Fatigue: Ya know how chronic fatigue comes... - My MSAA Community

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Fatigue

Midgey_Midge06 profile image
41 Replies

Ya know how chronic fatigue comes with MS? Well. Since my recent surgery and then my adventure with pneumonia in the hospital for 6 days - i have become abnormally exhausted. I havent done dishes in 2 weeks. All i have the strength for is to shower before the nurses come check on me.

Anyone else ever have this issue?

I have uppers i can take but then i end up with crazy bad insomnia off half my reg dose!

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Midgey_Midge06
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41 Replies
Doubled51 profile image
Doubled51

Unfortunately in my experience one usually comes with the other. Fatigue is absolutely my biggest enemy so far on this journey we know as ms. Good luck and God bless.

Donnie

CalfeeChick profile image
CalfeeChickCommunityAmbassador

Your body is try to recuperate from illness and fight MS at the same time. Do your best to keep up your nutrition and never forget you are!! an MS WARRIOR!!

I have incredible fatigue even with the Modafinil "uppers". I also take 8 - 300 mg Gabapentin daily & Baclofen 10mg 2a Day. It seems like I'm popping pills every 2-3hrs then try to find energy to do my basic personal care and maybe a household chore. I will be having a discussion with the doc at my Oct. 17 appt. I realized this morning that in a week, I've only been off the property 1 time to walk 1 block to Walgreens & back. Stay strong, never give up! 😊 Lynn

Nom_De_Plume profile image
Nom_De_Plume in reply toCalfeeChick

Hi Midgey_Midge06 , I agree with CalfeeChick. I suspect this 2 week bout of worse-than-usual exhaustion is just your "MS body" needing more time to recover from your surgery and subsequent pneumonia. Doesn't surprise me at all. (Sorry 😟)

It took me 2 weeks to recover from a vacation I took last spring. I thought I was going to just bounce back after a day or so (notice my "pre-MS mindset"), but, even with rest, I just didn't feel right. I realized it was the MS and I just needed to give myself time.

Since you had surgery PLUS pneumonia, I would think you'd need much more than the 2 weeks I needed.

It certainly could be caused by other things, but that's my guess!!

jodigirl750 profile image
jodigirl750 in reply toCalfeeChick

Hi CalfeeChick! I take Gabapentin as needed for itching episodes. I have friends and doctors that say it causes drowsiness. It does none of that to me! Thank goodness because the itching episodes are chronic but in isolated areas. Strange, but isn't that MS... My question is, do you take Gabapentin to help with the fatigue? I have to nap daily and it really interferes with getting anything done in my life. I'm either fatigues or to "tired" after napping... it seems my small window of mornings is my only productive time... :-) Jodi

CalfeeChick profile image
CalfeeChickCommunityAmbassador in reply tojodigirl750

I take the gabapentin to deal with numbness and tingling. When I went numb last year, I was numb/tingling from ribs down.(thought I'd had a stroke) Gabapentin keeps it mostly below the knees. I take Baclofen( muscle relaxant) also cause drowsiness, for leg cramps. doc calls them spasms, I call them severe charlie horses. I even have the charlie horse in 3 toes on my right foot. OUCH! The modafinil, which is generic for Provigil, is the supposed upper to help with focus and fight fatigue. I actually slept 7hrs last night, except I woke up this morning with a severe "spasm" in my left leg. Yuk.

jodigirl750 profile image
jodigirl750 in reply toCalfeeChick

Yuk is right! Guess I'll stick with the Gabapentin when I stress too much and start massively itching! I'm so sorry to hear about those spasms. That sounds horrible!!!

Doubled51 profile image
Doubled51 in reply toCalfeeChick

CalfeeChick that sounds familiar. I take my modafinil and 7 300mg Gabapentin daily and I think

Donniebaclofen is in the near future. So far the modafinil is helping but the Gabapentin has lost its magic. Dr said last time that we might have to add something to it. I just want the pain in my shoulders and the tingling and numbness in my feet and legs to stop.

Donnie

CalfeeChick profile image
CalfeeChickCommunityAmbassador in reply toDoubled51

You sound much like me. I upped the GABA from 7-8 quite some time ago. I started GABA in January at 3 a day. Yes, they have lost their magic. The modafinil helped allot at first. I have now started taking a half tab mid morning and mid afternoon and still feeling like I'm fighting my way through fatigue. I take the Baclofen mid-morning and mid-afternoon. I laid down in the recliner and slept right through dinnertime. Got up, got ready for bed and back asleep by 10pm. I think the Baclofen is not strong enough because I'm still having Charley horses in both legs and some toes.

