Aa
To those with MS
I don't usually do this, because I read most of the posts and can usually answer my questions. But, I need to know if any of you with definite MS feel the way I often do.
I feel carppy. Therre is no other way to say it. I feel crummy, almost all of the time. My head roars, I feel weak, so fatigued that a trip to the store has me in bed. Along with it I'm irritable and impatient. I'm running to the BR with bladder cramps and everything down under feels strained and raw and achey (no UTI). It's not nausea, or sweating, or anything that I can relate to a specific illness, like I don't feel like the flu, or a cold or alleriges, or GERD. In fact, eating is one of my few pleasures. I have felt this way for the last few months.
My brain is working okay.
Other than the urinary, I have little pain, except for what breaks through with the TN - lots of little jaw pains recently and I see the dentist Monday, but no teeth are tender, gums are good. My gait has slowed and I'm tripping alot and it just makes me mad. Well, I am having really bad eye pain in both eyes intermittently for the last couple months and I am staying in a humidified room and using moisturizeing drops all the time and it is better today.
So, I hate going to the doctor and saying "I feel crummy" and not having anything to tell him specifically about why.
Do any of you just feel lousy?
Is it just a bad attitude?
Quix
I feel carppy. Therre is no other way to say it. I feel crummy, almost all of the time. My head roars, I feel weak, so fatigued that a trip to the store has me in bed. Along with it I'm irritable and impatient. I'm running to the BR with bladder cramps and everything down under feels strained and raw and achey (no UTI). It's not nausea, or sweating, or anything that I can relate to a specific illness, like I don't feel like the flu, or a cold or alleriges, or GERD. In fact, eating is one of my few pleasures. I have felt this way for the last few months.
My brain is working okay.
Other than the urinary, I have little pain, except for what breaks through with the TN - lots of little jaw pains recently and I see the dentist Monday, but no teeth are tender, gums are good. My gait has slowed and I'm tripping alot and it just makes me mad. Well, I am having really bad eye pain in both eyes intermittently for the last couple months and I am staying in a humidified room and using moisturizeing drops all the time and it is better today.
So, I hate going to the doctor and saying "I feel crummy" and not having anything to tell him specifically about why.
Do any of you just feel lousy?
Is it just a bad attitude?
Quix
Q- Am I remembering correctly that you went off your DMD in the fall due to a change of drugs and are not yet on anything? If that is the case, perhaps that is contributing to your general crumminess?
This could be a by-product of physical and emotional turmoil. Depression can't be discounted as contributing to the fun k you find yourself in.
Good luck describing this to the doctor.
Lulu
This could be a by-product of physical and emotional turmoil. Depression can't be discounted as contributing to the fun k you find yourself in.
Good luck describing this to the doctor.
Lulu
So sorry this is how you are feeling. I think an overwhelming combination of sx's can create a windfall of pain and depression.
Then it becomes a vicious cycle and we begin to just feel crappy like you stated.
How do you describe it. Ask your Dr if he/she has ever had MS and tell them it is kinda like that??
I have been in so much pain the last couple days and feel like the MonSter has grabbed both ends of my spine and decided to twist. Then I start thinking...am I feeling this way because I don't exercise enough? Am I making this worse for myself by trying to exercise?
Soon negative feelings seep in and the tumble begins. Not as fun as the roll down a grassy knoll when you were young.
I think Lulu is right if you have changed/stopped your DMD's you are going to be on a roller coaster.
We still think you are wonderful and wish you all the best with your funk and telling your Dr.
lots of love
D
Then it becomes a vicious cycle and we begin to just feel crappy like you stated.
How do you describe it. Ask your Dr if he/she has ever had MS and tell them it is kinda like that??
I have been in so much pain the last couple days and feel like the MonSter has grabbed both ends of my spine and decided to twist. Then I start thinking...am I feeling this way because I don't exercise enough? Am I making this worse for myself by trying to exercise?
Soon negative feelings seep in and the tumble begins. Not as fun as the roll down a grassy knoll when you were young.
I think Lulu is right if you have changed/stopped your DMD's you are going to be on a roller coaster.
We still think you are wonderful and wish you all the best with your funk and telling your Dr.
lots of love
D
My sincere thoughts and prayers go out to you <3
And "NO" you do not have a bad attitude! You are entitiled to these feelings and emotions....They belong to you! They are REAL!
