What does your fibro feel like?

[FibroWhatsTHAT]

I don't know how to explain fibromyalgia, and I was wondering what others with fibromyalgia feel. I was hoping some here might share what their pain feels like so maybe I can understand and explain my pain better. If you care to share your methods of dealing with this that would be helpful as well. I've gone through the threads and haven't seen this particular question; I apologize if this topic has been covered and also realize it's also close to another thread I've started (I'm new) but I think it's an entirely different question. I'll start:

I feel like I am being electrocuted by low voltage, sometimes deeper in my body and sometimes closer to the surface of my skin. I feel this mostly in my arms and legs as well as my back and sometimes my scalp. I am also achy all over my body reminiscent of having the flu. It obviously varies day to day, hour to hour, and sometimes is so bad that I have to grunt to endure it. I am fatigued often and have a difficult time with sleep. I am on pregabalin and sometimes take up to 600 mg a day, sometimes less. CBD helps but I can't take that due to my job. Cymbalta made me feel way to "out of it" and I couldn't wait for it to leave my body. I feel my fibro is getting worse and I am getting desperate for some sort of relief.

So what does your fibro feel like?

 

[sunkacola]

Everyone is different, so if you wanted you could probably get 100 different descriptions from people. I am not sure how that would help you, but if you want people to describe their pain to you I am sure there are some who will be happy to do that for you.

Fibro doesn't really progress or get worse, but there are things that will make your experience worse and that will damage your overall health which of course will make you feel worse. One is if you do not keep moving your body. It's easy to feel like not moving much and not get exercise because you are in pain, and it hurts to move or hurts afterwards. But if you do not keep moving your body for at least some of the day every day and get a reasonable amount of exercise it is a guarantee that things will get worse, because not moving is extremely unhealthy. You could take a very healthy person and make them have a sedentary lifestyle and they would become unhealthy, so imagine what that would do to someone with fibro.

Also, you can experiment and identify the things that trigger your pain, and that make it worse. These could be environmental or food or people or certain kinds of experiences or stress. Once you have identified them you can do your best to avoid them.

I wrote a post with many suggestions for this important experimentation, and recommend you check it out. Many people have found some relief by doing their own experimentation with different things, and there's every chance that you can too.

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

 

[JayCS]

I feel like...
I don't know how to explain fibromyalgia...
So what does your fibro feel like?

Excellent how you're already managing to try the impossible!
The thread (click here) I already linked to on that other thread does go into this question too, on how to describe it exactly, because it does contribute a little bit to help people understand what we are going thru.
But for others we have to refer to things they know, like you do here: the flu.
Because many of the things we experience with fibro are unlike anything we had or they had before.
I've been writing one detailed entry every day for 3.5 years now on my "fibro blog" and there are so many symptoms, changing all the time, and with new triggers / treatments we may get many more or they change.
Same way I change the way I "feel", think of or describe when I try to put it in a nutshell, or coconutshell.

In time we learn how people "react best", like if I say I've been in some kind of pain all the time all of my life (now I've been told that others aren't...). And then I say: the pain isn't the biggest problem, actually... Or that since fibro I'm glad when I'm only up 4x a night and am no longer up for hours every night. People often see that I'm stiff after staying in a posture longer than 10 minutes, and I say: oh, that's normal (now).
Or that I can only eat 50 foods, otherwise I get severe problems for a day or two for just specks of a wrong food - that gets (to) most people. But my quick exhaustibility is the "funniest" one: My energy can be there fully for 3 minutes (now only on the best of days), and then fizzles out and if I try to push thru that can cause me hours to months of problems. Other things belong more to my other conditions that have increased in the last 2 years, like not able to talk or listen to music or "travel" for longer than 10 minutes without getting nauseous, ill, feverish, going white in the face.

I feel my fibro is getting worse and I am getting desperate for some sort of relief.

