Fatigue a few years later.....

[goldfish.girl]

Today, I finally made an appointment with my GP to discuss the fatigue issue as I would love to retrain and start another job at some point in the near future.

Whilst my cognitive issues were verified after Neuro Psych testing (2 years ago) and are slowly starting to be recognised by local GP's, apparently the on-going fatigue is more likely to be 'learned behaviour' or due to 'depression'. This was the claim after ruling out any damage to my Pituatry Gland and after a physical exam which could highlight ME (sorry, I forget the full name for this). It is now widely accepted that chronic fatigue (ME) after a viral illness is real and may continue for years, however, there appears to be no recognition that chronic fatigue after an SAH is common place. It would be an 'unusual side effect', I was told. This is in spite of the fact that I took a close relative with me who has watched me since the SAH to help me explain how debilitating this is and how badly it affects my life. I was also told that it seems like I am now doing less than before.....well, yes, I have finally realised what my limits are and stopped knocking myself out followed by a day or two in bed to get over pushing myself too hard.

There are times that I despair of ever being understood. I went there looking for a cure of ANY KIND. I have fully accepted that my cognitive issues are permanent, and accepting that took over 3 years, I just wanted to rule out all possibilities before I have to accept that the fatigue may never fully go either. I feel like I finally accepted the cognitive issues only 6 months ago and now I have to do battle again to prove the fatigue, try every possible way of overcoming it, then go through the process of acceptance all over again. (I have been asked to go for blood testing which I have done several times since the SAH and, like myself, the GP doesn't expect them to show anything new).

Are any other members aware of any testing (like the cognitive skills neuro pysch testing) which could be of use for me to ask for?

[Gill C]

GG as you know my main problem is fatigue, I have had all the blood tests done at my review & more recently before being prescribed anto d's & they all proved negative. I would love to prove that fatigue is a real issue & despite knowing from Headway this is a common side effect of any brain injury. Some days I look fine but then when I remove my glasses hubby says I look panda eyed & tired.

I was told at the hospital I had sleep apnea but when I asked my GP he ran through the scale for having sleep apnea & I scored zero, I don't & never have nodded off on the sofa or in the car or during a conversation - by that scale my hubby must have it really bad!!! Because I scored zero he won't refer me for sleep testing & I have accepted that fatigue is part of my life.

I too would love to go back to work but my max limit is around 2-3 hours I hit the wall, any meaningful job is not going to want me for less than 4 hours a day. I want to be able to carry out the other things in my life like card making, the school run, cooking etc so its a trade off with only enough spoons for one set of activity.

Having been sleep tested I think you have the most comprehensive picture of your fatigue & know that it is very real, unfortunately it may not be caused by anything that can be treated. But hey if you find something that helps spread the new & I will be the first guinea pig for you!!

xxx

[goldfish.girl]

Gill, if I find a test or a cure I will be shouting it from the rooftops I promise!

As with the cognitive skills, I will never give up trying until someone confirms that it will not get better after exhausting all the options and showing me definitive proof. It has to get better and I will do anything to make that happen. My life needs to move on from here. I have never given in easily and there must be a way to cure this. I am just mad that I was told it might be a 'learned behaviour' I can only keep repeating that I am a fighter and will never give in unless it is proved that I can't get better from the fatigue....then I'll spend a few more precious years trying to disprove their theory before I give in.....

[Sandi K]

I don't believe the 'learned behavior' label. On good days we all forget we are recovering from brain injuries, we rejoice that we are cured, we pile on a hundred tasks and we check off our lists with gusto. Then when the fatigue hits we are devastated. We feel depressed and hopeless and look for ways to climb back out. Maybe I don't understand what 'learned behavior' means. If it really is I'd like to UNlearn it please and thank you! I think there is a physical cause and it's just not been figured out yet. Keep looking GG, someone is going to figure it out one of these days.

Sandi K. Xoxoxo

[goldfish.girl]

Thank you Sandi, I don't believe that I 'learned' it either!

The fatigue is secondary to the cognitive skills I lost (Because I have always been in admin employment, this would be different for anyone who has always done physical work). I highlighted it to the doctor today after coming to terms with the fact that a sit down, no physical impact job is no longer an option. I want to do something! Anything!

Why would anyone 'learn' to enjoy no job,no heating,no pride and little money for anything after the medical pay off is spent and no ability to ever change this? I do not believe that anyone would choose this! For me this is not a life style choice by any stretch of the imagination. My son is getting better slowly, he will be a teenager soon enough and not want my input so much (he already says I'm too overprotective!!! completely forgetting that I have watched him go through brain surgery & the recovery so far.....)

