New here,but long time with fibromyalgia

[Panda7353]

Hi,I was diagnosed back in 1995. I managed really well until years of stress finally put me in what feels like a permanent flare. Hoping for some ideas to help me alleviate and cope with the pain. Glad I found you!

 

[Jemima]

Welcome here, Panda! I'm so sorry to hear of what you've been going through. This place is an Aladdin's cave of ideas for managing fibro, so I really hope you find the things that help you get back to that steady baseline. We're all here to chat, answer questions, or commiserate if you want to vent. Your ideas for others are very welcome, too - I'm sure you're a pool of wisdom after so long with this thing. Wishing you wellness asap!

 

[sunkacola]

Hi Panda, and welcome to the forum. As Jemima says, this is a good place to get support and advice and tips on managing fibromyalgia. You also get to vent here if you want to

Here is my first recommendation. Read the advice post and start right away to do whatever you find that you feel you can currently do. There is a lot there, but remember you don't have to do everything at once, and finding what combination of things works for you to help manage it and relieve some of the pain is a process that can take a long time, so it requires patience and, most of all, persistence. For me, it was 2 years of experimentation, but I did not start out with a list of recommendations, so I am always hoping my post will at least shave off a bit of that time by giving you ideas of where to start.

Take heart, and know that things will most likely not always be as bad as they are now. If you have questions, please feel free to ask.

My advice for managing fibromyalgia (especially for newcomers)

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...

www.fibromyalgiaforums.org

 

[Panda7353]

Thank you so much! I was unable to read the advice about managing. I have an ED which I struggle with so have to stay away from anything that suggests avoiding food. I will be sure to add that to any post I make so I can read them all!

 

[sunkacola]

Thank you so much! I was unable to read the advice about managing. I have an ED which I struggle with so have to stay away from anything that suggests avoiding food. I will be sure to add that to any post I make so I can read them all!

Hi Panda,

My suggestions do not recommend avoiding food!
In fact, quite the opposite.

I have, as one of my suggestions, avoiding coffee, sugar, and alcohol, but none of those are actually food. I also say that a person could try a different kind of diet, since that has helped some people. Or not. There are so many other things you can do.

I recommend that you go ahead and read my post, just skip the part about food and read the rest of it. That post contains a great deal of info and ideas about many things and many suggestion that you can try.

You do not have to change your diet if you don't want to, and just try one or more of the other suggestions which have nothing to do with food.

Eating a healthy diet is important, but you can go about that in any way you want to.
Please read the post.

As for not reading anything at all anywhere in this forum that even mentions food, that may not be possible because people here do talk about what they eat occasionally.

 

[Jemima]

Thank you so much! I was unable to read the advice about managing. I have an ED which I struggle with so have to stay away from anything that suggests avoiding food. I will be sure to add that to any post I make so I can read them all!

Hi Panda,

Good for you, creating healthy boundaries for yourself. I'm not sure what your ED is - and you absolutely don't have to share anything that you don't want to - but I'm recovered anorexic, so might understand some of how these issues might be overlapping for you. Of course, we're all on different journeys, but if you ever find that you want to talk about that side of things, I'm always here! Sending you epic warmth and strength

 

[Jemima]

Hi Panda,

Perhaps this will make things easier!

Here's Sunkacola's advice post with the food-related segments and mentions taken out:

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 anything that puts stress on your body, such as 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.

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 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. 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. It will 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.

[Edit January 2021] I am editing this post because it has occurred to me that I did not mention anything about what you put onto your body or use in your home. These things are also important. Most people in the modern industrialized world use far too many chemical products in their homes and on their bodies, and not only does this poison the environment but it can also lead to many health problems as well as exacerbating existing ones.

Everyone is different, and no one can tell you what chemicals or products to use or not use. I have recently removed from my home chemical cleaning products, and use almost no products of any kind on my skin and none on my hair. My first reason for doing this was environmental - not only are the chemicals environmentally harmful but also most come in plastic which ends up in the ocean - but also because the new information we have on the human microbiome strongly indicates that less product use is far better for us. I would like to recommend that everyone examine their use of personal and household products, even those labelled "natural" and consider cutting down drastically on their use. Most aren't necessary at all and there are genuinely natural and non-harmful substitutes for all of them.
[End of edit]

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.

 

[sunkacola]

Thank you for doing that, Jemima!
I didn't even think of doing that, which I wish I had, because that solves the whole problem. ♥

 

[Jemima]

Any time!