Sounds like it's a good time for you to reach out and starting filling up your toolbox. There are 100s of small things we can try, and I use >100 every day. But starting to detail your symptoms can help analyze them and their triggers and then prevent the triggers and find other things for each single symptom to alleviate them.

 

[FibroWhatsTHAT]

Excellent how you're already managing to try the impossible!
The thread (click here) I already linked to on that other thread does go into this question too, on how to describe it exactly, because it does contribute a little bit to help people understand what we are going thru.
But for others we have to refer to things they know, like you do here: the flu.
Because many of the things we experience with fibro are unlike anything we had or they had before.
I've been writing one detailed entry every day for 3.5 years now on my "fibro blog" and there are so many symptoms, changing all the time, and with new triggers / treatments we may get many more or they change.
Same way I change the way I "feel", think of or describe when I try to put it in a nutshell, or coconutshell.

In time we learn how people "react best", like if I say I've been in some kind of pain all the time all of my life (now I've been told that others aren't...). And then I say: the pain isn't the biggest problem, actually... Or that since fibro I'm glad when I'm only up 4x a night and am no longer up for hours every night. People often see that I'm stiff after staying in a posture longer than 10 minutes, and I say: oh, that's normal (now).
Or that I can only eat 50 foods, otherwise I get severe problems for a day or two for just specks of a wrong food - that gets (to) most people. But my quick exhaustibility is the "funniest" one: My energy can be there fully for 3 minutes (now only on the best of days), and then fizzles out and if I try to push thru that can cause me hours to months of problems. Other things belong more to my other conditions that have increased in the last 2 years, like not able to talk or listen to music or "travel" for longer than 10 minutes without getting nauseous, ill, feverish, going white in the face.

Sounds like it's a good time for you to reach out and starting filling up your toolbox. There are 100s of small things we can try, and I use >100 every day. But starting to detail your symptoms can help analyze them and their triggers and then prevent the triggers and find other things for each single symptom to alleviate them.

Your post was very enlightening. I have read a few of the threads in your hyperlink and was surprised at the degree to which others are suffering; I am still pretty functional in comparison. I feel like a lightweight complaining about my fibro when others can't even walk. It's hard to get motivated to accomplish things but others who have it worse than me are overcoming their fibro and at this point I don't know what else to do except just carry on. My young children get me sick all the time in the winter and that just wipes me out. I'm sick now! You mentioned a "toolbox".. How does one assemble one of those? I have more supplements than I can count...

 

[FibroWhatsTHAT]

Most importantly the threads your hyperlink directed me to illustrated the degree to which family members are just denying the fact that fibromyalgia is a thing, or that the diagnosis is correct, or are just not accepting it and thinking that it will get better somehow. I tried to explain to my wife that the Tesla she bought (me) now only has 2/3 of the battery life it once had and there is not way to fix it, so she has to plan accordingly. Hopefully it sinks it. She did say that she just didn't want to accept it and was basically trying to pretend it wasn't real - in a sense. I told her that is is very real and had her read some of the threads you shared through that hyperlink. Thank you again

 

[sunkacola]

Your post was very enlightening. I have read a few of the threads in your hyperlink and was surprised at the degree to which others are suffering; I am still pretty functional in comparison. I feel like a lightweight complaining about my fibro when others can't even walk. It's hard to get motivated to accomplish things but others who have it worse than me are overcoming their fibro and at this point I don't know what else to do except just carry on. My young children get me sick all the time in the winter and that just wipes me out. I'm sick now! You mentioned a "toolbox".. How does one assemble one of those? I have more supplements than I can count...

No need to feel like a lightweight, or to think that what you experience and suffer is less important because others have it worse. We can always find people in the world who are better off than we are and worse.

"Are you struggling to pay the bills? Well, there are millions of people living in refugee camps, so don't complain." .......that kind of thing.
Of course we can, and should, be grateful for what we have, and that's a good idea, and it's important to remember what things are truly "first world problems" and not get hung up on those. I am incredibly grateful every single day for the advantages I have, but that doesn't mean I have to diminish the struggles I have or think that my pain and fatigue is less important because others' is worse.