As you know I too have been "Going Through it!" I finally told the doctor this week (the Electophysiologist) when he asked, I said straight up "I feel like sh*t!" I feel like "How can someone who is NOT terminally ill feel this bad?????" is there something else worse than MS wrong w/ me? Then I get the new dx of NCS (autonomic dysfunction) to go along with this beast from "Hell"
Oh how I know how you feel. And I have had a mental relapse again......I guess you could call it an acceptance (sp) issue once again. But you know what...We will be OK! We are strong.....(hey isn't that some words from a Pat Benetar song..lol)
Be good to yourself. And cheers for happier, non-crappy days, or I would settle for at least one day a week....Is that to much to ask?
~Tonya
And "NO" you do not have a bad attitude! You are entitiled to these feelings and emotions....They belong to you! They are REAL!
As you know I too have been "Going Through it!" I finally told the doctor this week (the Electophysiologist) when he asked, I said straight up "I feel like sh*t!" I feel like "How can someone who is NOT terminally ill feel this bad?????" is there something else worse than MS wrong w/ me? Then I get the new dx of NCS (autonomic dysfunction) to go along with this beast from "Hell"
Oh how I know how you feel. And I have had a mental relapse again......I guess you could call it an acceptance (sp) issue once again. But you know what...We will be OK! We are strong.....(hey isn't that some words from a Pat Benetar song..lol)
Be good to yourself. And cheers for happier, non-crappy days, or I would settle for at least one day a week....Is that to much to ask?
~Tonya
Did you have to go off your Provigil along with your DMDs? I remember that you were taking this medicine because it's the one I'm taking and it helps me so much. Regardless, though, I've been feeling crummy almost all of the time as of When I feel cra ppy, I am seriously grumpy. :(
I wonder if this correlates to disease activity . . . Maybe it has to do with spasticity . . . I don't know, but I'm sure everyone with MS can relate.
I'm sorry you're feeling like this. It pi ss*s me off to feel like this, too! LOL
Deb
I wonder if this correlates to disease activity . . . Maybe it has to do with spasticity . . . I don't know, but I'm sure everyone with MS can relate.
I'm sorry you're feeling like this. It pi ss*s me off to feel like this, too! LOL
Deb
Yes, I do have days/weeks where I feel crummy. Nothing specific considering the dx. I do have breakthrough TN pain, muscle weakness and cramping and assorted sensory symptoms. Some weeks it just seems to hit me harder than others.
A "spell" can go on for a few days to a few weeks. I have questioned my docs and my therapist about depression, they respond with "no". Usually a spell includes some new symptom that further impacts my day to day functioning. The current one includes balance and falling issues, a new involvement in upper extremities instead of just lower extremities. I have no energy nor desire to participate in routine daily duties and events but do so because of my kids.
The closest thing I can relate to this feeling is similar to recovery from the flu or an exhausting vacation trip with the entire family where I overdo everything since "I look so good" no one can see I carppy I feel .
My local neuro calls it a relapse every time but my MS neuro not necessarily so. My local neuro, whom I have been seeing for 5 years now takes one look at me and says, You don't feel good , do you?" He 'gets it' but has no magic remedy for it. He apologizes for not being able to fix it and tells me its just the nature of the beast.
So, you are NOT alone. I have gone to my local neuro and said bluntly I don't feel good. Usually this involves a change in my drugs to control symptoms but nothing more except a sympathetic pat on the shoulder.
Bottom line the we all realize: MS s*cks!
Ren
A "spell" can go on for a few days to a few weeks. I have questioned my docs and my therapist about depression, they respond with "no". Usually a spell includes some new symptom that further impacts my day to day functioning. The current one includes balance and falling issues, a new involvement in upper extremities instead of just lower extremities. I have no energy nor desire to participate in routine daily duties and events but do so because of my kids.
The closest thing I can relate to this feeling is similar to recovery from the flu or an exhausting vacation trip with the entire family where I overdo everything since "I look so good" no one can see I carppy I feel .
My local neuro calls it a relapse every time but my MS neuro not necessarily so. My local neuro, whom I have been seeing for 5 years now takes one look at me and says, You don't feel good , do you?" He 'gets it' but has no magic remedy for it. He apologizes for not being able to fix it and tells me its just the nature of the beast.
So, you are NOT alone. I have gone to my local neuro and said bluntly I don't feel good. Usually this involves a change in my drugs to control symptoms but nothing more except a sympathetic pat on the shoulder.
Bottom line the we all realize: MS s*cks!
Ren
you sound like the way I feel about 4 days of the week... if I rest for a day or two I might have a good day...then of course I might go to the store for groceries, and it starts all over again.
