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Fibromyalgia Action UK
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Hi, I've just been diagnosed with Fibromyalgia.

I have been very fit and sporty all my life and have had to stop everything as I have been so ill. I know I will never squat 100kg, deadlift 60kg (I'm 43 and 5 foot 2) or do triathlons again but wondered if there was anyone else in the same boat that could offer advise.

Thanks

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I wish I could but I have never been sporty. Had Fibro all my life so limited in what I could do.

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Also foggy day. I hope you find the answers you seek.

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You must be an expert in pain management. Do you have any tips? Best wishes to you xx

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Stay as positive as you can! Exercise or stretch daily if possible! Listen to your body it will tell you what to do or not to do. Meditation works wonders for me. Keep a diary of the the pain and what you do on a daily basis. You can look back and see what causes you pain. Find a doctor that will listen and be willing to work with you. Try and find the right meds for you every one is different. Relax when you need to and try not to do everything on good days. That will cause a flare up. Decide if what you want to do is worth the price you will pay. I will think more on it. You might have to remind me. I live in Texas so it's 2:30 am here and I have to go to sleep! Maybe possibly hopefully hugs

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Thanks hun - sorry I've not replied sooner. We've been away on Salcombe (coast in Devon UK). We have our caravan down there and it's fab for the kids. Been ok mostly for the week but my left leg, foot and hand feel like they are permanently sprained. Do you experience this? xx

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Yes mam I do but some of mine is neuropathy. I would have your doc look at it to be safe.

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Sorry you have this diagnosis, it comes hard having to stop your activities this way, I'm speaking from my own experience and didn't give it a thought at the time, do watch your weight I put on loads quite quickly when I stopped running it seems obvious but it did not even cross my mind. Just stay as active as you can. Lou xx

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I used to walk miles and miles every day now I feel like I can do the truffle shuffle......and not just my stomach HA

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I've put on a bit of weight. I'm used to being toned slim and muscular. I'm finding it really hard to cope with having a bit of a belly and chest. Really want to try and shift it. I guess my age and hormones don't help either. Hope you're feeling ok xx

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Thanks Lou - I've always been very aware of my weight. I don't want to skinny - never had. I'm slim and muscular. It's hard not to be able to do it. I think positive thoughts help sometimes even through the pain. Claire xx

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Hi there, love the picture, I used to be like you slim and athletic, I'm still slim but cant run for toffee now 😞. I still try and walk as much as possible though as I find it does help. One of the biggest things with fybro is acceptance which we all seem to struggle with, we'll get there in he end,make care

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Totally agree - it's almost like I'm grieving for what I was 6 months ago xx

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Hi Claire, yoga is a good thing for keeping toned and gentle enough not to be too exhausting, I also have a Wii fit which I use and a dance game for the Wii that way I can tailor my workout depending on how I feel. I tend to try and do something even when I am not feeling great although if it is a really bad day I will let myself off. Hope you find something that suits you so you can stay as active as possible. Steph

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Thanks Steph. I'm doing yoga and pilates. I'm hyper mobile so still extremely flexible. I know I'll never be squatting 100kg again but I just want to be slim. I'm only 5 foot 2 and I've shrunk an inch. I'm a slight frame so any excess pounds really show on me. xx

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I was not entirely athletic, but active. I can't bicycle with turned down handlebars due to worsened carpal tunnel syndrome andenergy level for long rides, but am hoping that I can do some easy bike riding with the upturned kind (and wide seat, lol). I used to roller blade. So far, that is out of the question. I do some gentle yoga, though not enough, but find it helpful. I used to do tai chi; can't afford classes right now. I walk, but long hikes and rock climbing/hopping will probably always be a memory, but at least a good one.

Well, don't give up on finding other activities that you can enjoy. Plus, you may find yourself doing better. Maybe not triathlon better, but maybe some running?

I wish you the best. I'm glad you came to this forum. There are many helpful and supportive people here.

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Hi Claire

I hope so too. I have just had both my carpals done and can see the benefits. I hope you manage to hop on your bike. Fresh air is fab xx

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Welcoem to the forum and it is wonderful to make your acquaintance. I sincerely hope that you find the forum useful, informative and loads of fun! I want to genuinely wish you all the best of luck.

All my hopes and dreams for you

Ken

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Thanks Ken x

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Hi Clare,

I also used to be very sporty, very capable and the 'go to' person when family and friends needed some help. It's a shock to the system to realise that you cannot do what you used to do.

The most helpful thing to me was to learn to acceptance - to accept that that part of my life is over and I now just have a different life.

To accept that there are some things I can't do but lots of things I can do, just different things.

Overall, if you pace yourself, adapt, evolve and find joy where you can, you will survive!

Best wishes, gentle hugs xx

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You're surely right maggi. That is the keyword, acceptance. I know I can drive myself crazy by fighting it or just stay in denial.

The grieving process goes along with a chronic disease like this. I think we all probably need to go through those steps before we find the acceptance.

Shoot, I think I'm there one day, then the next I'm super po'd, frustrated, and depressed. But, like any bad day, it passes. What helps me the most is to plan out my next day as much as possible and plan things that make me feel productive and others that relax me.

Like Claire said, fresh air is fab. I consider myself lucky to be able to take the dogs out to the estuary, the beach, the mountain woods . . . even if not for as long or as far as once upon a time.

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Thank you - I so agree. It's hard to go from the person who everyone talks about as so super fit to the person who everyone looks at and think I look fine. People can't see the pain xx

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Absolutely Clare, you are grieving for a very substantial loss and it takes time to deal with that. I find that planning, as you do helps me to achieve - even if all I achieve is a clean bathroom or a smaller pile of ironing! and on the days I can't do much, I just have a smaller achievement.

Not forgetting the fun stuff as well, always allow time for family and friends - they come before the bathroom and the ironing, after all, there is always tomorrow..............

Your dog-walks sound fabulous, one day I'll have to come and join you!

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Perhaps we could all go dog walking xx

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I'm sorry you have fibro, it's a frustrating thing to live with and can be very painful for some people though not as bad for everyone. I think it's fair to say that we all find it's important to pace ourselves otherwise we pay in terms of pain, also that most people have flares. It's also true that over time many of us find we have other diagnoses of things similar to fibro such as B12 deficiency, hypermobility syndrome, myofascial muscle cramps, even ME, and it is certainly worth having your Vitamin D level checked as many people in this country have low levels.

I have found it helpful to try to understand fibro, to research and know about the symptoms and treatments by researching online, joining the local support group and Fibro uk. Expert Patients have the best outcome measures so it's worth taking the time to do that, also keeping a clear diary of any new symptoms so if they develop you have a record of how long ago, etc.

Suex

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