People here who suffer from fibromyalgia

[NewYorkCity 10,462]

Hi, I have read in a few threads different people who say they are suffering fibromyalgia and that they understand Gaga's pain etc. 

First of all, thank you for sharing your stories with us. 

I would like to ask, since there is not a lot of research on this, if that pain is something that happens every day, or just comes one day and then leaves for 3 months, or maybe you have it one day and you can handle it but then next day it is too much (like, it changes the intensity), if you can control those increases of pain somehow..

In short, if this is something that could lead to Gaga being in huge pain for months, or it is something that they can control and help her to feel better in a few days. 

Also any extra info about the disease would be great so we can know more about it! 

If you don't suffer from it but you know about someone, study medicine, or you have read reliable articles about it please post too! 

Thanks again 

[LUO YI 6,089]

I'm interested on reading  this thread 

[Rifek 49,369]

3 minutes ago, Graffiti Heart said:

I'm interested on reading  this thread 

same 

[GypsyBabe 22,836]

Everyones experience is different. Mine flares with no pattern whatsoever. I have days that are awful, and then feel good for a week and vice versa. But fibromyalgia tends to accompany another illness or illnesses. For me it is rheumatoid arthritis and sjogrens syndrome. So its hard for me to discern what is causing the issues that I have sometimes. 

It's just really unpredictable, but it most definitely gets way worse when I am experiencing stress, push my body too hard, or am not getting enough rest. 

Though I have to say, the fibromyalgia pain is worse than my autoimmune diseases in terms of pain. So yes, Gaga could be in pain for months, or she could feel better in a week or so. It just depends on how it cycles and flares for her personally. 

Emotionally it is no fun. You never know when you wake up if you are going to have a day of pain or not. I tend to get extremely cold too. 

If you have any questions, feel free to ask. I'm not an expert, but I can tell you how I feel personally. 

[NewYorkCity 10,462]

3 minutes ago, GypsyBabe said:

Everyones experience is different. Mine flares with no pattern whatsoever. I have days that are awful, and then feel good for a week and vice versa. But fibromyalgia tends to accompany another illness or illnesses. For me it is rheumatoid arthritis and sjogrens syndrome. So its hard for me to discern what is causing the issues that I have sometimes. 

It's just really unpredictable, but it most definitely gets way worse when I am experiencing stress, push my body too hard, or am not getting enough rest. 

Though I have to say, the fibromyalgia pain is worse than my autoimmune diseases in terms of pain. So yes, Gaga could be in pain for months, or she could feel better in a week or so. It just depends on how it cycles and flares for her personally. 

Emotionally it is no fun. You never know when you wake up if you are going to have a day of pain or not. I tend to get extremely cold too. 

If you have any questions, feel free to ask. I'm not an expert, but I can tell you how I feel personally. 

Thank you for the response. It must be very hard, I had never heard about this disease before tbh... but looks like something very complicated to do medical research since symptoms variate so much from one patient to another... When you are feeling a lot of pain, is there anything (medicines, therapy, yoga) you can take to make it better?? Or you just have to let it happen? 

[Jenina 14,350]

My situation is pretty similar to what @GypsyBabe wrote. Mine is accompanied with rheumatoid arthritis and hypermobility so it is a bit difficult to tell which issue is causing me the pain. 

The pain for me is there basically everyday but some days are much easier than others. A lot of days I'll be able to do things normally like I used to but other days I can barely walk to the bathroom. It's different for every person though. My pain is usually worse when I have a lot of stress I find and when the weather is really bad(so when Hurricane Irma hit it was pretty bad). 

Like GypsyBabe I do think my fibro pain is a worse than my ra pain. I personally think it's been harder for me emotionally than physically though. It's really hard to go from being able to do what you love to it being taken away from you and you can barely get up some days. I'm sure it's really difficult for Gaga as well having a hard time being able to do shows like she was previously able to do.