I called the MS Clinic about my mouth, they said DO NOT GET YOUR TEETH PULLED, not yet.. they want to see me first as the pain is not constant and it's not just one tooth or an infection that is causing this pain.... so I'm glad I called them.
hope you feel better soon, but I know how you feel.. rest up and try not to do to much. Its hard to change your lifestyle this much is't it.
take care friend
wobbly
I called the MS Clinic about my mouth, they said DO NOT GET YOUR TEETH PULLED, not yet.. they want to see me first as the pain is not constant and it's not just one tooth or an infection that is causing this pain.... so I'm glad I called them.
hope you feel better soon, but I know how you feel.. rest up and try not to do to much. Its hard to change your lifestyle this much is't it.
take care friend
wobbly
i feel crappy most of the time, which i why for me i have sledomed planned much of anything. do most things on the fly, when i am feeling decent. so much during free time or wanting to be around folks is a totally hit or miss thing for me. and has been fro years.
i still drip pee after peeing. i shake it, squeeze it, everything, but i have to roll some tissue around me there so i don't drip on my leg. i HATE this. this has been going on for years.
i have the constatn R-eye dull throbbing pain and the R-lower-jaw-hinge area pain.
sleep quality affects my moods i know. the other night i just lay & toss and turn and the aches and pain is counters a good nites sleep.
my body just has a hard time getting "comfortable". and i mean my physical body. is it ms or my spinal issues or both or what? beats me. but some pains i know exactly where they are coming from, but that doesn't mean it [is] that area. a funky nerve thing could be causing it.
can't exercise like i used too which adds to my frustrations.
all this affects how my mind is doing or it takes up a lot of mental energy that i would prefer to have been spent on something else.
i hate walking with other people because i have to walk slow. and of course i appear outwardly as being ok, most people say, "hurry up" etc.
so yes, i feel something like you do, crappy a lot of the time. more so than say, feeling good.
and what to say to the doctor? you and i have it a bit different there. the doctors i see, the burden of proof is on my shoulders. instead of a doctor trying to find out what is actually wrong and writing a diagnosis, i'm talking to the wind. you know that because you have seen some of my paperwork -- non-va versus va writings.
they aren't really there to help you due to health rationing.
though i probably tell them them the same things you and others here tell the doctors you all see. but i have such a frustrating time expressing myself verbably i know i myself cause some of the confusion with my doctors.
i dunno Quix, wrapping it up here, sure, i too feel more crappy most of the time versus not. as i've said before i can put on a happy face, etc for a few hours most days.
hope you feel better.
i still drip pee after peeing. i shake it, squeeze it, everything, but i have to roll some tissue around me there so i don't drip on my leg. i HATE this. this has been going on for years.
i have the constatn R-eye dull throbbing pain and the R-lower-jaw-hinge area pain.
sleep quality affects my moods i know. the other night i just lay & toss and turn and the aches and pain is counters a good nites sleep.
my body just has a hard time getting "comfortable". and i mean my physical body. is it ms or my spinal issues or both or what? beats me. but some pains i know exactly where they are coming from, but that doesn't mean it [is] that area. a funky nerve thing could be causing it.
can't exercise like i used too which adds to my frustrations.
all this affects how my mind is doing or it takes up a lot of mental energy that i would prefer to have been spent on something else.
i hate walking with other people because i have to walk slow. and of course i appear outwardly as being ok, most people say, "hurry up" etc.
so yes, i feel something like you do, crappy a lot of the time. more so than say, feeling good.
and what to say to the doctor? you and i have it a bit different there. the doctors i see, the burden of proof is on my shoulders. instead of a doctor trying to find out what is actually wrong and writing a diagnosis, i'm talking to the wind. you know that because you have seen some of my paperwork -- non-va versus va writings.
they aren't really there to help you due to health rationing.
though i probably tell them them the same things you and others here tell the doctors you all see. but i have such a frustrating time expressing myself verbably i know i myself cause some of the confusion with my doctors.
i dunno Quix, wrapping it up here, sure, i too feel more crappy most of the time versus not. as i've said before i can put on a happy face, etc for a few hours most days.
hope you feel better.
Yes, I feel lousy and I can't figure out why.
I can't even muster up a bad attitude.
Perhaps it's overdue to go back on Copaxone. For both of us.
I can't even muster up a bad attitude.
