After moving to North Wales, fresh air and self motivation, determination and sheer bloody mindedness finds me at able to do 3 miles now. The pain is horrific, especially in the feet as it feels like I'm walking on nails.
Yet, the exercise gives me a clearer mind with little fog, with the added fact no sugar or grain foods in my diet. Still suffer from severe abdominal pains and blockages though!
I can't take meds, because they actually have substances in them that cause abdominal pain.
Any suggestions for pain improvement. My pain is always between 3/10 to 8/10. Tonight it's a 7.
Good morning, without stating the obvious maybe cutting back a little on your 3 mile walk and pushing yourself to your limits may be a good place to start. This is not giving in or giving up. This IMO is listening to your body and staying within your energy /pain envelope. I hope you have a good day.
As dizzy says, pacing is important with fibro and doing less can often allow you to achieve more. Conversely, doing too much can make you take steps back.
Not to pour water on your suggestion but personally I’ve found doing less causes less to be done over time and eventually you do nothing. That means what you imply doesn’t work in practice. I’ve spent my whole life figuring that out! You must not stay within what you feel you can do, you have to do 110% 10% more than you can do to stay at same level of health. It’s demoralising I know. But it’s true.
Well, with that attitude, you're beyond help. It may also suggest that you've actually been misdiagnosed.
desquinnPartnerVolunteerFMAUK Trustee• in reply to
Well as you have previously looked at research ad info then you will know that you are not the norm as pacing is recommended as a coping method. Its supported by evidence.
Doing too much sets people back like blowing a fuse. People are different but simple graded exercise that you build up over time while listening to your body and not overdoing it.
I would also have to say that as you constantly rebel against what is the accepted wisdom and say what you are doing is true or fact that it would be worth going back to the GP and seeing if there is any other diagnosis worth looking into as opposed to fibro or in addition to.
Having spoken to many many people that have employed pacing and medical professionals that recommend it, it is common practice that works. Also there are countless records of people overdoing it and then ending up in bed for days afterwards.
Yes I’ve been in bed for up to 3 days afterwards but it was always worth it! The bonus of feeling better for up to a month is well worth 3days in bed! There’s a logic to my madness!
300yds 2 years ago changed into climbing Snowdon Christmas Day 2019. On my own.
I have to say that I am likely to be the Ranulph Fiennes of the Fibro family. I am a big adventurer at heart! I am willing to take a risk of death for a benefit in life. And you lot are dissing me for taking those chances! Who are you really?
desquinnPartnerVolunteerFMAUK Trustee• in reply to
Hidden if you were not professing this as the way to deal with things rather than just your way then it would probably not be worth mentioning. But you continue to rail against the evidence and the best practices approach. I appreciate that you have something that works for you but it may and most likely is not the right course of action for most people.
"And you lot are dissing me for taking those chances! Who are you really?"
Not sure what you mean as I have already explained who I am and why I have been replying to some of your posts. I am not "dissing" you but I am taking issue with your approach and your advice as I think it is counterproductive for most and dangerous for people with CFS.
Well done for climbing Mount Snowdon, but i have noticed from your previous post that you was complaining about PIP and how unfair it was?, correct me if im wrong but if you told PIP you climb mountains and that you walk 3 miles at a time, that might be a indication why they struggled to award you the rate you was hoping for? and i tell you if i was still able to climb a mountain or walk 3 miles ( and yes i have in fact climbed Snowdon myself years ago) i dont feel i would want to claim PIP? just a thought!
That’s why I fought back and the rest hasn’t! They’re just accepting their condition when I’m a fighter to the end! That was then this is now. My answer to you all... fight back or die anyway!
Those who don’t are failures in life! Your supposed to fight it not accept it!
Mr Bee - i have Fibro amongst many other painful debilitating conditions, i have 2 disabled children to care for, i swim for 1 hour every day as its the only exercise my body can cope with and i dont for a second think you can assume that anyone on here is accepting their condition and not fighting it, for some myself included, some days its a fight to get out of bed and actually manage another day, to stay sane when all you want to do is remember something small that for the life of you seems to have escaped your brain, to have just one pain free day, and feel how i used to feel, but does that make us Failures in life? No i dont believe it does, if we were failures non of us would be here right now reading your posts on how were all failures as we dont fight? We fight daily, and we will continue to fight daily - But my point that if you can climb a mountain and walk for 3 miles then i think less complaining on how hard done by you are with PIP, less assuming were all failures as were not all ready in hiking gear to join you on your jaunts and a bit of respect that not all of us are the same as the PIP descriptors will tell you - we all suffer differently and i doubt many of us want to spend 3 days in bed in pain due to trotting up Snowdon!!!
I bid you good luck on your next Hike, just dont go too public with all the things you can manage or we will be reading another post on how NOT to apply for PIP!
I guess we need to agree to disagree on this one. You are entitled to your own opinion. The same way every member on this forum does. I found over my 35 years of dealing with Fibro the push and burn did nothing but make the pain and tiredness worse. I hope you enjoy the rest of your day.
I find your attitude disrespectful and down right rude.
So, you climb mountains good for you, so you go against professional advice, that's your choice.
It would appear you are the lucky one who conquered a mountain and through your personal research have a personal cure for your fibro. I am very pleased for you, but I chose not to follow your advice.
Please do not imply people on this site don't know or underatand their personal systems and capabilities of fibro.
Last times ive pushed it ended up pretty bad Sleep gets totally messed up and Quack said can't see it as sea air is good then saw iinside my ears and squeaked hmm perhaps not! Ears got sores in them plus nose/eyes/mouth and breathing.
Interesting, 15 cups is way more than I could ever drink though! I had perioral dermatitis on and off and fluoride was one of the things that people tried to cut out to cure it. I think largely bc the dermatitis was around the mouth and they theorized so was toothpaste however for me what helped was B5 supplements and I haven't had it since. But as with all things that come and go its difficult to attribute a cure as of it may have just gone on its own. I might check to see if flouride is big enough to be taken out through my drinking water filter (we have very hard water here...) thanks for the info!
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fibro/tumour?
It's official - I am a twerp!
children say the most funniest of things!!!!
Hair loss
I just don't know what to say anymore....
