering in the way that you have been. I see that you have been given lots of really useful information, so I won't confuse things by adding to it.
I sincerely hope to bump into you around the forum in the future.
Take care
Ken
Hello, I feel the same, was diagnosed last May delighted at first to get a name for this after years of on/off pain and now just feeling so low and fed up some days, but try to keep positive. I think it's a bit like grief but we are grieving for the person we were...
Yes, thats exactly what i hhink, my life has bfcome soo much smaller, maybe one day i'll be sucked into a black hole and dissappear for ever. A trip to the shops can have huge consequences, i went out saturday for a while, today exhausted, could barely move and so much psin was in tears. Had to resort to a diazapam tonight as was feeling desperate. This is what happens when i do not pace myself.
What you're going through is very tough and unfortunately part of the process of Fibro that we don't seem to get any support for. I found the first 1-2 years after diagnosis the hardest (diagnosed 2.5 yrs ago) - learning to accept that you are ill, that nothing will take it away & nothing will be the same again. It takes time to grieve for your old life and to adapt your new life. I have gone from being fit & active to having to use a mobility scooter and walking stick, but with pacing, time & support from pain clinic I am learning to adapt the way I do things, rather than stop doing things.
Good luck finding the right combination of medication, pacing, etc to help you.
No advice, you've already had the best. Sadly your story is all too common as regards support.
Welcome indeed. Looking at Emma's links, is there a group near you. This one is only at the end of a keyboard and there's nearly always someone awake - it seems it's always Ken's turn
Moan away, we all can take it and give as good as we get.
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Wrote this poem a year ago at the depths of my despair, and now health and I are about to collide!
Having a horrible day :(
The hunt for a diagnosis
