Hi Friends-it’s been a while since I’ve written but I really need to vent today.
I’m feeling so frustrated with my MS lately. I’ve been adjusting to the new changes that arose since my severe March relapse this year. I was diagnosed in April with SPMS. Everything is much more limited these days what I can do and especially what I want to do. I’m sick of this daily mental and physical fatigue that feels like a tidal wave of weakness coming on. How would you describe your fatigue? Some days seem worse than others and it depends how much I do before the tidal wave hits.
I learned from my OT lady to rest after each activity so I’ve been doing that and it does help to pace myself, but I’m still feeling so frustrated.
I’m grateful I can still walk about 1/4 mile on some days and on a very good day I can walk close to 1/3 mile or 1/2 mile, but those are far and few in between. I’ve also had digestive problems lately, which I started seeing a Gastroenterologist about and I’m following an auto-immune diet which has helped me, but it hasn’t been a cure for my daily symptoms. So as you see I’m being proactive because that’s my nature, but I’m still fed up about it all and how limited everything has to be. When I saw my friends the other day for several hours-the next day I was down and out with fatigue. Uggh. Conversation is tiring too between concentrating what someone is saying and thinking about what I want to say.
Anyway, truthfully I feel kinda depressed and stuck. I have been seeing a counselor too. Does anyone else feel this way?
I reflected this morning and thought perhaps I’m resisting all this too much and I should just roll with it instead which I usually do but lately it’s been such a struggle. Just the sheer dread of this fatigue coming on could take energy away from me. I don’t know.
I could use some encouragement today and hope. Thank you for reading and your help. You always make me feel better.
Nikki
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nicoly3467
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have you talked to your doctor and asked if this is normal after having a bad relapse ???? for it may be normal for getting back to normal ...i haven't had a bad relapse so i can't tell you how it is to be ...are you taking any MS meds to slow it down ??? i have been on different stuff only off maybe a couple of weeks for i was told to always be on something to help slow it down and it has really done the trick and even helped make it easier to walk and enjoy the heat ...was dx in 2004 and i still keeping going , i am not like i was say before 1999 but i do pretty much what i want to do ,i have had to change the way i do things but i am here and going ....i think you really need to talk to your doctor and tell them what is going on...bless your heart i know do know how it does get ya down and want to scream and holler i still have lots of those days for we all wish we never was given this nasty present and can't return it ...but it is our journey now and we have to find ways to deal with it to the best of our ability ...so find someone new if your doctor doesn't help ....love and happiness ...laughter is all so good ...just laugh and it will make others wonder what you know or do they have something wrong with there hair or clothes ...so funny to see their faces ....hahahhahahah...have a wonderful day filled with all kinds of love and happiness that will have you laughing so hard you will need to go and change your clothes....
Hi and thank you for your kind words. Yes, I’ve asked my Neuro about the limitations I have and he said it’s normal for things to be harder and slowing down more with progression. I’m on a good treatment that helps slow down progression and mostly slow down my relapses. I used to get a relapse twice a year and now it’s been around every two years. So that’s quite a difference.
I'm sure all of us whose ms is progressing can relate to your post. It takes time to adjust to the always changing new normal. Glad you are seeing a counselor and continuing with PT/OT. Maybe talk to your neuro about meds for fatigue if it is interfering with daily life? Hugs...
Hi Starlight-thank you for your reply. I take Armodafanil every Am for fatigue and it helps to a degree for part of the day but not for the entire day.
I can definitely empathize with you as far as the fatigue and getting down. I'm still with the relapsing remitting kind so my heart really goes out to you that you have progressed. I have good days and bad days also as far as as much as I can do. I'm glad to hear you're still making an attempt with your walking no matter how far it is. You're right we do sometimes just try to roll with it and try not to get too stressed out and upset but there are also times when we're just fed up with it. On our bad days sometimes just trying to talk ourselves out of feeling bad just doesn't work. And then we get up in a day or two and feel better. It's okay to be frustrated with this MS. I hope tomorrow is a better day for you. 🌹
Thanks Humbrd for your message. It felt good to get out these harbored feelings in this post. You’re exactly right-some days we’re just fed up, but there’s always tomorrow and renewed hope.
