How do you cope?

[srdodla123]

I also have bi polar tape 2 .arnt we lucky

Same here

 

[Auriel]

Oh my goodness hopeful7 you were so young when yours started your the youngest person diagnosed that I’ve ever heard of how did you manage in school , and fun/friendships and everything after that? If I’m asking too much just let me know, I’m just super shocked how young you were to have this terrible thing we share

 

[Jemima]

I was diagnosed with fibro last month after 6 years of struggling with symptoms (since I was 15). I had thought that finally with a diagnosis, I would find clarity and successful, straightforward treatment. As soon as I was diagnosed, the first thing I did was try to learn more about the condition, but it feels like there's not much to learn besides "there's a bunch of symptoms and it sucks and often doctors won't take you seriously and maybe it's in your head!".

I've already struggled with depression and anxiety, and I feel like it's just my luck to end up with a condition that has next to no answers. This knowledge has drastically affected my mental health that has been holding on by a thread for so long. I feel so lost. I've lost so much of who I am. I can hardly manage my relationships and my husband just seems so tired of it all too.

I always told myself that if I wasn't thin or pretty, at least I was physically strong. When I lost my strength to this illness, at least I was smart. Now, I struggle with cognitive symptoms and I've lost that too. I don't know how to stay positive anymore.

For those of you who have managed this for a while, how do you do this? Does it get better?

Hi Tiffany Marie,

Welcome - it's lovely to have you here! I'm so sorry that you're going through this, but please know that you're not alone, and most all of us have been exactly where you are, feeling the same way. I'll just jump right in with yes, it can and will get better.

On the one hand, it's true that there is no straightforward treatment. Fibromyalgia changes everything and comes with loss and the need to grieve for the things it takes away from us. But on the other hand, while there is no all-out solution, there are lots of small answers to be discovered that will help you manage your symptoms, and might add up to allow you to reduce them dramatically. I guarantee you that as you adjust to your new reality, you will regain the sense of control that feels so absent right now and find new ways to feel empowered too. I know I've grown a lot through this bumpy ride!

In terms of what you can do, definitely follow sunkacola's advice and check out her pinned post for some great tips. There's tons of great info here in the forum, and looking at recent fibro studies and research can be illuminating. You might feel that you want to explore medications, or you might choose to explore supplements that could help to reduce your symptoms. You can experiment with diet and movement, alternative therapies, and stress/sleep management techniques, as well as (really important!) trying to identify your triggers. A lot of us find that small things that work for us can gradually stack up to a big difference. It's also interesting how many of the things that can help fibro also directly address depression and anxiety. Making yourself into a guinea pig can be frustrating, but finding the edges of your limits and learning how to gradually nudge them is rewarding.

Hopeful7 mentioned dysmorphia above - that, along with depression and anxiety, is something I know really well. I think most of us battle with these kinds of demons, and I can tell you that you are beautiful, inside and out, with an incredible smile! Obviously I cannot know your journey but, for me, coming to terms with fibromyalgia has allowed me to be kinder to myself in other areas in ways that I never had before. I hope you experience that too.

RE your husband, I can only say that I also really struggled with the impact of my health on my partner. I felt like a huge burden, but seeing myself that way was only adding to the strain for us both as we adjusted. Even if you feel awful, you are worthy of love and support, and anyone who doesn't see that truly doesn't deserve you! Perhaps consider sitting down and talking through the reality that this is not going to go away and that you're going to need backup now to learn how to manage it - before re-strategising how to move forwards together.

Sometimes you'll want to look for outside answers, and sometimes just to focus inward on yourself. Take your time, step by step. I wish you so much luck and strength as you get through this - and you will get through this We're here if you need us!

 

[sunkacola]

Sadly, TiffanieMarie has not been back to the forum since the first week of March when she posted this thread.
So, while this is a good thread in terms of giving encouraging information to others, it appears that none of it is actually helping the OP.

Continuing this thread is of course perfectly fine, but it also might be a good idea to start a new thread.

 

[Jemima]

Thanks sunkacola, I totally missed the date!

 

[Dusty1957]

Sorry I have not been on here in awhile. Doctors, doctors and more doctors of all kinds, them Home Health. In the end, all of them could not help me except one older doctor and the hospital system transferred him to a small town and he quit. I am realizing I get more help here. I have other health issues, so all of them together gets me down. The doctor (an older one) recognized the Fibromyalgia, but he is gone now. My 1st primary gave me too much medicine that interacted with each other and it put me in the hospital twice---1st time I had seizures, scared me to death. Now I have learned to search all medicines myself, because I have lost trust. Health care in this country has become a business, a corporation. I am however going to another healthcare system for other problems. I am tired of dragging my right leg around and not walking. Now, the Fibro has done so much damage to me because even though I eat healthy, I can't walk. I actually went 4 solid months with chronic pain and no doctor would help with proper care. Good news is that it does not take me 2 hours to be able to get up in the morning to get my coffee, but just 1 hour now. So patience and baby steps. My comfort is that I have a beautiful relationship with God. He is the only one that has helped me. I have gotten more answers from the Holy Spirit in what I should do and when I stopped trying to figure things out and shut up and LISTEN, the answers do come.

 

[Jemima]

I am realizing I get more help here. I have other health issues, so all of them together gets me down. The doctor (an older one) recognized the Fibromyalgia, but he is gone now.

