Really need some help it’s too much

[Meg1986]

Hi I am new on here. I finally got diagnosed about 6 months ago with little help from the doctors so I don’t enjoy having to go to them for help. I am speaking to someone at the hospital but everything taking so long.
Iv been complaining and begging a doctors to help and listen to me for the last ten years and now I can barely get about the house, I lost my gran this year and nearly lost my husband in an accident which I think had made everything worse but I have no energy to pretend or ignore or hide what’s going on any more. Picking up a cup most of the time it weighs a ton so heavy, I don’t have the energy to get about I am constantly dizzy and confused. The pain and weakness everywhere is so overwhelming. Someone accused me of being an alcoholic the other day when I was out as I looked a mess and was stumbling.. I don’t even drink. I don’t feel like my partner hears me or understands the pain I am in. I cry and cry and cry. More and more I am letting people down cos I have responsibility’s or things thrust on me that I can not any longer partake in. I haven’t the energy to make a meal or walk upstairs. I feel so useless. I don’t know what to do anymore, how do others cope with this when it is at its worse. The pain the fatigue the guilt and the shame and frustration I honestly don’t know where to start. I genuinely feel no one understands I don’t know what to do. Any help or ideas or suggestions I would be thoroughly grateful for, and thank you for taking the time to read xx

 

[sunkacola]

@Meg1986 , you have come to a good place. Welcome.
People here understand what you are going through!
Even though we are all over the world in different kinds of lives, rich and poor and with family and alone, working and retired, we all come here to share our stories with one another and give and receive support.

I'm sorry you are going through such a terribly tough time. I have been there, as have many others here and we hear you.

I suggest you read the post I am going to link to at the bottom of this message. there might be something there that will help you, and the only way to find out what will make a difference for you is to experiment and find out. Many of us here have found coping strategies and lifestyle changes that have helped us immensely. Of course, in the end we still have fibro, since there's no cure. But we can learn how best to manage it.

One thing I always try to remember is that NO one, no matter how close to you or how much they love you will actually understand unless they also have a chronic pain condition or other disability themselves. So I gave up ever wanting anyone to understand. And I only ask that the people around me believe what I say and don't make my life harder than it already is.

We all know those feelings of being useless. I sure do. What I have found is that it's very important to work hard at finding the best ways to manage and mitigate the symptoms of fibro myself, without relying entirely on doctors or medications to do it for me. By doing that, a person regain a sense of autonomy, can feel more self-reliant, and it is very empowering, even if in a small way. While having a relationship with a doctor is necessary, and for many people so is medication, depending entirely on medications and doctors generally leads to frustration as opposed to feelings of being competent in your life.

Stick around. Complain here if you need to....we don't mind. Ask questions if you have any. We want to be there for you.

S

Thread 'My advice for managing fibromyalgia (especially for newcomers)'

Jul 21, 2020

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.

I was at...

• sunkacola
• Replies: 29
• Forum: General discussions about fibromyalgia

• 
• 

 

[BlueBells]

Hi @Meg1986

Welcome to the forums (you need hugs )

I can so relate to what you have written. You will find many on here can also.

I am in trouble when I have trouble making a cup of tea , mug in microwave when even two hands can't handle the kettle. I need two hands to hold the cup, too. That's bad for a tea-aholic.

At times the fibro fog hit, and everything else, and I lose the conversation mid sentence, or mid word, and start slurring like I'm tipsy, and yes, it's fibro gremlins throwing a party

I've found that being here and knowing others have similar or same struggles, somehow it makes it easier, we lose that added pain of being alone with it.

Please keep coming back and interacting, that's the key of the forums!

I'd better go, hands collapsing and I have a lot of work to try to get done. Take care. Hugs

 

[Meg1986]

Aw bless u thank you so much for replying that’s really touched me u so very kind. It’s crazey to hear that others are experiencing this. I couldn’t get met head around it given how debilitating it can be. Do you have to sleep a lot too. N yes the mid sentence thing is notorious I thought for a while something really bad was wrong with me it scares me a little less now I know but makes me feel really stupid. Am trying to turn it into a joke tho!
Honestly your reply has made me cry to actually have an interaction where it’s completely understood thank you so much you have made my day so much better xxxxx
Much love hugs and thanx xxx have a great day xxxxx

 

[sunkacola]

Aw bless u thank you so much for replying that’s really touched me u so very kind. It’s crazey to hear that others are experiencing this. I couldn’t get met head around it given how debilitating it can be. Do you have to sleep a lot too. N yes the mid sentence thing is notorious I thought for a while something really bad was wrong with me it scares me a little less now I know but makes me feel really stupid. Am trying to turn it into a joke tho!
Honestly your reply has made me cry to actually have an interaction where it’s completely understood thank you so much you have made my day so much better xxxxx
Much love hugs and thanx xxx have a great day xxxxx

So glad that we can be of help to you in some way!