Yes, all that any of us can do is carry on, but add to that everything you are able to manage that can make your life easier.

The "toolbox" is assembled through your own experimentation. Since everyone is different, you have to find the "tools" that work best for you and the only way to do that is to try everything until you find what helps. Some people swear b y 10 minutes of meditation every morning, others do a relaxation every evening. Food choices can make a difference. The kind, duration, and frequency of exercise is very important, and it's important to be flexible with that and vary it according to what your body wants today.

And about what your body wants..........learning to ask your body, to listen to what it is telling you, will go a long way towards figuring out what will help you.

If you have not already done so, I recommend you check out my post that gives suggestions for how to do this process. If you are diligent and willing to take the time and a little effort, you will find your tools.

 

[sunkacola]

Most importantly the threads your hyperlink directed me to illustrated the degree to which family members are just denying the fact that fibromyalgia is a thing, or that the diagnosis is correct, or are just not accepting it and thinking that it will get better somehow. I tried to explain to my wife that the Tesla she bought (me) now only has 2/3 of the battery life it once had and there is not way to fix it, so she has to plan accordingly. Hopefully it sinks it. She did say that she just didn't want to accept it and was basically trying to pretend it wasn't real - in a sense. I told her that is is very real and had her read some of the threads you shared through that hyperlink. Thank you again

One thing that can help is to realize that sometimes people are refusing to believe that fibromyalgia exists out of fear. They do not realize this, but often that denial comes because the person is unwilling to believe that such a thing can just happen to a person. If they accept that, it means it could happen to them, and they don't want to face that. It's similar to how people will remove themselves from the life of someone who is experiencing terrible bad fortune or grief. It's not always because they don't care, but because they have no idea how to help and there is in human beings a deep seated fear that being around someone who is having a bad time might rub off somehow. Sometimes a person's own life feels precarious enough to them that they think they cannot allow anything negative, even if it is happening to another person, to come into it.

Additionally, it is inconvenient for them to have to deal with your struggles, and so they want them to go away and denial is one way of trying to make that happen. None of this is produced by the conscious mind, and the conscious mind will come up with lots of "reasons" or justifications for not believing you.

I'm not saying that's the case with the people you know......but it might be. It's pretty common.

Thinking that it will get better somehow is not necessarily a bad thing. Fibro is not curable according to what is currently known, but there are things we can do to lessen the impact on our lives, and to bring some measure of relief. Maybe you can find a way for your wife to support you in your experimentation in that.

 

[FibroWhatsTHAT]

Sometimes a person's own life feels precarious enough to them that they think they cannot allow anything negative, even if it is happening to another person, to come into it.

Additionally, it is inconvenient for them to have to deal with your struggles, and so they want them to go away and denial is one way of trying to make that happen. None of this is produced by the conscious mind, and the conscious mind will come up with lots of "reasons" or justifications for not believing you.

I'm not saying that's the case with the people you know......but it might be. It's pretty common.

You really nailed it there. I'm trying to help my wife see the fragility in herself in the defensive posture she takes toward nearly everything in life and to see that a change toward the positive would really help her enjoy her life and let her soul breath a whole lot more than it does with the way she has her coping mechanisms currently arranged.

I do have to give my wife the massive amount of credit that she is due for the way she runs our household. I would be totally sunk without her. She's been visiting her father over the last 24 hours and I can barely keep up with the kids needs and getting them to school, and who needs what when.... Her ability to work hard through anything - illness, being tired - she doesn't stop until she has not choice. Covid is the only thing I have ever seen take her out besides the occasional hangover. My disease would be nearly impossible to cope with and be a productive person if she were not in my life..

 

[sunkacola]

she doesn't stop until she has not choice.

