Depression and Fatigue: Hello my name is... - My MSAA Community

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Depression and Fatigue

nicoly3467 profile image
42 Replies

Hello my name is Nikki and this is my first post on your website. I’ve had MS since Nov 2013. It has been a challenging, uphill battle sometimes with several relapses and dealing with the daily fatigue. Thankfully I have recovered from each relapse for the most part and have been on OCrevus since last summer. I’ve been having more depression lately and I think it’s causing my MS fatigue to worsen everyday. I get up at 7:00 am and am completely tired by 9:00 am. This is unusual for me. Does anyone have depression with MS? The most frustrating symptom for me is the severe fatigue I have daily. Thanks!

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42 Replies
ssdw1958 profile image
ssdw1958

Hi Nikki, my name isSandra I also have the monster called MS I was diagnosed in 2004. Yes depression comes with MS it takes a while to deal with the fact of being told you have MS. I still have times of depression and it is now because my legs don’t work like they use to so I do get a little sad about that. But I am also taken Ocrevus and It to be thhelping my feet. So that helps me out. But this site is a good place to read what’s going on or to join in. But just remember we are not doctors but everyone here has there own experiences.

ssdw1958

nicoly3467 profile image
nicoly3467 in reply to ssdw1958

Thanks Sandra-appreciate your reply. I’m very sorry your legs are not working well and that must be hard. I think you said OCrevus has helped with your feet, is that right? It’s nice to hear you are also on OCrevus! It’s a good medicine. It has helped improve my balance, walking and physical stamina at times. But surely not lately, the depression has been kicking in pretty strongly.

Kenu profile image
Kenu

Welcome to our crazy 😜 group of MSers. I have been on Cymbalta for depression for twenty three years now. Just after I was diagnosed with MS. Has worked great for me and yes I think depression does effect your MS and fatigue also. I have always been a morning person and I have to pace myself thru the day. Especially the last couple of years. I try to stay going through the day, but by seven I’m done ✅. Sometimes 5pm I am laying in bed 🛏 reading and get up at 7 to eat and back to bed. Sounds like a doctor visit for antidepressant and something for fatigue 🤷🏼‍♂️. Good luck and hang in there and let us know how your doing 🤷🏼‍♂️👍🙏😉🐾 Ken

nicoly3467 profile image
nicoly3467 in reply to Kenu

Hi Ken-thanks for your reply and your support. So glad to hear Cymbalta has worked well for you! I have been taking Trintillix (new antidepressant) got switched from Lexapro last Sept. Sometimes I think it’s been fine, but sometimes not sure. I’ve had a few big stressors lately too so that doesn’t help my MS, energy or depression I’m sure, but noticing a big difference in my mood and feeling much more sad lately so going to my doctor again next week to ask about this. The MS fatigue itself is extremely frustrating (as most people w/Ms know) and affects my whole day. As of two days ago, I reached my “wits end” about it. There are usually things I want to do during my day and sometimes fun things, but when the fatigue dragon 🐉 comes on-I feel too weak, lose my motivation and can’t do much except lie down. Usually with my normal MS day, I don’t have to lie down until about noon or 1 pm and again before dinner or after dinner so this extreme fatigue has been coming on way too early lately. Thanks for your kindness! Nikki

Royjr profile image
Royjr

Hello Nikki, fatigue is a very common symptom of MS. I have the same fatigue time frame that you have. By the way “welcome”😀.

nicoly3467 profile image
nicoly3467 in reply to Royjr

Thanks for the welcome Royjr. So do you start getting more tired about two hours after you get up in the morning?

Royjr profile image
Royjr in reply to nicoly3467

If I do anything within 2 to 3 hrs, I’ll be through.

nicoly3467 profile image
nicoly3467 in reply to Royjr

Yea, that’s how it has been for me lately. It stinks! Are you fatigued the rest of the day?

Royjr profile image
Royjr in reply to nicoly3467

If I don’t take a break, but I try to rest for at least couple hours

itasara profile image
itasara in reply to Royjr

I do get fatigue now and then but I’m more on motivated than I am fatigue! I’m real night type person so I can sleep in the morning later and then I’m up till quite late at night but that’s how I’ve always been. Some say that’s not healthy but I do get usually five or six hours of sleep and it works. Except when I came of taking hormone therapy and my life is miserable so I couldn’t sleep I was somewhat depressed I was miserable. So I went back on it every other day instead of every day and now I’m back to feeling normal as I can be.

