Extreme Fatique & Pain Following Long Days, Exercise or Yard/Garden Work?

[MaryB]

Does anyone besides me suffer greatly from extreme fatigue and extreme all over body pain from doing any physical activity or having a long day with much concentration? It usually hits me the next day and it last 5-7 days where I am totally wiped out from it. I am not talking running a marathon but some yard work for a few hours that may be a little more strenuous than we have done in awhile?

I also cannot deal with any kind of stress like some of you say you get angry not me, I would rather ignore it if I can and do not complain. ( It took 3 months to get the dishwasher delivered as I would rather not get some $ back than have to make a call the business for the poor service etc.)

I was just wondering- of course I am waiting to the last minute to ask as I have a neuro follow up appointment tomorrow morning. Not sure if this is SAH, Tumor, Stroke or Fibro & CFS or all of them combined.

Thanks in advance, Maryb

Edited May 6, 2013 by Karen
Moved to SAH forum and title edited.

[Guest Mike]

Hi hun as you well know we all put to high a standard on ourselves and our body is saying oi you slow down when we do too much too soon, I also have that problem I can sleep for 72 hours or stay awake for 96 try to take it slowly and do something out of the blue like go to the mall just for the hell of it, or try a game of bowling? my method is going out for a restaurant meal somewhere new or going for a buggy ride to a new part of town, stop feeling low smile and we will smile with you also have you considered to get yourself pampered too like a massage, hair do, treat? put you 1st for a change and feel good inside then the hard times will fade away imho take care hun xx

Edited May 6, 2013 by mikeymack2002

[Sandi K]

Hi Mary, your fibro must play a part in this and it must be difficult understanding which is what.

When I was working I had a lot of pain and exhaustion and all my symptoms were way worse. I felt like I was stuck in mud somedays and my legs hurt all the time. My arms hurt, head, face, a constant ache in the muscles. There was rarely a break from it.

It took months of rest after going off sick before I started having breaks from the aches.

It's been nearly a year now that I've been away from paid work and if I overdo it with volunteering and gardening and any other activities I feel the symptoms creeping back in. The more I ignore them the louder they get. Sore legs, arms, head, face, blurry vision, dizzy, hoarse voice, difficulty understanding conversation, difficulty retaining information, difficulty making decisions and so on.

I feel a bit of something everyday as a reminder I suppose. Retaining information is always a problem for me. It is always with me so I write everything down but it gets worse as I get worn out.

Sandi K.

[Louise]

In a nut shell YES to your question Mary at the moment lots of stress here so tired a lot but when the stress is less and things so-so the fatuge is at bay...

[Wem]

Hi Mary,

I suffer from extreme fatigue that seems to kick in after I have overdone it either from physical exertion and/or high concentration levels. The fatigue seems to build up, I can have one or two days of below par then Wham I am wiped out for 1 or 2 days and I start to build back up again.

When the fatigue hits I can experience dizziness, trembling, heavy aching limbs and lack of coordination and strangely my voice can also become hoarse.

My physical strength is still extremely poor, I cannot garden and only manage to go for light easy walks. This is way less than before the SAH.

I think the solution is to pace myself, but it is not that easy to find the right level and build up in a smooth arc.

Hope your neuro appointment goes well,

Wem

[kpaggett]

M.B.,

I get this too. Mine varies and I haven't been able to figure out why sometimes I can do a whole bunch of things in one day and never pay for it and then there are the other days where every little activity makes me want to rest. It seems there is no rhyme or reason to it for me. Of course, if I way over do it, then I know...but usually I don't do that.

On a good day I might: shop, yoga, go to a class, computer stuff, make dinner, house work.

On a bad day I might: listen to the radio, rest, read

Most days I might: play cards, wash dishes, laundry, walk, computer stuff.

Any one of these days might send me resting depending on something or other that I'm not aware of.