This is very telling.
A person who is accustomed to approaching life in this way, -- maybe who is simply wired to approach life this way, or who has been taught as a child that this is the way to do it -- is not going to find it easy at all to believe that another person cannot do what they do.

This is the bottom line of why she is not accepting your current physical reality. She is thinking that if it were her, she'd just bully through it, so why don't you.

Not her fault; as I say she is either genetically programmed to be the way she is, or was indoctrinated in that way, or both, and is just not able to believe that it is not always true that "if I can do it you can do it". That's a nice phrase people say, and it can be a great encouragement. But it can also fail to recognize that a person without legs cannot run so it's not always true.

Possibly she cannot change this any more than you can change what is your reality.

I think maybe the best thing for you would be to figure out how you are going to do your life with fibro in a way that allows you to have peace and do what you need to do whether she believes you or not.

We cannot ever control anything outside of ourselves, let alone other people and how they are.
We cannot always control things within ourselves either. But the only thing we have any possibility of controlling at any time is how we react to something. If her disbelief is making your life more difficult, your best path is to find a way not to allow it to affect you in a negative way any longer. This you need to do for yourself, but if you think of her with compassion, remember she cannot help how she sees things and it's not really about you at all, and learn not to react negatively to her disbelief it may end up being good for her as well.

 

[JayCS]

You mentioned a "toolbox".. How does one assemble one of those?

If you're up to reading more of my intricacies, you might like to go thru my thread on that ➔ here.

In "short", my way was

• to look up every single symptom (splitting them up into contributing symptoms) again and again, searching for possible triggers and treatments,
• to compile systematically a list of all the many 100s of treatments,
• to prioritise and work thru them, 'proving them all and keeping the best', meaning anything that works even a little bit without harming (which can change: treatments are deliberate triggers),
• ending up to find that webinars generally and youtube specifically are my most potent resources, as well as the forums.

An important part of the toolbox however is not to get the tools to somehow force the Tesla back up to speed and range, no matter what, but to learn to pace well. I'm always much more productive if I go slow than if I go fast for a short time, even if I don't seem to be overdoing it. Many days I can do something the whole day in moderate to slow speed, need much less breaks. Also regular task-switching as a form of eternal taking breaks. I don't actually need breaks, what I call a break is when I go online, for work, health or play, plus it's my Mars bar for the activity before.

She did say that she just didn't want to accept it and was basically trying to pretend it wasn't real - in a sense.

Great advice above.
Possible root causes for attitudes and behaviour are good to know.... Fear/denial, like all other stages of grief (see link above) and inconvenience / Zweckoptimismus ("calculated optimism").
But not necessarily to confront someone else with - better to slip in gently (like: do you think I'm praps in a state of denial?...)
More superficially: ignoring it of course fits to her attitude: sickness doesn't happen. And if it seriously did, her world might break apart - then she'd be in a major state of distress and despair. That seems even more reason to live that way. As far as that gets us.
It seems a type of perfectionism, so working against that with the Pareto principle attitude: 80% / 20% might help.
What she probably feels like is that she has to take over that 1/3 of the battery life that you are now missing 1/3. Instead it might be good for both to not get everything done, but to prioritize better, by asking each other: what needs to be done most today.

Not letting ourselves become dragged down by this kind of stuff is of course a positive part of this attitude, rather than being "caught in the headlights like a rabbit", or doubling suffering by suffering about it. But the headlights are there and we need to know exactly where they are, so we can decrease their danger.
So more fitting is to look for the headlights to be active about them, rather than to deny them.

I'm trying to help my wife see the fragility in herself in the defensive posture she takes toward nearly everything in life and to see that a change toward the positive would really help her enjoy her life and let her soul breath a whole lot more than it does with the way she has her coping mechanisms currently arranged.

