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To friends, family, loved ones of Fibro/CFS survivors
8 Replies
piper30 - March 12

I noticed in another thread someone mentioning it was sad no one had posted that was a family member or friend....I wonder how many even know about sites such as this?

I had an idea, that happens sometimes ..not often :o) I have Fibromyalgia, as well as Arthritis. I know it can be difficult understanding an illness when it comes to someone you care about, especially when you can't see it. I have family who suffer from illness and despite having Fibro it is hard even for me to understand sometimes.

So, my idea is this .. simple enough. I suppose not an idea as much as an offer. To any family member, friend, loved one who has questions, wants to vent, learn, help but doesn't want to approach the Fibro survivor in their lives or may not know how ...I do not mind you asking me. I am not a very private person when it comes to Fibro no question is off limits. I may not have all the answers, I am certain I don't. I do promise to be honest though, no matter what. I will not preach to you, or tell you how to live. Simple answer any questions you might want to know from someone who has it.

For myself, and my family you would think we would be experts. My sister having Lupus, my Fibro, my mother RA. Everyday is a learning process, learning made much harder when your dealing with symptoms as well. It is just as frustrating to us as it is to you.

I promise, when the thought crosses your mind that we look well, or just yesterday you saw us up and moving around come we can't get out of bed today? I promise, the frustration, confusion, even anger and helplessness you feel...we feel the same. When I wake up and I know just getting out of bed is going to be an hour process, I am angry, frustrated, often I ask myself why today? Why now?

That is normal, nothing wrong feeling like that long as you feel it, accepted it, and move on. Best wishes, to you survivors and those that love them. Looking forward to you brave souls who reply :-)


Jocelyn - March 24


You did an awesome job with this post! I hope many people with Fibro and people who live with these people have read this post. I have Fibro and it has taken a long time to get it across to people that I look good, but may not always be good. I guess, it will be an ongoing process of teaching people around me that I might not just be able to do some things on one day and other things on another day. Whew! Wish us all luck!

Again, great post!


bluesbrrd - April 7

"I promise, when the thought crosses your mind that we look well, or just yesterday you saw us up and moving around come we can't get out of bed today? I promise, the frustration, confusion, even anger and helplessness you feel...we feel the same. When I wake up and I know just getting out of bed is going to be an hour process, I am angry, frustrated, often I ask myself why today? Why now?"

I couldn't have said it better myself! Nobody in my family asks me about it. I think they just want to pretend it isn't there. Are your other 2 family members who are also ill more understanding of your own FM? Your family has been hard hit - that's really awful! But I feel like you do, I want people to know and understand this disease and what it does to you. But most people either don't ask, or ignore you when you do bring it up. i have learned long ago to be one of those people who pretends that I'm fine around others, because I myself do not want to hear constant whining and complaining. I live alone and have no family within 250 miles of my town, and that gets really hard, because I can't travel at all. People have no clue how hard that is. I am used to it, but it can be stressful having no support system, like when you've taken the cab to get to your massage therapist, and they cancel the call when you're trying to get home. After an hour waiting I can barely sit up straight anymore.

I have had a bad couple of days. I couldn't get my driver's license renewed in time, my car was in the shop for 3 months, and the registration expired. One night I said I have to get groceries, and I am too tired to deal with worrying whether or not the damn cab is going to show up! Of course I got pulled over immediately and got 2 tickets for a total of almost $400! I don't want points on my license, I've never had anything more than a traffic ticket my whole life! The last 2 days I have been very upset about going to court next week, partly because I don't feel like physically I'll be able to hold up through it! It really makes me feel like things are out of control and I could use some help, but I don't know who can help me! If I can't go, then what happens? I can't even state my case! But it is way to stressfull for me to be able to go through it without mentally becoming a crying mess. I feel like I am being persecuted and punished because I have such real difficulty trying to follow through on anything more than just maintaining on a day-to-day basis. I have not been this stressed out for a while. I looked up info on my state disabilities board because I can't hang out in the wind like this anymore, but I doubt it will be of help in time for this. I have a good rheumatologist, a good massage therapist, and a chronic pain therapist. But no one seems to be able to help me just with these kinds of things and I get so frustrated!


