Feeling very alone and unable to manage

[sunkacola]

This forum can be an amazing place of support but can also at times feel like a lot of unsolicited advice, as though you are a broken toy to be fixed. Again i truly believe the advice given comes from a place of caring and that shared struggle we all live with.

The challenge with a forum like this one is that it is so remote from the actual people. We have no way of knowing a person but by what they write. A person comes here and writes a sentence or two or a paragraph about how they feel or how they are coping or not coping. And of course, a response is necessary or the person will feel (and actually be) ignored.

So, you have to decide: are you going to offer advice or are you only going to sympathize/empathize? Doing either one may not be what that person is asking for or wanting. If you offer advice you may be told "I'm not broken and don't need to be fixed", or if you only offer empathy you may get "Gee, I need advice!". But we have to offer something.

My way tends to be (or so I hope and intend) that I do both. I say to the person that they are not alone, that many of us understand, and then I offer advice. It's the best we can do.

Also, we can only offer the best advice we have. Many of us agree that trying more natural methods of dealing with fibro first or in conjunction with medication is a wise approach, because if you rely only on medication you may be missing out on being able to decrease your need for the meds by doing other things. For many people, medication is given by a doctor and that's that. They have no idea there's anything they can do themselves. that's how it was for me at first. But I found out that it's more productive to simultaneously try dietary changes, exercise, and other things like supplements and activities that can reduce the need for the meds.
To fail to mention that would be a disservice to the new members who come seeking information.

Rhyl received very supportive replies, and none of them were critical. None indicated that they were not doing enough. But most of us have been very active people pre-fibro, and we all can tend to go down the path of self recriminations, not feeling we are doing enough, because we aren't doing nearly what we used to. And this is greatly exacerbated if there is even one individual in that person's like who thinks or expresses that opinion to them as well. This is a downward spiral that I'd bet most of us have experienced. When that happens, it's easy to take most anything in a negative way, even if it wouldn't be read that way otherwise.

We all have to be mindful with what we say to each other. But in my experience this is the most supportive and non-critical, non-judgmental forum you will find. And, I invite all of you to tell me, as moderator, if you ever think something I write is harmful in any way. I am always open to hearing feedback on my posts.

 

[hope23]

The challenge with a forum like this one is that it is so remote from the actual people. We have no way of knowing a person but by what they write. A person comes here and writes a sentence or two or a paragraph about how they feel or how they are coping or not coping. And of course, a response is necessary or the person will feel (and actually be) ignored.

So, you have to decide: are you going to offer advice or are you only going to sympathize/empathize? Doing either one may not be what that person is asking for or wanting. If you offer advice you may be told "I'm not broken and don't need to be fixed", or if you only offer empathy you may get "Gee, I need advice!". But we have to offer something.

My way tends to be (or so I hope and intend) that I do both. I say to the person that they are not alone, that many of us understand, and then I offer advice. It's the best we can do.

Also, we can only offer the best advice we have. Many of us agree that trying more natural methods of dealing with fibro first or in conjunction with medication is a wise approach, because if you rely only on medication you may be missing out on being able to decrease your need for the meds by doing other things. For many people, medication is given by a doctor and that's that. They have no idea there's anything they can do themselves. that's how it was for me at first. But I found out that it's more productive to simultaneously try dietary changes, exercise, and other things like supplements and activities that can reduce the need for the meds.
To fail to mention that would be a disservice to the new members who come seeking information.

Rhyl received very supportive replies, and none of them were critical. None indicated that they were not doing enough. But most of us have been very active people pre-fibro, and we all can tend to go down the path of self recriminations, not feeling we are doing enough, because we aren't doing nearly what we used to. And this is greatly exacerbated if there is even one individual in that person's like who thinks or expresses that opinion to them as well. This is a downward spiral that I'd bet most of us have experienced. When that happens, it's easy to take most anything in a negative way, even if it wouldn't be read that way otherwise.