[GypsyBabe 22,836]

1 minute ago, NewYorkCity said:

Thank you for the response. It must be very hard, I had never heard about this disease before tbh... but looks like something very complicated to do medical research since symptoms variate so much from one patient to another... When you are feeling a lot of pain, is there anything (medicines, therapy, yoga) you can take to make it better?? Or you just have to let it happen? 

I use heat and rest. I'm on medication too, which helps a lot. 

Not to gross people out. But as a female, it IS F*CKING TERRIBLE around your period. Like messes it up and you feel like you cant walk. So I try to rest more around that time. 

The newest thing is that my eyelid keeps spasming like crazy. 

[GypsyBabe 22,836]

3 minutes ago, Jenina said:

I personally think it's been harder for me emotionally than physically though. It's really hard to go from being able to do what you love to it being taken away from you and you can barely get up some days. I'm sure it's really difficult for Gaga as well having a hard time being able to do shows like she was previously able to do.

Love you girl 

And I agree with this. The emotional aspect is the hardest. You need rest, but its hard to sleep. Yet the meds make you lethargic on top of what the diseases bring. You never know how you are going to wake up. Quite frankly its depressing. You want to feel healthy and not feel like you cant do things. I refuse to be held down, so I think that makes mine worse. 

I'm very lucky because the medication that I use has really changed my life. Six years ago, before my RA diagnosis, I couldn't make it through a day of classes without having to sleep in my car. Sometimes I was too tired to walk into a store and would have to sleep. I was literally chalky colored and had awful fevers and rashes. I felt like I had bugs under my skin so I was covered in bruises from scratching. I was in and out of the cancer center all the time because my blood was messed up and they had no idea what was wrong with me. 

The fibro diagnosis for me is new. So I don't know how it will really effect my life in the future. But, it seems like Gaga's is extremely debilitating, and I just feel very lucky that mine is manageable at this point. 

 

[ryanripley 86,575]

7 minutes ago, GypsyBabe said:

The newest thing is that my eyelid keeps spasming like crazy. 

sorry i couldn't resist  

[GypsyBabe 22,836]

Just now, ryanripley said:

sorry i couldn't resist  

For real though. Its kind of hilarious. You have to find humor in this sh*t or else its really sad. Its been over a month of it and I can't even deal. I was yelling at my mom today, I was like "I know its just an eyelid and I'm being f*cking dramatic, but its affecting my quality of life!!" 

[GypsyBabe 22,836]

To simplify, for me, Fibromyalgia causes: 

- Extreme pain in my hips

- Extreme pain in my ribs/chest/lungs

- Eyelid spasming ()

- Inability to stay warm. Shivering when its hot out and spending the summer in winter clothes. 

- Insomnia but also fatigue

- Horrible menstrual cycles 

- Tingling and numbness 

- Trouble eating/weight loss

- Body feels like it is badly bruised around certain trigger points (For me it is the inner knees) 

- Feels like its raining on me 

[Sneaky Oliver 20,081]

Hey guys. I hope you're okay. If we can learn something from this whole situation is to keep on spreading love and respect! @GypsyBabe, @Jenina I hope Gaga can inspire you through her bravery to keep going and living her dreams!  

[merlot 5,772]

sending love to everyone who's affected by this disease 

i wish you all health and happiness 

[GypsyBabe 22,836]

1 minute ago, Sneaky Oliver said:

Hey guys. I hope you're okay. If we can learn something from this whole situation is to keep on spreading love and respect! @GypsyBabe, @Jenina I hope Gaga can inspire you through her bravery to keep going and living her dreams!  

I'm feeling a lot of things right now. I feel inspired by Gaga immensely. If she can do concerts, then I can do anything. I feel saddened that she has it to begin with. I feel worried that mine will get as bad as hers someday. I also feel motivated because I tend to not do what is required of me (get adequate rest etc)...this is making me want to address my situation a lot more and take it more seriously. 

[Ada 1,665]

Even after days of processing the information I can't even begin to imagine how I would cope with all of that. For all the people suffering from this, you are so amazing and inspiring  I hope I can learn to be a better person and as strong as you from these shared experiences, thank you