I have MS and Fibro...I decided to ask on this board even though brain fog can come from both diseases...it seems with Fibro it is more common (I don't really know) but also seems Fibro patients understand more you can have 2 diseases or more..anyway...it has been non-stop for 2 months..maybe more..I cannot take it anymore..any tips that can give me relief would be appreciated..
I was just finally diagnosed with fibro last week after several years of pain, constant tiredness and many more symptoms.
Not sure if this is what your talking about but, I lose things all the time. My remote, keys, things I had the minute before. I also forget appts 5 minutes after I make them and have to call them back and write them down, and then lose the paper I wrote it on.
I have started putting my important papers next to my kids art work on the frigde, so I can check them out everyday.
I gorget to pay bills because I think ive already paid them so once or twice a week I have to find all my bills laying around and go threw them and and double check everything.
At work, I cannot concentrate on what im doing and get very side tracked.
I am on Adderall for the tiredness and i have to say that it also really helps with all of that. Not 100% but, makes it at least 50% better.
I have been on it since November and in Feb I got my daughter a little desk for her computer on her birthday and It was the first time in my life i was able to read all the instructions without getting mad and trying to do it on my own or throwing stuff..ooops.
I get really frustrated sometimes, that seems to be a little better also
Wish you the best of luck and please let me know if you find anything that helps alot with you.
hi donalda,
tip 1. get over it. it's here to stay and all the anger in the world won't get rid of it.
tip 2. learn to laugh at yourself when you flub up and forget what you were saying or the wrong words come out.
tip 3. get a date book, a small one that will fit in your bag and use it! check it every sunday. a note on the bathroom mirror to remind you to check your book. i have named mine, it's called, "my brain". i write everything important in my brain.
tip 4. adapt, adapt, adapt. in the end it is all one can do. there is no fix for this, no magic pill, no meditation, no nothing. just the fog.
i have had it for almost 2 decades. it does not bother me to be this way any more. i laugh, i forget, i say sorry, i forget and forget i forgot. it was scary at first, now it's just funny and i do give myself reason to laugh often!
i may be a week early or i may be a week late but i will show up. i tell that to all my doctors and friends. they laugh with me about it. why? cause i have done it!! more than once! giggle.
peace,
bluelakelady
Some days are better than others. Some days I forget everything or can't remember, whichever. And soem days I am on the top of my game. I take adderall which helps with energy and focus. It doesn't always do it but it helps a lot. I also do computer games, take fish oil and try to get as much sleep as I can because I think they help also.
Fish Oil I have been off and on for years BUT have just made a committment to stick with it...Sleep..hmm what's that? HAHA...actualy in the process of trying to take care of ME..I have always taken care of everyone else, ran myself ragged and whether MS or Fibro if I get knocked down, as soon as I can I am up and pushing myself to the max...so for thinking of me part, I am dealing with guilt and trying to accept this NEW me which really has changed years ago..I just wanted and did deny it as much as I could..don't think I did myself any favors because now I am not bouncing back to any kind of normal days in a row.
The following user gives a hug of support to donalda: Pammyann (05-24-2011)
Hi,
Totaly understand how you feel. Saying "get over it" isn't the greatest of help. Granted, it is here to stay and there is very little you can do to avoid it, in fact nothing. However, you are not alone in this and I think that is important to know.
I have days when I just want to scream. On the whole I am a pretty positive person, but everyone has their limits. Having Fibro is bad enough without having MS aswel. So my heart does go out to you.
Try to remain as positive as you can and never give up fighting. Mental strength is so important ok.
Sernding hugs and anytime you want to vent or chat, then do so and get it all out.
Hugs...xxx
Hi there I can totally relate!! I work fulltime and it's just impossible to remember everything! I try to say something and forget a word and have to play cherades to get an answer (like how to spell cherades...lol). Hang in there kiddo. Get your rest, that truly helps. Watch your stress levels too, that can really get the ball rolling. And like Blue says....just accept it. It is what it is!!
