I am so glad I found this channel. My fatigue seems to be worse durning the evening after dinner. There are some days when I feel like I could sleep for 23 out of 24 hrs.
@missjenny011 I am really glad you found us as well!! I still don't get the really bad fatigue that others talk about but have had it affect me still. Usually when I am having a relaspe or flare up of old symptoms is when it is the worst. Have you been able to find anything that helps it??
@MSVlogSupport unfortunately I have not been able to find anything that help my fatigue. I try to pace myself throughout the day and take naps when I can. From some of the other videos that I have watched some people seem to think that moderate exercise will help. Despite having this disease I am just grateful to be alive to keep looking for a cure. Stay well and be safe.
Andrea: It wasn't this relapse that had me diagnosed it was the first real one I experienced which happened in May and lasted till almost July.. and I'm on my way to look up your video lol.. I am just buckling under everything and feeling very scared.. as well as scared for my future and knowing that I won't be able to get any help through SSI or disability... I think the US needs a revamp of their help system lol.
=) Thank you a bunch.. and I do have a great support system both on here as well in my personal life.. Just gets a bit hard at times.. It was four days and 3000 mil. They kept looking at me like I was supposed to be magically healed and back to feeling how I did before I was diagnosed.. Ugh.. sometimes I hate hospitals.. I actually did talk to the MS nurse that was assigned to my case about it and she said she would look something up for me due to not having insurances....
I have been just diagnosed with MS.. as of Aug 27th and just found your channel... =) .. I don't think mine has sunk in yet even though I've already had a relapse and had to sit in the hospital for a round of steroids (blah to those, they sucked!!!!) and it kinda helped.. But through it.. my fatigue is still as strong as ever. I have asked for something for the fatigue because with work I just can't do it but yet to receive the meds.. So another waiting game .. ugh lol
@HisbellsEnd Hi, I am so glad you found us here! Sorry that MS is what brought us together, but you have a great group of friends here. You said a round of steroids, was a full course 4 or 5 days? For me they don't always work right away, it can take time to get the full benefits from them. There are several drugs that I know people take for fatigue, have you talked your Neurologist about it? Most people don't understand the kind of fatigue we get, they say well I get tired too!
@MSVlogSupport I went through that when I was working, so I understand what you are feeling. Was it this relapse that got you diagnosed? I did do a rambling 5 part series the the newly diagnosed. Some of it may help, but I do tend to ramble :-)
Hi. Just finding this youtube group of MSers after stumbling upon kezzcass' channel yesterday. Fatigue and cog problems are what really finally took me out of the game. I had to sleep and it would just hit me. It's awful, call it the MS COMA. Tried many different meds, but they left me to jittery and speedy, which I didn't like. I do sometimes take Provigil which helps. Also, finding out I have Obstructive Sleep Apnea and RLS makes a difference cause I'm religious @ using my CPAP.
Yes, not having health insurance limits everything. Yes, the fact is that is so expensive just to walk in to a doctors office and if you need testing that is another story.
Fatigue is one of my most severe symptoms -physical and mental. I have tried amantidine, but it was very hit or miss. Provigil has never been approved by my insurance. Im going to try the ala/alc mix, but havent been able to as yet. Thank you so much for the information about multi-tasking, ive always referred to a broken auto pilot as the reason I can no longer successfully multi-task. It's so good to know there is a name and a reason! Thanks Andrea
@MSVlogSupport The last time I saw her, she told me that provigil was $400 here (I dont know how true that figure is, but I know it is expensive) it would make sense that you'd have to fight tooth and nail to get it from medicaid, although Ive heard some people say theyve gotten it with no problems. Ive been turned away 3 times. Im just going to try the natural stuff and see what happens.
Yes, I have fatigue, I have problems with staying awake at times.. get tired mentally as well. I nap, every day for at least 2 hours... I have found that after being awake for about 5 hours I need to sleep. Also I have problems concentrating, if one person is talking and I hear someone or something else, they cancel each other out.. it's terrible.. I have such a hard time watching tv because I need to have 100% complete concentration with no other audible stimuli.
I am very lucky because I don't have fatigue when I don't have relapses and since I haven't had a relapse in 16 months, I haven't had problems with it. I do get tired, but it's my fault because I do too much! The cranio sacral therapy helps me a lot so I don't have to take any other drug except Tysabri. When I get tired, I get the problems with cognition just like you and I can't multitask very much either.
I am like you, if I over do then I get very tired and sometimes I just fall asleep if I am watching TV on the couch. My last relapse was my first real bout with fatigue but after the steroids it improved and I am back at my baseline.
