Friends with fibromyalgia
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Hello fellow fibromyalgians. Is that a word? lol I was diagnosed with fibro in 1995 not long after my 4th (and last) baby was born and was told that I probably had it for at least 5 years or more. My 2nd baby, my only girl, was born in 1988 with multiple, severe CHD (congenital heart defects). She underwent 5 heart surgeries (and had 2 strokes leading to temporary blindness and paralysis as well as many other complications to these and other surgeries) all by the time she was 7 yrs old. We found out that she would not survive her CHD and wasn't expected to survive childhood. She passed away one year ago at the age of 22. YES! We beat the odds! Unfortunately during all that time I pushed myself soooo much just caring for her. She was in a wheelchair and on oxygen for 17 of those years and as her CHD progresses she also developed GI issues which caused a lot of pain. I would stay up with her most of the night and then catch sleep as I could get it. I thought that now that I don't have the physical strain on my body of caring for her I thought that my health would improve but it hasn't. My fatigue and pain is really high even on all the meds I'm taking.
I just found this site and am tracking my food and I've started walking almost daily. I still have two teenagers at home who need me... especially my youngest son who has arthritis in his spine and is borderline fibromyalgic. I take him to his appointments including therapy. I've been so tempted to do the aqua therapy in the warm pool... it really looks like it would help as it helps my son... but we just can't afford for us both to go. In fact, I've cut back on his therapy appointments due to the copays adding up.
There is a therapeutic pool in town and I need to just get on the ball and take my son and both of us go in. We can't take any classes right now but there is "free swim" time. I just need to make myself do it - - - and make HIM go with me. Sometimes having to fight him to do his exercises or go for walks with me take a lot out of me. ugh -TEENAGERS! haha - I love my kids. No doubt about it!
So... if you read this far.... do any of you have ideas on how to get motivated to exercise? I'm doing ok as far as eating goes... but I do crave sweets in the evening. Oh yeah, can't forget that I LOVE my diet Coke! (which my new doctor really frowns upon). By the way, I have at least 60 lbs to lose. ugh! It's going to be a long road but I know I'll feel better once I lose it.
Any advice or suggestions would be great! And don't worry, even though I've had a hard time emotionally and the loss of a child is a tender subject... it's ok to say HI! I'm a very friendly, compassionate person. I look forward to meeting you and reading how you all cope with fibro.0 -
I don't have fibro but a really good friend of my mom works with people that do and has had great success in helping them. I don't know all of the ins and outs but if you'd like to contact her, message me and I'll give you her info.0
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Yes! I'm trying to break away from that.Has anyone found out that they crave sugar with this disorder?
Crystal0 -
yeah, sugar definitely makes my pain worse. So does gluten ( I'd love to see if they could find a connection between gluten sensitivity and fibro.) I found that increased protein helps.Good morning everyone, it is nice to see the new people on here. I have just found this thread a couple of days ago. With fibro, unfortunately comes Chronic Fatigue Syndrome, depression, anxiety, night sweats, sugar cravings, joint pain, you name it. I am currently trying to get my disability, I got tired of not having a life outside work, I was on my feet a lot and when I got home I would not be worth anything else. I found that caffeine would work for a while but the doctor told me it really makes fibro worse. I believe that because when I lay off the sugar and caffeine I feel tons better.
I know exercise is the hard part, but if I just get a short walk in a day, I feel better.
Good luck to everyone and lets support each other. We can do this, just one day at a time. Sometimes one minute at a time!!
Crystal0 -
I too have fibromyalgia, I was diagnosed in 1998. I also have excess uric acid crystals in my joints, which causes a lot of pain, and as if that's not enough I have sleep apneoa! My weight loss journey will hopefully alleviate some of the symptoms.
I do have gym membership, but i find it a lot better on my poor old joints to do aqua aerobics and swimming rather than going into the actual gym.
If I go into the gym I always come out in some discomfort, usually in my knees or arms, but I find that the water exercise works my whole body overall, and when I do a calorie consumption comparison I've actually used more calories in the water.
A little exercise is better than no exercise at all, that's my motto now!
I've been told by several doctors that aqua therapy and doing exercises on the pool is the best thing for arthritis and fibromyalgia. I have both osteoarthritis and fibromyalgia and have seen several different doctors over the years and all have confirmed it. I am looking into going to an indoor pool through our parks & rec program. There is one in our city ... but only one and it's about a 20-25 minute drive. My youngest son has recently been diagnosed with arthritis in his lower back and borderline fibromyalgia. He has done some aqua therapy and it has helped... but the co-pays are piling up... so I think we're better off if I take him with me to the pool I just mentioned and that way it would be cheaper and we'd both get some relief. In the meantime we're walking every day and tracking our food here.