~Kris

[MaryB]

Thanks everyone, does the pain match your fatigue? I get how we all get that wiped out fatigued but does anyone have the pain level as bad as the fatigue? Like your body is really banged up badly?

Thanks maryb

[kpaggett]

Every am I feel like I've been squished by Sasquatch.

Then I get moving and things clear usually. Then later I might get back pain or hip pain or leg pain or neck pain. It may be a combination or not at all. I've determined that my neck pain is from a stomach bubble...if I make myself belch, then it goes away instantly. I assume that some of my other pains are from a signal mix-up too. Who knows. It is just transient, sometimes lasting all day and sometimes not at all. I only take pain medicine before bed if it gets to the point where I know it will make my sleep even worse that it already is (I'm up to 6hours usually now.)

~Kris

[amexdm]

Hello,

You're asking the wrong cat Mary! You know my answers are yes, yes and yes. I breathe, and I feel fatigue and pain. Thanks for this though as I am comforted to know that others get a hoarse voice as well. I did play golf last fall which would be about two miles of walking. I was asleep by 8pm. zzzzzzzzz. i wouldnt even consider doing much yard work as I know it would just shatter me. Looking to hire someone to plant my garden though. I can water stuff .

David

[goldfish.girl]

Hi Mary,

The fatigue is a constant thing for me although I do occasionally get short breaks from it now where I can go without a nap in the afternoon for a few days at a time. Not often but it's an improvement all the same.

Yes, anything physical like gardening even for a ridiculously short amount of time causes pain that is often more debilitating than the fatigue. I can have a rest day & feel better fatigue wise the next day but the muscle pain continues for several days. The biggest physical pain I've had recently was after a shopping trip - 30 minute train ride each way, maybe 3 shops & lunch out, so not a massive trip but the pain was everywhere for days afterwards. There really hadn't been any heavy lifting or similar involved on that occasion.

Michelle xx

[SarahLou]

Hi Mary,

Yes, the full body pain hits me hard too.

As I write this the whole of me hurts, such deep pain it's like my bones hurt.

This week I've started working an extra half hour per work day, not my choice (best not get me started on that rant !) and its floored me. Add to my day the normal things, cooking a meal, household chores, being a mum , I'm all out of strength. Then fitting in exercise, gym work, shopping etc... Yes, my brain and body scream at me!

I'm fed up of hurting his much

Take care,

SarahLou Xx

[DawnS]

Hi Mary,

currently I am in pain for being stupid enough to meet some friends in a pub garden on Sunday afternoon and spending a few hours sitting down with strong earplugs in drinking lemonade.

Whenever I overdo anything, I get pain at the base of my neck on the left side. This burns and pulls and won't go away because I continue to overstretch myself by going to work. I wonder if it's a coincidence that my bleed was on the left? I get leg and hip pain and weirdly, face-ache. I assume that when I'm tired I clench my jaw or something.

Recently I've been getting cramps in my legs and feet which is new. I don't really exercise except for the 40 minute walk I take at lunch time each day. Even though I know deep down that some exercise would probably help, I just don't dare because what I do today will detract badly from what I'm able to do at work tomorrow.

[goldfish.girl]

I have to pop back in to add.......

Even leaving work does not (for me anyway, others will be different) change the level of fatigue or muscle pain when you try to do normal life stuff. It is still there just without the salary I hope that will help those of you still struggling at work to keep going. Not working hasn't changed things and the biggest plus is that if your brain function still works well enough to do your previous job, you are doing well

It's not easy but you are doing it. A huge well done to all who have managed this!

Michelle xx

[DawnS]

Michelle,

thanks for posting this as some days I do wonder why I'm bothering with work. One week I had holiday (I think I posted about this at the time) and I felt so rough it really depressed me because I assumed the rubbishy feelings were work-related and it was a horror to find out that taking work out of the week made absolutely no difference to how I felt!

[goldfish.girl]

Dawn, I'm so pleased you replied with a similar story.

