Re: fatigue and MSA

[Guest guest]

Jerry,

Yes my Mother(54) has alot of fatigue. She gets tired very easy. She will take a nap in the morning and a nap in the afternoon. These naps usually only last from 1 to 2 hours. If she tries to stay up and miss a nap on the "good" days , you can tell in the evenings. She moves alot slower, her speech is worse, and she acts as if how she says "drunk" from the meds.

I Hope this helps.

Take Care,

Amy

Kernersville,Winston-Salem, North Carolina

[Guest guest]

Hi Jerry,

For me it is- I guess we are saying that is a given : ) You are right- that should be emphasized. Plenty of people with other diseases don't experience fatigue.

I would sleep a lot more except that it lowers my blood pressure even more. I try to get up after 8 hours, even if I end up back in bed an hour later. Ideally, I would have a nap but since I still work this is not possible. So I kind of rest all evening before I go to sleep. I experience yawning fits and extreme sleepy dizziness throughout the day. I could nod off without problem any time. And it is not laziness! And I do drink coffee, salt, sugar etc.

The second fatigue is body exhaustion- as if I ran five miles and every little bit of me is spent and worn and achey. The third type is more like metal block/confusion. This is less frequent for me but does happen when I persistently overwhelmed with pain, infection and MSA symptoms. The forth type of exhaustion is from taking care of the disease- the pills, the appointments, the bladder and bowel regimens, etc. The fifth, is pain is exhausting and I experience a lot of pain.

Just taking care of myself is a challenge when I am not doing so hot (which is at least weekly), let alone trying to accomplish what I want to do and or spend time with friends and family. I come home and drop- weekends are for catching up on sleep and exercise and maybe light housework. I have lost many friends and family members who do not understand why I have to cancel on them so often, I could not possibly be sick so often. Few people do understand- and I try to keep the perspective that I have to think about myself sometimes and do what is good for me- that if they do not understand then they do not really care. That is the toughest part.

What does your brother say about exhaustion?

Waverley

>>> Jerry@... 08/22/01 10:54AM >>> I rarely see any mention of fatigue as a significant element of how most of you report your situations with regard to MSA; however, that seems to be one of the most significant aspects of my brother's efforts to deal with this condition. So much of what he does is impacted by how much fatigue he experiences. He is trying to work 4 days a week still, but it appears that the fatigue more than the ataxia or other disabling aspects of MSA is challenging him. One of his chief symptoms or complaints even before diagnosis was this fatigue which he describes as just draining him of all energy reserves. Just wondering, do others have similar problems with fatigue? Jerry Cash If you do not wish to belong to shydrager, you may unsubscribe by sending a blank email to shydrager-unsubscribe

[Guest guest]

Waverly,

Just pretty much that it is an over-riding aspect of his life right now. When ever we discuss any kind of activity we might plan, he has to consider how much time he will need to "recuperate" from the fatigue. And I guess it is a kind of fatigue that doesn't go away if you take a nap or rest for an hour or so. It has lingering effects for the next day, etc.

Jerry

-----Original Message-----From: Waverley Beauchamp Sent: Wednesday, August 22, 2001 10:15 AMTo: shydrager Subject: Re: fatigue and MSA

Hi Jerry,

For me it is- I guess we are saying that is a given : ) You are right- that should be emphasized. Plenty of people with other diseases don't experience fatigue.

I would sleep a lot more except that it lowers my blood pressure even more. I try to get up after 8 hours, even if I end up back in bed an hour later. Ideally, I would have a nap but since I still work this is not possible. So I kind of rest all evening before I go to sleep. I experience yawning fits and extreme sleepy dizziness throughout the day. I could nod off without problem any time. And it is not laziness! And I do drink coffee, salt, sugar etc.

The second fatigue is body exhaustion- as if I ran five miles and every little bit of me is spent and worn and achey. The third type is more like metal block/confusion. This is less frequent for me but does happen when I persistently overwhelmed with pain, infection and MSA symptoms. The forth type of exhaustion is from taking care of the disease- the pills, the appointments, the bladder and bowel regimens, etc. The fifth, is pain is exhausting and I experience a lot of pain.

