Phew!! It’s good to know I’m not alone! After 2 years of tests and more tests & having hit rock bottom a 2 months ago, I have been diagnosed with fibro. This comes as a relief to finally be believed!
I am taking Sertraline, am on a waiting list for a ‘body reprogramming’ course and have learnt to meditate which really helps!
However as a runnerI realise that I am possibly different from many other sufferers and feel as if I’m in a fibro box all of my own! Running is my passion helping me both physically and mentally. I have been lucky enough to secure a place in this year’s London Marathon, a life long dream which I am determined to fulfil and raise money for FMA UK but training for it now has the extra fibro hurdle.
I am learning to read the signs, pace myself and deal with the pain, fatigue, fog, nausea etc by keeping a diary and relaxing so much more but it is still tough. For the first time in many years I have had to cancel work for two days. I feel like I’m letting people down although they are all very kind and understanding (I am now a semi-retired supply teacher).
Embracing and not fighting fibro seems to be the key but I wonder if there is anyone else out there in a similar position of facing an almighty physical challenge ahead?
Thank you all.
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B0nb00th
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Hello B0nb00th. Welcome to the club nobody wanted to join. You are probably right - don’t think many of us on here are as fit as you!
But that must be a plus. I’ve never heard of a ‘body reprogramming course’ . I’d settle for a ‘body recovery course’!
However, I imagine the same self help tips that work for us couch potatoes would work for you. Eg stretching, pacing, sensible diet and a positive mindset. So my advice is to keep reading all the posts and try to learn as much as you can from the experts on this forum. Not professionals - but fellow sufferers who know how you feel.
Please let us know how your training goes. I always watch the London Marathon on tv so I will be looking out for you!
Thank you for you support. For information, the ‘Body Reprogramming’ model has been developed by our local hospital. It differs from previous approaches as it uses a new way of thinking about the body and how it can become ill. The website is worth visiting and the online/downloadable booklet has lots of sensible advice. bodyreprogramming.org.
It would be good to see what you think.
It’s good to learn what works and doesn’t work for other people.
Hi B0nb00th. Thanks for that information. I’ll certainly have a read about bodyreprogramming. I’m always on the lookout for a new way of thinking about fibromyalgia.
Tbh - I think I could go on Mastermind with that as my specialist subject! (Obviously this is a joke!)
Good luck in the Marathon. How do you deal with brain fog? What body course, are you waiting to go on? I have had the same battle about belaief from doctors and I know how emotional it is when they call it. I would love to be able to run, however only up to 10, 000 steps a day.. Any tips please? Xxx
desquinnPartnerVolunteerFMAUK Trustee in reply to Anth14
If you look at some of Manu2015 posts you will see his journey from increasing his walking to doing a 5K
Thank you. It is possible to do running with this then? X
desquinnPartnerVolunteerFMAUK Trustee in reply to Anth14
everyone is different and starts from a different place but we have had a number of people that have run for us with the condition. Activity is good for the body and if running is not something that is achievable then something like Taichi is possible.
Thank you. I am starting walking. Dr, says walk every day. At first I could only do 3000 steps and fall asleep. Now I am up to 10, 000 and no sleep. I have acupuncture which is also making me stronger. Unfortunately i seem to be stuck in a loop and I have decided that I need to break the pattern. I am off work until i get much stronger. I have my doctors supporting me. I will also try and look at my diet.
Thank you for the inspiration 🙏
desquinnPartnerVolunteerFMAUK Trustee in reply to Anth14
that sounds like you are following a plan that works for you. Don't be tempted to push too much and listen to your body.
In case you missed the link bodyreprogramming.org/ B0nb00th put up. Really interesting read and taken a bit of inspiration and given myslef a little push to do more and be a bit kinder to myself. GL as sounds like you are making great strides 💪💪
Hi Anth14, I must admit the brain fog is the hardest to deal with. Not giving in to it and changing activity (to make my brain focus on something else) seems to help a bit. Physical activity for me is always the best, either a short walk or run in green surroundings. It gets the oxygen moving as well as distracts me from pain. I’ve been using the ‘Calm’ App to learn meditation techniques to manage pain too. It’s not for everyone but does help me a bit. Being a bit more ‘chilled’ overall seems to underpin all the fibro symptoms. It was a new GP who referred me to our local hospital/pain management/body reprogramming course. Have a look at the website bodyreprogramming.org
I’ve been a runner for many years so getting fibro was a bit of a shock. (It was getting a marathon place that tipped my stress level over the edge & fibro exploded. I felt so out of control!) I wasn’t about to give up running but rather let fibro and running be friends together!