I do worry that when I say these things, it will upset others. I don't want to drift off topic but I think there is a point I needed to make. Leaving work hasn't changed how well I am but I can now stop when the fatigue related issues hit me. Before, I had to finish work, then collapse & be useless at home for weeks at a time. Now I can stop and only be useless for a day or two before I start again. I don't expect any less of myself than I did while I was working, I just have the opportunity to stop before I make it worse for longer.........

I was terrified when I left my job & started the medical retirement process - how would I pay my rent, how would I afford food or heating etc, etc, etc. It hasn't been easy but the bottom line is, I am not homeless, I am not starving, I am very often cold as the heating is only on when my son is home,big jumpers, woolly socks for Scotlands prolonged winters I do more home cooking with cheaper ingredients adding in healthy extras.

For me the decision was, keep knocking myself out with a job my brain could no longer do & become more & more ill as time went on or change my lifestyle & financial expectations. My wage was the only wage coming in so these terrifying thoughts were all too real. It wasn't about cutting out treats, it was cutting out basic living needs. Luckily I can't drive far so that's the petrol bill slashed too.

All of our situations on BTG are very different. I can only share my own personal experience & encourage others who are struggling with being at work to consider the options in a realistic way bearing in mind that leaving work doesn't miraculously make you 'better'

Michelle xx

[Wem]

Michelle,

Thank you for this, I guess the bottom line for most of us is, that in whatever we choose to do, there is a trade off. I for one feel heartily sick of this fact at times, but appreciate it is all part of the recovery process and a large part of that is acceptance of the 'new' me.

As with anything in life it is sometimes harder to walk away from a certain way of being than to stay. I admire your courage. I lost my financial safety net a number of years ago under very different circumstances and I know how scary and difficult it can be.

Interestingly I chose not to attend a 25th Wedding Anniversary last Saturday for an acquaintance who suffered a stroke around 12 months ago. My rationale for not going was that I was exhausted from the activities of the previous week and did not feel strong enough to face all the noise and high jinks that typically go with a social event of that nature. I felt guilty but I did not want to risk being completely floored this week for one night of fun, that at the moment is anything but fun for me.

I discovered yesterday that the chap whose party it was suffered a relapse of some kind on Monday and was rushed into hospital. He has been released now, the details of what happened are a little vague but it was a timely reminder for me that we really do need to accept and work within our limitations. The brain is a very complex organ and we need to respect it if we are to achieve any quality of life.

I shall keep climbing this glacier, just wish it wasn't so darned slippy!

Karen, apologies if I have gone completely off topic here.

Take care,

Wem

[amexdm]

Hello Mary, Wem, GG, Dawn, SL, Kris,

I think the main issue here is fatigue and then after effects and pain. We all seem to have pain after exertion and just to what degree. I think I could prolly mow my lawn but it might knock me out for 4-5 days. So I have to pay someone to do it.

Michelle- Thank you for your invaluable insight. I should pay you instead of the doctors. The information I learn here is so much more than from doctors. I have always wondered if I quit my job, would I be miracle cured. I think the answer is no. That is my guess. So I may as well work if I'm able and be able to support my family. It is horrible fatigue yes. Perhaps off topic and start another thread but thats up to mods.

I dont think I can do anything physically that wont set me back 3-4 days. And I cant afford to lose 3-4 days. Thats just knowing your body. I have passed up many a social event to rest. In fact, I have no social life. Right now, dont care and maybe I'll be better some day.

Thanks to all for sharing.

David

[MaryB]

Exactly can you do anything more than you are currently doing without being wiped out. AND do you have as bad of pain as you do fatigue? I am shocked by the level of all over body pain as well as the fatigue. Thanks everyone for your input, I feel less alone with the pain aspect of it. It is bad enough having the fatigue but the pain on top of it has been horrible. AND horrible for such a long pay back period compared by how much I did. It not like I row a boat to China for Pete's Sake!