I've been an advid "exerciser" until this past Dec when my "fatigue" changed from bad to overwhelming, my physical is almost unbearable. I do dishes & sit down, make the bed & sit down, shower & lay down! I've taken Provigil, Nuvigil, & am currently taking Ritalin as well as prescription vitamin D & B12 shots (my levels are very low & stay low). I absolutely cannot "function" like others can. I do not sleep well due to "severe overactive bladder" (with no med relief).
@2muchlivin2do I have heard that the B12 shot is suppose to help, I am sorry that you have to deal with so much and I hope that they can find the right combo to help you get some relief.
The reality is that without a Health Insurance a patient seems to be no where and you do not have the ability to request services at school, etc. At least here in the United States Vocational Rehabilitation does not the power to gather the studies necessary to provide services for a Patient and the Economical Crisis is certainly going to affect patients.
@ecurra19 I know that for me not having health insurance limits anything I can do for myself. It is so expensive just to walk in to a doctors office and if you need testing well it's out of the question for me.
I try to use Ginseng + garlic, and trying to get excersise. when I manage to get good periods with training, it seems like it works for me. Can go weeks whitout fatigue. Yet, just now I have one of this fatiguethings again.. going do the doctor again tomorrow. I get really really really tired, and can sleep the whole day...
@ChaozFear I let someone on my facebook page know about the Gindesng & Garlic figure get the info out it might help someone! Hope the doc can figure out seomthing for you.
I didn't think I had MS fatigue for a while there. (I've always been pretty energetic) But then I realised that I had been falling asleep in my chair nearly every evening. Seems to be when I let my guard down. I use coffee at work for that afternoon slump that comes along (its more than a slump sometimes, more like narcolepsy, but it really works!) I've also realised that muscle/leg fatigue can hang around for days if I overdo it with the walking (so hard not to now I can though!)
@missalgernon I am a CAFFINE person myself so I get it! I understand why you overdo with walking, if I am having a good day I do the same thing and pay the price. But for me at least right now it is worth it. So very happy for you Manda!!!
Recently I noticed my physical & brain fatigue. I'm a very creative hobby model, I used to have shootings like for 6-10 h, these days I can do this like for 2 maybe 4 h, then I get tired, it's not like I have to sleep, I'm just tired and actually I don't sleep well at all. I have very loud neighbours who keep me awake or they wake me up too early, too bad for me.
@Sadistica The multitask things and brain fog is what caused me to lose my job so I understand what you are saying. I play mind games on the computer, practice the piano, anything that make my mind have to do a couple of things at once. I think it's like working a muscule and you make it stronger. At least it has helped me. Thanks!
"Neuroplasticity" - a new word for me, thanks Andrea. Think I've had MS fatigue a few times - it felt like I'd run a marathon, uphill. Couldn't move or think or anything - but I've not had it often. Only on hot summer days, which are rare in England. The rest of the time I'm just lazy - and I was always crap at multi-tasking! Don't know any particular treatment, though a spliff usually sends me to sleep x
Fatigue is the worst symptom for me & it is physical as well as cognitive. I take "Amantadine" for it but, it really doesn't help much. Sleeping doesn't seem to help either. I'll sleep 8 hours at night & then take a 2 hour nap in the afternoon & I'm still tired when I get up & dragging myself around. I'll get tired just getting out of this chair I'm sitting in & then have to sit back down again, lol.
I am so glad I found this channel. My fatigue seems to be worse durning the evening after dinner. There are some days when I feel like I could sleep for 23 out of 24 hrs.
missjenny011 8 months ago
@missjenny011 I am really glad you found us as well!! I still don't get the really bad fatigue that others talk about but have had it affect me still. Usually when I am having a relaspe or flare up of old symptoms is when it is the worst. Have you been able to find anything that helps it??
MSVlogSupport 8 months ago
@MSVlogSupport unfortunately I have not been able to find anything that help my fatigue. I try to pace myself throughout the day and take naps when I can. From some of the other videos that I have watched some people seem to think that moderate exercise will help. Despite having this disease I am just grateful to be alive to keep looking for a cure. Stay well and be safe.
missjenny011 8 months ago
DX IN 04 I oxidate my muscles by breathing something I learned in boxing it really works...in through ur nose and out ur mouth. try it
williamr5101 1 year ago
@williamr5101 Thanks for the tip, I am trying to do some easy yoga and it focused on breathing. So I guess I am on the right track!
MSVlogSupport 1 year ago
Andrea: It wasn't this relapse that had me diagnosed it was the first real one I experienced which happened in May and lasted till almost July.. and I'm on my way to look up your video lol.. I am just buckling under everything and feeling very scared.. as well as scared for my future and knowing that I won't be able to get any help through SSI or disability... I think the US needs a revamp of their help system lol.