janetb1968 profile image
janetb1968

Hi Nikki nice to meet u from across the pond 😊😊😊 I was diagnosed with very active RRMS in Dec last year. But I think I've had it a lot longer but had no symptoms till last year. Ur pic of yourself is lovely by the way. I'm a staff nurse in the good old NHS here in England and I'm hoping to go back to work but have to have various meetings this month so will see. The fatigue I agree is awful and it strikes me "out of the blue" daily so I understand how u feel with that one. Hope ur feeling ok and please keep in touch xxxxx

nicoly3467 profile image
nicoly3467 in reply to janetb1968

Thanks Janet for the welcome and the nice compliment. Wow, you are across the sea! My hat goes out to you for thinking about going back to work. I can’t imagine working again with MS and all my symptoms, especially my energy level. I had to quit work when I was diagnosed with RRMS 5 years ago, because I was feeling horrible and was much worse then because I did not start treatment yet. Best wishes if you decide to go back to work!

janetb1968 profile image
janetb1968

Going back to work is a very big IF! We will have to see if the powers that be will let me and the other alternative is early retirement.......not sure about that one! 🤔🤔🤔🤔🤔🤔

ssdw1958 profile image
ssdw1958

Thanks yes the Ocrevus is working on my feet.

ssdw1958

nicoly3467 profile image
nicoly3467 in reply to ssdw1958

That’s wonderful!

greaterexp profile image
greaterexp

Welcome to a great family. I’m glad you’ve found us, and I hope having a place to unload a bit with people who understand will be helpful. I’m very glad you are addressing your depression.

Keep us posted on how you’re doing.

nicoly3467 profile image
nicoly3467 in reply to greaterexp

Thanks!

Amore55 profile image
Amore55

Welcome! We are so glad you found our family! I can understand how you feel. I use a wheelchair on bad days, but try to just walk most days. The fatigue is just overwhelming. I must confess that I spend a LOT of time in bed. It is so difficult now to get stuff done. But this past week was really good, I got out of the house almost everyday. I overdid it, but I had fun 😜!! Now...depression. I suffer so severely with it. It is like I am in a black hole and struggle every day to get out of it. But I never stop fighting. I take meds and they help. My family is very supportive. Occasionally I get a day when I actually feel suicidal, I can’t believe I am sharing this, I never do. On those days, I call some of my kids. I have eight biological and three step kids that are like my own. They talk me down. And of course my hubby is awesome. Sorry for the long post, just wanted you to know that some of us really understand. But you must always keep your head held high and remember that you can do this crazy thing called life! Love, Kelly xx

Jesmcd2 profile image
Jesmcd2CommunityAmbassador in reply to Amore55

And call for help Amore55 always! 💕

J🌠

nicoly3467 profile image
nicoly3467 in reply to Amore55

Thanks so much for sharing your story with me! I am beginning to feel I’m not alone with my depression. I have just been feeling awful last few weeks and it’s been up and down everyday. Sometimes I’m in a pretty good mood for a while and other times like today that “black hole” as you said is where I am at. Depression always feels like I am stuck! Even tho I’ve had it before a few times-I can catch it earlier now, which is good. It helps me to be out with people sometimes and to make new friends. I’ve done some of that; however I don’t have a solid friend (acquaintances yes) here yet in Arizona. So this makes me sad, but working on branching out. We moved to Arizona less than 2 years ago from CA because of my hubby’s job transfer so I left all my family and friends and it has been very hard for me emotionally. I am a stay at home of my 12 year old son who has special needs (high functioning autism, but he’s pretty self sufficient too) anyway being a Mom is a challenging job in itself. I’m thinking about a volunteer job I can do so that’s swirling in my mind to atleast get out of the house to mingle with people a few days a week for a few hours at a time, besides regular doc appointments and my counseling appt. and picking up my son from school. I get sick of all the medical stuff at times, as I’m sure you all know with MS, gotta do this to manage the disease. Thanks!!!

Jesmcd2 profile image
Jesmcd2CommunityAmbassador

Hi nicoly3467 welcome to My MSAA Community, although I wish I was meeting you under different circumstances.

Depression is a big deal for me. As I have been a suffer for years. And it's NOT something I take lightly!

I am so happy that you see it for what it is. And going to talk your Dr about it! 😊 I'm sure they will help.