We all have to be mindful with what we say to each other. But in my experience this is the most supportive and non-critical, non-judgmental forum you will find. And, I invite all of you to tell me, as moderator, if you ever think something I write is harmful in any way. I am always open to hearing feedback on my posts.

You are 100% right and to find that balance is like walking a tightrope. This forum has been an incredible space for me personally, however my first few posts my reaction and feelings about the responses i got were coloured and marred by my own experiences on my health journey.

I think when you live this life you need to try anything and everything to try and get even a little better, and you may find that lots of things helping a little can make a world of difference. I dont disagree in terms of the natural path IF that is effective for you and your fibro, but your right youve got to try it(and everything else that has the potential to help).
The challenge for me personally(and please keep in mind my own experiences with people in my life and health professionals) is that when i first joined the forum i felt as though i was 'failing' because my fibro cannot be managed through natural means and methods(i have tried every alternative therapy available to me within NZ(and spent thousands of dollars to do so) along with dietary changes, exercise programs, vitamin supplements etc), all of those things ive tried has equated to i need magnesium as my cramps and spasms are reduced, i now can't/dont eat cheese or onions as these both increase my pain levels, and stretching which doesny reduce my pain level but helps to mean it doesnt go up, of everything ive tried thats a very small list of natural means to help with my fibro. And all those things ive tried i stuck at for 6-9 months. For me and my fibro natural means dont work BUT you have to try it, try anything that has the potential to help.
This feeling of 'failing' was a result of my own personal experiences(with many thinking i was either weak, didnt want to get better, or didnt try hard enough) and is not the fault of anyone here and i know the intent is never to make someone feel like that. For someone like myself the heavy focus on natural means of managing your fibro meant i then felt like i was failing or doing it wrong.

I am now strong enough that actually i dont feel like that anymore, and can see that for what it is which is advice based off what others have found effective for their fibro, ive found the things that work for my fibro which is yes medication and that is a win(because ive found the things that make functioning and working on a daily basis possible) even if its different to how a large number of forum members manage their fibro. The most important thing is to find the things that work for your fibro, whatever that may be.

I dont want to assume how Rhyl was/is feeling i can only share my own feelings and experiences on my first few posts, which again were based off my own experiences and not the fault of anyone on the forum.

 

[sunkacola]

Hi Hope, thanks for your feedback.....it is valuable for me to hear all of this. One thing I notice in your post is that you say your fibro cannot be managed through natural means and methods, but you also say that magnesium reduces cramps and spasms, not eating onions or cheese avoids those things increasing pain levels, and stretching doesn't reduce pain but at least it doesn't go up. So, you are helping to manage it with those things.

It is important to acknowledge that doing any or all of the natural things I recommend doesn't mean that a person will be free of fibromyalgia or free of pain. Managing fibromyalgia means that you are doing what you can that works for you to whatever degree it works. To me, you are indeed managing your fibro with natural means in addition to medication, because without having discovered those things you mention it would be worse.

I don't manage my fibromyalgia with natural means alone, either. I just don't need pain medication nearly as much as I would without doing the other things. It's all a matter of degree, but if anything helps even a little bit, that's a win.

And, I also fully understand that if a person comes here and has been on a long hard journey of doctors, bad advice, disbelief, and struggle of many kinds, they can take what is said and turn it in a different way just due to their own experiences as you say. I hope that if someone feels this way they will say so, and allow all of us to be supportive.

 

[hope23]

Hi Hope, thanks for your feedback.....it is valuable for me to hear all of this. One thing I notice in your post is that you say your fibro cannot be managed through natural means and methods, but you also say that magnesium reduces cramps and spasms, not eating onions or cheese avoids those things increasing pain levels, and stretching doesn't reduce pain but at least it doesn't go up. So, you are helping to manage it with those things.

It is important to acknowledge that doing any or all of the natural things I recommend doesn't mean that a person will be free of fibromyalgia or free of pain. Managing fibromyalgia means that you are doing what you can that works for you to whatever degree it works. To me, you are indeed managing your fibro with natural means in addition to medication, because without having discovered those things you mention it would be worse.

