My advice for managing fibromyalgia (especially for newcomers)

sunkacola

Very helpful member
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Dec 2, 2016
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638
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DX FIBRO
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I am not a doctor or anything, just a person who has lived with fibromyalgia for several years now and has done a lot of research and trial and error experimentation. What follows is just basics. There are a lot of variations. You will find your own versions of everything I say, as this is not a prescription and there are no guarantees. But I believe that if you can do these things, it will improve the quality of your life.

First thing to remember is that Fibro is not a death sentence and if you learn how to manage it, it will very possibly not always be as bad as it is now.

You have to learn to be your own advocate, and your own laboratory and experimenter because there's no one thing that works for everyone. I'm not proselytizing any one thing, just giving a general set of things you can do to take better care of yourself and quite possibly find some relief.

Remember......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.

    Stress is also caused by eating things that put stress on your body to deal with them and by lack of exercise, lack of sleep, and many other things. You have to look at this as a whole picture, your whole mind and body, and work with it rather than just trying to drug away the symptoms.
Very likely, if you are new to this, you are pretty stressed. You are worried, anxious, projecting into a possibly very bleak future. We ALL did that at first, and many of us still fall prey to it sometimes. Don't feel bad for it. But, to the best of your ability, take that energy you are putting into worrying about the future and use it instead to make some positive changes in how you live right now today.


2) Get enough sleep. This means at least 8 hours, 9 if you can, or even more. Take naps if you can and feel like it. Get rest.

3) eat a healthy diet. This is of utmost importance. Eating unhealthy foods puts a lot of stress on the body and makes conditions like fibromyalgia worse.

So, eat a very healthy diet. You can do this no matter whether you have money or not as long as you can get to a market that sells fresh whole foods. 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. It doesn't matter if your best diet is vegan, or meat-eating or whatever, just make it healthy and balanced. Cut way down on (or, better, remove entirely) caffeine and alcohol, as those will definitely make things worse.

Additionally, do some experimenting. Cut out gluten for a month to see if that helps. Try cutting out lactose for a month. Try cutting out various things, but you have to do it completely ( read the labels, no cheating, not even once) and for a whole month or you won't get the information you need. Yes, this takes a lot of time. Do it anyway.

4) Get some gentle exercise every single day. Start small, start very small if you need to, but do it. Even walking twice around your living room. Go around the block if you can. After a week or a month or whatever, go a little farther. Put on music and dance for 30 seconds. Do whatever you like to do. It is important that you choose a form of exercise that appeals to you because if you hate doing it, you won't keep it up. Try yoga, chi-gong, tai-chi, pilates, whatever. There are online free classes in all of these things. Or you can get a video. Do only one yoga pose to start. Do only one little movement to start. But move something every single day.

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.

Find joy in tiny little things if you can. The sunset. The rain. A good book. Someone smiling at you. Anything you can enjoy, do your best to enjoy it to the fullest in that moment even if the next moment you remember your pain and troubles. Any time you get a chance to laugh, laugh as loud and long as you can. There are many times in our lives when laughing is impossible, so grab whatever chances you get to do that!
A dog may not be the thing for you, but my dogs sure help me on a daily basis. Consider getting a pet if you like animals and feel you can look after one properly. A cat doesn't have to be walked. Even a hamster can make you smile every day and give you someone to look after besides focusing on yourself.

Talk to someone if you are depressed, or else write it on a forum and let people you don't know help you. Reach out. Don't think you are in this alone because you are not.

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. If not, try another one, just one at a time. 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 what meds you take and when 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.
Explain it to your friends and family and associates. You don't have to hide this. Just tell them matter-of-factly what is going on, and explain that you may make a plan to do something and then have to cancel because you don't feel up to it when the time comes. Your real friends will want to stick with you and be supportive. Anyone who doesn't believe you or is not supportive, you don't need in your life.

And get support and encouragement from a forum like this one and from others. Don't think of yourself as a victim, and don't think you have to go to battle with this either. You can, while being gentle with yourself, learn to have a good life with Fibro.

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 disciplined in making changes while being gentle with yourself.

I know all these things may seem like more effort than you can possibly put out right now. But remember you can start small with each of these things and build up. I know that all these things take time to learn to implement and discipline to maintain. Do them anyway.

You see, the time will go by in any case, and at the end of that time you may have discovered things that help you. Or, if you do nothing, at the end of that time you will probably still be in the same condition you are in now, so it's worth trying.