Just taking care of myself is a challenge when I am not doing so hot (which is at least weekly), let alone trying to accomplish what I want to do and or spend time with friends and family. I come home and drop- weekends are for catching up on sleep and exercise and maybe light housework. I have lost many friends and family members who do not understand why I have to cancel on them so often, I could not possibly be sick so often. Few people do understand- and I try to keep the perspective that I have to think about myself sometimes and do what is good for me- that if they do not understand then they do not really care. That is the toughest part.

What does your brother say about exhaustion?

Waverley

>>> Jerry@... 08/22/01 10:54AM >>> I rarely see any mention of fatigue as a significant element of how most of you report your situations with regard to MSA; however, that seems to be one of the most significant aspects of my brother's efforts to deal with this condition. So much of what he does is impacted by how much fatigue he experiences. He is trying to work 4 days a week still, but it appears that the fatigue more than the ataxia or other disabling aspects of MSA is challenging him. One of his chief symptoms or complaints even before diagnosis was this fatigue which he describes as just draining him of all energy reserves. Just wondering, do others have similar problems with fatigue? Jerry Cash If you do not wish to belong to shydrager, you may unsubscribe by sending a blank email to shydrager-unsubscribe

[Guest guest]

Jerry,

YES, YES, YES!! Rob frequently complains of being exhausted, feeling

like he is wearing lead boots. When he was working he was barely

able to drag himself through the day. Now that he is " retired " (LT

disability) he is better able to cope, but it's not unusual for him

to need a nap in the late afternoon. The mental effort of working

was really tiring for him -- and he used to be a real " type A " guy.

Carol & Rob

> I rarely see any mention of fatigue as a significant element of how

most of

> you report your situations with regard to MSA; however, that seems

to be one

> of the most significant aspects of my brother's efforts to deal

with this

> condition.

>

> So much of what he does is impacted by how much fatigue he

experiences. He

> is trying to work 4 days a week still, but it appears that the

fatigue more

> than the ataxia or other disabling aspects of MSA is challenging

him. One

> of his chief symptoms or complaints even before diagnosis was this

fatigue

> which he describes as just draining him of all energy reserves.

>

> Just wondering, do others have similar problems with fatigue?

>

> Jerry Cash

[Guest guest]

Exactly! It is really hard to find that balance with exertion (any kind) and recovery (even if it is just a bit). if the world moved in accordance to fluctuating biorythems it'd probably be easier but it does not. You understand it very well- how about the rest of his family/friends? It is important because it can make you feel pretty weak otherwise. Just asking my Mom to pick up some groceries sometimes is hard- but sometimes neccesary. Nope, it seems like a permanent fixture of the disease. Why they don't ever focus research on relieving fatigue is beyond me.

Wish your brother well for me. Have good day Jerry,

Waverly

>>> Jerry@... 08/22/01 11:25AM >>>

Waverly,

Just pretty much that it is an over-riding aspect of his life right now. When ever we discuss any kind of activity we might plan, he has to consider how much time he will need to "recuperate" from the fatigue. And I guess it is a kind of fatigue that doesn't go away if you take a nap or rest for an hour or so. It has lingering effects for the next day, etc.

Jerry

-----Original Message-----From: Waverley Beauchamp Sent: Wednesday, August 22, 2001 10:15 AMTo: shydrager Subject: Re: fatigue and MSA

Hi Jerry,

For me it is- I guess we are saying that is a given : ) You are right- that should be emphasized. Plenty of people with other diseases don't experience fatigue.

I would sleep a lot more except that it lowers my blood pressure even more. I try to get up after 8 hours, even if I end up back in bed an hour later. Ideally, I would have a nap but since I still work this is not possible. So I kind of rest all evening before I go to sleep. I experience yawning fits and extreme sleepy dizziness throughout the day. I could nod off without problem any time. And it is not laziness! And I do drink coffee, salt, sugar etc.

