Chiari Online Support Group

Fatigue management

#1

Does anyone have any tips on how to manage fatigue? I’m tired everyday but then I have days like today where I’m just out of breath and yawning constantly. Mentally, I want to get up and do something but physically? Not happening.

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#2

I give my son vitamins - magnesium with zinc/ omega 3 /vitamin b and iron - this does help a bit

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#3

Fatigue has also been my problem lately. I am a teacher, and I am up all of the time. My biggest problem is the pain in my legs. It is hard for me to move around like I used to. Is anyone else experiencing the same pain? If so, how are you managing it?

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#4

I get growing pains in my legs which is common for people with EDS but I haven’t been diagnosed with that. It’s just this constant aching in my legs that usually happens on days where I’ve been standing and walking for long periods of time. Ice packs sometimes help.

#5

Hey Geo,
Fatigue is a massive issue for me and it fluctuates in a major way. Trying to manage around it can be very difficult. I know that if I do too much today I can end up bedbound tomorrow. So, I try to pace my activity, breaking tasks up into portions, getting some portions of task done over each day until it is completed. I also have a hydro therapy pool, after a day of heavy, full on activity a nice relaxing spa helps to relieve the built up physical stresses of the day.

For me I find there is a couple of differing types of fatigue, a physical and a mental. Pacing can work quite well for physical fatigue, but mental fatigue can be a bit more difficult to manage and can depend on the cause. For example if I have a task that requires concentration and analytical thought I can try and divert my thinking by walking away from the task at hand. Where if the mental fatigue comes from stressing over something, personally I find this more difficult to manage as often it can be something that is constantly revolving in my mind and is impossible to just ‘walk away from’. For me I find I need another activity to occupy my thinking elsewhere. For example I have a little dog, he needs walking. I have a shed full of tools and have a few little tasks that need some attention, so I ‘try’ to divert my thinking elsewhere with these. I say ‘try’ because I’m not always successful, but I have a bit of a variety of other things to keep myself occupied because, for me going over and over the same things without finding an answer only adds to my fatigue/stress.

Merl from the Moderator Support Team

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#6

Thank you, Merl! That’s super helpful advice! I try to do things over the course of a few days but I’m so used to pushing myself that I just forget and keep going. I’ll try to be more mindful. Occupying my mind is quite difficult so I’ll try your suggestion. Thanks!

#7

I experience horrible random burning, what I think is nerve pain. Everywhere, intensifying as the day progresses. I use Baclofen, low dose of suboxone and THC for break thru pain. I’ve only just found out I have 7mm low lying cerebral tonsil. Have had symptoms for 2 years, basically being told it was psychosomatic. Still dont know how CSF and spinal fluid flow. Appt in May. Also eating organic produce and meat help on my really bad days. Bottom line most important, is always, always REST. which I know isnt always easy to do.

#8

Hey Kristi,
Being both a neuro patient and former drug user myself I can assure it is real common for such symptoms to simply be written off as ‘drug induced’ or ‘psychosomatic’. For many years I was told “Well, you can’t be having pain like THAT. We can’t find anything…” that was until they did, but even post surgery the response was often “Ohh but you have a history of… …well, it’s probably just that then”. Infuriating is just not a strong enough word.

I’ve been having some discomfort for quite sometime. I have been to see the dr’s without any resolution but the discomfort has been fluctuating, so when it settles I can manage. Lately the discomfort has become a bit more constant and my wife is seeing my pain. I have a neurosurgical review in a week and she tells me we are not leaving the appointment until we have an answer, but I must say I’m not that hopeful. I’ve lost a bit of hope when it comes to me and the dr’s, I just shrug and walk away, but my wife won’t let it go. I try to hide it so she isn’t stressing over me, but my charade isn’t working to well of late.
Let’s hope your appointment in May brings some resolution.

Merl from the Moderator Support Team

#9

Hello Merl!
I’ve been reading up on you posts, I so appreciate the response! I’m a former drug abuser, heroin and benzos to be precise. I have not abused drugs since May, 8th, 2014 and could not be more grateful. I take medication responsibly now, however just being on the meds has brought quite a bit of shame. My 1st neuro thought that I had mononeurits multiplex from the hep c I caught using. Which basically means that it’s my fault and should just accept my consequences. The treatment I’ve received should have broken me, theres no words to describe. Took me a year to get approved for Mavyret ( hep c treatment, 8 weeks, 3 horse pills a day) only to find it only made problems worse (however I do not have hep c anymore). That’s when my stomach just gave up. I can barely eat solid foods anymore, I drink tons of water, protein shakes and smoothies of fresh organic produce (when I can tolerate the cold which isnt very often). Fast forward 6 months, which lead to CT and then MRI. THE MEDICAL SYSTEM IS NOT WHAT IT USED TO BE. Theres no more " just trust the doc". If I dont fight for my health, who will? I have a 10 yr old daughter who needs me healthy. I believe your wife has the right idea. I had to go thru 3 pain docs and buying my subs off the street before I found a doc that will show me the respect I deserve for triumphing like a champ thru all this. Maintaining my recovery and keeping my integrity intact anddddd in check has not been easy, but I know there are other people out there that dont have the incredible support and reserve like I’m blessed to have, so I owe it to the newer ones to pave the way and advocate for myself and others! I’m so grateful to have the support of NA, HOWEVER finding you guys has made a WORLD of difference!!!