Low pain all,
__________________
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Dx'd with Fibro 2007
Endometriosis
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Anxiety Disorder since 1986
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hi donalda,
yes denial is futile and at some point shows us it is. allow yourself to mourn the loss of the self you were. this way she can rest and you can focus on adapting to this new you. it may not seem so but there is so much you can do once you understand how to work within the limits of fibro.
give yourself the same level of love and care you give to others. when you can do that you have found balance in life and your health will be so grateful for the compassion and love.
the best advice i was given many years ago was, get over it. a doctor said it to me. i was shocked but i understood what he meant. get over the fact that i am totally different and nothing is going to bring me back. adapt and live my life to the fullest. it became my mantra for living. i do not fight it, deny it, rage at it, or hate it. all those emotions do is feed the fibro what it loves, disharmony within, for it is a fertile breeding ground for pain. instead i give my body love, compassion, understanding and i talk to me. i say things like, this is nothing, it's been way worse. or, i laugh in the face of the pain of fibro and say, i can adapt to that too. i also say, sorry you are tired and hurt body. let's rest today shall we? or, i need you today, can we save this for tomorrow?
i hope you find the peaceful path for you and your body to find harmony again.
peace,
bluelakelady
I understand what you are saying Bluelakelady..it all makes sense and have even myself had this faint thoughts..and of course my husband ALWAYS tells me to take care of me..I wonder if this is a long process because I sure could scream when I am unable to do anything or feel like I am a failure because I am not doing it all...and then the guilt of it too..especially with those who really do need me like my mom...I will continue to mourn me and acccept the new me...I have decided to do that..not that I have accomplished it
hi donalda,
i remember the guilt and sense of failure well. they remind me where i never want to go again. to a place of not liking me because i was different than before.
i love my mom dearly and she understands i have limitiations just like she does. when i told the truth to my mom she was very kind and has made room for me as i am in her life. i tried to hide it from her for several years. pointless! normal, but, pointless.
how can one be a failure if one did not ask for this? how can one feel guilt for something beyond their control? having them is not your fault. no one asks for this, like it's a special gift? you do however have say over how you respond to this change and how you treat others. that was where i found me again. a kinder, stronger, more compassionate me than i ever thought was within.
in the end no one remembers what you were not up to, they remember the times you were up to it and had fun, or were helpful, or simply were there to lean on. you are your heart and mind, not fibromyalgia. it is only an aspect of your reality. a painful one but still only an aspect.
it does take time to reach that point of saying there has to be a better way to handle this, and then finding one. i was fortunate, i sought the assistance of a shrink. not because i was crazy, just the fear of going crazy if i did not get a handle on this me that i suddenly was. i learned how to care for myself without feeling guilty, how to set boundaries with people, gently and without guilt. most of all i learned to quit apologizing for the way i was. there is a silver lining in every life altering event. mine was finding peace with myself. understanding there are some things that are not mine to do and letting go. being cool with not understanding a single thing about fibro. giggle. no body knows how it gets there. i chased that concept for longer than i am going to admit. giggle.
peace,
bluelakelady
That's me too..hiding it from others...I am the one who is the perfectionist, who can do it all, who is the one that the family goes to and can take it all on...COULD take it all on..in my mom's case..she is sick and so is my sister badly crippled with Rheumatoid and having kids myself know how upsetting it is to worry about them so part of my reason for hiding is not wanting her to have another child to worry about..but perhaps i am keeping her from the joy of helping and serving that we get when we do so..