Hi Dusty,
I also lost an amazing doctor at a crucial point - it's so demoralizing when this kind of thing happens. I'm so sorry you're having such a battle, but I'm glad you're making some progress and finding comfort in your faith. I hope your journey continues upwards

 

[sunkacola]

Dusty, if you have gone from taking 2 hours to get u p in the morning to 1 hour, that is amazing, and is huge progress. It shows that you are on the right track, and you should really be proud of yourself for this. I know it's slow at times, but as long as things are improving you know that you are doing the right things. Health care in this country is shameful and terrible. But even with a good health care system a lot of the work would still fall to us because with fibro there's no one thing that works for everyone and we have to do the experimenting ourselves. Hang in there. and give yourself a lot of credit for the good things you are doing for yourself.

 

[Hopeful7]

Hi there,
I don’t mind you asking at all. It did make life very difficult. Back then, not many people even knew about fibro, so most of the doctors my Mother took me to thought it was all in my head. This added to my childhood depression and made me wonder if they were right. I didn’t do any sports and was extremely shy, so school was a nightmare. I do think I had bipolar back then, but that’s a whole other can of worms! I went to a pain specialist who implied my Dad was a child molester because he would rub my sore shoulders for me sometimes. It was all very traumatic. My first psychiatrist assured me that the pain was not in my head, finally, when I was 18.
I wish you the best and thank you for asking!
Courage. And respect!
xo

 

[Hopeful7]

Hi there, Ariel!
I don’t mind you asking at all. It did make life very difficult. Back then, not many people even knew about fibro, so most of the doctors my Mother took me to thought it was all in my head. This added to my childhood depression and made me wonder if they were right. I didn’t do any sports and was extremely shy, so school was a nightmare. I do think I had bipolar back then, but that’s a whole other can of worms! I went to a pain specialist who implied my Dad was a child molester because he would rub my sore shoulders for me sometimes. It was all very traumatic. My first psychiatrist assured me that the pain was not in my head, finally, when I was 18.
I wish you the best and thank you for asking!
Courage. And respect!
xo

 

[Hopeful7]

Hi there,
I don’t mind you asking at all. It did make life very difficult. Back then, not many people even knew about fibro, so most of the doctors my Mother took me to thought it was all in my head. This added to my childhood depression and made me wonder if they were right. I didn’t do any sports and was extremely shy, so school was a nightmare. I do think I had bipolar back then, but that’s a whole other can of worms! I went to a pain specialist who implied my Dad was a child molester because he would rub my sore shoulders for me sometimes. It was all very traumatic. My first psychiatrist assured me that the pain was not in my head, finally, when I was 18.
I wish you the best and thank you for asking!
Courage. And respect!
xo

 

[Auriel]

Aw, thankyou, it wasn’t so long ago I messaged a forum member telling them my first experience of going to hospital with fibro pain (I thought I had bone cancer!)he told me it was in my head too.you ever thought about writing a book about it all ? I’d consider it,anyway take care.x x x

 

[Texas21]

Hi, I am new to the forum and FM is a new diagnosis for me. I had a hip replacement 18 months ago, but had a femur fracture shortly after and I've been struggling ever since. I am working on adjusting my activities to level out my fatigue and brain fog. If I have a good day and do too much I am laid out the next day or few! But it is just trial and error for now. I had to give up any heavy physical work, like my garden, but I can plant in pots. I feel lucky that I took an early retirement and can structure my day to fit my energy/fatigue. On good days I have my art or sewing, on bad days its a lot, and I mean a lot, of passive TV time. I want to make plans but feel like such a flake when I have to cancel at the last moment because I don't have what it takes to get in the car and drive. The worst time of the day is the morning, I seem better as the day goes on. I also find I feel a bit queasy, but have no real trouble eating. Anyone else experience this?

 

[Jemima]

The worst time of the day is the morning, I seem better as the day goes on. I also find I feel a bit queasy, but have no real trouble eating. Anyone else experience this?

I only had nausea like this when I was on medication, and haven't since. That said, I'm pretty sure there are people here who've discussed experiencing unexplained nausea all the time. Perhaps consider if it could be a side effect of your meds, or if something in your diet may be impacting you. Of course, it could also be stress! I hope it gets easier for you with time.

Welcome to the forum, and well done on taking a trial and error approach - it seems to be the best way to navigate this thing!

 

[Edit]

Hello everybody!
I am watching and reading the forum , I am relatively new, I have my diagnosis since last march. My symptoms practically the joint and back pain so bad I was subscribed for a morphine patch. it is help but when I am very stressed my pain is so bad I have really bad thought, maybe everybody better off without me. I will see the pshichiatrist soon, because I am getting lower every day. I am happily married since 43 years but sometimes my depression make my dear HB sad. I had cancer when I was 39, one year later my son committed suicide. after that my life never was the same again. I am getting so tired, the only thing keep me on this earth my beloved animals (I have 6 cats and a dog and horses) maybe they need my love, and they miss me if I just leave the life. I lost my dear relative from Covid last december, and now my 3 cousin fighting about the heritance . this situation make me so misereable I don't know what to do. sorry my story is too long just I taught I will share my symptoms with you guys, because I noticed the grief and the stress is make the symptoms nearly unbearable. Sorry I make lot of mistake but me English is the second language and I never learned properly in school the English.
I had one good experience. Two days ago I went a first time for a Thai massage and it was so amazing and relaxing. What I want you to ask, how can I learn meditation, and is it true, meditation is helping make the pain much less not that intense?
Have a nice weekend everybody!