My husband asked if I wanted to go to a Sunday Baseball game and I was like "no", wedding "nope"...cannot risk it. So I shall stay in my little bubble a little longer and see what happens. My neurologist has no answer for this severe pain and fatigue except CFS. And apparently he can only concentrate on fixing my migraines.

I agree it does not make any sense when you will be hit with it either you could have a really good week and things are great and it is almost like a cycle. Maybe we are all suffering from really bad PMS ( really not been free of that for 24 years).

Thanks everyone, mary

[Macca]

Michelle/Dawn/Mary/Davida nd everyone else,

I think working creates added pressure, but then not working replaces it with another but equally telling pressure - no money! I suffer now with nausea, heaadaches, light-headedness, poor balance, poor memory but I am able to work because I can sit at a computer all day.

Anything physical floors me and when that happens I could give Rip Van Winkle a run for his money! We all suffer this together it seems, but Mary you seem to have pain worse than I do and I feel for you, I really do.

On a lighter note, my wife Sandra said to me a few days ago when I felt ill "Why don't I tread on your foot and take your mind of it for a while?". I won't tell you my reply!

Stay well, stay strong everyone, we're stronger together than on our own!

best wishes to all

Macca

[goldfish.girl]

Mary,

I am 100% behind you on the amount of fatigue & pain in comparison to how much we have achieved. It is ridiculous to be so sore & tired for soooo long after a relatively minor amount of physical effort What I can achieve physically now is nowhere near what I used to do & possibly have a minor muscle ache but I keep getting told that this level of fatigue or muscle pain is not what would be expected so long after SAH??????

As you know I am almost 5 years on & this issue is still the same. There are times I want to cry my eyes out & scream at the unfairness of it all....but, hmmm, that would just make me more tired mentally I think it would help if doctors agreed that my levels are much reduced by SAH, rather than claim it cannot possibly still be related as this makes me mad & upset at myself - as if I am just not trying hard enough. I really could not try harder & this far on, it's my family & friends who can see this while I'm still declaring that I'm fine, I can do a bit more (in the garden, mentally with other issues). They know I need to stop, I know I need to just finish this last thing.....and then BAM!!! They were right.........grrrr (luckily they are never brave enough to say 'I told you so' ).

Mental exertion makes me fatigued only but even that can take a couple of days to recover from. Physical exertion can wipe me out for a week!! It's interesting to me to know how many others suffer physical exhaustion after only mental tasks - I find that can also cause muscle aches & pains for no identifiable reason. I didn't run about, lift, tug or pull but the fatigue can make EVERYTHING sore, achey & stiff. Is this something other members find too? Obviously I would expect the muscle fatigue to happen after a spell in the garden or similar but, after a day of catching public transport, being somewhere on time, just things that require organising thoughts & time can cause physical pain too???

[MaryB]

Wem, David, Michelle, Dawn and anyone else I have missed,

First off I am glad I am not alone but do not wish this on anyone. Boy what a strong group of people with hope we are! This brain Crappola is not for................the weak!

I wish I could help you or say something positive but the well is dry at the moment and I am trying hard to save myself from this!! I cannot believe of all the people in this world I for one cannot overcome this ! Really I think I am more special and I am super woman.  I have always found a way to have some sort of quality of life but this has really been a game changer.

I have however read much in a CFS website that has journals, information of doing tasks when exhausted and in pain, doctor appointment etc. Just about anything you want to know and more. I find that it is interesting that CFS is so much more ahead in research than any of the brain things we have gone through. I have that website if anyone is interested.

I printed off some charts to start keeping track of myself so I have something to hand the doctors. I think for me switching back to Rheumatology is what I may need to do. I swear my neurologist does not even know me or open my freaking chart when I go there. He zooms in on headaches and treatment of that only now. It really annoys me and I have no energy to be annoyed. I know this SAH, stroke and tumor has pushed my CFS and Fibro over the edge and my question is can I climb back up the mountain or not? Is this part of the cycle and cause of Fibro and CFS which apparently seems to have invited you in as guest of “no one in charge land”. I do see such a giant connection, even if none of you believe it!!