I just need to get better and continue with a useful life. There are so many other opportunities that interest me, like support assistance for teenagers & adults with learning difficulties. These are jobs I want to re-train in and try out but the fatigue is stopping me even doing a regular part time stint in this. Voluntary work is still an option in this field (and a good way to start and work up from there I think) but I need to have the energy to be able to try & still care for my own child.

Mostly, I am 42 years old, a single mum and not ready to do nothing that inspires me & earns my own income forever more. There must be even more 'old timers', SAH wise, than me on BTG that can suggest things & inspire hope after recovering from the dreaded fatigue? Surely the fatigue can't be as permanent as the brain damage?

[MaryB]

Once again I am bringing up the fibromylasia issue followign SAH as after an illness is when it sets in for most people worth checking it out. Cymbalta has worked wonders for me for my neuorpathy, pain and fatigue it made my life 75% better PRIOR to my SAH. Now I feel somewhat screwed! But it is something I want you all to look at as a possiblity. My neurologist was happy I was on Cymbalta. Fibro is a nerve pain - censors are off in the brain and spinal canal. Gotta run and get ready for dinner. I do not think it is a cure but I think it certainly is a possiblity that the fibo drugs woudl certainly help after a brain insult.

http://www.fmnetnews.com/

maryb

[Carl]

When I first went back to work I told my doctor I suffered from fatigue. He sent me for a cardio angiogram stress test to ensure that the blood was travelling to the correct parts of the body unimpeded.

He has talked about the sleep apnea test, I have no doubt they will be exploring that tomorrow when I see him.

My doctor explained to me that the brain needs to process things in a different way than it did before the SAH. This is what is causing my fatigue. The analogy of a road that is closed and diverts all traffic on an alternate route that is already running at its normal capacity seems to sum up why the fatigue kicks in. Try it in a car and see if you get more stressed and tired going that route.

I wish there was a window into our minds so others could see the long and arduous journey we travel every day.

[goldfish.girl]

Thank you Carl & Mary

Mary, I think fibromayalsia (not sure how to spell it) is the same thing my doctor was checking me for? It's chronic fatigue with muscle/joint pain, is that right? She said it's usually caused after a viral illness & didn't think it would be triggered by an SAH. It might be worth me asking about the drugs used to improve fibro symptoms and whether they could help me as the symptoms are the same? Thank you for giving me that thought to mull over!

[Louise]

Hi Michelle

I was told that I would always have this fatigue although Ican cope with it, I find it hard at times.

That’s so sad that they cant help ok I don’t think there isa cure but to help you manage the fatigue

Sorry its not much help. Hope you find an answer that suits you....

Take care...

[MaryB]

I don't believe the 'learned behavior' label. On good days we all forget we are recovering from brain injuries, we rejoice that we are cured, we pile on a hundred tasks and we check off our lists with gusto. Then when the fatigue hits we are devastated. We feel depressed and hopeless and look for ways to climb back out. Maybe I don't understand what 'learned behavior' means. If it really is I'd like to UNlearn it please and thank you! I think there is a physical cause and it's just not been figured out yet. Keep looking GG, someone is going to figure it out one of these days.

Sandi K. Xoxoxo

I coud not say it better. When I have good day s I am sure it will last forever and I am cured. I have fallen for this for over 15 years with the fibro and now with the SAH. I am only good for 3-4 hours of any kind of work and I need a big break of a few hours not always sleep but some kind of not thinking. AS I told someone the other day my brain thinks about every step I take and each placement of my footing, I cannot drive and look at th emake of the car next to me or look out the window, I cnanot cook without reading the recipe at least 20 times each step over and over and over again. That is what I believe exhaust my brain b4 noon every single day. Something simple like pulling weeds makes my hands hurt per fibro... I have to ask myself can I have numb, tingling, painful sore hands and wrist for 3 days if I do this project?

[MaryB]

Thank you Carl & Mary

Mary, I think fibromayalsia (not sure how to spell it) is the same thing my doctor was checking me for? It's chronic fatigue with muscle/joint pain, is that right? She said it's usually caused after a viral illness & didn't think it would be triggered by an SAH. It might be worth me asking about the drugs used to improve fibro symptoms and whether they could help me as the symptoms are the same? Thank you for giving me that thought to mull over!

I cannot help to think it would as my neurgolgist wanted to put me on gabepentin after SAH but I was already on Cymbalta. If sleeping at night is the issue I do not know why a low dose of xanax is not prescribed it does not have the hangover as the sleep medicaiton on market today. Or why not tylenol pm or one of those drugs at night? nyquil?