Perhaps it's overdue to go back on Copaxone. For both of us.
you said 'my head roars'.
so does mine most of the time....I think this leads to the overall crappy feeling. I think if I could only think clear, I wouldn't feel so bad.
Do headaches go along with MS?
I too can only go out for and hour or so....and then just need to come home and rest. I have 4 kids still at home, and planning a wedding for my oldest daughter.
Depression can also cause overall lousy feeling with many aches and pains....I know you know all this, just throwing it out here.
Hope you feel better soon!
Blessings
so does mine most of the time....I think this leads to the overall crappy feeling. I think if I could only think clear, I wouldn't feel so bad.
Do headaches go along with MS?
I too can only go out for and hour or so....and then just need to come home and rest. I have 4 kids still at home, and planning a wedding for my oldest daughter.
Depression can also cause overall lousy feeling with many aches and pains....I know you know all this, just throwing it out here.
Hope you feel better soon!
Blessings
I feel generally lousy for one reason or another about every day. I know there is nothing the Doctors can do. Also there are specialist and tests I just do not want to deal with so I with hold information from the doctors.
The thing that helps the most is I buddied up with someone who was diagnosed and started the DMD at the same time. That has been a God Send.
I also have one Doctor I call once a week for five minutes. Just being able to say I am in pain helps even if it is to his answering machine. He will call me back if I need him. He asks if he can help I usually say no but thank you.
I wrote on my health care blog this week about how much healing there is from a doctor who does not have all the answers but cares.
For me I can stand anything if I know people care.
My message to you Quix. is I care that you are in pain and feel crummy.
Alex
The thing that helps the most is I buddied up with someone who was diagnosed and started the DMD at the same time. That has been a God Send.
I also have one Doctor I call once a week for five minutes. Just being able to say I am in pain helps even if it is to his answering machine. He will call me back if I need him. He asks if he can help I usually say no but thank you.
I wrote on my health care blog this week about how much healing there is from a doctor who does not have all the answers but cares.
For me I can stand anything if I know people care.
My message to you Quix. is I care that you are in pain and feel crummy.
Alex
We care about U2, Alex. And Wobbles, I am happy to hear that you're hanging onto the wobbly teeth, at least so far. That's a choice that's hard to undo.
My dear Dr. Quizzles, you and everyone on this thread -- everyone in this forum, really -- have been lifted before the throne of the almighty Creator of heaven and earth, with a request for relief as well as clarity. I don'tknow how He'll answer, but I know He will.
Shalom.
My dear Dr. Quizzles, you and everyone on this thread -- everyone in this forum, really -- have been lifted before the throne of the almighty Creator of heaven and earth, with a request for relief as well as clarity. I don'tknow how He'll answer, but I know He will.
Shalom.
Dear Quix,
I do not have an answer as to why, all I know is that you are an amazing and generous lady who has helped so many of us on this forum. I am so sorry you are having to endure so much. I can only pray for you to have peace admist your "personal storm" to reach out to others, friends , family, and stay involved. It sounds like a lot of things could be causing this since you have so much going on. Hang in there...you are lifted up..God does care...you are not alone
Amy
I do not have an answer as to why, all I know is that you are an amazing and generous lady who has helped so many of us on this forum. I am so sorry you are having to endure so much. I can only pray for you to have peace admist your "personal storm" to reach out to others, friends , family, and stay involved. It sounds like a lot of things could be causing this since you have so much going on. Hang in there...you are lifted up..God does care...you are not alone
Amy
Can I just post one word, well apart from what I have just said :))
YES!!!!
Hang on, just had another idea, maybe it's because your tired?? And since you are a Dr., you know how fatigue compounds MS.
Yes I feel lousy with the pain, fatigue, hardly able to walk but I just push past it.
I may have MS, but it doesn't have ME :)))
Debs xxxxxxxxxxxxxxxxxxxx
YES!!!!
Hang on, just had another idea, maybe it's because your tired?? And since you are a Dr., you know how fatigue compounds MS.
Yes I feel lousy with the pain, fatigue, hardly able to walk but I just push past it.
I may have MS, but it doesn't have ME :)))
Debs xxxxxxxxxxxxxxxxxxxx
Hi Quix!!! I hope you are feeling better!! I know you want to be the one here to support everyone and carry there beasts for them all while dealing with your own syptoms!!! Just hang in there!!! you are human and you are allowed to have your time too!!! I too have been feeling crappy everyday for too many months to count!!! I come here for soooo much, it's support, validation and wisdom!!! We all owe you sooo much!!! Give and take and I'll scratch your back and you scratch mine!!! We're all in this together!!! So always ask the forum family when you need help !!! Thank you Quixf all for all you do and to everyone here!!! I hope you feel better real soon!!