HisbellsEnd 1 year ago
=) Thank you a bunch.. and I do have a great support system both on here as well in my personal life.. Just gets a bit hard at times.. It was four days and 3000 mil. They kept looking at me like I was supposed to be magically healed and back to feeling how I did before I was diagnosed.. Ugh.. sometimes I hate hospitals.. I actually did talk to the MS nurse that was assigned to my case about it and she said she would look something up for me due to not having insurances....
HisbellsEnd 1 year ago
I have been just diagnosed with MS.. as of Aug 27th and just found your channel... =) .. I don't think mine has sunk in yet even though I've already had a relapse and had to sit in the hospital for a round of steroids (blah to those, they sucked!!!!) and it kinda helped.. But through it.. my fatigue is still as strong as ever. I have asked for something for the fatigue because with work I just can't do it but yet to receive the meds.. So another waiting game .. ugh lol
HisbellsEnd 1 year ago
@HisbellsEnd Hi, I am so glad you found us here! Sorry that MS is what brought us together, but you have a great group of friends here. You said a round of steroids, was a full course 4 or 5 days? For me they don't always work right away, it can take time to get the full benefits from them. There are several drugs that I know people take for fatigue, have you talked your Neurologist about it? Most people don't understand the kind of fatigue we get, they say well I get tired too!
MSVlogSupport 1 year ago
@MSVlogSupport I went through that when I was working, so I understand what you are feeling. Was it this relapse that got you diagnosed? I did do a rambling 5 part series the the newly diagnosed. Some of it may help, but I do tend to ramble :-)
Nice to meet you!
Andrea
MSVlogSupport 1 year ago
How many of you are on LDN? I just heard about this drug through another video I watched. Do we kow what and how this drug works?
Thanks
support2gether 1 year ago
Hi. Just finding this youtube group of MSers after stumbling upon kezzcass' channel yesterday. Fatigue and cog problems are what really finally took me out of the game. I had to sleep and it would just hit me. It's awful, call it the MS COMA. Tried many different meds, but they left me to jittery and speedy, which I didn't like. I do sometimes take Provigil which helps. Also, finding out I have Obstructive Sleep Apnea and RLS makes a difference cause I'm religious @ using my CPAP.
MaryAnneNagy 1 year ago
@MaryAnneNagy So happy your found us! I think a lot more of us have sleep apnea in general. Thanks for your input!
MSVlogSupport 1 year ago
Andrea I take it easy. I have a lot of respect for my body.
ecurra19 1 year ago
The Y chromosome that makes me male inhibits multitasking exponentially more than multiple sclerosis :)
Good video.
Great to see you, Andrea!
Mark
irishbear76 1 year ago
@irishbear76 Sure you had to go all medical on me and defend men LMAO!!! Missing you Mark!!
MSVlogSupport 1 year ago
Yes, not having health insurance limits everything. Yes, the fact is that is so expensive just to walk in to a doctors office and if you need testing that is another story.
ecurra19 1 year ago
Fatigue is one of my most severe symptoms -physical and mental. I have tried amantidine, but it was very hit or miss. Provigil has never been approved by my insurance. Im going to try the ala/alc mix, but havent been able to as yet. Thank you so much for the information about multi-tasking, ive always referred to a broken auto pilot as the reason I can no longer successfully multi-task. It's so good to know there is a name and a reason! Thanks Andrea
Reluctantwriter7 1 year ago
@Reluctantwriter7 Glad to have helped in some way, I don't understand why insurance won't cover a drug that your doctor feels will help?
MSVlogSupport 1 year ago
@MSVlogSupport The last time I saw her, she told me that provigil was $400 here (I dont know how true that figure is, but I know it is expensive) it would make sense that you'd have to fight tooth and nail to get it from medicaid, although Ive heard some people say theyve gotten it with no problems. Ive been turned away 3 times. Im just going to try the natural stuff and see what happens.
Reluctantwriter7 1 year ago
Yes, I have fatigue, I have problems with staying awake at times.. get tired mentally as well. I nap, every day for at least 2 hours... I have found that after being awake for about 5 hours I need to sleep. Also I have problems concentrating, if one person is talking and I hear someone or something else, they cancel each other out.. it's terrible.. I have such a hard time watching tv because I need to have 100% complete concentration with no other audible stimuli.
By the way, you look fabulous!!
SanSandySandra 1 year ago
@SanSandySandra Thanks San! I know that this is a huge problem for so many and I know that I am lucky I don't get it as bad.
MSVlogSupport 1 year ago
Dear Andrea,
I am very lucky because I don't have fatigue when I don't have relapses and since I haven't had a relapse in 16 months, I haven't had problems with it. I do get tired, but it's my fault because I do too much! The cranio sacral therapy helps me a lot so I don't have to take any other drug except Tysabri. When I get tired, I get the problems with cognition just like you and I can't multitask very much either.
Thanks for talking about this!
