i need helpp

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i need helpp

Postby petertohen » Sat Jan 27, 2018 1:56 am

Hi everyone. I've been newly diagnosed with fibromyalgia and chronic fatigue syndrome after 4 long years of suffering! I'm only 26 and it is so hard to take it in.

My symptoms are: fatigue, muscle aches and pains, joint pains, chest pains, itchy eyes and many more.
Having massive flare ups at the moment, spent the day shopping with my mum for my birthday and I can't move a muscle today without crying in pain. Trying to do college work and attend college is just so hard to keep up.e

I was just wondering if any of you had any advice or tips to help get me through each day!
https://www.everydayhealth.com/fibromya ... drome.aspx
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Re: i need helpp

Postby LindyM66 » Sat Jan 27, 2018 8:58 am

Hi P

FM is a shock to the system, for sure. I was diagnosed 2 years ago, after experiencing a massive flare ( didn't know that's what is was).
It's taken til now, to get a combination of meds to allow me to function. I was off work for 6 months last year - I work in a college :-)
My advice would be to learn how to pace yourself. Over time, you will learn what you can do, and what you have to do differently, or those things that are just a "no, no". Unfortunately, it takes time to figure all these things out.
Heat works well for me. I use an electric heat pad, hot water bottle - and there's also those adhesive heat pads, which work a treat. Epsom salts baths (which I thought was an old wifes tale) are fantastic. A good 4 cups in the bath, and soak for at least half an hour. CBD oil also helps reduce pain. I have a massage pillow and a massage chair ( not a big fancy massage chair, one of those ones that you fit over an ordinary chair). It's trial and error, to find what helps you. What helps me, may not suit you, and vice versa.
You didn't mention if you are taking any medication?
The fatigue is a hard one to combat. I used to be too tired to chew my dinner! Rest when you can, and don't over do it - especially on the days where you feel "good" ( or better), as you will end up as you are now, after shopping with your mum.
It will take time, but you'll learn how to manage your symptoms, as best you can. Don't be afraid to say NO. Self caring is so very important. Ask family and friends to educate themselves about FM, so they are aware what you are learning to cope with. Despite knowledge, some people just "dont get it".
Lots of good info on other posts, that may help you.

Take good care
Much Love
Lindy x
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Re: i need helpp

Postby Knackered » Fri Jun 22, 2018 11:20 pm


My advice would be to start to recognise how you react to things that get you wound up, this seems difficult at first :roll: ,,, but once you start to recognise lifes stressors you can start to change how you react to them. Just by saying to yourself,,, I am not going to react (instantly) as I am hurting myself when I do,, It is amazing how you start to change your reactions to the things and circumstances around you.
If you drive,,, be carefull not to get angry at other drivers. I know they are stupid, just watch them,, and slow your driving down and if they blow the horn at you it dosen't matter,, they are stressed out,, slowing your driving down, may seem like a stupid thing on just reading it,, but it is about you not getting stressed.
Just by observing your reactions and holding yourself back from that instant reaction becomes a second nature,, after a while you realise that your reactions are all about habits that you have created over a lifetime, nothing else.
Give yourself time to do things,, never rush.

Try to go to bed at a regular time.
No TV or computer for an hour or so at least before bed as the LED light stops the production of melatonin that gets you to sleep. If your are studying in the evening use an incandessant bulb not an LED or a CFL. If you want to know more about this google something like "blue light sleep" all LED light has a high proportion of blue even the warm white 2700K lamps.
Try to keep light from flooding into your bedroom,, the darker you can keep it the better while your sleeping.
Don't go to bed with food in your stomach,, I don't eat after 6pm,, you are making your body work digesting food all night and that is causing system stress.
Make sure you are geting enough fluids preferably water,,, without flouride.
If you drink lemonade it would be safer to avoid anything with artificial sweeteners,,, if it says NO ADDED SUGAR they are in there,,, I am not saying sugar is good but it is at least not a neurotoxin .
Those are all good starters,,, there are other things that you can change but one step at a time,,, it's about changing habbits one at a time so they become life changes.

Best Wishes, Ray
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Re: i need helpp

Postby perseus » Sat Jun 23, 2018 12:51 pm

Incidentally, there's there's a night light display on Windows 10, which converts the background to a reddish glow. The downside is that the contrast is less, making it marginally harder to see.

Go to the Windows icon bottom left > Settings > System > Display > Brightness & Colour > Night Light on (you can then set it to come on at a particular time)

I'm sure it's better not to use the computer at all before going to bed as you say, but thought it was worth a mention.
As a Public Moderator of this forum my opinions/views expressed are personal and are no more valid than those of other members and not necessarily those of UKFibromyalgia. Regards Stephen
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Re: i need helpp

Postby Knackered » Sat Jun 23, 2018 8:25 pm


As you said
"I'm sure it's better not to use the computer at all before going to bed as you say, but thought it was worth a mention."

I don't know how they can adequately filter out all the blue light frequencies from LED,, I am suspicious of turning the blue light down but I do think it is probably better a better measure to take than nothing at all.
On a whole seperate issue not related to the production of melatonin or sleep LED lighting has no near infared frequency of light in it's spectrum,, it is auctualy not producing near infared and infared rays that makes LEDs so effecient and ecconomical to run.
Near Infared is however necessary for the retina to repair and keep working well, the cells will degrade without this repair ,,, this is the main problem with LED lighting and a problem many down the road that are not aware.
I would not advise against using LED lighting ,, I have a house full of LED lighting,,, but I am careful to have one small incandessent light where I spend time,, this could be provided by a an old fashoned bulb in a lamp.
The light from a candle burning,, or simply the light from an open fire or stove it will provide ample near infared.
[This paper addresses the problem in relation to aging https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5364001/
unless the problems of LED lighting is addressed I predict an epidemic of sight problems in young people not so far down the road.

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