Well done for 10,000 steps a day. If you really want to start running then little goals like a few more steps or incorporating a 1minute jog in your walk might help. I definitely find that gentle stretching is important too.
So the body reprogramming seems to explicitly forbid running things like marathons, so what happens to you now?
So much of the program is common sense and reaches conclusions that mirror my own. Chronic pain sufferers don't seem to be able to have exciting lives sadly.
I suppose the reason mindfullness/meditation never worked for me is that I fundamentally disagree that world is a "safe place", if it had been I probably wouldn't have developed the conditions I have in the first place.
Also realistically who is free enough to govern their time in half an hour slots? Although I do agree it would be helpful!
Just on the mindfulness/meditation thing...the spiritual version of that is really not my cup of tea. And I just don’t get it 🙂
But I’ve since learned that really it’s about being in the NOW - and not being in your head/thinking about pain.
So I use art as a form of mindfulness. I’ve taken to Zentangle and Doodle art (see pic of a recent one) because there’s no rules or pressure and all you need is paper and pen. When I’m doing this, I can’t or don’t think about anything else - and it helps reduce my pain and stress.
Any kind of absorbing hobby has much the same impact. Could be worth a go.
I practised mindfulness and meditation for years, hated it to be honest, my pain levels would always go through the roof and my anxiety. Unfortunately for me as I am an artist art is not relaxing for me, its too big a thing in my life to act as an alternative form of meditation!
I do enjoy exercise but having to stop every 20-30 minutes would be a real problem for me as it takes about 20 minutes for my body to get warmed up and for me to start to feel better, I prefer to do about an hour to an hour and half a day of exercise. Also one thing that the pain clinic said to me is in complete opposition to the body reprogramming article, whereas they would say it is absolutely necessary to get your heart rate high to produce the endorphins necessary to benefit from the pain relieving effects of exercise, the reprogramming article says not to get your heart rate high as that is considered another form of stress. I think, however, it is ultimately up to the individual to chose their own priorities, for me I'd rather be as fit as possible and in daily pain than be in less pain but unfit, so I'll probably just keep doing what I have been doing!
Yes, figured as an artist it wouldn’t be your thing, but thought I’d explain for others on the forum. And if you can find another absorbing hobby it might help.
There is so much conflicting advice. I think you’re right, you’ve just got to do what works for you. I find physical activity very beneficial too.
Yes you have to look for for pleasure somewhere, you need some balance if at all possible if guess. Although I have a 3 and 6 year old and they dictate my timetable pretty much!
Hi Cat00, yes I completely agree that the ‘body reprogramming’ thoughts about running as a suitable exercise just doesn’t fit with me. That’s why I feel like the ‘odd-one-out’ regarding fibro. The whole box of symptoms from which I suffer, is as real as other suffers. I guess that as my body is already used to running so it allows me to continue running (in between flare ups) as that is a normal level of exercise for me. Once I’m out and running & thinking of other things, much of the pain temporarily disappears. I don’t think governing one’s time in half hour slots is realistic either but I certainly try to get up & do something different as often as I can, even if it is just to make a cup of tea or stand out in the garden! Variety is the spice of life!
Yes your experience chimes completely with mine, I seem to be very different from other sufferers too. I need to exercise, preferably intensely and preferably everyday. In fact not doing it everyday makes me seize up even more. Every morning my legs are so tight I walk like a cripple, going to the gym fixes it. I don't do pacing either, but I also don't have flares, my pain is constant.
I think a lot of the things discussed in the reprogramming article are true too though, I think adjusting your attitude towards pain is vital. I fought it for years, I kept trying to keep up with everyone else, I never met anyone else like me. I was having chronic migraines it took 10 years to find a doctor that believed me let alone treat me. I had a few nervous breakdowns. I would say my mental health is still vulnerable, but since learning to accept my pain I haven't had a collapse. I just wish the types of conditions I have were known about when I was at school and uni, that would have made life much easier!
I suspect you're right about your body being used to the running either that or the fibro is your bodies way of screaming at you to stop, let's hope not eh?!
Phew! It’s good to hear that someone else is living with fibro whilst doing intense physical exercise. I completely agree that adjusting your attitude towards pain is vital & not to fight it. Sounds bonkers but I even talk nicely to the pain (I’m not mad honestly)!!I’m praying that the fibro is used to me running & not telling me to stop. It’s still early days but I am hoping that managing anxiety as best as I can will allow fibro & running to be friends. Keep enjoying what you like doing what you like doing x
I suspect there are a lot of fibro patients who are exercising but they are not on the forums because they are managing to keep their life going a bit more than those who are crippled by it. I actually joined this forum because I wanted to know if fibro sufferers could grow muscle as I have DOMS everyday and the others (i.e. normal people) in the HIT classes I do don't get it at all. I'd also found the chronic migraine forum wonderful as I have still never met anyone with chronic migraines even though I've had them over 20 years but I know they are out their because of the forum so I don't feel so crazy anymore, and that has made me more confident when talking to doctors etc.