[DawnS]

A 'learned behaviour'? Wow, insulting! Wouldn't it be wonderful if doctors could get their head out of their behinds and listen? I know I didn't go to university for a decade, but that doesn't mean I know nothing about my own illness. My GP doesn't seem to think that my sleep problems are actually an issue and I suppose compared to the sah itself, they are not. But he could at least pretend to care or at least write me out a prescription for some serious sleep meds

What are they going to test your blood for? Have they checked Thyroid function etc? What about diabetes? (It's just a thought). I really hope you get somewhere with this, how frustrating for you to go through it all once more.

Dawn x

[Winb143]

Perhaps we should all carry camp beds wih us.....have forty winks lol...then get nicked for vagrancy lol

I don't know what the answer is..but I am pleased with my cognative functions, as the brain injury team gave up on me as I

had Hydrocephelus.and called them a load of witches (said this before) .since shunt fitted..it is like I know everything...and remember more..okay I sometimes forget things ................

Like "hiya whatsyaname and "am I repeating myself again Al?" his reply is normally "Yes Win as normal" ..lol.....

Good luck to All of us in getting there................................Never Give Up xxxxxxxxxxxxxxx

Love you all...........love thingyme bob ha ha xx

WinB143 xxxxxxxxxxxxxx

[goldfish.girl]

Mary - sleeping at night is not usually a problem for me (neither is sleeping for a couple of hours in the afternoon )

Dawn the blood tests are for Thyroid, aneamia and some other things that I can't remember now, any thing which could cause fatigue. I've had them done several times since the SAH, they are clear every time and I expect the same this time (so does the doctor). It is unbelievably insulting. I am an intelligent woman, I am not depressed and this extreme tiredness is not just in my head.

If there is no cure, other than leaning to manage it - that will be that, but if that is the case doctors should not be so bl***y ignorant about such a well known after effect!!! If they can't do anything to make it better, I can accept that but would like them to at least acknowledge that it is real, it is happening, it has not gone away after nearly 4 years. It seems like they don't know why fatigue continues so they'll just pretend that it doesn't and claim it's all in your head grrrrrrrr

Michelle x

[Winb143]

Michelle,

You are my hero..lol so do not ever give up....you make me laugh and you will beat whatever life throws at you !!!

You can make it...I know you can xx......ignore what others and Docs say....you in your mind must feel you are strong and will not let anything beat you....

So go get em gal...hold ya head up high...ha ha that's it laugh xx its hard but worth it xx

Remember I told you I took four steps at Christmas...I now walk 40 steps..then back goes .....lol Weight ?

I am getting better every day...so chin up Michelle as all on BTG You and everyone has helped me....xx

Love

WinB143 xx

Edited April 26, 2012 by Winb143

[winter]

Oh, Michelle... How very frustrating it is when the doctors appear to know so little!!! It makes me wonder why they've chosen the path they have, when too many times, it boils down to just not giving a *#*#

Wouldn't it be fantastic if they said, "Gee, I'm not really sure what's going on here, let's look into this together and see what can be done!" I must be dreaming to think that would happen - my experience through this whole SAH ordeal, has been eye-opening and shocking and I have to say I am sorely disappointed with the medical community where I live.

Learned behavior? Are they crazy? Like you, I refuse to believe that anyone would "choose" to live in our shoes! It is highly insulting and makes me absolutely livid Can you tell?

Right here, at BTG, there a lot of us that suffer with the fatigue. Wonder if anyone's done a study on that yet. We could print threads on fatigue, take them to our doctors, mail them to the hospitals, neurology departments at universities, etc...

I liked Carl's analogy of re-routing. When you have to take a different road than you're used to, chances are, you may need more petrol go get there. The car will be in motion for a longer period of time, therefore using more petrol (energy). When you arrive at the destination, the engine may be hotter than usual, the tires a bit worn, etc... I sometimes think of my brain like that of a car with a few parts that need repair. It just doesn't run like it used to. If the car overheats, you've got to pull off the road.

Obviously that's not a fix for the fatigue issue. Would be interesting to see if your Dr. is willing to try some of the meds MaryB was talking about.

Not to be a Debbie Downer (no offense to any of our Debbies!!!), just being honest about some of my stuff: I'm hypothyroid, since the SAH, and on meds for that. I do have/suffer from depression and taking Rxs for that. I have anxiety/panic attacks - currently not on meds, but have been and they really helped those issues. Since SAH, have migraines that I do take meds for. I still get fatigue. I've had lots of blood work done. I'm taking Vit. D because I'm deficient there. I'm on Vit. B12, also due to deficiency. The fatigue still comes. I have begun to think this is possibly a permanent thing. I hope it's not - because it certainly does affect every aspect of someone's life.

I would also be willing to be a guinea pig for any studies!