Sounds excellent! Maybe she can partly learn to see what she thinks is "strength" as a weakness, and find her other strengths, learn to let go, learn to love (everything) more and do less.
(For some people therapy may be necessary for such a paradigm shift, and as way there couple therapy.)
But we can't force it and need to stay independent of that, as I think you already are trying.

massive amount of credit that she is due for the way she runs our household.

Yeah, I can imagine - good to give credit to a certain extent. But a life that is mainly geared to a perfect "household" (etc.) may not be fulfilling, and the life ahead can be more so, cos this condition like other "strokes of fate" questions what life is about - love and not dust-freedom. So less may be more. Quality time rather than quantity.

surprised at the degree to which others are suffering; I am still pretty functional in comparison. I feel like a lightweight

The good thing about this is you have realized in time. I didn't. I pushed thru. My wife tried to stop me. But I crashed big time and "for good" (in several senses of the phrase). Might be good for your wife to hear real life stories like that, to re-focus your lives.

 

[Badger]

I tend to come back to the explanation that it feels like flu when trying to describe to other people. I tell them on top of that, injuries may heal but still trouble me for the most part and brain fog makes it difficult to function. I try to tell them plainly, in short, but if I was to say more, I might say that I cannot remember what it's like to feel well rested or not chronically sore. I'm not sure if it's age and the cold weather but mornings in particular are worse, with deep aches, a sharp pain through the body, feeling washed out and foggy. Unfortunately neck pain and headaches make it difficult to be more active or make progress with study. It's like walking on a bad ankle, you need to walk, but cannot run, walking causes pain to flare, but still you need to walk.

@FibroWhatsTHAT hopefully over time you will begin to discover what works for you to both manage FM and help towards quality of life in future.

 

[SBee]

For me the stiffness can feel unbearable. I liken it to wearing a concrete overcoat. Worse in the mornings but never goes away.
Every single movement I make gives me pain or discomfort. My husband says I cry out in pain every time I turn over in bed.

I cannot now remember what it feels like to move freely or be out of pain. The fatigue has taken away my 2 hour daily fast walks,which were essential for my mental health the last few years. I can't reach for anything on high shelves when shopping so I can feel inadequate asking for help.
But it's one of those hidden conditions.
Sometimes when someone looks blankly when I try to describe how it feels I have to remind myself non of us can ever understand someone else's pain.

 

[WorryWart]

For me, my fibro makes me feel like almost every part of my body hurts. Both sides, equally. I have different levels of pain everywhere, but the worst pain is in my neck, shoulders and upper back. My ribs at the bottoms and sides also hurt, and are so tender to the touch. Also my hips, lower back and pelvic region also hurt. I have many tender Fibro points as I'm sure most of us do. For sure the pain affects my sleep in a negative way, and then of course I wake up tired. I recently got a new mattress and it is a little too firm. For sure I feel it's making my fibro worse. I think I need some kind of egg crate on top of the mattress, or some kind of super padded mattress pad. So this is basically a description of my fibro.

 

[sunkacola]

I recently got a new mattress and it is a little too firm. For sure I feel it's making my fibro worse. I think I need some kind of egg crate on top of the mattress, or some kind of super padded mattress pad.

You might want to try a memory foam topper. I put one on my bed and it made a big difference in my comfort level. You can get them on amazon, and they really are not very expensive. the only thing is they don't last at that comfort level forever, and may need to be replaced every 3 to 4 years or so. But for what they cost, replacing it every few years is not that big of a deal. I think mine cost about $60, although the size of your bed and thickness of the memory foam naturally affects the cost.

Those egg crate pads are useless in my opinion. The little "spikes" that stick up go flat in no time and then it's no help at all.

 

[ceoshank88]

Fibromyalgia? It's like pain's playing tag with me 24/7 – one moment sharp, the next achy. And sleep? Forget about it. Fatigue's my constant companion. Meds offer some relief, but CBD's a no-go thanks to work. Have you given yoga or acupuncture a shot?