What does your fibro feel like?

[sunkacola]

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?

Really, it is so unreasonable that CBD is a problem for people because of their work, when you cannot even get high from CBD!
I am so looking forward to when all of the states have fully legalized both THC and CBD. Of course, an employer could still try to forbid it, but if it were legal a person could probably get a medical exception to the rule.

 

[SBee]

@ceoshank88 I have a feeling the newish mattress we brought may be too form, I might try a mattress topper too.

I find yoga an important part of my day. I have the stiffness, especially bad in neck and shoulders all day long. I had to give up my usual yoga as I have such bad pain in my wrists and hands. But someone recommended chair yoga, I found a gentle youtube video made by physiotherapists and it's showing benefits in me getting a better range of movement and as sense of being able to do something so positive for my body ( and mind)
@sunkacola I feel that person was totally wrong to text you so late. Am sure many of us sleep so poorly anyway. Feeling hit by a truck? Yep, that's me today, didn't do anything that may affect the symptoms but today is crap. I don't know why. I do feel for you.

 

[sunkacola]

Thanks, @SBee . I guess it never hurts to get a little sympathy now and then. I sent my friend a pretty scathing text. The other three times I told him not to text me at night, with a full explanation each time, I was really nice about it. But not this time. I am beginning to think that person just doesn't give enough of a rip to bother, because how hard is it to remember not to text someone at midnight? I would just block the number now, but this person has been my friend for over 20 years so I don't want to do that. Yet. One more time, and I won't feel I have any choice. Life is challenging enough, and we don't need people making it worse unnecessarily.
OK, I'm done ranting about it.

 

[FibroWhatsTHAT]

I really appreciate everyone sharing your individual symptoms, feelings, and experiences dealing with fibro. It's uncanny for me to peel back all these layers of symptoms I've been dealing with and discover, "Oh, that's fibro too!" Everyone one of your posts has something I relate to and live every day.

The ringing in my ears is getting worse. Fibromyalgia. I get sick constantly. Fibromyalgia. I just learned about the compromised immune system thing with fibro. I keep learning that nearly every issue I have is related to fibromyalgia, and it keeps getting worse.

It's hard to take it all in total and deal with the weight of it. Just the challenge of knowing that everyday of my life will be spent climbing a virtual mountain with my children, my career, house, spouse and all her drama, everything, on my back - trying not to slip. All with virtually zero support. If I was bleeding people would understand.

I've been off the forun for awhile just trying to deal with my life. This is really tough. Thanks for all the support and advice.

 

[sunkacola]

@FibroWhatsTHAT , I am so sorry your life is so challenging. Many of us here understand, and any time you want support you can come here and write a few sentences and we will be here to try to help. I know it's not enough, really, because it's only on the internet and not next door or in your home. But it's something, and our desire to be there for you is sincere.

If it is possible for you to do so (and I realize it may not be, certainly not always), try not to assume that every day of your life will be so bad as it feels now. Even though there's no proof things will get better and, in fact, they may not, it's also true that you never know what might be around the next corner. It's possible that something will change for the better. You might find something that helps.

It's pretty hard to think in those terms. I struggle with that myself, as do many of us here. But also I know that over the years since my diagnosis I have learned many things that help me to manage and live with fibromyalgia daily. My wish for you is that you will also find things that help.

And if you ever want to, you can come here and just vent, knowing your words will be read by people who can truly empathize with what you go through.

 

[WorryWart]

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.

Thank you for the memory foam topper tip. I can see what you mean that the egg crate foam tips may flatten over time. I was looking at the memory foam toppers you mentioned. So hard to pick one. Then I read the comments on some and some people will say "oh this one is so soft my body just melts into it" then on the same topper, someone will say "this topper is so hard, like a rock" UGH.....so hard to pick. My husband said I am just going to have to pick one and hope for the best! Thank you for the info!