I can see a counselor helping to get through some things..one big one accepting the fact I need help and it being hard for me to ask or even admit I do..just saying these things the last few posts is helping me admit it somewhat.
giggle, me too. i was the tower of strength, the shoulder to lean on, the one who would run anywhere, anytime for those i love. i have 8 kids and 15 grandkids. my sis is the tower in the relationship of mom, me and sis. she's my big sister, always taking care of everyone. even she has slowed down and she's healthy!
i too protected (and still do from the daily junk) my mom because her health is not so great. when i went 6 years ago to care for my mom after a stroke the whole of the truth came out. can't hide it when you live there for 2 months. i have told her she is allowed to care but not to worry. i am a big girl now and can do this myself. if i need help i promise to holler. yea, i know she worries but hey it's what moms do. i have 3 kids with health issues so i get that she will always worry. i have my moments too of worry about my kids. however, they are adults and can take care of themselves by seeing their doctors regularly and eating healthy. one daughter just had her 2 year birthday. 2 years cancer free!!!
i am glad you are searching for the key to set yourself free from your self made prison of perfection, giggle. just wait till you see how fresh the air is, how lovely the sun's warmth can be. looking in the mirror is a good place to talk to yourself about your future and how you want to deal with it both emotionally and physically.
and yes, my mom loves being able to help me. she helps financially and every month. it makes her feel like she is helping and she is! without her i could not take all the alternative choices insurance does not cover. like my massages, vitamins, and special hand made organic soaps. she is not well enough to "be here" for me and i don't expect or need that. just a sweet word when i do admit things are a bit rocky. i think the most loving thing that came from being honest is the tenderness my family treats me with without choking me or cramping my style. they never tell me what i should be doing. they trust that i know more about it than they do and will be responsible and loving to myself.
learning to accept assistance from others is good for them. know the way you feel like a healing mountain when you help them? well, they like that feeling too, so let them enjoy feeling needed and loved and counted on. being someones rock is an honor. we mountain strong women have to step back and let them have some of the fun too.
the shrink was like going to one of those places where you go to dry out or get off drugs. i needed to get off me. let me go. have a funeral for old me and get on with life.
i also read all of the books he had to study to get his degree. i learned so much from those books. i have not seen him in at least 7 years. i needed a teacher and access to a library of the mind. he was the best. after 4 years of head shrinking he said i really did not need him, said i was a natural at change. giggle. thank heavens for small gifts that morph into the biggest best gift of all. i went for 3 more years, mostly to discuss the books i was reading and be sure i got as much as possible out of them.
not everyone requires a shrink to make this change. all you need is heart, desire and a strong will. giggle we know you have that! tho i would recommend reading the psychology of language. boy was that an eye opener!
peace,
blue
ps. dang, sorry this is so long, oops! motor mouth, giggle.
Last edited by bluelakelady; 05-26-2011 at 06:44 AM.
Reason: add post script
wow! I can see you understand....the worker (or should I say ex)...I guess i see I have given up alot but not in my mind because I am not at peace when I sit back and let "someone else"...you understand the "mom" thing..being one and having one that you hid your struggles from..and you are so much farther than me, but it gives me hope I will be at a place of peace with this new me...I don't want to waste another day with turmoil...I want to find it NOW! Some days I think I'm on my way....others I could throw something, but I guess that too is progress...takes awhile...takes steps forward and backwards...I will look for a time to talk to my mom...I know I am keeping her from helping and she actually may feel like she is a contributor to something in life if I let her..could this be control on my part too? HAHA
hi donalda,
i had to chuckle at your, i want it now. giggle. i remember how hungry i was for peace of mind and body. baby steps lead you out of the prison, not giant leaps. something i found helpful was learning to tell myself to shut up. i told myself that a lot and still do from time to time. we can think the craziest angry junk. i think it is fear of being helpless. we are never helpless, never useless and life is never pointless.
every human needs a helping hand from time to time, even healthy humans. so glad you are going to allow your mom into your life by telling her your truth.
yea, i guess i do understand. tho i think i have been at this game longer than you. i've been playing fibro ping pong for 16 or 17 years. i forget. giggle. at first the paddles were very hard. one was anger, the other frustration and i was the ball. now the paddles are soft with love and compassion and i am still the ball, giggle.