The second fatigue is body exhaustion- as if I ran five miles and every little bit of me is spent and worn and achey. The third type is more like metal block/confusion. This is less frequent for me but does happen when I persistently overwhelmed with pain, infection and MSA symptoms. The forth type of exhaustion is from taking care of the disease- the pills, the appointments, the bladder and bowel regimens, etc. The fifth, is pain is exhausting and I experience a lot of pain.

Just taking care of myself is a challenge when I am not doing so hot (which is at least weekly), let alone trying to accomplish what I want to do and or spend time with friends and family. I come home and drop- weekends are for catching up on sleep and exercise and maybe light housework. I have lost many friends and family members who do not understand why I have to cancel on them so often, I could not possibly be sick so often. Few people do understand- and I try to keep the perspective that I have to think about myself sometimes and do what is good for me- that if they do not understand then they do not really care. That is the toughest part.

What does your brother say about exhaustion?

Waverley

>>> Jerry@... 08/22/01 10:54AM >>> I rarely see any mention of fatigue as a significant element of how most of you report your situations with regard to MSA; however, that seems to be one of the most significant aspects of my brother's efforts to deal with this condition. So much of what he does is impacted by how much fatigue he experiences. He is trying to work 4 days a week still, but it appears that the fatigue more than the ataxia or other disabling aspects of MSA is challenging him. One of his chief symptoms or complaints even before diagnosis was this fatigue which he describes as just draining him of all energy reserves. Just wondering, do others have similar problems with fatigue? Jerry Cash If you do not wish to belong to shydrager, you may unsubscribe by sending a blank email to shydrager-unsubscribe

[Guest guest]

Jerry,

Warren had fatigue problems after any major effort, or long sitting

situations, tried p/t and that really knocked him out. If we had company

one day, the next he was either resting or sleeping all day. I really

believe it goes along with MSA.

S.

fatigue and MSA

> I rarely see any mention of fatigue as a significant element of how most

of

> you report your situations with regard to MSA; however, that seems to be

one

> of the most significant aspects of my brother's efforts to deal with this

> condition.

>

> So much of what he does is impacted by how much fatigue he experiences.

He

> is trying to work 4 days a week still, but it appears that the fatigue

more

> than the ataxia or other disabling aspects of MSA is challenging him.

One

> of his chief symptoms or complaints even before diagnosis was this fatigue

> which he describes as just draining him of all energy reserves.

>

> Just wondering, do others have similar problems with fatigue?

>

> Jerry Cash

>

> If you do not wish to belong to shydrager, you may

> unsubscribe by sending a blank email to

>

> shydrager-unsubscribe

>

>

>

>

>

[Guest guest]

, I too suffer from fatigue but have always been a natural night person. Yes, it is a strain on others but realize he probably feels more lively then as do some in the morning. It is a good feeling and hard to go to bed. Are there things he can do independently at that time like read or watch tv? Just an idea.

Waverley

>>> cav285@... 08/22/01 08:22PM >>> Jerry, My dad has significant problems with fatigue and has for several years. He is at the point now where he falls asleep many times throughout the day. Oftentimes, this is while he is eating which is really scary. My mom, of course, tries to watch for this and wakes him if it happens. Hard to be there every moment though. I think this daytime fatigue is tied to his sleep disorder too. He insists on staying up really late and always has been that way. Very frustrating as my mom must stay up to get him to bed - which takes a very long time. We've tried everything we can think of to get him to go to bed earlier. If anyone has any ideas send them our way. If you do not wish to belong to shydrager, you may unsubscribe by sending a blank email to shydrager-unsubscribe

[Guest guest]

Thank you, Waverley, for that reply. Yes, I think he does have more energy

then - at least creative energy. He, like myself and my four sisters, is an

artist (an architectural draftsman by trade). I have often noted that my

artist friends love to be up late and get some of their best ideas at that

time. The same has always been true with my dad. And, of course, that's one

of the things I love about him. I just wish that it wasn't so hard on my

mom. He needs her help to get ready for bed and cleaned up. She's an early

bird, up enjoying those beautiful mornings of sun dappled through the leaves

of a lovely birch tree in their backyard!

