Just been diagnosed...advice appreciated

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Just been diagnosed...advice appreciated

Postby Debbie584 » Tue Nov 07, 2017 11:45 am

Hi, have just been diagnosed with ME and fibromyalgia by Royal Liverpool hospital after struggling for last two years. The consultant was really nice and explained alot, have to go to regular clinics and a chronic pain clinic. Obviously all new and although glad now I finally have answers and I am not going mad just wondered how i can help myself. I suffer extensive pain daily, take tramadol, paracetamol and amitriptyline. Warm baths seems to help when particularly bad. Pain has got so bad recently even thought of taking my life as I just couldn't cope. Hoping my diagnoses well get me the help/relief i need. Would appreciate and tips or advice. Thank you
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Re: Just been diagnosed...advice appreciated

Postby FluppyPuffy » Thu Nov 09, 2017 12:49 pm

:welcome: to our little escape from it all Debbie xx

Like you, I have been dx'd with both FM and ME/CFS. The past few months have been pretty horrendous for me, so I understand a little of how it can make you feel when it gets you down into that dark place xx

What you're already doing often forms the basis of self help, so you have started taking some good steps in the right direction xx

Wrt the thoughts you have had when your pain levels rocketed, if you find yourself experiencing something along these lines again, please please seek help as these unhelpful thoughts can take hold quickly. The quicker help can be sought and put into place/practice, the better it can be for you as you're tackling them before they can take root fully xx

There are all sorts of things to try out that might be of some help. Having a looky thru some of the stuff on here could give you some ideas to try out/adapt xx If a specific issue is being particularly troublesome, you could try using the search box to see what may have been suggested to help others with it xx

One thing that pretty much all of us do is learn how to listen to what our body is saying to us, and how to work within the tolerances it now has. This has been the biggest challenge for me, my learning is ongoing, but even after 17 years I still have moments where I think I can do something like I used to do. Fortunately, these times are becoming less frequent, which is a big plus xx
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Re: Just been diagnosed...advice appreciated

Postby Debbie584 » Thu Nov 09, 2017 8:20 pm

Thank you for your reply. Read through quite a few posts on here, was really helpful and mentally to that I not on my own, if that makes sense. Just seems like an awful lot to take in, consultant was really caring but did say that unfortunately there isn't a cure or a magic pill, but was a case a management. It just seems all a minefield, it's hard to express the pain sometimes to partner/family etc as I don't want to be moaning. So trying to deal and rationalize it all in my head. Have defo noticed that I have a streak of stubbornness and try to still do things...then pay the price!!! So guess like u say I need to listen to myself a bit more. Sometimes the pain is so unbearable and not really sure what to do with myself.
Thank you again for your reply.
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Re: Just been diagnosed...advice appreciated

Postby LindyM66 » Fri Nov 10, 2017 11:10 am

Hi Debbie

It really is a minefield! What works for one, might not work for another. Trial and errorn which can be really frustrating.
I find that heat, is my best friend. Hot epsom salts baths, heat pads, hot water bottles.
I take tramadol 400mgs per day, and 1800mgs of gabapentin daily, along with a brufen and paracetamol at times.
The best thing for managing my symptoms truly is identifying what I can do, how long I can do it for, what way I can do it, and what are complete " don't be stupid, you'll gub yourself" things. I think when you come to learn these things, we learn to self care - which is extremely important. You know your body better than anyone else-so listen to it. Fibro is one of these conditions where " pushing through the pain" ( I could poke someones eyes out when they say this) doesn't work. It just makes you worse and you can suffer for days afterwards.

Take good care of you :-)

Much Love
Lindy x
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