Oh and Ufrustrayed2, I can pretty much say your days and nights sound pretty much like mine, even down to the toilet paper thing, hehehe lol!!!
Hi,
I couldn't understand any better if we were twins, I don't think. If you recall my situation, it is different than most, but, to answer your basic qualifying question - I have definite MS. I believe I survive by not thinking about much as far as symptoms - little ones anyway. It is very hard to know which disease is causing which symptom, so I don't try to see specialists - though Medicaid won't let me see many outside the hospital anyway.
I've noticed lately, though, that I have felt more and more "BAD". Fatigue has hit like a freight train - reminds me of when I first became ill. I always described it as periodic times when my fatigue was so overwhelming - I couldn't rise above it. All my joints hurt - my body was inflamed everywhere, with joints swollen. Eyes hurt and so dry and blurry. And my GI and Lung problems all seem to flare up. There is a mood change as well. I always prided myself in being able to stay mostly filled with joy - looking at the humor in life and enjoying my kids and my Lord, and delighting in learning new things. But more and more, depression and irritability are creeping in with nothing offering relief.
I know my doctor is thinking I won't live that much longer, which means I don't get pep talks from him. He's sympathetic, but although he's always been the optimist, I don't see it in his eyes anymore. I don't mean to bring you down - I know you have a lot of life to live and are still able to be active. BUT, I hear you saying you're getting less and less able to keep your activity up. I want you to know I understand that transition (hopefully temporary for you) and change and how difficult it is.
Denial - even though not really real denial - in other words - we both are aware of the truth of what's going on! Allowing yourself to not focus on the seriousness or permanence of the illness sometimes is what keeps us going. No one with the dx of MS knows for sure the path their disease will take. I do know a bit more because of all the other diseases and problems, but still don't know for sure. Miracles happen, and I don't know exactly how things will play out.
I do want to say to you, though, and to myself - I think its OK to mourn and take a moment to be angry with your circumstance. Life isn't what you wanted nor is it always easy to accept. When we try to always wear a smile - it isn't being truthful to ourselves and the grief backs up and becomes poison. Let it out and THEN move on and think how you can use the latest crappy thing to help others or yourself.
I don't know if I can say anything right now to be helpful but I am very down right now. I have a son who is suffering terribly, horrific financial problems, nothing works in my home - nor cars. My body breaks down more and more each day and I can't bear my children seeing their sole support dying before their very eyes. I can't even make food or clean up my surroundings. I don't even want to bathe or see anyone - except for church, which I still try to make it to almost every week. I felt myself thinking iffy thoughts about it too lately.
OK - point is. GET your FEELINGS out. Tell us - or someone. Be vulnerable and honest about your fear and disappointment. You'll be more help to yourself and others as well if you don't pretend to always be strong. I've always been the strong one. People expect it from me, which makes it hard sometimes. I'm working on being more honest with myself and everyone else. Hey - I can't do it all (or even much or any of it). I have a strong faith in Christ and so I try daily to give my concerns to Him - and then try to not take them back!!! lol
I apologize for rambling and hope you know I'm just trying to make you realize you're not alone and that it's a good thing to express your down times. I'm thinking of you, and want you to know it. Blessings, Jan
I couldn't understand any better if we were twins, I don't think. If you recall my situation, it is different than most, but, to answer your basic qualifying question - I have definite MS. I believe I survive by not thinking about much as far as symptoms - little ones anyway. It is very hard to know which disease is causing which symptom, so I don't try to see specialists - though Medicaid won't let me see many outside the hospital anyway.
I've noticed lately, though, that I have felt more and more "BAD". Fatigue has hit like a freight train - reminds me of when I first became ill. I always described it as periodic times when my fatigue was so overwhelming - I couldn't rise above it. All my joints hurt - my body was inflamed everywhere, with joints swollen. Eyes hurt and so dry and blurry. And my GI and Lung problems all seem to flare up. There is a mood change as well. I always prided myself in being able to stay mostly filled with joy - looking at the humor in life and enjoying my kids and my Lord, and delighting in learning new things. But more and more, depression and irritability are creeping in with nothing offering relief.
I know my doctor is thinking I won't live that much longer, which means I don't get pep talks from him. He's sympathetic, but although he's always been the optimist, I don't see it in his eyes anymore. I don't mean to bring you down - I know you have a lot of life to live and are still able to be active. BUT, I hear you saying you're getting less and less able to keep your activity up. I want you to know I understand that transition (hopefully temporary for you) and change and how difficult it is.