The Charlie horses are painful,😩 the rest of what I feel is just really uncomfortable. ☹️

Doubled51 profile image
Doubled51 in reply toCalfeeChick

I started Gab 3 daily in April gone up every month since then to 7 2 weeks ago. Modafinils works pretty good so far. And I take amantadine. I have so much trouble sleeping that he's doing a study on my sleep log before he does anymore about fatigue. Plus I wear the fentanyl patch 3 10mg percocets Doxepin and restoril and still can't sleep so I'm stuck where I am for now.

Donnie

Nom_De_Plume profile image
Nom_De_Plume in reply toDoubled51

@Doubled51 😩 that's awful!! I hope they can figure it out and find a solution!

CalfeeChick profile image
CalfeeChickCommunityAmbassador in reply toDoubled51

That's allot of meds! I sure hope you are able to find the combo that works best for you. With all the research, I think they are still learning that each individual needs individual treatment for ms. Blessings

Doubled51 profile image
Doubled51 in reply toCalfeeChick

@calfeechick. I hope my ms Neuro can find a happy medium somewhere. Maybe now that he's taken over my sleep and my ms he can find something. He just got the first download on sd card from my cpap machine. Thinks sleep apnea might be causing some of my insomnia and fatigue. He adjusted my machine pressure. We'll find out in Oct which direction we go.

Donnie

ssdw1958 profile image
ssdw1958 in reply toCalfeeChick

I have to let you know I was on Baclofen and my legs and feet were swollen so bad if I didn't put my shoes on right after I took a shower I couldn't get them on by myself. My doctor that I had a blood clots so they sent me to the hospital to have a scan they said I didn't. So I googled Baclofen and it said it caused swollening and would make you tired. So I contacted my Doctor and he said I could get off of the Baclofen. Which I did an it took about three days and the swelling went away I still have some swelling. I would talk to your doctor about what is going on with you. Don't get off of any medicine with out your doctors knowing about it. Good luck.

CalfeeChick profile image
CalfeeChickCommunityAmbassador in reply tossdw1958

I fortunately haven't had any swelling. And I was advised about it might make me drowsy. It just isn't really stopping the spasms (charley horses) in my legs and right foot. Either I need a higher dosage or different med. I have always had a very high tolerance of pain and of pain meds and maybe that may be carrying over to these meds. Before MS, I could take 5mg vicodin and ride my bicycle for miles and miles..

ssdw1958 profile image
ssdw1958

I had pneumonia about three years ago I was in the hospital for 8 days and out of work for 6 weeks. I had come out of the hospital the next day and took a long shower and you are so right I was exhausted when I came out my husband was talking with the nurse that was there to check on how I was doing. She looked at me and she said I didn't need to take a shower right away I could have waited until I was stronger and I looked at her and said yes I did. But please take care of your self and if you have to go back to the doctors find someone who can drive you.

I was happy to find a neighbor who would and could drive me too and from my doctors appointments.

Take it easy.

CalfeeChick profile image
CalfeeChickCommunityAmbassador in reply tossdw1958

Good advice. relative and good friends are blessings, especially in times of need.

jennie62 profile image
jennie62

Midgey_Midge06

Fatigue and exhaustion really stink. Hope you're feeling better soon! I know how you feel because all I want to do is sleep all the time except at night then I have insomnia.

Leave the dishes take care of you! You're more important!

Jennie

erash profile image
erash

Midgey_Midge06

Sending us all pep pills (that don't cause insomnia of course)☕️

I have the post-hurricane exhaustion for the past week.

I tend to do ok during a crisis but crash in the week or 2 following. It's why I'm reluctant to take a vacation 🛩🏝

Hope u r feeling better 👍

CalfeeChick profile image
CalfeeChickCommunityAmbassador in reply toerash

You are a warrior for sure. I think I'd rather be in California and endure an earthquake rather than an Hurricane.

erash profile image
erash in reply toCalfeeChick

Idk CalfeeChick

At least u get some warning with a hurricane

I've only ever been in small quakes in California-felt like a Mac truck hit the hospital. We/buildings were on rollers too.

Juleigh21 profile image
Juleigh21

Midgey_Midge06 I had shoulder surgery exactly 1 year ago today. Originally I was told I could go back to work in 3 weeks but the surgery ended up being a lot more extensive than the original doc thought it would be. He changed the three weeks to 12 weeks and between the surgery and the MS and the horrendous fatigue, my job ended. I didn't have pneumonia to battle back from but the fatigue was the worst I ever had. It did pass, but it took a few months. I still have fatigue but nothing like the weeks following surgery.