Your thoughtful and expressive post shows no signs of the fatigue you describe so well. I hope that's somewhat reassuring. Outside, looking in, I'm in no position to tell you how to manage your suffering, but I think it is normal for all of us to struggle emotionally and psychologically with what we experience as our MS progresses, because everything we learn about this disease is that it will progress. That idea of an inevitable progression, one which we can delay/hold off/slightly mitigate, is perhaps the most difficult part of living with MS. I applaud your ability to continue walking; no matter the distance, it's an accomplishment. You are living proactively, for yourself and your family, for your friends, by seeking help from providers, and coming to the forum friends for support. And, I fully expect, one of these days, you'll be sharing your lovely bird photos once again. This is the sound of virtual applause, bravissimo!
Wow, thank you SO much for your kind words, support and encouragement. I’ll surely continue to share my bird photos and I still do photography as an avid passion which helps keep my sanity dealing with MS, lol. It puts my mind in a different realm when I do it.
I often scroll on by my daily emails, but I logged in here just to reply to you. I often feel like I’m just trying to survive every day, but I want to THRIVE. It’s hard to do when fatigue is one of my worst MS symptoms. I’ve read people can take Vitamin B for more energy, but I rely on Adderall or I can’t function. For the encouragement, I listen to several podcasts (because reading makes me tired). Ten Percent Happier and A Slight Change of Plans are REALLY good! I also listen to positive music (K-LOVE and Lauren Daigle) because I don’t want to get lost in negative thoughts in the silence. When you’re (physically) stuck in a situation, say “I can and I will” to yourself REPEATEDLY. You got this and you’ll help someone else someday.
Thank you for your message and good advice. It means a lot and I’ll try those positive affirmations next time when I get stuck. Today I’m doing better and I’m very grateful. It helped tons to share with group yesterday. I know the emotions are tied with the physical state too.
the fatigue is for real! i can be totally debilitating. i've been on ssdi since i was 27/28 and fatigue was one of the main reasons and unfortunately none of the drugs for fatigue worked for me at all. it can be/is awful and it's the totally the ms. 20 years later and i'm still frustrated with myself for being tired all. the. time.
Oh I’m so sorry to hear that you struggle with fatigue too and I can relate with how debilitating it is. Yesterday was a really bad day, but thankfully today is better in both ways. I think it’s because I shared all my concerns and problems yesterday in the group. I take the maximum dose of Armodafanil for fatigue and it helps for first 2-3 hours in morning, but as of today I decided to split dose in half and take first dose when I wake up and second dose 4 hours later and maybe that helps and why I’m doing better. But yesterday I got a lot off my shoulders too. How is your mobility? I plan to talk to my Neuro about that leg medicine Ampyra and see if it can help me. I’ve definitely lost more strength in my legs since last year and I’m thinking this could be another reason why my body gets fatigued quicker since half of my body (legs) are working overtime. I hope you can find something that can give you some more energy.
that's really good that Armodafanil is helping a little though! yay?! my story is so ridiculous and extreme i don't even like to share it with people. dx. at 23. on ssdi at 27. in nursing home at 32. had hsct at northwestern and got rid of wheelchair, walker, quad cane, single point. walk unassisted. still can't work and everything is tiring but hsct really helped me with the fatigue which i wasn't expecting. i think all my life i've been tired. 😅
How are you doing today nicoly3467 ? I hope a bit better.. you have a lot of people behind you!🤗 I get about not wanting to just go with new symptoms, I fight them to. Until I realize I'm just wasting energy 😐 anyway talk to your Neuro about uping your modafinil? I take it 3 xs a day.. 🤗💕🌠
Hi Jesmcd2-thank you for checking in with me today. I’m doing better emotionally today and physically too so that’s a win! I plan to talk to my Neuro about Ampyra-leg medicine that helps improve strength and endurance if I can try it. I think my body is ready for that now. Oh, I take maximum dose of Armodafanil but still have daily fatigue for over 1/2 the day. Today it’s better though and it helped me a lot to vent. Thanks so much for your concern and care. You’re very sweet!
