👋 hello...im new on here, recently diagnosed at the age of 60..although relieved its made sense of everything im feeling very overwhelmed & alone 😔.

[Somersaults]

hello...im new on here, recently diagnosed at the age of 60..although relieved its made sense of everything im feeling very overwhelmed & alone .

 

[sunkacola]

Hi @Somersaults , and welcome to the forum.
I am sorry you are feeling overwhelmed and alone. Many people on this forum have felt the same way, especially at first, and it is completely understandable that you would feel like this.

I want to tell you that you are not really completely alone, even though it feels that way. We are not there for you in person, and I really wish we could be, but we are here on this forum to help in any way that we can. You can write to us here, give your experiences, talk about your fears and frustrations, and we will read and respond and do our best to be helpful and supportive. That's what we are here for. You can also just vent and complain all you want to....we all do that sometimes...if it will help.

If you have any questions for those of us who have been dealing with fibromyalgia for years, please ask. What works well for one person with fibro will not necessarily work for another, but we can tell you what we do or what we don't do, give tips on managing the pain and brain fog and other symptoms. I hope that the forum will be helpful to you. We are glad that you found us.

 

[Somersaults]

Oh thank you so much for answering...wasn't sure I'd done it properly! I'm very low, my family haven't really said anything about my diagnosis, my children are all grown up with lives of their own & I live with my dear husband of 43yrs....I don't know what I was expecting but he hasn't really taken much notice, iv been trying to educate myself with the Internet & podcasts however this forum will be so nice, thank you so much for nice welcome xx

 

[sunkacola]

@Somersaults you are most welcome, and I know that others here will also write in to welcome you to the forum.

Sometimes the people closest to us have a hard time accepting what is going on with us when we have fibromyalgia or some other chronic condition. Fibro is especially hard because there's no test that proves you have it, and it is one of those things that is invisible to others.

sometimes people don't want to acknowledge it much because they don't know what to say or what will help, so are afraid to say anything...and sometimes they don't want to acknowledge it because to do so means that it's real and might happen to them. These things are subconscious, for the most part.

And the other thing is that no one can truly understand what it is like unless they also have experienced severe chronic pain. One thing that many of us find helpful is to stop ever expecting anyone else to actually understand unless they have, or have had, chronic pain as well. It's just not possible to understand it, even if they try. What we can hope for, or even expect from some relationships is that they will listen to what we say and believe us. And, if they can be helpful that is wonderful.

You are fortunate beyond imagining to have a dear husband. Many of us would give everything to have a supportive partner. Maybe if you have the chance to sit down with him and be realistic about what he could do to be helpful to you, that would be a useful thing to do. Maybe even just start out with a suggestion or request that once a week, say, you have a little sit down with coffee for a half hour or less and you tell him what is going on with you and what he could do to help. Just starting very small like that might be a way to get some response from him. Letting him know that you do not expect him to fix you or to understand what it's like for you, just to listen and be sympathetic and maybe do the laundry for you or something like that if you are having a bad day.

Just a thought.......obviously you know your husband and your relationship and I do not, so if that suggestion isn't a good one, just toss it out and ignore it.

 

[Somersaults]

No..I think that's a great idea..thank you..& you are right, I really don't know what I was expecting anyone to say to me! It's been a very hard few yrs, the last 12 months especially...lots of x rays...mri's...colonscopys...physio etc...& everyone was so supportive....but now this diagnosis has sent them running! To be honest I'd like to hide to! I'm relieved I'm not seriously ill...devastated there's no cure...Just need to except it myself & then maybe I can start to talk...thank you so much for advise xx

 

[sunkacola]

Yes....one of the major keys to dealing with anything like fibromyalgia which will not go away is to learn to accept it. This isn't easy and it doesn't happen overnight. Acceptance doesn't mean complacency, doesn't mean approval or acquiescence or apathy. It doesn't mean one does nothing about it. It just means that a person stops being angry about it, stops thinking "this shouldn't be happening", stops fighting it or letting it frustrate them daily.

