Just Joined, Just Diagnosed

N3sriab

New member
Joined
Jul 17, 2020
Messages
1
Reason
DX FIBRO
Diagnosis
07/2020
Country
US
State
MD
Hi,
I just joined the forum, I was diagnosed at the beginning of July after 10 months of seeing doctor after doctor and being told by several that my pain and fatigue were all due to mental illness
I caught mono last October and never got better
I am now very limited in my ability to function on a daily basis, I'm too fatigued and in pain to work, clean, cook, and most days can't even brush my hair or shower, it's really frustrating bc my fiance is working full time and has to take care of the house and pets on top of his job while I lay on the couch too tired to help
Just trying to find support atm
Take care x)
 

sunkacola

Very helpful member
Joined
Dec 2, 2016
Messages
638
Reason
DX FIBRO
Diagnosis
00/0000
Country
Uni
State
Somewhere
HI N3, AND WELCOME, ALTHOUGH OF COURSE SORRY YOU HAVE TO BE HERE.
Oops sorry didn't mean to do all caps.

First thing to remember is that this is not a death sentence and if you learn how to manage it, it will very possibly not always be this bad.
You can learn what works for you and what doesn't, and you can still live a good life, even if it is curtailed. So take heart!

Here are the things that pretty much always help people with fibro, and other related syndromes. I strongly advise you to start implementing all of them as soon as you are able, or at least to start with one and then add more.

1) Stress. Eliminate it as much as you possibly can. This means get toxic people who hurt you or are unsupportive out of your life. It means learning relaxation protocols if there are any that work for you. It means don't permit yourself to worry or stress out over things, and don't read too much news! It also means, less obviously, that you need to be careful what you read, watch on TV or stream, and what influences there are in your life. Best case is cut all screen time down to about 10% of what it probably is now.

2) Get enough sleep. This means at least 8 hours, 9 if you can, or even more.

3) eat a healthy diet. This is of utmost importance. this means cut drastically down on sugar, first. Read labels--sugar is hidden in almost everything you buy in a jar or box or can, and in all processed foods. Eat absolutely as little sugar as you can. Sugar is almost like poison for people like us. Eat fresh food (doesn't need to be organic) and a balanced diet. Cut way down on (or, better, remove entirely) caffeine and alcohol, as those will definitely make things worse.

4) Get some gentle exercise every single day. Start small, start very small if you need to, but do it. You have to keep your body moving, and doing even a small amount will make you feel better and will give you a sense of accomplishment. Having a sense of accomplishment for even small things is one thing I found has helped me the most. I always felt worst by far on the days I didn't accomplish anything at all, and learned that even a small thing is good if that is all I can manage that day.

5) Do your best to maintain a positive attitude (see above: try not to worry or stress) and tell yourself you can do this, you can have a good life and learn to manage this. there's no magic pill, but you can learn to manage your life around this.

6) become your own laboratory and researcher. Don't take narcotic medicine, as that is a road you don't want to go down. Don't take a whole lot of meds at once. Try one, see if it helps. Try cutting out gluten for a month. Try cutting out lactose for a month, and so on. Try medical cannabis if you can get it. But give everything at least a month...a week won't tell you anything. Keep a journal of what you eat and how you feel the next couple of days. Research all of this as much as you can.

7) Balance your life as much as you can. Find what nourishes your soul. Be kind to yourself and surround yourself only with people who will be kind to you. Rest when you need to. Accept that you can't right now do everything you used to, but know that it may not always be this bad and you can take steps to help yourself. Do small amounts of things, then rest. If you can even do 1/2 the dishes and then you have to go rest, for example, it will at least give you that sense of accomplishment, and this is important.

And come here for support and encouragement. I have been to the bottom with Fibromyalgia, and have slowly brought myself back to life so I know it can be done. It's really hard. But you can do it. Be courageous and very gentle with yourself.
 
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