Jim, thank you too for your suggestion about sleep apnea. It seems like a

reasonable thought given all of the talk on this group lately about it. I

forwarded your email to him.

Sweet dreams,

in MS who is going to bed early tonight because she is moving to LA in

CA this weekend (finally!!!!) and has a moving van coming too early in the

a.m. but not soon enough!!!

[Guest guest]

Ther you go- that's it! Artist. Me too- I paint and do architectural sketches and write poetry etc. My Dad is the same exact way. My family are all artists so they always understood this. Maybe she can put him to bed and then let him do his creative free spirited stuff- even if it is just dreaming of it. She could awaken him early and let him catch a cat nap later on. Realisticly, she is the boss but it would be nice for him to feel this joy. Imagine, if someone told oyu had to paint by numbers instead of creating your own piece- yawn. : )

>>> cav285@... 08/23/01 10:10PM >>> Thank you, Waverley, for that reply. Yes, I think he does have more energy then - at least creative energy. He, like myself and my four sisters, is an artist (an architectural draftsman by trade). I have often noted that my artist friends love to be up late and get some of their best ideas at that time. The same has always been true with my dad. And, of course, that's one of the things I love about him. I just wish that it wasn't so hard on my mom. He needs her help to get ready for bed and cleaned up. She's an early bird, up enjoying those beautiful mornings of sun dappled through the leaves of a lovely birch tree in their backyard! Jim, thank you too for your suggestion about sleep apnea. It seems like a reasonable thought given all of the talk on this group lately about it. I forwarded your email to him. Sweet dreams, in MS who is going to bed early tonight because she is moving to LA in CA this weekend (finally!!!!) and has a moving van coming too early in the a.m. but not soon enough!!! If you do not wish to belong to shydrager, you may unsubscribe by sending a blank email to shydrager-unsubscribe

[Guest guest]

Good luck with your move, that should be a great adventure. Say hello to the beach for me!>>> cav285@... 08/23/01 10:10PM >>> Thank you, Waverley, for that reply. Yes, I think he does have more energy then - at least creative energy. He, like myself and my four sisters, is an artist (an architectural draftsman by trade). I have often noted that my artist friends love to be up late and get some of their best ideas at that time. The same has always been true with my dad. And, of course, that's one of the things I love about him. I just wish that it wasn't so hard on my mom. He needs her help to get ready for bed and cleaned up. She's an early bird, up enjoying those beautiful mornings of sun dappled through the leaves of a lovely birch tree in their backyard! Jim, thank you too for your suggestion about sleep apnea. It seems like a reasonable thought given all of the talk on this group lately about it. I forwarded your email to him. Sweet dreams, in MS who is going to bed early tonight because she is moving to LA in CA this weekend (finally!!!!) and has a moving van coming too early in the a.m. but not soon enough!!! If you do not wish to belong to shydrager, you may unsubscribe by sending a blank email to shydrager-unsubscribe

[Guest guest]

Greetings Marilyn in TN:

You noted:

> Since I can not vouch for your sleeping technique,

> I can only comment on that of my husband with me.

Well, " log " used to describe my technique. It's been years since that's

been the case. I am now lucky to get 4 hours of sleep. Obviously, poor

sleep only amplifies all my symptoms. How I long for the " log days " . ;-)

Regards,

=jbf=

B. Fisher

[Guest guest]

My husband also feels poorer on days following the nights of poor sleep.

Marilyn in TN

>

> Reply-To: shydrager

> Date: Fri, 24 Aug 2001 13:06:31 -0400

> To: <shydrager >

> Subject: RE: fatigue and MSA

>

> Greetings Marilyn in TN:

>

> You noted:

>

>> Since I can not vouch for your sleeping technique,

>> I can only comment on that of my husband with me.