I wish you all the best.
 

Eff2013

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Jun 25, 2020
Messages
27
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Undiagnosed
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00/0000
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AU
Hi Sunkacola, I am quite new to this forum. I wanted to read a lot of past posts to familiarise myself with what others had to say about this condition. I want to tell you that I have found you to be very very informative and strong in character. I have read most of your past posts and want to thank you for all the valuable and honest information you give to the community.
You are amazing. Sorry I don't want to embarrass you. The information above is very helpful. I am planning to print it and put it up somewhere in my kitchen so that I can always refer to it.
I am still in the process of being diagnosed. Not knowing what was wrong with me and still not sure has been the scariest thing for me. I have had strange symptoms for many years on and off. No pain back then but severe fatigue that would come on out of the blue, heavy legs, pins and needles, electric current like things floating around my body randomly. In the past all my blood tests would come back clear. I had an MRI as well that ruled out MS. Now, because of a positive ANA result the rheumatologist is doing more blood tests to rule out anything else. Autoimmune disease is very familiar to me, my mum had scleroderma and I saw her suffer a lot. I have always been afraid of having something like that. Fibromyalgia never even crossed my mind until the rheumatologist mentioned it in passing. She said earlier on it might be an ELEMENT of fibromyalgia.
My pain has only really started now with this lock down. For the past month or so I have had deep pains in my arms,wrists,shoulders and fingers. Very scary.
I will be getting my results soon and in the meantime thank you again for all the honest and most appreciated information regarding this not so pleasant condition.🌹
 

DizzyLizzy

New member
Joined
Feb 26, 2020
Messages
4
Reason
DX FIBRO
Diagnosis
06/1995
Country
US
State
MO
Hi everyone. This may or may not be of use, but I've been thinking a lot about some commonalities between Fibro symptoms and
symptoms for PPPD, aka Perpetual Postural Perceptual Dizziness. I have both, and find, not real surprisingly, that they exacerbate each other. Symptoms for PPPD are skewed depth perception, constant recalibration of balance whenever I turn my head or
stoop down, chronic fatigue, ear-ringing, the tingling sensation in muscles all over body, double vision. That's a good start. Does anyone else endure these symptoms? I also have Multiple Chemical Sensitivies, which also exhibits the same kind of symptoms,
excepting that I have to leave wherever I'm being exposed. For instance, indoor pools, or even outdoors, that really load up on the chlorine.

AWK. Our poor bodies. They try so hard to do the right thing.

Thank you for listening, I do hope no one else has these additional blessings!
 

sunkacola

Very helpful member
Joined
Dec 2, 2016
Messages
638
Reason
DX FIBRO
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Country
Uni
State
Somewhere
Hello Eff, Thanks very much for your lovely compliments. I am glad that what I wrote is helpful to you. :)

I also want to say that I think you might be feeling worse because of the Pandemic for a couple of reasons. One being that your activity level may have dropped considerably. I know mine did and I started having a lot more pain. I have worked hard to figure out what to do at home (and indoors, because it is summer here and over 100 degrees every day), in my very small house, to keep my body moving. That is very important. I also think we are all feeling the stress of not knowing for how long the world will be in this precarious state, and many of us have lost jobs or even worse, people we love.
Just hang in there and do the best you can. That's all any of us can do.
 

sunkacola

Very helpful member
Joined
Dec 2, 2016
Messages
638
Reason
DX FIBRO
Diagnosis
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Country
Uni
State
Somewhere
Hi DizzyLiz, I have never heard of PPPD, so thank you for introducing me to the existence of that disorder, which sounds awful.

I can relate to the tingling and pain and fatigue and most people here can as well. I also have double vision, which I have had for about 4 years now. It has gotten a lot worse over those years. It is only partially corrected by my glasses, and the rest of it I have to just live with. Since finding out that there's no surgery or exercise or corrective lenses that will fully correct it, I have put my energy into learning how to ignore it all the time and not be bothered by it. I have just adapted so that I can see accurately by training my mind to interpret what my eyes see.

I always think that when something is wrong, first you do your very best to correct it, and you don't stop trying unless you learn that your efforts are truly futile. And if you learn they are futile, then you learn to live with it and don't let it ruin your life. Easier said than done but I know millions f people do this every day and if I can do it, most other people probably can, too.

You might want to have your eyes tested, Lizzy. A Prism correction in your lenses might fix the double vision problem you have. that is what has made mine a lot better.
 
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