In the mean time, Michelle, you hang in there and keep at'em!!! You are a strong, intelligent woman and I believe you will find the answers.

Love and hugs to you,

Carolyn

[MaryB]

I am hypo thyroid ( never made me lose weight being on meds as I was 98 pounds when I started them & 24 years old- I was just able to get pregnant with meds and now I am 53 & weigh I 160).

I know that they have to rule out other things but there are many things in the medical world they just do not know about. But it would be nice to be able to say that without them making oyu feel crazy. It was bad enough to have fibro ( which there is no medical test for and when I was diagnosed with it I just cried because someone finally put a name on it adn I was not crazy) but about 6 years ago when we moved in to this house I developed hives and a bumps that itched like crazy even had a biospy of bump- the dermatologist thought it was stress and all in my head., I ended up at a Univeristy Hospital in Chicago in the dermataology dept and that dr knew exatly what I had although 3 other Dr.s & one derm did not. She was outraged when she read the notes from previous dermatologist saying it was all in my head. I had / have an auto immune disease called Lichen Planus. So although I believe we all know that we have these symptoms etc. I do not think the medical community can prove or want to ackknowledege something that they cannot test and get a positive result from.

I don;t know what I want back more -cognitive issue or fatigue or headache? Where would I place the over loaded stimili? Or stamina? I would be happy for a good productive normal 8 hour day- I would love to have a 10 hour or more day to count on everyday but I do not want to be greedy! Right now I good for about 3 or 4 hours a day at most. The rest of it is a struggle. But again I have to say at least I am not learning to talk, walk and hold a fork again so maybe they see us as the success cases. The favorable outcome we are!

[goldfish.girl]

Thank you all for the replies and the suggestions, always appreciated

My Neuro Psychologist did confirm a few months ago that, for some people, the fatigue does not get better & gave me advice on managing it.

Because I want to move things forward in my life now I think I've just become frustrated & impatient with it. I just wanted to explore any treatment options before I'm ready to accept it. I didn't expect the slap in the face that it's all in my head......

Thank you for your help.

Michelle xx

[donnamarie]

hello all just trying to catch up on some posts as i have been hiding michelle i hate the fatigue i willbe 2 years next week and still suffer fromit big time if i find a cure i promise to share. How strange is this The tablets Mary is talking about ive been put on today . I will let you no how i find them as i think ive been puton them for both depression and neuropain .

donna

[Leo]

Hi Michelle,

I've got no suggestions on dealing with the fatigue ... I just wanted to reassure you that you are not alone in the daily battle.

Love,

Leonie

[Sandi K]

I explained to GP today that fatigue is an effect of SAH and I don't expect her to fix it. She wants to rule everything else out though, I'm grateful for her determination because I'm so tired I just give up.

I just posted on the 'fit and active' thread that she wants me exercising again. She also getting my blood tested again and looking at thyroid, B12, D, etc.... She doesn't think it's my pituitary gland cuz I don't have all the other stuff that goes with that. Later in May we will wean me off my anti-migraine meds which can cause fatigue.

I'm pretty sure after a few weeks off work I'll be feeling a lot less fatigued. But if any of the tests show I'm deficient in something or whatever then I'll be very surprised but very happy if it's that simple.

Sandi K.

[goldfish.girl]

Sandi,

I am chasing behind you on threads today! I just read & replied to your post on the fit & active thread, then read this. Likewise, I don't expect the blood tests to show anything but if they did, in a way that would be good because then I could be cured of the fatigue once and for all. How good would that be????

Michelle xx

[Gill C]

GG that is exactly what I said to my Dr when the last tests came back clear. At least there would have been something to treat!!

I will ask tomorrow at the Wessex meet, I think they are covering spoon theory so it will be interesting to see what other people say. (I was asked to present it & talk about it but I hate any form of presentation so had to say no!)

[goldfish.girl]

Thank you Gill. If it's possible, can you ask if there are many others still suffering major fatigue a few years later please? I looked at the Brain & Spine Foundation website today and although there is info on fatigue I can't open the documents on my computer. Hard facts would be so helpful right now - something to show that doctor

[amexdm]

Hi, Michelle and everryone,

This is great thread, thank you for starting and sharing. I would be quite offended if someone said fatigue was "in my head". That is ridiculous and makes me lose respect for doctors. Nine months on, my fatigue kills me and is a 9 out of 10 on most days. I work 36 hours a week so there is little time for good rest.

But after reading this thread, I can see that some doctors don't recognize fatigue as a long term affect and that is concerning. Other than running necessary tests, sadly I dont think there is a cure for it. I think some have it worse than others. I can only hope mine gets better over time.

Michelle, do you mind if I Pm you on this?

Take care all,

David xx