Denial - even though not really real denial - in other words - we both are aware of the truth of what's going on! Allowing yourself to not focus on the seriousness or permanence of the illness sometimes is what keeps us going. No one with the dx of MS knows for sure the path their disease will take. I do know a bit more because of all the other diseases and problems, but still don't know for sure. Miracles happen, and I don't know exactly how things will play out.
I do want to say to you, though, and to myself - I think its OK to mourn and take a moment to be angry with your circumstance. Life isn't what you wanted nor is it always easy to accept. When we try to always wear a smile - it isn't being truthful to ourselves and the grief backs up and becomes poison. Let it out and THEN move on and think how you can use the latest crappy thing to help others or yourself.
I don't know if I can say anything right now to be helpful but I am very down right now. I have a son who is suffering terribly, horrific financial problems, nothing works in my home - nor cars. My body breaks down more and more each day and I can't bear my children seeing their sole support dying before their very eyes. I can't even make food or clean up my surroundings. I don't even want to bathe or see anyone - except for church, which I still try to make it to almost every week. I felt myself thinking iffy thoughts about it too lately.
OK - point is. GET your FEELINGS out. Tell us - or someone. Be vulnerable and honest about your fear and disappointment. You'll be more help to yourself and others as well if you don't pretend to always be strong. I've always been the strong one. People expect it from me, which makes it hard sometimes. I'm working on being more honest with myself and everyone else. Hey - I can't do it all (or even much or any of it). I have a strong faith in Christ and so I try daily to give my concerns to Him - and then try to not take them back!!! lol
I apologize for rambling and hope you know I'm just trying to make you realize you're not alone and that it's a good thing to express your down times. I'm thinking of you, and want you to know it. Blessings, Jan
You don't know me, but you have, in the past, answered to desperate posts of mine in a very warm-hearted and truly helpful way.
I just wanted to say I'm sorry you feel like this so often- and probably right now, too, and I definitely don't think it's a bad attitude- of all people, you are the least I could possibly imagine they would just whinge around, even by just having read your posts and a lot of the great stuff you've written here, I get the powerful impression of a VERY strong person- maybe that's what makes it even harder when you feel like that.
I really hope you will have more good days soon- my thoughts are with you!
Rike
I just wanted to say I'm sorry you feel like this so often- and probably right now, too, and I definitely don't think it's a bad attitude- of all people, you are the least I could possibly imagine they would just whinge around, even by just having read your posts and a lot of the great stuff you've written here, I get the powerful impression of a VERY strong person- maybe that's what makes it even harder when you feel like that.
I really hope you will have more good days soon- my thoughts are with you!
Rike
Wow, you just described me! I pretty much feel crappy all the time too. Somedays less crappy than others but still crappy. Thursday night I went out with my daughter and we did a little shopping and then on to a movie. Well I bet you can guess where I was for the next 2 days. That's right, in bed.
I think that's one of the things I hate the most is knowing that if you try to enjoy yourself a little your gonna pay for it a lot. It's damned if you do and damned if you don't. Needless to say I choose to stay in most of the time for this very reason.
Quix, you have inspired me in so many ways. You always seem to have something positive to tell us when we are down and out and you very seldom complain to us even though we know that you suffer a lot. I just wish there was something I could say or do to help you like you have always helped me.
One thing I do want you to know and that is, I value our friendship very deeply. You have went above and beyond for me in many different ways, and now I will try and do the same for you by lifting you up to my GOD and praying for you every day. I will also pray for your doctors so that they may understand what your telling them and also know how to help you. I wish I could do more but you do know I'm just a phone call away or a post away. I love you dearly and we all need you to be a part of our lives. Hang in there my friend I know the LORD is going to bless you.
I'll be praying,
Carol
I think that's one of the things I hate the most is knowing that if you try to enjoy yourself a little your gonna pay for it a lot. It's damned if you do and damned if you don't. Needless to say I choose to stay in most of the time for this very reason.
Quix, you have inspired me in so many ways. You always seem to have something positive to tell us when we are down and out and you very seldom complain to us even though we know that you suffer a lot. I just wish there was something I could say or do to help you like you have always helped me.