You are right about a little exercise is better than no exercise at all. I recently saw a poster-type thing making the rounds on facebook and I've decided that it's my mantra. It goes: "NO MATTER HOW SLOW YOU GO - YOU'RE STILL LAPPING THE ONES ON THE COUCH." hehehe! For some reason that made me laugh AND GOT ME OFF THE COUCH! LOL Ok, I was sitting at my desk but it helped me to commit to walking every day unless I'm in extreme pain. Even if I just walk out to the mailbox and just a little further, I'm still lapping those who are sitting on the couch.
Hope you feel better soon. Feel free to add me as a friend.
((hugs))0 -
Hi everyone, I too suffer fro FM and the fatigue is my worst nightmare. The pain is constant and so comes the depression and motivation well that just becomes a word. I was doing pretty well with my weight but broke my heel in January which left me unable to walk for months so the weight gain began. I'm back on my feet now (walking like a duck according to my son ) and I am going to try really hard and this site does help because the encouragement is always there for you. So let's all do our best to support each other and remember, only do what you can ,as a little is a lot more than none . I also have heart disease and need to watch my exercise and diet because of this. Oh the joys . A little life is better than none lol
LET'S GET FIT! (slowly )
Welcome to mfp. I also really suffer from pain, fatigue and depression. I changed doctors this past week and we are going to try a few different things with meds, only changing one thing at a time so we know if I have an adverse reaction we'll know which medication caused it. It's too bad that you broke your heel OWIE!!! I'm sure it was hard to be unable to exercise for that long.
I'm curious about your heart disease. My daughter had complex CHD (congenital heart defects) and I learned a lot about many different CHDs over the years. I'm used to the life of practically constant doctor's visits, hospitalizations, heart surgeries, having to watch for symptoms of arrhythmia and CHF (congestive heart failure) which my daughter fought her whole life. I'd like to hear your story about that. My daughter had a hard time gaining weight until she hit puberty. She started putting on weight which was awesome... until she started gaining too much. She definitely didn't need to carry extra weight so we had to really watch that.
Hang in there! Together we can do it! ((hugs))0 -
What do you do on those bad days to get you going? I have work to do
but all I wanna do is stay in bed. 0 -
What do you do on those bad days to get you going? I have work to do but all I wanna do is stay in bed.
Most of the time I listen to my body and stay in bed.:ohwell: Then on my good days I get what I need to get done!
Crystal0 -
At any rate... it's good to know we're not alone, isn't it? Not that I wish anyone misery... just saying.... um... I like the company?
I like to company too 0 -
Hi folks!!
Any of you still about??
I have (self- diagnosed) Fibromyalgia, I was given a diagnosis of CFS by my family doctor about 4 years ago, but the pain and other symptoms have gotten so much worse since then (especially over the last 6 months, or so)
Would be great to have other friends on here with Fibro!! I'm a member of a FMA support group here in the real world, but not quite the same as having people on here who are also trying to lose weight! Plus we only meet once a month and I would like more regular contact than that!
So, feel free to add me as a friend, though please give a message when making your friend invitation, to say why you're contacting me? thanks!
lots of gentle hugs
Ales x0 -
Hi Ales
I have fibro and C.F.S as well as other stuff. Feel free to friend me if you like.0 -
Bumping this up for you Ales to see if you get some more replies. You know you always have me too !! Anyone out there feel free to add me as a friend as I´ve had this for about 10 to 12 years now, it took an age to diagnose and was a relief to finally know what was going on.
Luckily apart from a relapse last year I am doing really well, provided that I keep exercising, sleep well and cut out the crap from my diet. Now over the festivities I´ve felt pretty rough all because I´ve eaten and drank all of the wrong things. But I´m back on track and started exercising harder again so fingers crossed. I´m very lucky to live in a warm climate too, that certainly helps.0 -
Hi everyone!! I have Fibro and some days it has me. please add me as your friend. Thanks! Robin 0
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Hi everyone. I have been dx with fibro and CFS for three years now. The thing that I have found to help the most is to not eat anything with preservatives in it. My rule of thumb is if I can't pronounce what is on the label or if it has more than 5 ingredients I don't eat it. Also I move around alot. I don't work out in a gym or anything, but I stay active as much as I can, even on bad days. It seems that when I hurt the worst doing simple streches help the pain. Sitting in one spot or laying in bed only causes me to get stiff. So no matter how much it hurts to move, I force my body to do so. In the end I am grateful for the short term bad pain, because it gives me some relief on the longterm pain of the day. When I am feeling good I do things like clean where I have to strech and bend. My husband says we have the cleanest house there is. lol.
The one problem that I have been have recently that I don't understand is that my eyes have been affected. Some days like today I can see great, others I cannot focus on anything in front of me. When I try to look around on bad days I get horrible headaches. If I take my pain meds though I am able to see better. It is really weird and annoying. I wish it would go away. Do any of you have this problem? I am going to a specialist next week to see if they have any ideas as to why this is happening.