I have just joined the club a few weeks ago, though I am just frustrated, I knew a lot of people were in the same boat but it is different when you actually read what people are putting up with. Can't wait for the office party, though I will probably lie in the corner chewing a live electric cable or sleep through it.
Hi can I ask how you got prescribed Sertraline did they suggest any other drugs how have they helped with the symptoms and on a waiting list for a ‘body reprogramming’course? Is it on the NHS and how do you get reffered? I have never been offered any useful support through the NHS ?
Definitely a challenge every day life so you sound like you are doing well pacing and getting a balance, I can't do a lot of exercise though as it is to much stress on my body and will cause a bad flare but I hope to gradually increase my fitness.
Hi Merlio, I was prescribed Sertraline by my GP. It has definitely taken the edge off the anxiety, which is at the bottom of my fibro. It was also through the GP that I have been referred to the pain management clinic/body reprogramming course. I’m not sure how available it is nationwide but it’s worth enquiring. (I’m still on the waiting list!)Exercise definitely seems to help me as it gets oxygen around the body but you must do whatever is right for you. Only you know your own body and it’s limits.
Hi B0nb00th. Me again! I’ve read the booklet about ‘Body Programming’ twice now. It is very interesting. I agree with almost everything it says - and I would certainly join the programme if it was offered.
But - does anybody remember the thread we had a few weeks ago - when some fibro sufferers shared the trauma going on in their lives now? Plus others remembered the bad circumstances which happened in their childhood prior to developing fibromyalgia? (The subject was initiated by the Ian Wright TV programme about childhood trauma).
It was revelatory - hardly surprising people got sick. And, even now, some are living under dreadful stress with no control over what is happening to them.
So the booklet saying ...’Let go of the past. Dont bear grudges or think about the hurts you have received. Move forward to a better future’ Is excellent advice - but possibly simplistic and unachievable in the real world.
Also trying to convince some sufferers that the world is a ‘safe place’ might take some doing!
Totally agree. Some good ideas in there... but some of it would require a magic wand! The wording/intention needs softening here and there to make it more realistic and relatable (sorry I can’t turn off the Editor in me) 😂
I thought about that thread today as I see Lady Gaga (who as we know has fibro) has just revealed that she was sexually assaulted by a music producer aged 19.
I know we can’t draw any conclusions or direct lines, but it did make me ponder.
Hi, I'm a bit confused. How do you have the energy to run if you have fibro? I was always fit and well and a sprinter. There is no way I can do that now and only since contracting fibro a few years ago. I'm 58 now and it's only fibro that has drained the life from me.
Fibro impacts people differently. There’s a huge spectrum of symptoms and severity. I’m like you, I couldn’t run to save my life. But I manage to swim and that keeps me going x
Hi KnackeredKaty, in answer to your question about running with fibro...it’s a painful struggle! It was the shock of receiving a marathon place (3 months ago) that caused fibro to kick-off big time and for it to be diagnosed. I’m trying so hard to ‘befriend’ fibro & not fight it. I cannot deny that running is painful (& currently getting worse) but I’m determined to get to the start line in October and raise money for fma uk. Distracting myself from the pain and a positive talking to does help a little but it’s a battle. Yesterday I came back from a run in agony & feeling despondent. I even tried a cold bath to shock the muscles!! As a fit 60yr old, it’s so difficult to accept what is happening to me but I guess I have to keep trying all sorts of techniques/remedies to see what works. Not overdoing the physical stress on my body is certainly my biggest challenge right now & I’m just praying that me and fibro can work together on this! Sorry I haven’t been much help but I’m still at the bottom end of a big learning curve and open to trying anything that might help.
Hi all, so glad I wandered into this inspiring conversation. Thanks for sharing all that info B0nb00th. Love the idea of talking kindly to your pain! I’ve nothing helpful to add except be kind to yourself too and pace yourself. And good luck!
Just wondered if you're still active on here and how you're getting on?
I have a half marathon in September and just found out that I have a place in next year's London marathon. Currently recovering from the worst flare-up I've had in years and hoping I can get back to training tomorrow after having had a week off.
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