On heathline there was an article on how to tell ppl what fibro is like.
I sent it to all my church family friends.
I say on thee worst days in bed moaning it's like cancer without being terminal.
I literally have to take 1 day at a time.
I was in 3 to 4 pain out of 10, for the last few days, a first in a long time and today I'm freezing and in bed exhausted with heat up to 75 degrees.
I have a brain fog, I cant concentrate or speak what i want to say...

Now i have rheumatoid arthritis so hands and feet hurt...its a journey no one should go on.

I was diagnosed last fall but I'm sure that i've had it for decadesnow that all the symptoms are put together.

I tell ppl when I look good im calling it until I make it.
I have enough energy to go to church, maybe lunch but if no lunch im headed home to bed.

Ho.e long have you had it? Are you on pain meds at all? Are you still working?
Stress is a big factor or was when I was working.

Im praying that you are able to do just what you can do. Don't let anyone tell you to push yourself. You just can't do that anymore.
Hugs

I tell people the truth if they ask. Some will be supportive, some will always try to offer "fixes" some will think I'm totally crazy. I just try to be gracious to them and their own ways of "dealing with me" the same way I always hope that they will be gracious and understanding of me. But if I'm having a really bad day and they happen to ask I don't put on a mask, I don't pretend to be what I'm not and I'm sure a few of them always walk away wishing they had not asked how I was. LOL! On days that I'm not too bad but also not at my best I do try to fake it until I make it. At some point it almost always works and on good days I try to remind myself not to get too excited or over do it so I don't have a really bad day the next. I just thank God every single day no matter what that He has given me another day.

Well I have had chronic pain my entire life, mostly my back, but I just pushed harder and harder. 3.5 years ago my body failed me. 1.5 years ago I found a Dr who could help me. Stress is my biggest trigger and is why I am in this boat we believe. I always pushed myself extremely hard physically. Family history of autoimmune issues. Additional mental stress...all created a perfect storm. I went from being on the verge to quitting my job or asking for sick leave but was too proud to ask. I didnt want ppl judging or feeling sorry. TheN immunotherapy changed my life. Until 2 montgs ago. Now its everything i can do to make it through the day especially with an energetic smile.

I have gotten better about telling ppl I have an autoimmune issue but they just don't seem to believe me. Or care. Idk.
I guess its easy to question when they dont understand the roller coaster we all ride with flares, so one day I am energetic, mobile, and fluid. The next, I decline every social outting and flee for my bed and can barely get out of chairs at work.

I respect you all so much for enduring not only the pain but the people.

I just told my boss about my diagnosis yesterday and she was surprised. I think it was because I have managed to get all my work done with the same degree of proficiency as I always have.

Of course she's not with me when I am at home writhing in pain, awake at night because I can't sleep, or falling asleep at 5 PM because I'm too tired to do anything.

If it's not visible, people don't understand.

Exactly. It sounds like she handled it well tho? I think its good you told your boss. It makes it easier to respect your limits not feeling you have to push yourself and pretend. Its super hard to do that. Good job

I usually put on a front like I'm OK and try to blend in with everyone around me. But if the topic comes up, I'm often vague and try not to be direct about it.... most of the time I just blame it on my military service and say I got out with chronic pain. Most people leave it alone after that and then the conversation shifts to them wanting to know what branch did I serve in, what did I do, etc., instead of asking about my pain.

Otherwise, I try and feel the person out. If they look like they would understand, I might tell them. For example, a lady in our church has MS and was talking to me about her situation so I revealed to her that I have fibromyalgia. Sometimes I feel I have to tell people *something* because they ask me to join them on some rigorous outing like hiking, running, etc. Like the lady with MS who shockingly invited me out to go paddling (canoe club) with her early in the morning and after she told me about her MS, I thought i should tell her why I can't be up early, do rigorous activities, etc. Then she was like "Ooohhhhh" and told me that someone in her family has it so she understands.

That is great you found someone from your church who supports you with no questions asked. I am happy for you

The sad truth is that most people just don't want to hear about our suffering and those few who do can't handle hearing too much of it. It hurts because we need support and compassion. It's very important to help us cope and also needed for our healing. That's why we're here on this support group. We all understand what it's like to suffer with continual chronic illness and we genuinely care about each other.
So we have to be careful who we reveal our feelings to and we have to lower our expectations of people so we don't get hurt so much. We can't expect most people to understand, especially those in healthy strong bodies.
I'm here for you along with many others. I understand and I care that you are struggling so much. It's a hard journey but we have to still count our blessings, no matter how small and never lose hope. I'm crashed in bed at present with severe fatigue. Sending love to you my friend xo

Aussiedi- I am sorry for my very long awaited reply. I haven't been on in months. How have you been feeling? Recovered some from that low energy spell? I hope!