Jocelyn - April 9

What an awful thing to happen. Things aren't bad enough. Perhaps you can get some medical documents from your doctor explaining everything you have, and when you go to court you can submit them as the reason you ended up in this situation. Cabs cancel, Cabs are late, you are in pain and you just had to get some food etc. Maybe, just maybe there will be a sympathetic judge or maybe the judge will know someone else in your situation. The financial burned is terrible when you are sick etc. Promise the judge you won't do it again, but will call for assistance from whomever the judge deems appropriate to help you. This is a health problem and your state is not giving you what you need.

Let me know how you make out. But, try to explain what is going on, and if all else fails, I guess you will have to pay. How unfortunate that is since they can't collect from all the other people that owe.


bluesbrrd - April 10

Thanks for responding, Jocelyn - I wasn't sure how frequently people checked this board! I made about 47 calls today to try to find out what I can do. It's not paying the fine that bothers me as much as possibly having some points or something bad on my record. I did something stupid, but I did it out of necessity! It's not like I'm a drunk driver or was speeding or something. I'm a safe driver, and I wasn't hurting anyone. I was told I could call and speak with the police officer, which I will try to do tomorrow. Cabs canceling are the worst! They do it a lot, and it's enough to make you scream. I tell them I can't have them get me somewhere only to be stranded with no way home!! It's tourist season here the last 2 weeks, so I don't even want to bother.

I switched to a closer pharmacy this week, within walking distance so I wouldn't be completely dependant on my vehicle or the cabs. Seemed like a good idea at the time! Unfortunately when I went today, they wouldn't refilll my methodone without my driver's license!! At my other pharmacy they didn't make a big deal out of it. I didn't want to risk driving that far, but I'm darned if I do and darned if I don't. I'll really be in trouble if I can't get my Ambien filled - they might as well shoot me!

I can deal with pain, but I can't deal with no sleep. They would have filled it if someone else could vouch for me with their license, but I don't have anyone to do that! I am going to try to see if I can get someone to go to court with me. The last time I was in court, 20 years ago, it was because my boyfriend hit me, so to me court= PANIC ATTACK! I start crying and shaking every time I think about it. It brings the feeling back like it was yesterday.

I will survive this week, I know, but I don't have to like it!! I had a perfectly valid driver's license for 20 years in VA, and they wouldn't renew it here! Do I look like an illegal immigrant????

I told the pharmacist, who did look sympathetic, that it's the fault of the Republicans trying to disenfranchise the poor and black voters in this state by requiring them to have picture id's! It's true!

When they tell me, everybody else can do it, so why can't you, I am going to have a problem!! Oh, well!!


bluesbrrd - April 10

Piper - I must comment seeing the time stamp of your post: 2:40 AM!!

That says it all, right there! It seems I have not been asleep till at least 2 am or later for the last week. And it's not because I ain't tired!!!

; )


piper30 - April 10

lol right now I am in withdrawals from pain killers ..Dr switched to a different one but have to suffer the hell first of stopping the first one. Hell doesn't even describe it .. solve your med DL problem..can you get an ID? For right now, just for med purposes?


piper30 - April 10

I spoke to a friend in VA, they said to call your local disability office. Tell them what honest, admit yes, you knew you shouldn't drive but you are also aware that missing your medications could for you be fatal. So it was indeed a life or death matter.

If you haven't done defensive driving before offer to do that (when you speak to court if it goes that far) offer and ask if you can complete online as obviously getting there is an issue.

Make a list of when you need transportation...IE going to get food, going to get meds, Dr appointments. Show on the list that your driving needs are not joy riding for fun, it is for needs. You might be given a sort of restricted license ...that is worst case ..

I was told disability should be able to help you quite a bit, just be upfront and ask for help. Keep me posted.


bluesbrrd - April 10

Thanks, piper! Withdrawals are so much fun, aren't they? Been through it so many times I can hardly tell the diff anymore! With methodone it's not as bad. Last time I had mine was Saturday - went to get it, but couldn't without valid ID, I have my DL but it's expired, and I need a birth certificate to renew it. Never needed that before in 20 years!

I am calling the local disability people today to explain my situation - I have to be able to get help from someone because I can't do it all myself. Sure hope there's a good samaritan out there who will help me!



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