One thing I do want you to know and that is, I value our friendship very deeply. You have went above and beyond for me in many different ways, and now I will try and do the same for you by lifting you up to my GOD and praying for you every day. I will also pray for your doctors so that they may understand what your telling them and also know how to help you. I wish I could do more but you do know I'm just a phone call away or a post away. I love you dearly and we all need you to be a part of our lives. Hang in there my friend I know the LORD is going to bless you.
I'll be praying,
Carol
Q,
You were one of the first to post to my MS Question yesterday, while I do not have an actual dx of MS (yet?) I too experience many of these exact same symptoms.
I have come up with ways to tell my GP, like I have this feeling of extreme exhaustion just wash over me without warning, I can be just sitting in a chair watching TV and this occurs and I have to go and lie down and then I sleep for hours even if I have only been up for a couple of hours, how do I tell him what that feels like, simple. Doc this feeling of exhaustion feels like I've just run a 32 mile marathon without getting up out of my chair and no rest breaks.
Feeling crappy? Hard to explain that one I know, I try to pull together some of those crappy feelings into some semblance of order, like do I ache all over, do I feel weak, unsteady today, more jittery than usual, is my heart racing today, etc. Then I come up with something to kind of paint a picture of what I feel like, also sometimes I just start up the web cam on my laptop and take a photo of myself feeling "crappy" and compare it to a photo of myself on a "good day" and share those pics with him.
Sometimes you know pictures speak louder than words. I don't know if this helps, but I do realize what you are going through, even though I personally haven't truly been diagnosed with this MonSter I really believe that it is what has been going on with me since August of 2007, that's when this MonSter started it attack on my person. (Not sure I can really say that without (I can't think of the word, but it means that I have been diagnosed with it) I know now, confirmation!) confirmation, see I told you I had mental problems! :)
Keep your head up, don't give up, I and many others here need your guideance and support and I know I'll be here to support you.
Prayers and Novenas
Suzie
You were one of the first to post to my MS Question yesterday, while I do not have an actual dx of MS (yet?) I too experience many of these exact same symptoms.
I have come up with ways to tell my GP, like I have this feeling of extreme exhaustion just wash over me without warning, I can be just sitting in a chair watching TV and this occurs and I have to go and lie down and then I sleep for hours even if I have only been up for a couple of hours, how do I tell him what that feels like, simple. Doc this feeling of exhaustion feels like I've just run a 32 mile marathon without getting up out of my chair and no rest breaks.
Feeling crappy? Hard to explain that one I know, I try to pull together some of those crappy feelings into some semblance of order, like do I ache all over, do I feel weak, unsteady today, more jittery than usual, is my heart racing today, etc. Then I come up with something to kind of paint a picture of what I feel like, also sometimes I just start up the web cam on my laptop and take a photo of myself feeling "crappy" and compare it to a photo of myself on a "good day" and share those pics with him.
Sometimes you know pictures speak louder than words. I don't know if this helps, but I do realize what you are going through, even though I personally haven't truly been diagnosed with this MonSter I really believe that it is what has been going on with me since August of 2007, that's when this MonSter started it attack on my person. (Not sure I can really say that without (I can't think of the word, but it means that I have been diagnosed with it) I know now, confirmation!) confirmation, see I told you I had mental problems! :)
Keep your head up, don't give up, I and many others here need your guideance and support and I know I'll be here to support you.
Prayers and Novenas
Suzie
Hoo, boy, Quix. I feel for you! The roar (mine's pretty dull, thank goodness!), the exhaustion, the weakness, etc.,etc.,
I'm an avowed Fun Hog. I do the fun stuff, anyway, knowing full well I'll pay for it the next two days or weeks. But the fun is worth it, even if it's something as mundane as drawing up the next couple of day's menus and shopping for the ingredients. Yes, this to me is fun, and yes, I'm a goofball, too. I'll come home from the store, put the stuff away, and collapse in bed for the afternoon, utterly exhausted.
I don't participate in the same dangerous sports I used to (anybody want to buy a surfboard?), but there's this sick desire to push the fun envelope and hope I don't cause myself another relapse.
I'm so grateful I can still work 3 days a week. I get to help other people come to diagnosis in the Cardiology world, so they can take their own plan of action. It gets me out of my own head and personal medical problems. I get the feeling your work here and on other forums is fulfilling, too. You're still using your brilliant mind!
Yes, I feel cruddy, weak, spastic, stiff, buzzy, shocky, leaky, and depressed because I'm not performing my music any more for awhile, all on a daily basis. I'm trying to make lemonade from the lemons the Universe is throwing me. Some days, I don't have the energy to do even that.
