Does anyone on here suffer from Fibromyalgia?

[mmksparbud]

Yah--and stay away from all artificial sweeteners! Even if you're diabetic, those will actually make your blood sugars go higher--only took them 20 years to find out!! I stopped even Splenda, which I thought was ok but it does the same thing. I switched to Stevia, or even reg sugar--believe it or not, Splenda has a higher glycemic index than sugar. I just discovered coconut sugar--anything coconut is good for you, just look it up--and coconut flour is great, esp if you're trying to go gluten free. And you can join patientslikeme.com It's a great research site and the fibro forum has a wealth of info. Hopefully, by the time you reach my age, they will have found how to end this living hell!

 

[1hope]

Other people scoffing at it hurts almost as much as the illness itself.
The way most of my family and neighbors has treated me over it.........
I first got sick, I use to say "If CFS was contagious, I'd move to a deserted island....." but after years of being mocked when I am in pain, I now say, "If CFS was contagious, I'd bite a few people!".........
........Not very Christian, I know.

 

[mmksparbud]

Other people scoffing at it hurts almost as much as the illness itself.
The way most of my family and neighbors has treated me over it.........
I first got sick, I use to say "If CFS was contagious, I'd move to a deserted island....." but after years of being mocked when I am in pain, I now say, "If CFS was contagious, I'd bite a few people!".........
........Not very Christian, I know.

Perfectly understandable. Most of us have family, friends who do not understand--maybe someday they will, but some never will. Their condemnation is very hard to take. They think we're just lazy, wanting attention, whatever. It's even taken dr's a very long time to understand. There is plenty of info about this, esp on the internet--but they do not even take a little time to read up and at least try to understand.
Our faith is what keeps us going. I do not know how anyone can handle this who has no faith--it's way too much. Our nerves get shot and we get irritable very easily--we will loose Christianity at times--sort of--
Like the idiot who was behind me talking to her girlfriend and commenting on perfectly healthy people who park in the handicapped zones, they should be ashamed of themselves. She said it very loudly so I would hear--I'd had a bad night, and was having a bad day and I turned around and snapped "Well, that just goes to show you, you can't judge a book by it's cover, 'cause you don't look stupid!" I should not have said that. It's best to ignore and pray for them. I might have bit her, too!!


BTW---I got a message in the mail that the Fibromyalgia Network is folding. Apparently the woman who started it and was running it, has got worsened nuerological problems and can no longer do it. It was a great site, they reported on all the latest research, they took no money from pharmacutical companies to maintain their unbiased reporting. I'm going to miss them.

Hang in there--God bless.

 

[Colleen1]

Other people scoffing at it hurts almost as much as the illness itself.
The way most of my family and neighbors has treated me over it.........
I first got sick, I use to say "If CFS was contagious, I'd move to a deserted island....." but after years of being mocked when I am in pain, I now say, "If CFS was contagious, I'd bite a few people!".........
........Not very Christian, I know.

I feel for you. Attitudes can be very frustrating and hurtful.

 

[LM1955]

One learns to do what is nessary--I quite coloring my hair, I no longer set it--Wash put gel on it and let it air dry--curls up and I let it be or pull some back--I haven't even cut in 3 years--I just trimmed as little myself. You learn to pace, a little house work, rest, a little laundry , rest, and little--rest----rest--rest!! It's a far cry from the dynamo I used to be!! Cooking gets simpler. Shopping--well, I've now got no choice but to use one of those beastly electric cars--you can get a lot of stuff on line now. Clothing gets looser, softer, more comfortable along with the shoes---not a fashion plate anymore. You learn to say--well, who cares, I'll never see these people again and if I do so what!! Make-up gets simpler and faster.
I had a high IQ ( teacher said, but he wouldn't give out the numbers, didn't want swell heads--just that I was amongst the top 3--ok, I wouldn't have known what the numbers meant anyway. I didn't learn English till I was 9 and by 14-15 I was reading Frued (now there's a nut job!!)--my teen magazine was Psychology today--I was a champion speller. I know can spell very well, sometimes a simple word even, I will stop mid sentence when I'm talking with someone and I can't think of the word thast comes next, it could be a simple one--like apple, my husband has gotten very good at filling in the blanks!

The worst thing so far--I went to the bathroom to pee, I climbed into the tub--fully clothed, with shoes and everything! I'm standing there thinking, well, old girl, I think it's time they take you away!! No idea why I stepped into the tub--get in the shower with my glasses on, try to answer the TV remote instead of the phone--try to change the TV channels with the phone--the list is endless and if you don't have a sense of humor you're in big trouble, 'cause sometimes all you can do is laugh at yourself!!