As for sleep.....I WISH I could sleep a lot!! When I can get enough sleep....which means at least 8 hours, preferably 9....I feel incredibly better. Sadly, most of the time these days I don't get that much, as I am waking up at 2AM and no more sleep after that. But I am hoping it is temporary, as this has only gone on for about 3 months.

Turning things into a joke can be helpful, and certainly keeping one's sense of humor is vital. Be kind to yourself. Treat yourself as if you were a small child....be gentle and understanding. And know that you are not alone, even if it feels that you are. We may not be there, but we know where you are.

 

[BlueBells]

hi @Meg1986

I've cheated, this is copy/paste from something I said to another couple of newbies here. I mean it as sincerely, but typing is a little hard at the moment, I still wanted to tell you this though.

I'm so pleased you are already reaping the benefits of knowing you are not alone, nor mad, nor imagining....that you are just dragonised by the little fibro gremlins, like the rest of us

""A couple of things I learnt here, when answering someone and wanting them to see the post, put the @ symbol before their name, as you can see above. This brings an alert to that person on the off chance they may miss your post.

Also, hitting the "enter" key will break the post into paragraphs, too. Some of us have difficulty when there is a large 'block' of writing, and either can take several attempts to get through it, or just skip through, or just leave it altogether.

That isn't good, as the poster is not being 'heard', and the reader is missing things they may well be keen to respond to.""

Take care

 

[Sylph]

@Meg1986 I can relate!

Wait... what was I going to type?

Huh, guess it wasn't important

It comes and goes! Makes me appreciate when it's not there a whole heck of a lot!!!

 

[sunkacola]

@Sylph , I understand!
Usually, if it's important, it will come to me later. But it is frustrating when suddenly I cannot remember the word for something completely ordinary. In my whole life that never, ever happened to me until fibro.

I always remember it eventually, but not always in that conversation. Kind of embarrassing. But then I tell the other person, and almost always they say it happens to them too and then we can both laugh about it.
May as well laugh!

 

[blckw1dow]

@Meg1986 Hi there .
Im new on here also but I know exactly how you feel I can relate bless ya .

I've had some really bad times lately aswell like you say people don't always understand the illness or your cries for help which can make it worse for us. But now we are on here we can share our thoughts & worries with these lovely people who understand what we are going through aswell .

I felt some much better once I signed up on here as now I feel connected & that everyone can relate in some way.

I hope you feel better soon & keep on to your doctor that's what I did & my illness got worse so I kept going back to the doctors until they said oh something isn't right & finally referred me to the specialist then had my diagnosis, but hanging there you will get there & we are here to vent to .

 

[ckahern]

I have experienced all the same feelings as you. I was diagnosed in 1994, when I was 29 years old. Fibromyalgia can steal your happiness if you let it. I have been to many doctors that have dismissed my complaints! Doctors do not understand Fibro enough to be of much help. I have leaned heavily on my faith and I meditate everyday which keeps me hopeful for a better day. I just started on Cymbalta and it has helped with the pain and my sleep. I will pray that you find some peace in knowing that you are never alone if you invite Jesus into your life.

 

[BlueBells]

@ckahern

welcome to the forums

you are never alone if you invite Jesus into your life

Just giving you an heads up, specific referals to any religious stuff is not permitted on here. I know you mean well, but just letting you know.

Mentioning faith etc is fine (I think, I'm not a moderator) but not names or religious groups.

Enjoy the forums

 

[sunkacola]

Thanks, @BlueBells .
@ckahern , we avoid specific religious talk so that this forum can be a welcoming and comfortable place for everyone of all faiths and beliefs, just the same as we avoid political discussion here. If your faith or religion helps you in your life, that is great, and by all means say so, but talking about specific gods can trigger some people or make them uncomfortable, since not everyone is in agreement on what god to worship, and some people have experience abuse within a religious context. Thank you for your understanding.

 

[ckahern]

I read the rules and I didn't see anything about that, but I get it.

 

[sunkacola]

I read the rules and I didn't see anything about that, but I get it.

Thank you very much.