As far as fatigue goes, there are meds to help with that, I take modnifinil 2xs a day and I'm good till about 630. Then in bed about 7.😂

Welcome again, I love your pic! 🤗💕

Jes🌠

nicoly3467 profile image
nicoly3467 in reply to Jesmcd2

Hi! Thanks for your message. Yes, I take Armodafanil for fatigue 250 mg in the am, which is supposed to last me all day but usually not! Without depression, I get the normal MS fatigue everyday but not until noon or 1 pm where I have to lie down for a while, but lately it’s been showing up 1-2 hours after I wake up and I start feeling really depressed at same time so I think there’s some kind of link here.

bxrmom profile image
bxrmom

Welcome to the family nicoly3467 Depression and fatigues are unfortunately a big part of MS monster we fight daily, some days are better than others. I'm usually in bed and relaxing by 7 pm or so. I will watch my recorded tv programs, play games on my phone, chat with friends on my phone, or do some FB catch up.

Glad you are going to see your doctor about your depression and fatigue. I have had depression for so many years before I was diagnosed with MS though I think I have had MS longer than before being diagnosed in 2006. I currently take Cymbalta and my previous medication, I was at the highest dose I could be on and it no longer worked so it was time for something else.

Good luck at your appointment, keep us updated on how it goes!

Jessie

nicoly3467 profile image
nicoly3467 in reply to bxrmom

Thanks for your reply. Cymbalta I have never tried it, but I will ask my doctor about it, because I’ve been reading and hearing many good things about it from people with MS and even no MS.

bxrmom profile image
bxrmom in reply to nicoly3467

I had never really heard about it until my doctor suggested it to me after I had to switch because there were nowhere else to go with the Pristigue that I had been on for so long and it was maxed out at 100mg. He had tried other meds but they were not working so he suggested Cymbalta and it seems to be working for me. I do have my moments as we all do but for the most part, it is working for me. Good luck.

Jessie

nicoly3467 profile image
nicoly3467 in reply to bxrmom

Happy to hear that for you! I’ll be asking my doc tomorrow about Cymbalta if she’s open to changing it for me. I hope!

bxrmom profile image
bxrmom in reply to nicoly3467

Hope your appointment went well today. Keep us updated when you can.

nicoly3467 profile image
nicoly3467 in reply to bxrmom

Hi! Yes my appt went great today, thanks for asking. My doc prescribed Cymbalta since I told her about the benefits I heard from others who have MS. She was going to first put me on Wellbutrin with Trintillix I take, then right away I asked about Cymbalta that it also helps with nerve pain in addition to depression. She was so cool about it and thought this would be the best thing for me. She knows it helps with neuropathy. Doc advised to take 1/2 Trintillix starting tomorrow am with 1/2 tablet of Cymbalta for one week then discontinue Trintillix and take full dosage of Cymbalta-60 mg. I’ll see what I notice several weeks from now. I hope it works well and I know it takes time for a new antidepressant medicine to kick in to see the benefits, but I feel good about this decision and I’m excited about it.

Thanks for checking back! That was sweet of you. Nikki

bxrmom profile image
bxrmom in reply to nicoly3467

Glad your doc agreed to put you on the Cymbalta. Hope it works out for you. Keep us updated 😉

Jessie

Wizardsmom profile image
Wizardsmom

Hi, I see a neuropsychologist who says that when you have an injured brain, due to MS, depression is very common. For fatigue, she recommends "rest breaks". They are short times of mindfulness or meditation that are done periodically throughout the day. It really helps!

nicoly3467 profile image
nicoly3467 in reply to Wizardsmom

Good to know thanks!

Hi, Nikki,

Definitely talk to a psychologist or psychiatrist, preferably a neuro- psychologist. Keep depression or anxiety under control. This mental conditions can get ahead of you and make you feel worse. I even talked to my pastor, for spiritual guidance and prayer. All of these are interconnected.

nicoly3467 profile image
nicoly3467

Question: Do any of you know if Cymbalta helps with nerve pain too? In addition for depression of course. I thought I read that sometime.

Doubled51 profile image
Doubled51

Yes I take Cymbalta for nerve pain and it work great.

Donnie

nicoly3467 profile image
nicoly3467

Awesome to hear! I would like to lower my Gabapentin daily I take if this will help eventually. I will ask my doc if I can take Cymbalta instead because if it targets mainly depression and nerve pain-I’m killing two “mean minions” with one stone! Yay! Glad it works well for you!

Qt314grl profile image
Qt314grl in reply to nicoly3467

I also found cymbalta to help with my nerve pain. I think it also keeps me from slipping into depression. I also think a neuropsychologist could be useful for you.

Finding the right combo of meds for nerve pain can be tricky. For example, lyrica worked great for me until it didn’t. Then we added in Cymbalta and that took care of it for a while. Eventually we had to add in Trileptal (anti-seizure drug) and nucynta (only opioid that helps nerve pain in my opinion). Plus my baclofen. Even with all these I’m controlled only about 85% of the time with respect to my nerve pain. I’d highly recommend a pain clinic/dr if you don’t already have one.