Hugs,
Angela
angelusa73 1 year ago
@angelusa73 HI Angela,
I am like you, if I over do then I get very tired and sometimes I just fall asleep if I am watching TV on the couch. My last relapse was my first real bout with fatigue but after the steroids it improved and I am back at my baseline.
MSVlogSupport 1 year ago
I've been an advid "exerciser" until this past Dec when my "fatigue" changed from bad to overwhelming, my physical is almost unbearable. I do dishes & sit down, make the bed & sit down, shower & lay down! I've taken Provigil, Nuvigil, & am currently taking Ritalin as well as prescription vitamin D & B12 shots (my levels are very low & stay low). I absolutely cannot "function" like others can. I do not sleep well due to "severe overactive bladder" (with no med relief).
2muchlivin2do 1 year ago
@2muchlivin2do I have heard that the B12 shot is suppose to help, I am sorry that you have to deal with so much and I hope that they can find the right combo to help you get some relief.
MSVlogSupport 1 year ago
The reality is that without a Health Insurance a patient seems to be no where and you do not have the ability to request services at school, etc. At least here in the United States Vocational Rehabilitation does not the power to gather the studies necessary to provide services for a Patient and the Economical Crisis is certainly going to affect patients.
ecurra19 1 year ago
@ecurra19 I know that for me not having health insurance limits anything I can do for myself. It is so expensive just to walk in to a doctors office and if you need testing well it's out of the question for me.
MSVlogSupport 1 year ago
I try to use Ginseng + garlic, and trying to get excersise. when I manage to get good periods with training, it seems like it works for me. Can go weeks whitout fatigue. Yet, just now I have one of this fatiguethings again.. going do the doctor again tomorrow. I get really really really tired, and can sleep the whole day...
ChaozFear 1 year ago
@ChaozFear I let someone on my facebook page know about the Gindesng & Garlic figure get the info out it might help someone! Hope the doc can figure out seomthing for you.
MSVlogSupport 1 year ago
I didn't think I had MS fatigue for a while there. (I've always been pretty energetic) But then I realised that I had been falling asleep in my chair nearly every evening. Seems to be when I let my guard down. I use coffee at work for that afternoon slump that comes along (its more than a slump sometimes, more like narcolepsy, but it really works!) I've also realised that muscle/leg fatigue can hang around for days if I overdo it with the walking (so hard not to now I can though!)
missalgernon 1 year ago
@missalgernon I am a CAFFINE person myself so I get it! I understand why you overdo with walking, if I am having a good day I do the same thing and pay the price. But for me at least right now it is worth it. So very happy for you Manda!!!
MSVlogSupport 1 year ago
Recently I noticed my physical & brain fatigue. I'm a very creative hobby model, I used to have shootings like for 6-10 h, these days I can do this like for 2 maybe 4 h, then I get tired, it's not like I have to sleep, I'm just tired and actually I don't sleep well at all. I have very loud neighbours who keep me awake or they wake me up too early, too bad for me.
Sadistica 1 year ago
Also I can't concentrate for long on things, makes me tired.
So therefore I can't go back to my old job (production assistent) cause I'd fuck it up ;) What do I do about it? Nothing. No meds.
Much love to You Andrea ♥
Sadistica 1 year ago
@Sadistica The multitask things and brain fog is what caused me to lose my job so I understand what you are saying. I play mind games on the computer, practice the piano, anything that make my mind have to do a couple of things at once. I think it's like working a muscule and you make it stronger. At least it has helped me. Thanks!
MSVlogSupport 1 year ago
"Neuroplasticity" - a new word for me, thanks Andrea. Think I've had MS fatigue a few times - it felt like I'd run a marathon, uphill. Couldn't move or think or anything - but I've not had it often. Only on hot summer days, which are rare in England. The rest of the time I'm just lazy - and I was always crap at multi-tasking! Don't know any particular treatment, though a spliff usually sends me to sleep x
lovingfatalist 1 year ago
@lovingfatalist I think men in general are not as good as women at multitasking LOL! What is a spliff?? A cocktail perhaps?
MSVlogSupport 1 year ago
@MSVlogSupport ha ha, no, alcohol doesn't agree with me - maybe you'd call it 'joint'? ;-)
lovingfatalist 1 year ago
@lovingfatalist Or Mary Jane, Chronic, and a whole list of names ;-)
MSVlogSupport 1 year ago
Fatigue is the worst symptom for me & it is physical as well as cognitive. I take "Amantadine" for it but, it really doesn't help much. Sleeping doesn't seem to help either. I'll sleep 8 hours at night & then take a 2 hour nap in the afternoon & I'm still tired when I get up & dragging myself around. I'll get tired just getting out of this chair I'm sitting in & then have to sit back down again, lol.
damizia 1 year ago