My advice for managing fibromyalgia (especially for newcomers)

Charz

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Dec 21, 2019
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DX FIBRO
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My sleep has been bad since I got erhlichiosis but now I am doing like you. I fall asleep for a few hours then can't fall back to sleep for 16 hrs and then can't stay awake for 16 hrs. I'm ready to lose it!!!
 

sunkacola

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Charz...I think you posted this in the wrong thread. I created this thread to give my advice on managing fibro, and to answer any questions anyone might have specifically about what I am recommending. Perhaps you could post this in the General Discussion under a new heading.
 

Mariemiguel2

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Mar 19, 2020
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thank you so much for your wonderful advice
 

Kev123

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Thanks so much , a lot of very useful tips x
 

cdrenscu

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Oct 12, 2020
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Hi.
I am 46 years old and I was diagnosed with Fibro a year ago. My pain is from the age of 20 but no one knew what I had.
I also had good times and bad times. The only thing that helped me was sports and optimism.
Since the pandemic, the pain has worsened. I have back, shoulder, arm, elbow pain, my fingers are always stuck, especially in the morning.
Treatment: 300 mg gabaran 1 * 3 / day and duloxetine in the evening 2 cps. I also take a quarter of Trtico for sleep. I can sleep for 8 hours, but I started to wake up at night with pain. For several days I have had an intercostal stab that kills me. I took paracetamol, 60 mg arcoxia and midocalm, but the pain persists.
I do not know what to do.
If I try to move, the pain is greater the next day.
Any advice is welcome.

God help me.
 

sunkacola

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Hello cdrenscu, Did you read the first post in this thread? Please read all the above suggestions I make, as that is generally considered to be very good advice on ways to manage Fibro. This is the advice you are seeking.
 

Beaker

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Thank you, this is a brilliant message :)
 

Strawberry1211

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HI, i am new to this forum i am 16 yrs of age and for the month or so i had experience a stabbing pain in my chest, and when it healed or subsided i am currently experiencing back pains that is accompanied by shoulders,chest pain and jaw pain (occasionally) I'm just scared because i am thinking that i have kidney infection. I am experiencing anxiety everyday because of searching symptoms and all that...
 

NRS

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Oct 20, 2020
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Reason
DX FIBRO
Diagnosis
02/1980
Country
US
State
NY
I have read the post and share everyone's concerns. I have had fibro for over 30 years and have tried many meds and other treatments. Recently I tried ketamine infusions but it did not help. I remain in sever pain, fell like my body is on fire and can not get a night's sleep. Over the last few years on was on low doses of morphine, and despite everyone's concern with opiods, it provided a great deal of relief. Unfortunately, these days, doctors no longer want prescribe it. Anyone know of a doctor in NYC that will do so?
 

LisaB

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Dec 16, 2020
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DX FIBRO
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09/2029
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CA
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ON
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.
Thank you for this post! It has been very helpful!! I am new to this forum. I was diagnosed in September after 3 long years of ruling everything out (MS, rheumatoid arthritis, etc...). The weather here has turned bitterly cold and I went from doing really good to basically bedridden. My pain is especially bad in my ribs, spine from neck to sacrum, And hip joints. My pain used to be very bad in my hands and feet but Elavil is really helping with that and with my sleep.
i am basically here to be part of a community that understands, to find people to talk to (as friends and family who don’t have this, really don’t get it) and to get helpful information on how to handle.
I’ve read some really great stuff and feel I have found that community!!
I guess I am so surprised by how much the cold weather has affected me. I am a massage therapist and I have had to cancel all my appointments these past two days. And this stresses me out because if I don’t work, I don’t get paid!! I hate the unpredictability of this condition as it makes it very hard to schedule appointments for work!!! Anyway, just wanted to say Hi to everyone and thank you Sunkola for all your great posts and info. I wish you all a great day and know that we here understand you!!!
 

Ruffjf

New member
Joined
Feb 26, 2020
Messages
5
Reason
DX FIBRO
Diagnosis
12/2009
Country
US
State
CO
Thank you so much for all of this! It is wonderful of you to share your experiences!
 

Dusty1957

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Dec 26, 2020
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DX CP
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00/0000
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US
State
WI
Thank you so much. I have been suffering with chronic pain for over a year. I have all symptoms of this except for one. I did have a doctor who knew nothing about my suffering. So I did hundreds of hours of research. One of the things I noticed is that since I have PTSD and was dealing with this great, something traumatic happened to me, it started worse than ever. I thought I would never walk again or feel good. It made me determined to do my own research, and I did it. God Bless you, I have found another doctor and will continue to do everything to get better.
 

Dusty1957

Member
Joined
Dec 26, 2020
Messages
17
Reason
DX CP
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00/0000
Country
US
State
WI
Thank you for this post! It has been very helpful!! I am new to this forum. I was diagnosed in September after 3 long years of ruling everything out (MS, rheumatoid arthritis, etc...). The weather here has turned bitterly cold and I went from doing really good to basically bedridden. My pain is especially bad in my ribs, spine from neck to sacrum, And hip joints. My pain used to be very bad in my hands and feet but Elavil is really helping with that and with my sleep.
i am basically here to be part of a community that understands, to find people to talk to (as friends and family who don’t have this, really don’t get it) and to get helpful information on how to handle.
I’ve read some really great stuff and feel I have found that community!!
I guess I am so surprised by how much the cold weather has affected me. I am a massage therapist and I have had to cancel all my appointments these past two days. And this stresses me out because if I don’t work, I don’t get paid!! I hate the unpredictability of this condition as it makes it very hard to schedule appointments for work!!! Anyway, just wanted to say Hi to everyone and thank you Sunkola for all your great posts and info. I wish you all a great day and know that we here understand you!!!
I agree about the cold weather. It did affect me a lot. I was healthy until I moved north from the south.
 

Dusty1957

Member
Joined
Dec 26, 2020
Messages
17
Reason
DX CP
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00/0000
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US
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WI
Cold Weather was my worst enemy when I moved to Wisconsin from the sunshine of Georgia.
 

Anit

New member
Joined
Dec 24, 2020
Messages
1
Reason
DX FIBRO
Diagnosis
10/2019
Country
US
State
CA
Thank you Sunacola! I was diagnosed Oct 2019, after years of going to my doctor and just picking my top 3 issues to ask about. I kept getting told everything was fine - all normal stuff going on. I finally got so bad that I didnt sleep more than a couples hours a night, my job as a Realtor was over - I started my career wearing business clothes and high heels and left wearing sweats and no shoes when ever possible, everything hurt and Id get itchy rashes where ever my clothes we the least bit sung. After getting a new dr and finally being diagnosed I refused to take medicine. My doctor wanted to start me off with 3. It wasnt until March 2020 that I came to the realization that I needed to to try something new and agreed to try 1 med. Sleep was most important i was so desperate to sleep. Fast forward to today...I am ready to take another step forward. For me that is incorporating excersize. I need to get stronger, I need to get my brain stronger. The last year for me has been about baby steps. My intention has been to move forward, slow and steady. I've had plenty of set backs along the way but I second your message. Do one thing at a time and do it slowly. These basics are spot on, at least from my experience. I overdo it quite a bit more than I'd like to admit but it's just a reminder that I need to rest, then tweak my plan and try again.
I too will be printing your original post to remind me of the basics...sometimes I loose track of these and need a reminder. Thank you for posting!
 
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