I'm an avowed Fun Hog. I do the fun stuff, anyway, knowing full well I'll pay for it the next two days or weeks. But the fun is worth it, even if it's something as mundane as drawing up the next couple of day's menus and shopping for the ingredients. Yes, this to me is fun, and yes, I'm a goofball, too. I'll come home from the store, put the stuff away, and collapse in bed for the afternoon, utterly exhausted.
I don't participate in the same dangerous sports I used to (anybody want to buy a surfboard?), but there's this sick desire to push the fun envelope and hope I don't cause myself another relapse.
I'm so grateful I can still work 3 days a week. I get to help other people come to diagnosis in the Cardiology world, so they can take their own plan of action. It gets me out of my own head and personal medical problems. I get the feeling your work here and on other forums is fulfilling, too. You're still using your brilliant mind!
Yes, I feel cruddy, weak, spastic, stiff, buzzy, shocky, leaky, and depressed because I'm not performing my music any more for awhile, all on a daily basis. I'm trying to make lemonade from the lemons the Universe is throwing me. Some days, I don't have the energy to do even that.
Hi I am new to the forum today and have read many of your posts and have felt drawn to your wamth, honesty and giving to other people. Sometimes it is good to receive and look how many friends you have made, so in spite of feeling horrible, I am sure that you will feel some well deserved support in return for all that you have offered to others. Live in the moment and find something to make you smile :)
Seems like pretty much everyone here is feeling about the same as you. I like Guitar_grrrrl's attitude though!! She does what she can, when she can regardless of the repercussions but of course we can't all do that either.
You are so helpful to everyone Quix and it just doesn't seem justfied that you of all people are feeling so crappy!
You know that I haven't been around too much lately but I am doing my best to exercise daily and it really seems to be helping with the little icky feelings that I can't seem to explain. I have the added problem of asthma and chronic bronchitis that slows me down some but I do what I can to get er done! I recently underwent a MIBI test and echocardiogram due to a glitch on my last EKG and get my results back on Tuesday. Then I had blood tests and an ultrasound on my thyroid due to pain in my neck as well as other symptoms that seem to point toward Hashimoto's (I hope not) but perhaps the results of these tests will tell me why I feel crappy most days (especially since most of my docs çan't accept my MS diagnosis). You know how long I have been having a problem of getting up in the morning after 10 hours of sleep and having to go directly back to bed cause I can't keep my eyes open...well, it's still here 4 days out of 7 and the Amantadine isn't helping. I have to agree with whoever said..."bottom line, MS S*CKS!!!
I certainly hope that you start to feel better soon and maybe once the weather gets sunnier and it gets easier to get out regularly for some fresh air and natural Vitamin D! I hope your symptoms give you a break soon and I DO NOT believe it is a bad attitude, rather perhaps it's because you are not doing enough for yourself because you are too busy doing so much for others??? Maybe a change in your schedule and the time you spend on the computer needs to be thought about??? Just a suggestion but I really hope you start to feel better soon!!
Lots of Hugs,
Rena
You are so helpful to everyone Quix and it just doesn't seem justfied that you of all people are feeling so crappy!
You know that I haven't been around too much lately but I am doing my best to exercise daily and it really seems to be helping with the little icky feelings that I can't seem to explain. I have the added problem of asthma and chronic bronchitis that slows me down some but I do what I can to get er done! I recently underwent a MIBI test and echocardiogram due to a glitch on my last EKG and get my results back on Tuesday. Then I had blood tests and an ultrasound on my thyroid due to pain in my neck as well as other symptoms that seem to point toward Hashimoto's (I hope not) but perhaps the results of these tests will tell me why I feel crappy most days (especially since most of my docs çan't accept my MS diagnosis). You know how long I have been having a problem of getting up in the morning after 10 hours of sleep and having to go directly back to bed cause I can't keep my eyes open...well, it's still here 4 days out of 7 and the Amantadine isn't helping. I have to agree with whoever said..."bottom line, MS S*CKS!!!
I certainly hope that you start to feel better soon and maybe once the weather gets sunnier and it gets easier to get out regularly for some fresh air and natural Vitamin D! I hope your symptoms give you a break soon and I DO NOT believe it is a bad attitude, rather perhaps it's because you are not doing enough for yourself because you are too busy doing so much for others??? Maybe a change in your schedule and the time you spend on the computer needs to be thought about??? Just a suggestion but I really hope you start to feel better soon!!
Lots of Hugs,
Rena
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