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#10

Hey Fieval43,

I know that having ANY previous diagnosis can make it so much easier for the medicos to have an ‘easy-out’ and I know for myself, I fought and fought against it, not agreeing with their diagnosis until they beat me down and I gave up the fight. Then when the proverbial really hit the fan, they turned around and said “So why didn’t you come and see us sooner?..” I had but no one listened. ‘Frustration’ doesn’t come anywhere close to expressing the situation. There isn’t enough hieroglyphs (!*%#@$&) on my keyboard to say it without offending.

Due to this I question the dr’s at every point and they DO NOT like it one little bit. They are of the thinking I do so to be difficult, but far, far from it. I do so due to my past experiences in dealing with them.

You state “…Theres no more " just trust the doc”…" and they wonder why? Their education tells them how much good they can do by becoming a dr, but what their education doesn’t show them is how much harm they can do too. That trust thing is a two way street. Why would we trust unreservedly when we’ve been burnt before? As has been said previously :

        "The definition of stupidity is doing the same thing over 
                and over and expecting a different result"

I strongly believe that it is only by us sharing our experiences in dealing with the systems, that we can show that this is not such an isolated occurrence, as is often portrayed, but rather more common than they would ever want to acknowledge nor admit to. Some believe my judgement of them is unfair, but I disagree, their judgement of us, the patient, now that’s unfair. It’s as if we choose to be in this predicament, who the hell would EVER choose this??? Not I, that’s for damn sure.

But please be assured, you are NOT the only one trying to deal with all of this, that I can guarantee you of.

Merl from the Moderator Support Team

#11

VIVA LA RESISTANCE!!! I swear when I get better I’m writing a scathing OP-ed on the current medical field and writing letters to the docs who’ve traumatized us along the way. Start a revolution lol!!!

#12

VIVA LA RESISTANCE!!! :rofl::rofl::rofl::rofl:
I’ve tried but it’s like pushing excrement up hill with a rake, eventually it flows backdown and I get covered in it. In fact my opposition to some of their opinions/practises now has me labelled as a ‘Non-compliant patient’, so be careful in starting a revolution, they hold the keys to the armoury and you are more likely to get shot down in flames, so please be aware. They DO NOT play nice.

Merl from the Moderator Support Team

#13

I hear you. I do! I have the same note in my file. However I dont think it’s funny trying to change the way things work, or dont work for that matter. Maybe I’m silly, or naive. But if you have it and I do, than we know theres many others. Just trying to get better. The stance of the medical field now, is if you have history of drug abuse your disqualified. Even tho addiction has quadrupled, which means your going to have more people getting and staying clean. More people with chronic pain because of damage to the body and no docs want to work with them, due do being possible liability. Thankfully today I have pretty good doctors, but that’s only because I choose to keep pursuing until I found a doc that shows respect, even if I have 15 docs in my chart. I know how vicious the docs are and those are the practices that need to be exposed. When I am post surgery and not under the care of 84635273 docs, I’m going all G.I Jane on this system. I appreciate the warning, I do! See I want to be a spiritual motivational speaker and life coach. I want to use my life experiences to help others. Just like I do for recovery. Again there are people out there that are going thru what we are, that dont have the resources or support to get thru properly. I’m doing it for them and for us because we all matter!!! Thank you so much for your wisdom and knowledge!! Keep it coming, devil’s advocate is definitely needed!!

#14

Ohh please, do not take my laughs as offensive (I was actually thinking of the British TV show 'Allo. ‘Allo’ in regard to ‘VIVA LA RESISTANCE!!!’ and how it can relate to the medicos as the Gestapo.) I often think that it is only via some objection or ‘resistance’ that some change will actually take place. I definitely do not believe you are silly nor niave, I just know the brick wall that is often put up in front of us by the medicos, with the attitude of “…I’m the Dr, so I know. You? you’re just the patient. You wouldn’t know…”
You state that today you have some pretty good dr’s. Keep them, and Keep them close. I had a really good one and he retired, his replacement was a young arrogant &^%$#, he had the bedside manner of a housebrick. I ended up making a formal complaint regarding his conduct, before I changing practises altogether. I am harder on myself than any doctor will ever be. If I’m seeing a doctor, I’ve got a REAL problem. I do not need some upstart passing a moralistic judgement on me and I won’t put up with it anymore. I had those false judgements made for decades prior to obtaining a true (and damn near fatal) diagnosis, so I’ll be damned if I’ll put up with that again.
But, now I ‘try’ to do it with a ‘feather lined sledgehammer’, with some appreciation of their views, but a firmness regarding my predicament. I’m often saying “We are not in this situation by choice. Who the hell would choose this? Not I, that’s for damn sure…”