Ha ha ha ha ha! I can't help but laugh because I've done the same thing at times. My boys still laugh about the time I was peeling potatoes. I hate peeling potatoes because it hurts my finger joints to peel and slice. But this one time I was peeling the potatoes into the trash can, then slicing them into the trash can too instead of into the pot for cooking. It was embarassing to me, but the boys enjoyed it immensely.

 

[mmksparbud]

Ha ha ha ha ha! I can't help but laugh because I've done the same thing at times. My boys still laugh about the time I was peeling potatoes. I hate peeling potatoes because it hurts my finger joints to peel and slice. But this one time I was peeling the potatoes into the trash can, then slicing them into the trash can too instead of into the pot for cooking. It was embarassing to me, but the boys enjoyed it immensely.

Aahh, yes---if nothing else, they want to keep us around as a source of entertainment--no tickets required! My husband looked at me one day (after putting my purse in the freezer) and said--"To think of all the money I wasted on movies and comics--all I had to do was wait for you for the best laughs ever!!"---Thanks, I love you, too. I swear, sometimes I think even the dogs are laughing at me!!

 

[Ellimae]

One learns to do what is nessary--I quite coloring my hair, I no longer set it--Wash put gel on it and let it air dry--curls up and I let it be or pull some back--I haven't even cut in 3 years--I just trimmed as little myself. You learn to pace, a little house work, rest, a little laundry , rest, and little--rest----rest--rest!! It's a far cry from the dynamo I used to be!! Cooking gets simpler. Shopping--well, I've now got no choice but to use one of those beastly electric cars--you can get a lot of stuff on line now. Clothing gets looser, softer, more comfortable along with the shoes---not a fashion plate anymore. You learn to say--well, who cares, I'll never see these people again and if I do so what!! Make-up gets simpler and faster.
I had a high IQ ( teacher said, but he wouldn't give out the numbers, didn't want swell heads--just that I was amongst the top 3--ok, I wouldn't have known what the numbers meant anyway. I didn't learn English till I was 9 and by 14-15 I was reading Frued (now there's a nut job!!)--my teen magazine was Psychology today--I was a champion speller. I know can spell very well, sometimes a simple word even, I will stop mid sentence when I'm talking with someone and I can't think of the word thast comes next, it could be a simple one--like apple, my husband has gotten very good at filling in the blanks!

The worst thing so far--I went to the bathroom to pee, I climbed into the tub--fully clothed, with shoes and everything! I'm standing there thinking, well, old girl, I think it's time they take you away!! No idea why I stepped into the tub--get in the shower with my glasses on, try to answer the TV remote instead of the phone--try to change the TV channels with the phone--the list is endless and if you don't have a sense of humor you're in big trouble, 'cause sometimes all you can do is laugh at yourself!!

wow! I so understand. I have tried to find my cell phone while talking on it. Good thing I have a unique sense of humor. of course if I didnt laugh I'd probably cry. Because of my attitude, my family and friends are able to laugh with me. And as said by others, without our Lord and Savior, Jesus Christ, how would we survive fibro? I know I wouldn't be able to.

 

[1hope]

The worst thing so far--I went to the bathroom to pee, I climbed into the tub--fully clothed, with shoes and everything! I'm standing there thinking, well, old girl, I think it's time they take you away!! No idea why I stepped into the tub--get in the shower with my glasses on, try to answer the TV remote instead of the phone--try to change the TV channels with the phone--the list is endless and if you don't have a sense of humor you're in big trouble, 'cause sometimes all you can do is laugh at yourself!!

That makes me feel better. I think the worst thing I have done is try to bake a cake without any flour and had the habit of scraping the left over from my plat into the clean dish water and throw the plate away.
A couple of times, at bed time, I turned the computer and all the lights off...then forgot to go to bed. I turned my PC back on, sat down and started mindlessly surfing the net. My sleep-aid kicked in about an hour later, I was...maybe I should go to bed, now.

 

[micswife]

I have been diagnosed with lupus and Ra but I'm thinking there's more. For as long as I can remember occasionally my skin will feel like there's needles poking me when anything touches me. I have not been able to move my leg tonight at all without intense pain and the "tingle" or whatever you want to call it. I'm crying and usually do at bedtime I'm so bummed and depressed. I have no idea what is wrong with this skin/muscle issue but I've had enough.