Anyways,
I am glad I found all of you.0 -
I've been having dry eye problems! Weird!Hi everyone. I have been dx with fibro and CFS for three years now. The thing that I have found to help the most is to not eat anything with preservatives in it. My rule of thumb is if I can't pronounce what is on the label or if it has more than 5 ingredients I don't eat it. Also I move around alot. I don't work out in a gym or anything, but I stay active as much as I can, even on bad days. It seems that when I hurt the worst doing simple streches help the pain. Sitting in one spot or laying in bed only causes me to get stiff. So no matter how much it hurts to move, I force my body to do so. In the end I am grateful for the short term bad pain, because it gives me some relief on the longterm pain of the day. When I am feeling good I do things like clean where I have to strech and bend. My husband says we have the cleanest house there is. lol.
The one problem that I have been have recently that I don't understand is that my eyes have been affected. Some days like today I can see great, others I cannot focus on anything in front of me. When I try to look around on bad days I get horrible headaches. If I take my pain meds though I am able to see better. It is really weird and annoying. I wish it would go away. Do any of you have this problem? I am going to a specialist next week to see if they have any ideas as to why this is happening.
Anyways,
I am glad I found all of you.0 -
I was diagnosed with fibromyalgia in June 2010 and had to quit teaching. My doctor told me I had had it for quite awhile - about 6 years. I applied for disability and was approved in 2 months. There are days that I spend in bed and days where I feel almost normal. Pain is a constant, some days less, some days intense. I have been using a CPAP since 2009, which helps me rest at night, but fatigue is still a problem. And so on and so on...everyone with fibro can pretty much repeat the list!
"Some days like today I can see great, others I cannot focus on anything in front of me. When I try to look around on bad days I get horrible headaches. If I take my pain meds though I am able to see better. It is really weird and annoying."
Yes, I have problems with eye strain and headaches. My optometrist and my doctor both say there is nothing wrong, so why does this continue to plague me? Pain meds and laying down in a dark room has been helpful, but hasn't solved the problem.
I just try to be upbeat and do what I can. On the days when I feel pretty good, I try to catch up on the cleaning that I neglect when I feel bad. What an awful thing to look forward to - a chance to clean house!! LOL!
And I do have a sugar craving! I thought it was just me!0 -
There's a group for those of us with Fibromyalgia here! I just joined. Check it out!0
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Bumping this up for you Ales to see if you get some more replies. You know you always have me too !! Anyone out there feel free to add me as a friend as I´ve had this for about 10 to 12 years now, it took an age to diagnose and was a relief to finally know what was going on.
Luckily apart from a relapse last year I am doing really well, provided that I keep exercising, sleep well and cut out the crap from my diet. Now over the festivities I´ve felt pretty rough all because I´ve eaten and drank all of the wrong things. But I´m back on track and started exercising harder again so fingers crossed. I´m very lucky to live in a warm climate too, that certainly helps.
of course I know sweetie you're a great support to me 
xxx
:flowerforyou:
Wish I lived in your climate too! I'm sure my aches would be chased away xx 0 -
Hi everyone. I have been dx with fibro and CFS for three years now. The thing that I have found to help the most is to not eat anything with preservatives in it. My rule of thumb is if I can't pronounce what is on the label or if it has more than 5 ingredients I don't eat it. Also I move around alot. I don't work out in a gym or anything, but I stay active as much as I can, even on bad days. It seems that when I hurt the worst doing simple streches help the pain. Sitting in one spot or laying in bed only causes me to get stiff. So no matter how much it hurts to move, I force my body to do so. In the end I am grateful for the short term bad pain, because it gives me some relief on the longterm pain of the day. When I am feeling good I do things like clean where I have to strech and bend. My husband says we have the cleanest house there is. lol.
The one problem that I have been have recently that I don't understand is that my eyes have been affected. Some days like today I can see great, others I cannot focus on anything in front of me. When I try to look around on bad days I get horrible headaches. If I take my pain meds though I am able to see better. It is really weird and annoying. I wish it would go away. Do any of you have this problem? I am going to a specialist next week to see if they have any ideas as to why this is happening.
Anyways,
I am glad I found all of you.
Hi there Dawn!
I'm starting to force myself into things again too, now the holidays are overI always feel the winter is gonna be over soon and that gives me a lot of hope!
I'm gonna get a grip of my flat/ apartment this year for sure! 15 mins at a time with FlyLady! I'll get it done!
Will add you as a friend too!
x0 -
I have been battling fibro for about 5 years. I am always looking for new treatments, meds. Does anyone know the name of the Fibro group on here? Thanks, and good luck to al of you. Red0
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