I've been diagnosed with primary progressive multiple sclerosis recently although my health has been steadily getting worse the fatigue is the one thing which is hardest to cope with I try to battle through as much as possible and rest when I simply run out of steam I'm determined to get the better of this disease and not let it get the better of me so stay strong both mentally and physically and battle through one day at a time my thoughts and prays are with you 😀 peter
oh man.. I feel your pain.. one of the hardest things I have ever had to do in my life was to learn to accept my own limitations. THAT was what this disease has taught me more than anything else. Sometimes I just have to accept that I just cannot do some of the things that I used to do.. and that definitely is VERY frustrating. It doesnt mean I have given up or won't keep trying to find work arounds for some of those things, but there are some things i simply have to accept.. like I can't work in the auto shop throwing 100 pound tires and wheels around all day anymore.. I will likely NEVER be able to do that again.. But I am still on my feet, albeit with crutches and sometimes a walker.. and often need to rest but I am still on my feet. I can no longer drive due to tunnel vision and brief partial complex siezures, but i find that there are friends willing to help get me where i need to go.. Its really all relative.. Yes, i do have limitations, but I try hard not to let them LIMIT me from living my life
Two things that help me when I am exhausted.1. Some days I have pity parties on my own. I cry, scream remember who I used to be. Then when that's over i move on, still tired.
2. I say outloud what i need to do. Like Fill animals water, then change filter, then take garbage out then i get to relax. Silly i know but it gives me a goal with everything i do. Accomplishment means a lot to me.
I used to have a great job. I always say "i used to be somebody, now i am a nobody" i used to manage 100's of people and they knew me. Now they dont. That is hard.
This MS sucks sometimes but there was a very classy lady that i knew when i was first diagnosed she had MS. She said "It could be worse" i say that alot. That keeps me going. Good luck to you.
it's good you're seeking help. think about someone with a cold, let's say a man, since the world stops for them with 'man flu.'😛 they get cranky, don't want to be bothered and want to stay in bed until they feel better...
but what if they never did? chronic illness is like that; no wonder it takes such a toll. my mum and sister every once in a while will look at me with panicked eyes and say, 'i don't know how you do it every day.' b/c it's a lot. my body refuses to do what i want it to and i'm not even old! periodically i temporarily lose it, get really angry and cry a lot.. then i get back to it. it's healthy.🤗
Hi Nikki I hear ya yeah never thought listening to other people talk would be so tiring but it is, I have RRMS & yes I get so tired sometimes I just want to cry. I am on Ocrevus & it seams to really help. I hope you find some relief I'll be praying for you. Mary
It just occurred to me while i was re-reading your post.. Have you had your iron and/or vit B levels checked lately? I was not sleeping well, and had crushing fatigue and even taking Adderall, and/or Dexedrine was not helping. When my blood counts started showing my red counts were on the decline, my doc ordered a more thorough blood panel that included iron levels and vir B levels and sure enough, my iron levels were severely low. This was right after coming off the last DMT I had been on. Now starting on an Iron supplement is not something I wanted to do because the tablets hurt me.. I did find some liquid iron tho and am taking that with a Vit C supplement because your body needs Vit C in order to absorb the iron. So far, so good.. best thing that has happened is that I have started sleeping better! I am actually getting a straight 6 hours without waking up.. before I was waking up every hour or 2 and basically was taking a series of naps at night. Now I am getting some more restful sleep! I am ecstatic! Perhaps talk to your doctor about this to see if any of your levels might be low? you would be surprised what can cause fatigue. Low Iron is one of those things..
I haven’t read the replies but I feel you in your feelings. The fatigue is horrible- mental/physical and I’ve taken to an activity/ rest / activity which sometimes I’me looks like run kids to school, eat sleep and then do work then rest then eat and bed. Sometimes it’s kids, rest, craft, projects, rest, dinner/family time and I go to bed at 9 when my kids do.
Gone are the days of getting less than 7hrs of sleep my goal is 8.5–9 and even then I can still wake up fatigued. When I wake up feeling good I do what I can until nap time - nap time is my savior.
I find that I was so driven, ambitious that now in my life trying to balance myself and the life I have even in a reduced capacity is challenging but my family is supportive but I do feel like I SHPULD BE SBLE TO FO MORE - I just can’t do more or I pay for over doing it.
Finding a way to balance responsibilities and desires with rest is my motto lately as my drs are adjusting my “coattail” of meds/vitamins to give me some mental energy and physical energy but it takes time and slow changes to doses.
Good luck and I think 💭 many of us can/could relate to your frustrations.
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Post 525 Somebody is going to get upset 27 Sep 2019 2
So frustrated
Fatigued and Frustrated 
Frustrated lurker finally posting!