 

[mmksparbud]

I have been diagnosed with lupus and Ra but I'm thinking there's more. For as long as I can remember occasionally my skin will feel like there's needles poking me when anything touches me. I have not been able to move my leg tonight at all without intense pain and the "tingle" or whatever you want to call it. I'm crying and usually do at bedtime I'm so bummed and depressed. I have no idea what is wrong with this skin/muscle issue but I've had enough.

For some people Lyrica, Savella, Levetiracetam has helped with the needles/pins issue--Didn't for me, and the side affects made them not useable for me--I do take the Levetiracetam as the nuerologist said it would help protect me from seizures, which can be brought on by the Trammadol I've taken for years. It is the only pain med that has worked, and kept on working for me. The max dose is 8 50 mg tablets a day, I try to keep it at 5, so that when I have a flair, I can take more and not go over the limit. There are dr's that won't prescribe over 3 tablets a day, they're not in pain.
Have you been diagnosed with fibro? (like you haven't got enough problems to deal with!) Have you been checked for diabetis--that causes the needles/pins, numbness yet painful symptoms. I have diabetic nueropathy
which leaves my feet in agony, and I have to dunk them in cold water about every couple hours (makes sleep very difficult), I also have gel packs I keep in the freezer (I looked up gel cold packs and found them.) They can let me sleep a little longer. Heat used to help, it helps the fibro pain, but it makes the nueropathy pain worse--can't win, sometimes. Sometimes low dose antidepressants can help with the pain, lower dose than for depression. Depression does not cause fibro, we get depressed from being in pain all the time, some dr's have finally figured that out.
All I can suggest is research, research, research. Get yourself informed so these dr's don't walk all over you 'cause they are not informed enough, though things are getting better as more and more research has been done. A good, knowledgeable dr is so important, and you ussually need to see a nuerologist as well, and most often you get sent to a pain management dr.
I'm sorry for the pain you're in--I've battled this for over 22 years and I am sick to death of it. They say it is not progressive, and it won't kill you--but most people it has gotten worse, and though not fatal--there are times you wish it were. I know only too well about crying all night in pain.
One thing I've found that helps with the needles/pins thing is----computer solitaire!! And I can only do one suit, or my brain gets stressed and things get worse! I don't know why that helps, but whatever works!! Prayers and reading the bible help--but it can be hard to read when your brain is screaming in pain, can't think. Different things work for different people, there is no one way of dealing with fibro. God bless, and you can pm me anytime--misery loves company!

 

[micswife]

I've been tested for diabetes and I don't have it thank goodness. I'm on methotrexate, mobic, tramadol, trazadone, zantac, and hydroxyzine. None of which really help. I'm so tired of the pain. I lay in bed pretty much all day on my kindle fire and only get out of the house when I have to. Just getting dressed is too much sometimes. I get so many people telling me that I'm over exaggerating things & that they know others with the same problems as me who have jobs, clean houses, and never complain.......I tell them "I'm happy for them but I'm not them!" Just depressing thinking I'm only 32 & nearly bed ridden.......I get out and ride 4-wheelers with hubby and kids then spend then next week trying to get back from the pain. Prayers for us all the God will show a cure!

 

[mmksparbud]

Sometimes family are the ones that make us feel worse because of their lack of knowledge about this. I've been blessed that I had few of those kind of people, but a lot of us are drowning in them. I try to not pray that they get this!! I use to have an article explaining this, but I don't need it any more. You might want to sign up on patientslikeme.com It's a research site, free, but to join you have to answer a ton of questions. They have forums for many different kinds of illnesses, not just fibro and you can go to any that you have. I got most of my info from them. They have charts that you keep up by updating how you are feeling, what meds you're on and so forth. You can print out the graphs and take them to your dr. You can also check what others are on and how they're doing (you can also sign up to not have your profile be available to others. They do sell your info to other researchers, but not who you are, or how to contact you. A lot of the people also will post articles they have found in their search for info. They're a great bunch of people and you can get a lot of support and understanding from them. You can look up topics, and old posts and it's been a lifesaver for me. I've been on disability for over 4 years now, don't get out unless I have to. I have multiple issues, also. My hubby is very supportive and understanding---now--after he ended up on disability himself and many operations later. At first he thought I was faking it too. I gave him several articles to read and then he started to understand. Now, we are very grateful to have each other and the 2 of us together still do not add up to one healthy person!
Hang in there--it's a blessing in that it has drawn me closer to God--sometimes if only to beg Him to hurry up and take me!!--Then I feel guilty, as there are far worse things that some people are suffering through and beg forgiveness! God bless and don't forget--Laughter doeth good, like a medicine!--get plenty of it!

