How do you explain what fibro feels like?

[Willowtree]

@Willowtree , welcome to the forum.
That shock symptom you have.....wow. I also know what an electric fence feels like, and that's an intense thing you have going on there. Have you had all of the possible causes for this investigated? I ask because I have not ever heard of this with relation to fibro.....which doesn't mean it isn't, just that I haven't heard of it. It sounds neurological, and definitely strange.

I have sudden very sharp pain at times in my hands, wrists, arms, or shoulders, which occur sometimes when I go to pick something up and I have to put it down again fast. But have never felt that kind of shock sensation you describe. I have had the thousand-pin-pricks-of-electricity, or feeling of having ants crawling and biting all over my legs. Highly unpleasant to say the least.

Like you, I do not live with other people, and am often glad of that. I do live with my animals, and couldn't imagine my life without them. They don't react when I gasp or make other sounds, since they are used to it. I agree with you about how attitudes can taint the very air. I always advise people to get rid of toxic people in their lives............but this is not always possible, depending on a person's circumstances.

In any case, feel free to keep posting. We are all here to help each other.

Sorry, didn't know you had responded to me. I'm not very good at figuring out who is saying what yet, or where it's coming from, or what is the correct way to address anyone? I thought I had set my settings to receive a notification if I received a response. Evidently didn't get THAT right, lol. And yes, I have had several nerve testings done, and I am just "A-ok" haha. No seriously, nothing came up. And this only started when the rest of the symptoms all jumped on board and I finally got a diagnosis in 2020, which, since I wanted to be ABSOLUTELY SURE I had fibro (I think I did a better job of getting other people to realize I have it, than accepting that myself), got tested again this past January with a new rheumatologist. He just chuckled, he was very kind. Said, "Let's just cut to the chase. You HAVE fibromyalgia. From your description, you've had it since you were a child." I believe that is when my world just got tipped upside down a bit. I had no idea that I hadn't really accepted it myself. Now THAT is weird. Because a number of past incidents over a number of years kinda fell into place, like tumbling blocks. And I believe I just said this in another post....it's been a long winter. It was after the last rheumatologist visit that I joined. And yes, what you described above with the "sharp pain at times in my hands....." is exactly it, it feels like an electric shock to me. Or if I'm absently holding on to the remote, a coffee cup, not intending to, and then, bam, down it drops. And thank you, btw

 

[sunkacola]

Sorry, didn't know you had responded to me. I'm not very good at figuring out who is saying what yet, or where it's coming from, or what is the correct way to address anyone?

You can tell who is making a post by looking at the icon and name to the left of the post. Mine, for instance, is a big lavender colored "S", and underneath it there is my forum name.

You can respond to a specific person in a couple of different ways. You can quote their entire post, by clicking on "Reply with Quote" which is in blue text at the bottom of everyone's post on the right hand side.

Or, you can respond to a part of their post, as I just have with this response, by highlighting the part you want to quote. When you do that a black box will appear below the part you highlighted, and you can click on "reply with quote".

And, another way which is very simple is to type in the @ symbol and then (without putting a space in between) type the first 3 or 4 letters of the person's forum name. So, for instance, to tag me in a response you would type @sunk
A drop down box will appear with all of the member names that start with those letters, and you choose the one you want and click on it. When you do that, that member will receive an alert that you have mentioned them in a post.

 

[AgeinBArk]

Have you tried just sitting down and having a heart-to-heart with her? Show her some articles or even bring her along to one of your doc appointments so she can see firsthand what's up.

 

[Willowtree]

Thank you! That was brilliant, huge help to me, I'm sure that should have clicked before, I've used computers and messaging for years....but......well....y'know....I can only claim fog.....

 

[BlueBells]

@Willowtree @SBee @sunkacola

He just chuckled, he was very kind. Said, "Let's just cut to the chase. You HAVE fibromyalgia. From your description, you've had it since you were a child." I believe that is when my world just got tipped upside down a bit. I had no idea that I hadn't really accepted it myself. Now THAT is weird. Because a number of past incidents over a number of years kinda fell into place, like tumbling blocks

100% understand that !!!! A friend , mid 2019, asked me if I'd been checked for fibro, which I'd never heard of. Long story cut short, including a good chat with the surgeon that did my ex's carpal tunnel, and zappy test by neurologist, with her suggesting fibro, eventually doc agreed, I ticked enough boxes.

I know what you mean, so much falls into place. Since mid teens, knowing something is wrong, and docs just wanting to throw pills at you because of "bad nerves" or being dismissed as "it's all in your head". I realised why I fizzled at school, and just couldn't keep up with everyone else in so many ways.

I think the real benefit of these forums is finding others who genuinely understand.

 

[Steve C]

I really like how you express it feels like somebody borrowed your body and beat you up. That's exactly how I feel every morning!

 

[BlueBells]

I really like how you express it feels like somebody borrowed your body and beat you up. That's exactly how I feel every morning!

@Steve C Gotta watch out for those fibro gremlins, they dragonise us

(someones spellcheck changed diagnosed to dragonised. I love it )

 

[JamieMarc]

Please don't let yourself be a hostage of another person, no matter who they are.

