I have read so much on the physiology of this bonkers illness, how complex it is and all the things that go wrong in the body to make up having Fibro.
But I just don’t understand how you can be okay one day and feel so terrible the next. Where does the pain and fatigue go, how can it just disappear?
Yesterday I had a day where I felt almost normal. I got up early (for me anyway, at 9am), I showered, washed and dried my hair, put on makeup, ironed some clothes to wear, got my little girl ready, stripped the bedding from our room (I daren’t even say out of complete shame how long it is since that was done), I went for a walk with my little girl (it’s been months since I have done that), I put washing in AND hung it out, my brother brought his new baby for a cuppa (us not the baby) and I held and cuddled him and fed him. I then made tea for my girls, they got ready for bed while I cleaned the bedroom, ironed the clean bedding and put in on the duvet. Then we had movie night. I even kept awake. We then put them in bed and my husband couldn’t believe it when I said let’s watch a film. I don’t usually stay awake after the first five minutes. I then sat and watched the entire film. OMG. How could this be? The week before last I was climbing the walls in pain after getting a virus. Now I know some of you may tell me off, I was hardly pacing was I? Did I pay the price today?
Well I did in so far as I was very tired from staying up too late. I didn’t get up until 1pm! But when I did I felt great, no pain (except for an aching neck)and although we just chilled today I made Sunday dinner and have ironed uniforms for tomorrow. I even think I could manage the gym tomorrow.
So going back to the question where does the Fibro go? I know probably it is a combination of the meds, physio, learning to pace, work not being quite as stressful as it normally is and that I have probably just come out of a very long flare. And don’t get me wrong I am not knocking it, I just don’t get it. The only negative aspect of feeling okay is that you realise just how bad you having been feeling and how much this illness robs you off. It also makes me realise just why people don't believe you are ill. If I don't understand how can they?
I just pray it lasts!
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melodypond
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That is the million dollar question and that's why we find it so hard to get diagnosed etc
Last week I sat on the settee and suddenly from nowhere the whole of my left thigh was so sore I couldn't touch it. No redness no swelling just so sore I had to change my clothes lasted two days then Gone......It's such a weird annoying thing to have , I wouldn't wish it on anyone,
Yes I suppose if any of us could answer the question we wouldn't be here as we would know how to keep Fibro away and have made a fortune doing it! It drives me insane thinking about it though!!
I know so how you feel - I haven`t really got to grips with thi thing yet, so, when I do feel OK I think yippee it`s gone, but then it come wanging back. I do overdo it when I feel better because I feel like it, but then the next day I usually pay for it. Good you got so much done!
Yes I do get lulled into a false sense of security - pretending I haven't got fibro anymore. That's the worse bit about feeling okay, it's such a bummer when it doesn't last!
If I knew what caused the good days, I'd do it all the time, and if I knew what caused the bad days I'd stop - unless it was eating chocolate, in which case I'd have to think about it.
I know that overdoing it on a good day means you'll pay for it the next, but if you don't do that, then however do you get anything done!
I've spent two days catching up with cooking and washing too - but my flat looks as though a hurricane has passed through, followed by an earthquake, and I know I won't have the energy to sort it out tomorrow.
I used to be able to do a full day at work, clean my whole house in a couple of hours, cook a meal then go out and party all night - somewhere along the way things changed!
Oh well - at least I do have a good day fairly frequently, so i shouldn't complain!
This is why I don't think I have fibro. I don't get flare ups, I don't get good and bad days, I don't get pains that come out of nowhere for no known reason. I have pain constantly in particular places, (hands and feet) and aches in others (arms and legs) and that's all. Apart from IBS I don't get any of the other listed symptoms (headaches, fog etc), but the rheumy thinks I have fibro. I do have very weak arms and legs, my arms ache when I wash my hair, my shoulder aches from using crutches or from carrying my computer work bag. I do suddenly desperately need to sleep, eat or drink and its a strong physical need. BUT I don't get what you all just described. Do I have fibro?? (I do feel sorry for those of you who get that awful 'no way you can do anything today' thing. So frustrating. I feel very lucky that I don't have to pay the next day if I do too much the day before. But I'm frustrated by my lack of diagnosis. Do I have just (!) osteoarthritis in my hands and feet, and weak arms and legs?? I also have itchy bumps on my hands and feet but not like psoriasis. Is that conducive with psoriatic arthritis??
I would really appreciate anyone's continued thoughts on this. I think I ve become obsessed with getting a diagnosis!
I was diagnosed with Fibro 3 years ago and like you have constant pain and much of the symptoms you describe. But I also have flare up in which my constant daily pain become unbearable and I am literally bed bound. My arms and wrists constantly ache on normal days, but on flare ups I cannot use the mouse on my pc and really struggle with cups/mugs of tea. On normal days my legs & feet constantly feel like my nerves are exposed and on fire and the area around my knees are so tender to touch, on bad days I cannot move. My little dog jump on my lap last week and I cannot begin to describe the pain that shoot through my body. I was instantly in tears and felt really terrible, for me and her. This illness has so many symptoms and affects so many people in different ways.
Thanks so much for the links, they have some excellent info/comments. I am still waiting to crash and burn/boom and bust and can't believe that after that weekend I still feel okay. I have even been the gym this morning but am now resting and won't do anything more strenuous today, though of course still have to pick up the kids from school, make tea and take the little one to her swimming lesson! So it is hardly sitting doing nothing. It is very hard to pace isn't it? I am definitely going to try but while I feel like this I just have to clean my bathrooms! I can't bear how I can't clean my house, do the ironing, or do activities with the kids normally. I am thankful for every moment I feel like this, granted it's not 100 per cent as a normal person would feel, more like 80 per cent, but hey it's a whole lot better than I normally feel.
I was interested to see how you handle a flare. I tend to cope on my own, but it would be good to have a massage therapist I could call on (I really have to trust someone before I can let them prod and poke me!) and also somewhere to go to discuss pain meds. My doctor is lovely but not sure she would know what to do with me in a flare! I am having physio and seeing an OT but I do wonder if a pain management clinic per se would benefit me. Having said that I am going to feel a fraud going to physio next week if I still feel like this! You can't win can you?!!
Well Done!!!!! It sounds like you are getting the "hang" of Pacing. The hardest part is accepting that this has to become your new way of life and you have to practice it on a day to day basis. It is so easy when you are feeling well to overdo things -- to stop me doing this I "plan" my days carefully and try to include a good variety of activities -- e.g. a short walk with the dog, a little ironing, some baking, yoga, a little gardening -- the main thing to remember is as soon as you start to feel any fibromyalgia symptoms then you must stop what you are doing and take a break!! Also you have to learn to say NO when others ask too much of you -- this may sound selfish but it is all about "getting a happy balance". I would still see the physiotherapist because he or she may suggest gentle exercise -- I find gentle yoga helps me. Keep doing what you are doing -- basically you are "listening to your body" and not doing too much! xx
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FAMILY UNDERSTANDING
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