when you start to think about all you cannot do, or how hard it is to do, tell yourself to shut up and listen to the other you who has something constructive to say. like i can do this. i can ask. i can accept assistance. i can let it go till tomorrow.
i talk to my body a great deal. i ask if she is hungry before i eat. i ask her to be up to whatever we need to get done. i don't think i ever shut up when it comes to body communications. but it's a good way to utilize that motor mouth of mine.
you have taken the first steps to freedom and peace. you are aware of your thinking and want change. it's not an overnight thing, tho that would be very cool. it takes practice. for years you have only had conversations about what body will be doing next and next. now you can speak to body about change.
you can get to where i am and beyond. there is nothing special about me that made it easy. i have no magic that made it easy. it took me about 2 years to really learn to listen to myself and honestly plug in to my body.
peace,
blue
yeah that's it...feeling helpless or useless...just have to find my new "jobs" in life...oh and the talking to myself constantly...I don't think my mind ever shuts up until I have fallen asleep..what a battle that is.
giggle, yea my brain is always going too. but that can be turned into a tool for helping you find a new path. a new you. i chat with myself all the time. used to be about all the bad, scary things. now we talk about the healing loving things we can do for each other. mind and body may be in the same space, but they are individuals who work together, so finding an open line of communication between the two brings harmony to both.
helpless is a yucky barf feeling. i refuse to feel that ever again. i am never helpless. helpless means no one can help me. that's just not true.
enjoy your weekend and remember to breath slow and deep. our bodies starve for oxygen. pain causes shallow breathing and the tissue of our body reacts to that with more pain. deep slow breaths restore the co2 balance, and you get focused on breathing so your brain leaves pain world to concentrate on breath.
peace,
blue
I can see you take very good care of "you"...I'm sure you do with the body and your eating...I am not good at this either..man I can see I really haven't taken care of me at all in any area...what is the best diet and how did you accomplish this part? I also talk to myself all day about that too!!! (and nite haha)
hi donalda,
thanks. i work hard at loving my body. i am not on any special diet. i do eat seasonally. if a fruit or veggie is in season i eat them. i am a vegetarian. i gave up beef almost 6 years ago. i felt sluggish after eating it and it would last for days. then i lost my taste for all meats, so i quit eating them. my body knows what works best and what she needs. it's called cravings. they happen for a reason. i eat steamed veggies and rice, beans, salads, eggs, milk and ice cream for protein along with a whey protein powder in milk. i eat organic food and grow some of my own. tomatoes! several fruit trees and berry bushes.
boca burgers are a total favorite, tho i do cheat and eat tater tots sometimes with one. i stay away from processed foods unless i have a craving. they don't happen often, just when my body needs something i am not giving her.
during the winter i craved, really craved a cheeseburger. for 3 weeks it drove me bonkers. then my massage team said your body needs it, so eat it. well i did and the craving went away and no meat hang over. go figure!? oh, and i felt better!
i don't eat often, no desire. i do drink a great deal of spring water from a local spring. no sodas or alcohol. that was easy, don't like them anyway. giggle.
what and how i eat is a daily experiment. i do my best to listen to what she needs and then decide if it is good for me. sometimes cravings come from emotional need, not physical.
giggle, hope that helps, giggle.
peace,
blue
ps. i am addicted to candy and sweets and do indulge that almost daily. as long as my weight is good i can. i once wished to be able to eat all the sweets i wanted and be thin. got my wish. forgot to specify how, oops! giggle. i was between 160 and 180 most of my adult life. when i gave up meats the weight just started falling off. awesome! from a size 18 to a 6 works for me!! i feel better with less to cart around. i was a size 14 when i gave up meats.