When people ask me about my fibromyalgia I simply say that it is widespread, chronic pain throughout my body; frequently fatigued; and difficulty sometimes with being able to focus and think clearly. What they do with that information is their business not mine. And if they have an attitude of indifference, I don't need nor want that person in my life.

I'm not one to go around complaining and whining about my health problems, but if someone does ask, or if I feel that I have to explain I can't do something because of my fibromyalgia, that is the typical explanation that I give.

I assume that you see a doctor and are under a doctor's care for your fibromyalgia. Perhaps your partner should accompany you to one of your doctor visits? Do you think that might help?

 

[BlueBells]

@JamieMarc @Steve C

Hi guys. Just a suggestion, putting a name to a response makes it easier for us to follow, i.e., look back to tie the comments together etc.

@JamieMarc
I tend to be a bit like you, but never sure whether it's just best to learn how to say "no" and leave it at that. I've been trying to learn that for a decade or more, still trying

Trying to hit that balance of explanation without sounding like an excuse, not an easy one. I think people who never really get sick much have less ability to comprehend any of it at all.

I was in a shop a few months back, and fibro fog/brain was having a field day, I did something odd, and just said to the lady nearby, "ahh, fibro's got me today" and she said, "fibro?" I said "fibromyalgia, foggy brain" "oh", she says "I have that". We chatted for a bit, both pleased to find someone that "gets it".

 

[JamieMarc]

@BlueBells
If I am responding to the original posters question, I don't feel the need to tag them. If I am responding to another message within the thread, I will tag a person. It's already hard enough on my fingers to use my phone, thus speech to text, so I avoid using my fingers and take advantage of a speech to text whenever possible, which is also why I don't tag the original poster if I am responding to his or her question.

Like you, I also tried to keep my explanations simple and brief. That speaks to what you said about sadly feeling I have to maintain a balance between explanation and excuse. LOL. Sometimes the less said the better.

 

[BlueBells]

@JamieMarc

It's already hard enough on my fingers to use my phone,

I so understand that !!! I don't think I've seen anyone say that before. I find on mobile so hard on my fingers/hands, gets like little electric shocks, and then I have phone slip from hands, so have it on a surface.

I generally used my laptop, i need the area. that being said, when hands bad, as now, i tend to skip caps etc , less keys.

mostly i just binge tv, usually netflix or such as no ads, no need to use remote. i know its bad when i need one finger on key, other hand to press on top. sign to stop. i'm bordering that now.

sometimes the desire to communicate and the lack of ability (can't make sense on ph call, fog,) always goes together. i lose myself in simple movies

take care

 

[JamieMarc]

@BlueBells
Yes, using my phone is one of my biggest triggers I guess is the right word. I am so so thankful for speech to text, otherwise I think that I would very rarely use my phone for communication. It's that hard.

I also utilize a stand and even a stylus when necessary. Unfortunately, in today's world, we rely upon our phones and other devices so much that it is almost impossible to get along without one. But on the upside, they also enable us to do things good like engage in this forum for example.

My personal super bad time for using my phone is usually in the evening, probably because that's when my body, my whole body, tells me you have done enough today, Jamie, I need a rest. LOL. The mornings can be difficult too, but once my stiffness goes away I am much better able to use my phone in the mornings. In fact, that is when I go through my forums like this and do my writing/speech to text.

I'm sorry for your own pain and difficulty using your phone, but I'm glad I'm not alone. It is really really hard for me sometimes, and even my fibromyalgia fog comes into play when trying to respond to messages here and in other forums I belong to. Sometimes it is so hard for me to find the right words. Much more difficult than it used to be when I was younger and did not have fibromyalgia.

Hugs!

 

[BlueBells]

Hi @JamieMarc

I'm sorry for your own pain and difficulty using your phone, but I'm glad I'm not alone.

I know exactly what you mean, just knowing others have same issues helps so much. After years of not know why, now I know, and slowly getting the hang of it.

Sometimes it is so hard for me to find the right words. Much more difficult than it used to be when I was younger and did not have fibromyalgia

Oh boy! Isn't that fun? Getting words muddled, then slurred, at times I feel tipsy when it hits, and so many words go out the window
I've been trying to find out what's wrong with me since teens, and now it has a name, so much is explained. I've definitely had fibro since about 12 or 13, maybe as young as six. I now know why I struggled at school, and so many other things throughout my life.

I don't actually get the pain, but I am wondering if maybe I do, and the brain picks it up as all the symptoms of pain, but not the actual "pain" of the pain, if that makes any sense at all.

I find days can be bright, and energetic, but the next is flat, or the day can be great, then the plug is pulled and no energy, then back again, and this upsy downsy can happen several times a day.

I've had a particularly long run of fog and brain dead the past couple of weeks, and as I work part time, this is not good at all !!!! Fortunately I work from home, and my hours are mine, so I go when I can, and trying to learn not to belt myself up when I just cannot.

About bed tome here, hoping for a good rest, as tomorrow will be busy again.

Take care