I don't manage my fibromyalgia with natural means alone, either. I just don't need pain medication nearly as much as I would without doing the other things. It's all a matter of degree, but if anything helps even a little bit, that's a win.

And, I also fully understand that if a person comes here and has been on a long hard journey of doctors, bad advice, disbelief, and struggle of many kinds, they can take what is said and turn it in a different way just due to their own experiences as you say. I hope that if someone feels this way they will say so, and allow all of us to be supportive.

I guess for me whilst those things help, without medication i could do those things till the cows come home and be a wreck. I can do the medication and if i miss those things(on some days this makes no difference, on other days doing those things get me through the last hour till my next lot of pain meds is due). I definitely need to work on my perspective and how i view it, because for me without the medication im stuffed, but if i forget or dont stretch as much or have a cheat day food wise(i love cheese ) some days it may make no difference or may make a difference. So for me if i skip meds im screwed but if i forget or skip those few things that work for me its a coin toss as to whether it has an effect on how im feeling overall.
It is also worth noting that i have been in flare for MONTHS so I also need to remember that when not in flare those few things that do work help more so when not in flare. I think that makes sense

 

[Sister50]

Thanks to all who responded. One of the reasons I don't post much--anywhere, actually--is because I sometimes feel like everybody thinks I'm not doing enough.

As I see it, I *am* doing as much as I can. Here's the thing: everything I do/need to do is affected by my depression. I am extremely low energy, have trouble doing anything with any consistency, and my motivation is low because nothing seems to really make any difference.

And yes, I do and have done all sorts of things to help with the depression. Therapy, mindfulness (the only thing that helps even a little), medication, diet, exercise (does not help at all), etc.



Some of the dietary changes I've made in the past helped in a limited way physically, but not with pain.

I know there are a whole host of things I should try, but again...I'm dealing with pretty significant depression (and some other stuff), and even though I've tried, I can't maintain anything with any consistency. I don't know how to manage that latter.

This feels dismissive to me. Are you saying that I'm not putting in any effort? Because I actually am.

I haven't surrendered. But I can't quit work. Aside from the financial implications, work--volunteer and/or paid--is what gets me up in the morning. I've been on extended leave before, and again, aside from the huge financial burden, the depression became significantly worse because I didn't have a structure and nothing seemed to matter.

Again, thanks everyone. I'm not coming back. Nobody anywhere sees or hears how I've been trying, and that just makes me feel worse.

 

[Sister50]

I think I feel the same way Rhyl, i don't post here for the same reasons you stated. I just read to see if there are any new treatments. The issue I'm ruminating about now is whether my depression makes my fibromyalgia worse, or the other way around. Which should i tackle first. Good luck on your journey

 

[JayCS]

The issue I'm ruminating about now is whether my depression makes my fibromyalgia worse, or the other way around. Which should i tackle first.

Not sure if you're looking for an answer to this, but my way is "both", switching, both cause and tackling. And just starting to tackle to stop getting into option paralysis / analysis paralysis.

 

[Sister50]

Thanks but I was communicating directly to Rhyl.

 

[sunkacola]

Thanks but I was communicating directly to Rhyl.

Rhyl has said they were leaving the forum, and has not been back to the forum since then, so they are not very likely to respond.

 

[Sister50]

Thanks but I wasn't communicating with you. You never know who is reading your posts, nor do I expect a response.

 

[JayCS]

Thanks but I was communicating directly to Rhyl.
Thanks but I wasn't communicating with you.
You never know who is reading your posts, nor do I expect a response.

As you are now definitely "communicating" with us about this, you are now opening up the conversation, and bringing up something that desperately needs to be clarified....
if not for you, then for others. You did not need to answer.

If you were communicating directly to Rhyl, then it would have been and will in future be appropriate and clearer for you to send Rhyl or others you want to respond to direct messages via "conversations", the envelope above.
A compromise would be to use the profile post function, messaging directly on someone's profile, which can be read by others, but it's still clearer than here on a forum, public for everyone on earth.
That's maybe what you mean with "you never know who is reading your posts". Everyone is, and that's the whole point. But, it's a carefully moderated forum, so it may be everyone that is reading, but people will not get away with writing things that offend.
It sort of seems as if you don't want your posts to be public: that would make the first alternative a better solution for you.