I have MS and Fibro...I decided to ask on this board even though brain fog can come from both diseases...it seems with Fibro it is more common (I don't really know) but also seems Fibro patients understand more you can have 2 diseases or more..anyway...it has been non-stop for 2 months..maybe more..I cannot take it anymore..any tips that can give me relief would be appreciated..
I wish I could help... I've had it since I was 18, January 1999... It feels like living in a dream. Colors aren't bright. Like being intoxicated but not drunk. A Stoned feeling all the time, yet you're not numb. It's very frustrating... Then you put the fact that you are forgetful, have a hard time concentrating... I'm not a stupid person & like to think I have my head on straight... But I have days when I feel like a complete idiot... I call them my Blond moments or I had a brain fart... Anyhow, on top of it I'm always tired. For years I pushed myself, always on the go. I felt that if I stopped, I'd drop. My body was heavy & tired & much more. But, atleast I could push myself. Spent 12 yrs trying to figure out what was wrong with me before I was diagnosed last year with Chronic Fatigue Syndrome. But at that same time my Fibro symptoms were coming on so was diagnosed with Fibro not long after.
I wish I had a magic cure... Trust me, I've looked for a very long time. Now I just accept it. It's not going away, I'll never be the person I once was. I can't even push myself anymore. It's frustrating. Then the fact that family & friends are not very supportive... Thank goodness for this board...
Don't get me wrong, I hope that one day it'll lift... That to me is one of the worst symptoms... Not feeling aline or true happiness.... I do wonder that if I wasn't stressed as often if it would work. Life has never been easy. Only had 3 yrs in my life when I wasn't worried, stressed or afraid. So, I try to not stress or worry... But never so easy.
I haven't been tested for ms yet, only thing. Been trying to see a neurologist for 3 months & can't get an appt. 2 Dr's & still no referral... ugh I do wonder if I have it, would be nice to know so I didn't have to wonder anymore... But my husbands friend has ms & fibro... His symptoms remind me allot of what I've had.
Anyhow, you were hit with a double whammy... It's tough... Just try to live life, enjoy it & try not to worry about what others think. I've had to learn to use the word "no". My husband wanted me out cleaning up limbs last week, as if a farm, 4 kids & being the cook, maid & driver isn't enough... He can be mad at me, I don't care. I'm not going to be miserable because he's a selfish jerk.
Anyhow, enough ranting from me... Been a long day lol
The best eating plan that worked for me was just cutting out the junk. I am not a huge carb eater, the bread I eat is always a whole grain bread. I eat only smart balance, no butter. When something calls for oil I use olive oil. I don't eat meat, but last week went on a haddock bender, had a haddock filet with fresh veggies four nights in a row...I eat a LOT of greek yogurt. I drink lowfat milk with some ovaltine in it nightly. Bananas, broccoli, green beans, spinach, etc. Peanut butter is good, I buy the natural stuff. I feel so much better eating right. I do splurge and eat chocolate chip teddy grahams from time to time. I love chocolate but only allow it sparingly. I eat several times a day, small meals. I don't eat to lose weight, I eat to feel good. I know when I put garbage in my body its going to make me feel icky. So I don't. I don't like cheese, or meat or chicken. If I am going to eat flesh it will always be fish. I am not a fan of soy or tofu products so make sure that I get adequate protein daily, I get it from yogurt and milk. My diet is pretty boring to most people but I am eating what I like and it works for me. I cannot sit and eat a big meal without feeling horrible after. I usually do it in 6 or 7 snack sized meals. And 2 liters of water daily....I do have a HUGE weakness for gumballs, how weird is that??? Periodically I will buy them and go on a gumball bender..lolololol...not too often though, not great for the teeth..
peace
Sandra
I can totally relate!! I work fulltime and it's just impossible to remember everything! I try to say something and forget a word and have to play cherades to get an answer (like how to spell cherades...lol). Hang in there kiddo. Get your rest, that truly helps. Watch your stress levels too, that can really get the ball rolling. 
And like Blue says....just accept it. It is what it is!!