 

[super mom]

I have fibro and am struggling daily with the pain. i wish there was relief from it, i have been on everything but lyrica and nothing helps or helps then quits entirley.

 

[mmksparbud]

I have fibro and am struggling daily with the pain. i wish there was relief from it, i have been on everything but lyrica and nothing helps or helps then quits entirley.

Lyrica has helped some people--not me, though. Nothing works for everyone--check on Low Dose Netrexone--has really helped many, me included--though I don't take it anymore as it doesn't help my nuropathy pain in feet. Very hard to get a dr to order it, not covered by insurance--it's about $60 a month.
So far nothing has gotten rid of it entirely. But, alot of research being done and still being done, esp on the brain. We just keep hoping and praying. God bless.

 

[super mom]

yes the pain in the feet is dang near unbearable lately i hate walking anywhere because of it

 

[mmksparbud]

yes the pain in the feet is dang near unbearable lately i hate walking anywhere because of it

The only relief I get is to put them puppies into cold water for a few minutes. The pain wakes me up about every 2 hours and I have to get them cold in order to get a couple more hours sleep.
I leave enough water in the tub to reach right around my ankles. The water gets colder when it sits. It doesn't do that when using plastic. I also have these gel packs I got off the internet. They are folded into thirds and you can open them up for larger areas. I take them, folded into thirds, and then fold them. I had ordered these cold packs that you can wrap around your ankles and they're useless. But they are great to wrap around the gel packs (they have a velcro fastener)--I toss the folded and wrapped packs into the freezer and I get a little longer relief when I slip those over my feet. Have to be careful, too cold for too long and your skin my react, so sometimes I wear very thin socks. I'm going to get 2 more of the packs, I already have the extra two ankle wraps and then I can alternate. It takes at least 2 hours to freeze.
I also have a cream I put on on my feet as they often feel tight, cracked, even though they are not cracked. I mix coconut oil with this Swiss collagen cream that I get at Sams club and put a few drops of mint oil in it. After I soak them in the water, without drying them, I rub in the cream, let it sink in a little and then I put Aloe Vera gel on top.Not the kind that has a bunch of junk in it, the one that's about 99% pure with just one other thing to keep it fresh (can't remember what it is)--the ones that have alcohol are drying.__It's quite an ordeal, but it helps, for a while. Hot water makes mine worse. If I take a bath, I have to stick my feet out of the water while soaking, then afterwards, soak them in cold water!--It's crazy what we have to go through for just a little relief!

 

[mamamarci]

I have started a facebook group for Christians with Chronic Pain. I would love to have you join. We are small right now but I hope that we can grow. Support is vital when you suffer from Chronic Pain. Love and Hugggs to you all. Marsha
Christians with Fibromyalgia and Chronic Pain.

 

[Shieldmaiden4Christ]

Hey everyone. I suffer from Fibromyalgia. It really sucks. I was diagnosed in November of 2010. Who else on here has this debilitating disorder?

I'm another fibromyalgia sufferer.

 

[SquareC]

I've suffered from fibromyalgia for years. I'm now on disability between that and the depression. I'm only 43, and I've been on disability for about 6 years. I barely get out of bed myself, and yeah it's really only when I have no choice. I haven't been able to sit at the computer desk for a few years now, and the only reason I'm able to get back on the net is because my daughter got a laptop and doesn't mind sharing with her mom when she's not using it. So at least I finally get to return to my favorite sites, of which this is one ! I've missed this place and I wonder how many of my old friends are still active. I'm hoping to see some familiar faces (so to speak) and also looking forward to making some new ones!

 

[hopeinGod]

I"ve had fibro for at least a dozen years. My meds are xanax, hydrocodone 10/50, lyrica (one or two .5o daily) and senna to help me with BMs. Without senna, it's impossible for me. I would stay constipated. Some days are much harder than others, so I'm learning to take the good with the bad.

I'm 61 years old and will retire next year, and the woman in my life, my best friend and former coworker, wants to do some traveling once I'm free. One of the places is Costa Rica which has a good many differences in regard to their efficiency and govt. cooperation. So, I think I will carry my meds with me, strapped through my belt loops, at all times.

Lyrica doesn't work for me in the long run. Oh, it helps me to get some sleep and when taken with a hydrocodone, can mellow the pain well enough to get me by for a few decent hours.

I trust God as much as possible and have stopped praying for healing. It is what it is.
Dave