When someone writes on the forum, they are inviting and welcoming some kind of reaction.
It's not always clear which kind of reaction, so as sunkacola said, we then offer mixes of consolation, advice and own experiences.

Or you are deliberately sending mixed messages, i.e. indirectly communicating with us, to rebuff and praps even to snub our time-consuming thoughts and efforts to help in the way that seems to be best to us, which would be unhealthy. Better for both sides would be to simply ignore any unfit advice. In most cases here advice is not specifically asked for, but actually wished for, as it then turns out after it has been given. So the chances are high (>90%) that giving advice is the right thing for us to do. If someone wants to moan and vent and is not in the right mood for advice it'd be helpful for them to say so.
But it's not helpful for all of us to hold back on advice if it is actually wished for unspoken most of the time.
Writing "nor do I expect a response" isn't clear, because it may mean that you are fine with advice, but also fine with not getting any, it's very open. If you'd mean you want to write whatever you want, but don't want a response, which I can't imagine, you'd be putting us in a double bind, something that would be creating emotional distress and exerting power. I haven't understood yet.

 

[hope23]

If you were communicating directly to Rhyl, then it would have been and will in future be appropriate and clearer for you to send Rhyl or others you want to respond to direct messages via "conversations", the envelope above.
A compromise would be to use the profile post function, messaging directly on someone's profile, which can be read by others, but it's still clearer than here on a forum, public for everyone on earth.

@JayCS A little off topic but how do you message on someones profile? I attempted to message Rhyl direct but was unable to, i remember seeing somewhere that the person you want to message needs a certain amount of points(??) In order to do so.

This may be unwise to add my 2 cents worth however here it is. We all live with the daily struggle of fibro and this life we live, and as such the desire to share our own experiences and things that have helped us is huge(because who would wish this life on someone else, or see their struggle and not offer help or ideas if it is within your power to do so)(i can see how these comments would seem to contradict things i have said in other places and earlier but as i said i can only see both sides as a result of the feelings i had on the responses on my first few posts those feelings stemmed from experiences not associated with this forum)i believe because of the life we live, the urge to share those things is huge and comes from a place of compassion and acknowledgement of the shared struggle and how bloody hard this life can be. If you dont want the suggestions then as said before simply ignore them at your leisure, or alternatively state at the end of your post 'no advice or suggestions wanted here only need some compassion' or some other statement appropriate to how you are feeling. Personally i can see both sides of it but that is purely through the feelings i had at responses to my first few posts and as said before, those feelings stemmed from experiences completely unnassociated with this forum.

 

[JayCS]

@JayCS A little off topic but how do you message on someones profile? I attempted to message Rhyl direct but was unable to, i remember seeing somewhere that the person you want to message needs a certain amount of points(??) In order to do so.

Ah, I only checked that both have enough points, and they have. But atm it's not possible to start a conversation with Rhyl or post on their profile, because they have prevented accessibility of their profile. Atm sister50's profile is accessible, and starting a conversation is, as well as a profile post.
But this wasn't possible for sister50 to take up direct contact, like it wasn't for you, I hadn't thought of that.

 

[hope23]

Ah, I only checked that both have enough points, and they have. But atm it's not possible to start a conversation with Rhyl or post on their profile, because they have prevented accessibility of their profile. Atm sister50's profile is accessible, and starting a conversation is, as well as a profile post.
But this wasn't possible for sister50 to take up direct contact, like it wasn't for you, I hadn't thought of that.

That makes more sense, does anyone know the rationale behind the points thing to be able to message directly? Just curious more than anything

 

[JayCS]

That makes more sense, does anyone know the rationale behind the points thing to be able to message directly? Just curious more than anything

Protection of our privacy to build up trust: Just imagine if any troll could sign up and immediately spam us in a distressing way without moderators being able to the single them out!