Newbie feeling misunderstood and exhausted

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Mandy76

New member
Joined
Mar 10, 2023
Messages
1
Reason
DX FIBRO
Diagnosis
03/2023
Country
UK
State
NW
I have been suffering for a year now, started off with wide spread pain and fatigue in March 2022, fast forward to 25th August, I was in so much pain I couldn't get out of bed, the fatigue was a like a sink hole that pulled me in, from that day I haven't been able to work.
My once busy life helping others either through work or family/friends was reduced to relying on others to help me, I'm 46 and I just can't comprehend how my life has changed so dramatically.
I have wide spread pain that on some days is at a point talking and moving is a killer, my memory is shocking, I'm convinced I was meant to be Dora from Nemo! The fatigue is on a whole new level and recently I have suffered days of no sleep, but I think this may be down to finding out my dad has Lung Cancer, we are still waiting for the results of the stage.
I have started counselling because my mental health has dipped to the point I think it would be better for my family to be without me, however the thought of my children/grandkids and very supportive partner grieving me stops me.
How do people cope with Fibro, CF, CP? this cold weather in the UK is absolutely no help.
Once I would never leave the house without my face fully made up, my hair on point and Tigger style bounce in my step, now, because I can't really leave the house for social events or any other reason, all those things are long gone, I feel like I have lost a huge part of myself.
 
Hi Mandy, and welcome. Your feelings are pretty common in this community, so you dont have to feel alone anymore.
And kudos to you for taking the step of seeking counseling! hopefully you have found a good counselor that will help you come to grips with all of the "overwhelming" stuff, and help you find ways of coping appropriately.

learning how to cope is one of the things this forum is an excellent resource for. There are many things you can try that do not require a doctor or prescription.. one of the biggest is dietary changes. There are many foods that can aggravate pain, and others that can help calm it, so experimenting with your diet is a great way to start taking control

Our moderator, Sunkacola, has an excellent advice post in the general forums here: My advice for managing fibromyalgia (especially for newcomers)
I suggest you read through it a couple of times, and make yourself a plan of what to try first.

One of the biggest things you can do to help yourself is try to reduce stress as much as you possibly can. Stress is a huge pain trigger for us fibromites.
I understand you being worried about your dad - who wouldnt be? But reducing stress as much as you can will help you, so you can be there to love and show support to him.

Unfortunately there are no quick fixes, but given some time, and a bit of determination, you can regain control of your life again.. it may not be the same as before fibro, but it will be better than where you are right now.
 
Hey there, most of us have been where you are now. I'm 50 and my dad had lung cancer, but guess what? They can now burn it out and the success rate is amazing. He has been cancer free for two years. When he first saw the doctor they said they would give him 5 years and we're now in year 6. So, as silly as this is going to sound, try not to worry. Of course, I know it depends on how fast they find it - dad had the fast-growing one and he is still here. All this will add to your pain and tiredness. Are you on any medication to help? I know many people don't like taking them, but sometimes you need to help your body for a while. Nothing you can't stop when you want to.

Now look, this might last a good few months, but when you learn what your body can and can't do, you can have a life. You're going to grieve for your old life, but fibromyalgia doesn't often go away. But you need to start by achieving little goals. The most important is getting out of bed and moving. Gentle stretches, a walk in the garden. Because sleeping with fatigue won't give you any rest at all. Take naps, yes, but don't spend the day in bed; it will only make you ache more and ruin whatever sleep you do need. This is only my opinion, but it has helped me 18 years ago when I was where you are now.

xx
 
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