IS this as good as it gets or and do I need to make some changes in my life or what? I know I need to make changes but how, when and where is where I am at. I read somewhere yesterday that neurologist like to treat problems they can solve not things like dementia etc.. Rather than anything chronic and deadly. Is that not their job??? Is that not what field they went into??? They are so far behind on research it makes me just shake my poor head. I am glad that so much $ was given to study Alzheimer’s and that they are now studying football concussions the past few years. But really is this problem just this far behind the time? I personally find us all fascinating and I think we are all very interesting to study! Please someone study us!!

When I was first diagnosed with Fibro it was like this “no one knows what to tell us” 20 years ago and now I see how amazing the Fibro Network Community is and how far they have come. I am just baffled by this lack of brain research- whose job is it to treat us anyway?

Keep on Truckin.....maryb

[kpaggett]

Love the support here. When I tell friends or family that I have pain all over, they just think I am crazy and that it can't have anything to do with SAH. The other day I bumped my shin on a sharp corner and felt that 'Normal' pain. I cried as I realized that I'd rather bump my shin repeatedly rather than feel the way I feel. It takes its toll for sure on us.

The way I look at it is that fatigue isn't just a feeling we have that we want to sleep, but we get other fatigue as well. It is not muscle, but neuronal. It ultimately translates to the muscle, but it is the original signal that is weak and gets tired out faster than normal. Most people never experience neuronal fatigue as the muscle usually tires out first...but in our case we do. That's why we can have the worst pain in an area and then it clears up almost instantly...only then to clear the way for another pain! Muscle pain always follows a slightly different course for me. I work out, a day later my muscle feels soar, it stays that way for 2days, and then it ebbs off. Very predictable. Maybe some day I could predict my neuronal fatigue as well. I might go to yoga and stretch the heck out of a side muscle and never get soar, but then I might get a horrid pain in my legs later. It's like my brain taunts me in a passive-aggressive way.

What are your best places for pain?

Mine are hips/back/legs/sides.

~Kris

[MaryB]

Kris, I would say my pain is always in my neck first after that I feel as if I fell down a flight of stairs or was in a car accident without a seat belt. It is all over body pain from the tips of my toes to the top of my head for 5-7 days. No kidding~ everything hurts.

My otherwise pain that I have daily when not knocked out is like I have no oxygen or something in my muscles and I cannot say hold up the sheets to fold them as my arms are too tired. I cannot grip well. I do not understand how anyone can use those retractable dog leashes and hold on to them. I cannot do any repetitive motion without my joints hurting ( bad right shoulder, leg hip, right foot, left knee- yeah I know age and injuries). About once a month I have a couple of days where I feel normal.

maryb

Edited May 9, 2013 by MaryB

[Sandi K]

People do look at us funny when we summarize by saying it hurts all over. I feel compelled to break it down for them and I worry that I sound like a broken record but they seem to comprehend more when I break it down into the usual: sore legs, sore arms, sore throat, sore head (tight head, elastic band around my head, ache on one side of my head), sinus pain, sore front teeth, concrete on my legs and arms, sore back, sooooooo tired, and so on with blurry vision and dizziness.

Do you get tired of having to explain it all to people? I wish we could say I'm sore all over and not hear back "oh I know what you mean" from everyone - honestly, do they know what we mean? I sure didn't ever experience anything like this prior to SAH.

Sandi K.

[Wem]

Wow, Mary you have tapped into a rich vein of experiences in this thread!

Whilst all the responses do not help to reduce my fatigue and pain, I am finding it so encouraging to learn I am not alone in all of this.

Sandi, your list of pain related problems is almost a mirror image of mine! Somehow strangely comforting.

Wem