 

[WorryWart]

I really appreciate everyone sharing your individual symptoms, feelings, and experiences dealing with fibro. It's uncanny for me to peel back all these layers of symptoms I've been dealing with and discover, "Oh, that's fibro too!" Everyone one of your posts has something I relate to and live every day.

The ringing in my ears is getting worse. Fibromyalgia. I get sick constantly. Fibromyalgia. I just learned about the compromised immune system thing with fibro. I keep learning that nearly every issue I have is related to fibromyalgia, and it keeps getting worse.

It's hard to take it all in total and deal with the weight of it. Just the challenge of knowing that everyday of my life will be spent climbing a virtual mountain with my children, my career, house, spouse and all her drama, everything, on my back - trying not to slip. All with virtually zero support. If I was bleeding people would understand.

I've been off the forun for awhile just trying to deal with my life. This is really tough. Thanks for all the support and advice.

We all understand what you are going through! And we feel for you! YES.....so many things go along with Fibro........chronic fatigue syndrome (we don't sleep well because of the pain) ....IBS ......I know for me, I get nervous and anxiety filled because of my pain, so then comes bathroom trips and a rumbly tummy because I get so nervous. One week my neck and shoulders will have the most pain.....then the next week my hips and lower back will have more pain......then painful ribs. Like you said so many layers are connected to Fibro! Just know we are all here with you! Sending HUGS! It nice to have Fibro people here to talk too!

 

[WorryWart]

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.

You described Fibro very well. Like a concrete overcoat! I almost got teary eyed when you said you can't remember what it feels like to move without pain. Wow......you are on target with that sentence! I'm glad we all understand each other here.

 

[WorryWart]

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?

You are right about sleep. The pain from Fibro has changed my sleep pattern for the worse. I wonder also about yoga. Everytime I talk with my doctor about about my Fibro she tells me to do yoga and meditation. I just have to calm my mind down first to sit still and not worry, so my mind can relax!!

 

[BlueBells]

@WorryWart

I just have to calm my mind down first to sit still and not worry, so my mind can relax!!

Hi there. I've found binging netflix (no ads) with simple movies, not too taxing on the brain, and that varies for all of us, but for me, it takes the brain enough effort to follow the movie that it seems to distract the worry, and hence a bit of relaxation can (sometimes) be found to happen.

 

[SBee]

Morning @WorryWart
I do find some days a lot worse than others. I have had a rare few days where I wasn't too bad ( in comparison ) and had a bit more energy, the concrete overcoat more like a lightweight jacket. But today it's all back, and my hand\wrist pain is worse than ever. But I enjoyed the small reprieve, for some light happy gardening to be done. Its hard to balance the good days as they are a lot rarer than the bad days.
So so just try to take each day as it comes.

I'm a big advocate of chair yoga? For me it's less strain on the bits of my body that are too painful. I would recommend a programme set up by health experts so maybe search for chronic fatigue yoga etc. That way the exercise can be more gentle. I love being able to do something kind but very effective to my body ( and therefore my mind too)

 

[ciubaTrader]

Fibro's like a constant flu-like ache all over, with occasional electric-shock zaps. Pregabalin's okay, but the side effects suck. Ever tried yoga or acupuncture?

 

[FibroWhatsTHAT]

I have not given acupuncture a shot yet but am definitely planning to. I have a friend who is dealing with myelofibrosis and has heard of people healing themselves with acupuncture and have sworn acupuncture was the reason.

I really appreciate the responses to this post. Hearing how you all feel and the words you use to describe it really help me understand what is going on with me and help me squelch that "other" inner voice that wanted to deny to myself that I have it - like it could be something else and I have been misdiagnosed. I think that thought is akin to being thrown in jail and wishing there were some way to get out sooner, or a way to pick the lock! It's hard to except a life sentence... Fortunately I have my children to remind me that there is so much good in my life; that they are a good reason to resist despair about fibromyalgia and to continue to try and find ways to feel better.