Midgey_Midge06 profile image
Midgey_Midge06 in reply toJuleigh21

Ya i think surgery is killer when u have MS. Even tho MS is staying stable the whole experience is killing me

4fishylady profile image
4fishylady

Midgey_Midge06 So sorry for all your illness and fatigue. All I can say is that anytime we have surgery by itself, or pneumonia by itself, there is extreme fatigue for a very long time. Add to that the MonSter and you have yourself a very long recovery! I am dealing with just a bladder infection and antibiotic, but have had a pseudoexaserbation of my last flare up with MS, and my head has gone bonkers. I can't drive because of it, nor do much around the house. You are ill. Only do what you have to, and make sure your showers are short and not hot! Allow yourself time to fully recover. Of course, as soon as you can, you need to do "range of motion" exercises, and try and keep your legs as strong as you can, so that you don't become fully disabled. You will be in my prayers.

Midgey_Midge06 profile image
Midgey_Midge06 in reply to4fishylady

Thank you! I have physical and occupational therapists coming to the house 3 times a week and nurses twice a week so i have constant care. The shower thing i am trying but its soooooo draining

ssdw1958 profile image
ssdw1958 in reply toMidgey_Midge06

On the shower do you have a shower chair if not you need to get one I have one it's the only way I can take a shower with out or even with anyone being home

I have to give you a couple of tips. When you get a chair make sure you have one with a back it will prevent you from going over backwards.

Have grab bars

Be very safe.

I know what you mean it is very exhausting to take a shower.

Midgey_Midge06 profile image
Midgey_Midge06 in reply tossdw1958

My fiance installed some heavy duty grab bars for me. They cud hold up an elephant. Or even him (hehehe)

I dont have a back on my shower chair but so far so good.

greaterexp profile image
greaterexp

Midgey_Midge06 , I'm sorry for all you're going through right now. I hope you get to the other side of this quickly and feel better. You're in my prayers.

Midgey_Midge06 profile image
Midgey_Midge06 in reply togreaterexp

Thank you💜

BigMar7 profile image
BigMar7

Hope you feel better soon! 😀😘

SueAB profile image
SueAB

Dear, dear Midgey_Midge06, You have been through so much! Just step back and cut yourself some slack! I had a viral infection in June and July. I slept 10 hours at night and 3-4 hours during the day! It was an effort to take a shower or eat a meal. I was terrified that this was the "new" me! Today, I rode my trike, cleaned two bathrooms and swam laps. Sending good thoughts your way and remember DEGU - "Don't Ever Give Up"!

Midgey_Midge06 profile image
Midgey_Midge06 in reply toSueAB

Thank u. That is very encouraging. There is so much i want to do. But i cant even hold anything in my hand without dropping it.

kdali profile image
kdali

The dishes will be ok. Hooray for he energy to shower! I think you are doing great. Maybe your body is telling you it needs to rest...for about a month.

Midgey_Midge06 profile image
Midgey_Midge06 in reply tokdali

Totally

Roxy444 profile image
Roxy444

It takes me weeks longer than normal to get over "anything" such as vacation, sinus problem.. Even going to Church causes 2 days of recovery due to fatigue.

Last week I had my thyroid removed by surgery and I am SOoo tired. I want to share my story with lemtrada, thyroid risks and what I've been through but I'm too exhausted to go into all the detail. Maybe in a couple weeks...

Hang in there. Your strength will get better. It just takes us longer to get there! 😊

Midgey_Midge06 profile image
Midgey_Midge06 in reply toRoxy444

Thank you! U hang in there too!! 💜

WAshingtongirl profile image
WAshingtongirl in reply toRoxy444

Roxy444 , itnsounds lije you've been through a rough time as well. So sorry to hear this. Praying you are healing well following your surgery and will soon have the strength to share. 💕

WAshingtongirl profile image
WAshingtongirl

Midgey_Midge06 , you've been through a horrific ordeal (not the surgery, but what followed it). Give it time. I find lowering expectations for myself very hard to do. If you're unable to accomplish a task- and it really bothers you to see it undone - hire or ask someone else to help do the things you are unable to do right now. Allow your body to heal. You've come a long way and I pray you continue to heal and strengthen. 💕

Midgey_Midge06 profile image
Midgey_Midge06 in reply toWAshingtongirl

Thank u. Usually i am home alome. My fiancee travels for work. He actually came home early this month to help me. Thats been a huge help

cljones profile image
cljones

@Midgey_Midge06 I hope you get to feeling better real soon. I totally understand about the things that need done but you can't do. You look at them and think if I could only do this but you just haven't got it. It will still be there and it will get done sooner or later by someone..

Midgey_Midge06 profile image
Midgey_Midge06 in reply tocljones

Very true 💜💜

ssdw1958 profile image
ssdw1958

I know that feeling but it does get frustrating sometimes. But it also does get done.

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