BTW-welcome! This place definitely keeps me from feeling so alone. It’s also a really nice online community, which can be so hard to find these days...

nicoly3467 profile image
nicoly3467

You have been very helpful. I appreciate it. I’m glad this site has helped you feel comforted and I’m starting to feel that way too with the people who have replied to my question and the concern and care. Oh, I’ve never heard of a neuropsychologist, I mean a regular psychologist yes, whom I see.

Fancy1959 profile image
Fancy1959

Nicoly3467,it's Fancy1959. I would love to Welcome to the Fantastic chat room. You have found a safe place to come and ask questions, voice concern, or simply speak to others who truly understand what you are going through. This chat room is full of the most compassionate, kind, and caring people I have ever met.

Nature of the Beast we all battle is to chip away at our ability to be independent. And to lower our self-esteem I watching body deteriorate before our eyes. Whether it's with extreme fatigue or if it's with stamina or numbness and tingling, loss of agility and our hands and the other thousand one symptoms MS creatively inflicts upon its victims depression is probably one of the number one issues at many people with MS deal. Including myself. The best advice I can give you is to remember that there are so many other people out there that have it so much worse than we do. Please reference and look up a post I made last week whose title is we are lucky to have MS to breed all day responses to that post. It will certainly give you a lot of food for thought.

I too am on Ocrevous. In fact I go in for my third infusion later today. That will be my first full dose of the DMT. I look forward to getting to know you better. There was always much we can learn from one another. The more you reply to post and create post the quicker we will get to know you so do not be a stranger! Make sure you find a post from jimeka, she is our birthday club ambassador. You need to let her know your birthday and a couple fun facts about yourself and she will sign you up for a birthday Club. It just another way you could come the part of our extended family. Until we speak again please take care and I would like you to remember one thing. Together we are stronger!

Renee1967 profile image
Renee1967

Fatigue is my enemy!! I was officially diagnosed in 2014 but I know that it was going on a lot longer than that. I have been in and out of the hospital and rehab hospital so many times due to the fatigue and weakness and flare ups. I use to run 5 miles a day and now I am lucky if I can walk across the room without getting tired. It's very depressing and my depression is getting worse, no matter what I take for it. People around me don't understand it and I feel alone a lot of times and I sit and cry for just one day of relief. Just one day of feeling normal would be fantastic. I am very fortunate to have a man that doesn't hover over me but encourages me. He knows when I need to rest or when I am I am feeling down. He is only with me on the weekends since we haven't got to that point of living together. So, when I am by myself then that is the worse times for depression and anxiety. It's the worse part when I don't have someone to help me make it from one room to the other because I am too weak to walk or my balance is real bad. MS sucks and everyone of us knows that but we have it and I just need to find a way to deal with it. That's the hard part because after 4 years I still think I am going to wake up and it all be a huge bad dream!

nicoly3467 profile image
nicoly3467 in reply to Renee1967

MS sucks sometimes, I agree!

I am sorry to hear about your daily challenges with weakness. That must be so frustrating and very hard to manage.

I can understand about the weakness, because since my bad relapse in May this year-especially last two months I’ve had much more weakness with intense nerve pain to the point of extreme and unbearable. I lie down most of everyday which can be depressing when my mind wants to do fun stuff and can’t. And especially hard when I’m too mentally fatigued to read something or enjoy looking at anything besides the ceiling, lol. This has been emotionally hard for my 13 year old son to see me like this and my hubby even though he’s very supportive and is my caregiver a lot.

I yearned for a better quality of life this year so I’m trying something different than OCrevus infusion I’ve been on for over a year, which didn’t work for me at all.

I just started a new medicine today called Tecfidera-an oral medicine I researched first and like different mechanism how it works in the body compared to other treatments I took so I asked my Neurologist if I could switch and she agreed for my RRMS situation.

Please reach out on here when you can or to me anytime.

Take care, Nikki

CraigS profile image
CraigS

Hi Nikki,

I was going to impart my wisdom, but you clearly have enough to read at this point. Welcome to the family!

We put the “fun” in dysfunctional 😝

Fatigue and depression seem to go hand in hand for me. Also anger and hope. It’s very complicated.

We’re here to help each other along the journey. It sucks, but at least we have company.

nicoly3467 profile image
nicoly3467 in reply to CraigS

CraigS-thanks for the welcome!

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