P.S. I’ve had that medical review I mentioned and although I stated I was not hopeful, it seems they saw something on the scans and have acted immediately. I’m up for further scans etc with the likelihood of further surgery in the not too distant future. Seems I was right again, there is an issue. But they had to see it in a scan before they’d act.

Merl from the Moderator Support Team

#15

First off I’m so glad that they have found what you’ve been saying all along. There’s still something wrong. I did not take offense, ( my reference was similar “Viva” to the docs) I heard these responses for awhile now. My mother in law has suffered for 10 years with many types of headaches and migraines. Her life has been destroyed and she suffers everyday. She has a similar perspective about the medical field that you do. The more info I read on this site and others, the more i think she suffers from a similar illnesses. That’s not my point tho lol, she has been beaten down so much and for so long, she has lost most hope and tells me similar things. Like theres no use trying and you will suffer more. Shes right and so are you, that’s not lost on me lol. I see things differently tho, maybe it’s because it hasn’t been a decade straight. Either way lol I believe that we’ve hit a turning point in medical history. Due to doctors negligence toward pain patients with the current CDC guidelines, people are taking their own lives. Plus we both know how bad depression is when dealing with chronic pain. I just want to protect the next person coming in that might not have the support, from suffering from the same things we have. You know?

#16

Ohh, I know all too well. For a long time I fought against the system, that was a waste of time and energy. I have found that it’s easier to play their game. That does not mean give up, not at all but rather manipulate the system to work for you rather than you working for their system.
I am often saying "It is only people who have been ‘here’, who truly know just what this is like outsiders, including some medicos, can be very quick to pass judgement. But if they had to manage this for one day, one single day, their opinion would change in a heartbeat. It is only by living it that we can grasp the full impact. In my former life I worked with people with disabilities and to be honest thought I knew it all. What I knew was from the outside, the realities can be very confronting and only add to the fatigue. As I said to Geo in a former post here, the physical fatigue can be managed, but the mental fatigue, now that’s a bit more difficult at times.

Merl from the Moderator Support Team

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#17

You are a pretty cool dude Merl!!! Thank you for the support. I was super judgy before I got sick. I looked down (irony at its finest) on people who relied on meds in recovery. Boy was I about to learn a hard lesson. You never know what you will do till your in the situation. I had so many “friends” that turned their backs on me when I went on meds and to make matters worse. I had no real diagnosis. I recieved so many bogus diagnoses that I just stopped telling people what was going on. Without a clear reason why I need these meds, the judgement and criticism flowed freely. Even member of my close family think I’m dragging this illness out just so I can use these drugs I hate putting into my body in the 1st place. Took me awhile to gain confidence in what I’m doing, especially with such opposition. See I love who I am today, (which had a lot to do with why I used in the 1st place, trauma and not liking who I was) so I dont want to lose myself in any med. I have worked very hard on this, we’ve worked hard to get where we’re at and I’ll be dammed if we just throw it all away over me getting sick. Plusssss I THROUGHLY ENJOY PROVING PEOPLE WRONG :stuck_out_tongue_winking_eye::wink:

#18
    I received so many bogus diagnoses that I just stopped telling 
                       people what was going on. 

I know exactly what you are talking about and being unwell is SO isolating. Explaining it all gets real old, real quick. I now simply try to make light of it. My fall back line has become “Just chop it off at the neck, that’ll fix it” or “Nothing a bullet wouldn’t fix”, then I don’t have to explain.
Once we’ve been DOWN that track of addiction and comeback, you don’t ever want to return there. I get rather anti with the dr’s when they point at my use of meds as a contributing factor to my ongoing pain. I’ve personally been in more detoxes/rehabs than I can count on my fingers, so to say I know a bit about addiction is a MASSIVE understatement, so when they start preaching to me about drugs, OMG do they get an ear full. I have to manage all of this for me, not them. I have me a whole chemist store of differing meds, if I wanted to abuse them I easily could, but by doing so when I need them to manage pain, they don’t work as my tolerances to the meds increase. It can be such a fine line to manage.
It can be real easy to be ‘super judgy’ and as I say, working in the field I was under the impression I knew all about disability. But now being the one with a disability, ohh boy, how little I knew. It’s not until you are in this position that you can fully appreciate the scale of this reality and this is all a part of that mental fatigue.

Merl from the Moderator Support Team

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