>

> Well, " log " used to describe my technique. It's been years since that's

> been the case. I am now lucky to get 4 hours of sleep. Obviously, poor

> sleep only amplifies all my symptoms. How I long for the " log days " . ;-)

>

>

> Regards,

> =jbf=

>

> B. Fisher

>

>

> If you do not wish to belong to shydrager, you may

> unsubscribe by sending a blank email to

>

> shydrager-unsubscribe

>

>

>

>

>

[Guest guest]

Hi , I appologize for not responding to this letter sooner- i sort of lost it among the others. Sorry!

Yes, I think reflexology is wonderful. I do it to myself on my feet and hands and I get professional massages a few times weekly (still cheaper than missing work) - just restarted with a chiropractor once a week and restarted accupuncture (did it for ovarian tumor before). I use a heating pad cause ice seems to make it worse. I also use a tens unit. I do tai chi and yoga daily - and when i can I do weights and eliptical machine and walk as mucha s possible.

The pain is excrutiating when it hits- I need crutches to walk and it goes up and down my spine like fire and ice, and to other parts like thinghs, knees, upper arms. I get meningitis (non viral) - just brain inflammation atleast once a month which I am put on high does prednisone etc. Other times it is like rug burn or or numbness orstinging or weakness or pins and needles or like walking through the ocean. It fluctuates and is not consistent. I do know it is worse at night. But I also get this in my arms not just legs. the spine and ribs are excrutiating. This flares for often days at a time atleast twice a week.

They think it is part autoimmune ( they thought it was multiple sclerosis but have not found the signs yet. They are considering amyloidosis and some other things but are trying to do as little of tests as possible- I have been through a lot.) They know I have MSA but have not found what they think is the root for me - they know it is primary but do not know if it just autoimmune or if it is just shy-drager.

People often have so many other things going on it is hard to tell- like your dad's knee. My bladder probs are bboth autoimmune and neuro and I have endometreosis there. UGH!

I am really hoping the accupunture and chiro help out- atleast with soemthing. I became seriosuly toxic on neurotin a few weeks back and had to be taken off all my meds ( I lost ability to walk and was the sickest ever.) I don't even get relief anymore. I am on .8 mgs of that and was on 1600 neurotin and 30 of midodrine. SO now I am on 300 neurotin when it is not too bad and more to push- same with with florinef. .4 and rely mostly on gatorade, being super super careful and exhausted, salt etc. - and forget the midodrine. I can not take any more funny sensations and I found no blood pressure benefit.

I would love to hear more about your dad's great experience with accupuncture. Can he do reflexology himself? Or his caretaker?

Hope you are well!!!!

Waverley

>>> cav285@... 08/22/01 08:53PM >>> Waverly, I am sorry that you have lost friends who have not understood the difficulties you face with this disease. I think it's one of those learning experiences (learning to be more tolerant, compassionate, aware) that we face as we are confronted with the challenges of a disease. I never gave much thought to the struggles of life with a disability until my dad got sick. Now I evaluate every space based on whether it is accessible or not. I am wondering about the pain you and others have with MSA. My dad rarely mentions having pain. Have you tried reflexology for pain? I ask for a couple of reasons: 1) I just bought a book on reflexology and am trying to figure it out; and 2) I have learned by accident that when I have a headache on the right side of my head I can completely cure it by putting pressure on my left second toe (or was it the middle toe?) at the tip. I once had a reflexology foot massage and the therapist put pressure on my toe tips by squeezing them. So, when I had this killer headache a few weeks ago I started playing with my feet :-) and voila! found the spot. It was quite amazing. So, I bought a book and will try to learn. Finally, my dad has had some pain relief from accupuncture. I think the pain was from old knee and ankle injuries - not MSA, but still the relief was there. He has also had some relief with bladder control issues from the accupuncture. Hope today was a pain free day for all of you, If you do not wish to belong to shydrager, you may unsubscribe by sending a blank email to shydrager-unsubscribe