Easier said than done....and it took me years to get to the point that I truly accept it. Doesn't always take people that long(!) but I was a bit of a hard case, because I've always by necessity relied only on myself and have had to be strong and I just couldn't, for a long time, accept the fact that I was no longer able to do physically what I used to do. But I do find that in life, with everything and not just fibromyalgia, the degree to which I can accept what actually is in the moment is the degree to which I can have some inner peace, even in the face of tremendous challenges.

 

[Harpy]

G’day Somesaults, welcome to the forum. You are so much alike most of us here. Having had everything the body can cope with to come up with an answer to what’s wrong with us.

I too like sunkacola have had to rely on myself. I get no help at all from my H. My kids are there if I need them but don’t ask often as the have lives and families of their own to care for.

I have a great osteopath and rheumatologist who are on top of the list in my care.
When I get to my lowest now I take myself out to a large shopping centre and get myself a hot cuppa, I really do enjoy sitting there watching everyone go by.
No it doesn’t get me down as I can’t walk and get about like them , it just gets me out of the house for a while. Sometimes I even see someone I know and they will stop for a chat .
I listen to them and try not to say too much about my pain, if they ask I keep it short and change the subject.
Don’t be too hard on yourself. Where all here for you.

 

[Somersaults]

Oh that's lovely...I'm already feeling better about things, thank you all for being so kind ...kindness is sometimes all that is needed.....it's abit like a hug...xx

 

[Radmun]

Hi Somersault, I am sorry you have been diagnosed with Fibromyalgia, but I am truly glad you found this forum. It honestly will make you feel better when you realize that there are others out there having the same issues.

My recommendation would be to look up on YouTube Dr. Daniel Clauw. He is a research doctor from University of Michigan where he’s been studying fibromyalgia for years and basically explains the condition to other professionals. I made my husband watch it with me because he explains what is going wrong with our bodies to give us so much pain and what medication can be used to treat it as well as dosage issues.

I hope you find relief soon.

 

[Somersaults]

Hi Radmun...thank you so much for messaging me...I will! It's just so daunting...I'm also...what's the word...almost embarrassed to tell people what iv been diagnosed with...I know that makes no sense ...I'm trying to learn as much as possible so I will look that doctor up. Thank you again xx

 

[sunkacola]

@Somersaults it "makes no sense" for that to be embarrassing....but sometimes we cannot apply logic or "sense" to the way we feel, and those feelings are still valid and deserve to be respected.

I am a very private person, so I do not tell people most of the time. If it is necessary for me to say something I usually start by saying I have a chronic pain condition. Only if the person asks for more information do I mention fibromyalgia. I am not embarrassed by it, but I also just don't want to talk about it with everyone, so I avoid that. There's nothing wrong with your avoiding mentioning it if you want to. As you become more accustomed to the facts of it in your life, you may (or may not) feel more confident about mentioning it to people, and you always get to choose what you say and to whom.

 

[sassy37]

Dear Somersaults. I am 72 this year and have lived with Fibromyalgia for more years than I care to remember. Back when all doctors thought you were neurotic, faking or simply, a hypochondriac. All of us with this terrible chronic illness feels alone at times, but now you are a part of group who feels your pain and totally 'gets you'. I am so sorry that you have FB but so glad that your illness has a diagnosis. Your pain has been vindicated. I have learned so much from listening to others tell their journey and been able to understand that what I was feeling could be attributed to my chronic illness. Talk in here. And listen and learn that you aren't alone and so many understand what you are going through. Knowledge is power and we need all the power we can get to survive.

 

[sunkacola]

hello @sassy37 and welcome to the forum. What you say is so true about learning what others are going through and being able to feel that you are not entirely alone. Being on this forum helps me every day, because I know that I am communicating with others who understand some vital aspects of my life even though we have never met in person. And that understanding comes with strong support that can be felt even though we may be in different countries. It's valuable.

Thanks for joining in here, and I hope that this forum will be helpful and useful to you. We are all here because we want to help each other.