let’s talk about fatigue, baby

Hi: Fatigue hits me hard. I get shaky like you mention, and weak in my legs with increased pain and difficulty talking. It sounds to me like you are overdoing it and your body is responding with fatigue and residuals. I can only work half time and need to lie down often and take at least one nap. You might not be able to do all that but I think you need more rest. I would check with your doctor but I have never felt anything so disabling as the fatigue when it hits hard-it is overwhelming to me and I try my best to protect myself from it. Good luck, Jeff

Cara,

So sorry to hear that you are having problems. Yes, it does sound like you are doing too much. Not what you wanted to hear, but you need to hear it just the same.

Think of your energy like a bank account. You have a finite amount in the account.

You have to spend a certain amount on daily necessities (sp), showering, dressing, caring for your children and pets, etc. that is non-negotiable.

You must also spend some on exercise (yes, this is important), doctor’s care, physical therapy etc.

Whatever you have left is available to spend on other things like work, shopping, errands, recreation etc.

The catch is that you can’t keep going when the energy starts to run out, [B]even if there are things left to do[/B]. If you do, you will continue to have setbacks to your recovery and exacerbate your residual symptoms.

Therefore, you must BUDGET your energy daily.

Find ways to eliminate or postpone things. You’ll be surprised at how many things don’t need to be done. Example, I had long hair that took lots of care and time- I got it cut into a short, carefree style. Result – more energy to spend on other things.

Delegate more. Example, I hired a personal assistant to do errands, grocery shopping and put things away, take the car for gas and repairs, take the cats to the vet etc. Result- more time and energy. I understand that not everyone can afford this particular solution, but perhaps husbands, kids, or friends can pitch in instead.

Prioritize – you must decide which things are important enough to spend your energy on. Example; I decided to stop (I hope it will only be temporary) making the beds every day. Result-more time and energy.

Sleep more – Set your bedtime as early and your wake up time as late as necessary for you to get adequate rest. This will also help your energy and keep the symptoms at bay. Don’t have time to sleep? – [B]yes you do[/B]! Do it or pay the price.

I’m not being unsympathetic. I know how hard it is to adjust your life to this illness, but we all have to come to grips with it eventually. Something must give, and if you cheat your body, you only cheat yourself and your family.

I wish you the best of health, but meanwhile, you need a little tough love and straight talk!

cara,

each of us suffers differently. some gbsers at the beginning find breathing too taxing but you can’t rest from that & must suffer till you heal some. i slept 20 hours/day at the beginning of recovery. you must rest more lying down. pushing yourself will slo your recovery. you must learn to anticipate from your past history when you must stop whatever it is you are doing. take care. be well.

gene gbs 8-99
in numbers there is strength

Hello Cara,
I have CIDP, not GBS, but fatigue is a big part of both syndromes and I have heard our members say many times GBS means “Get Better Slowly”. I was into the second year before my need for naps ended. And I was into the third year before I became aware that my fatigue was lessening. I can still get very tired, but I am alot better now then I was during those first two years. FOR GBS AND CIDP FATIGUE “IS” VERY REAL. I think you’ll feel better if you can work in a quiet time for yourself.[IMG]http”//members.tripod.com/~katyskubicle/mice2/mouse21b.gif[/IMG]

Cara,

I started my road to recovery after GBS in 1986. After leaving hospital, my mom took me to physical therapy at least 3 times (if not more) a week for a few months. This time was very difficult, as I wanted to do normal things but my body just wouldnt allow it. I went through my 20’s and the first half of my 30’s needing a great deal of sleep, sleep and more sleep, not realizing at all that the tiredness/fatigue I felt was a residual of GBS. As far as I was concerned I was 100% recovered.

Just like you said, my fatigue had and has nothing to do with my strength, after my ‘recovery’, I have always been quite strong. I had what I thought was another onset of GBS in April 2005, and unfortunately everything has changed for the worse since then. FATIGUE ……. I’m not even sure how to even begin to explain the fatigue I felt (started taking a medication a few weeks ago and has changed my life). [B]If I managed[/B] to get up at 8am, feeling like I had had no sleep for days (after a good nights sleep), within the hour, I would be so fatigued that I sometimes could barely lift my arms, at times my words would slurr and I would practically be comatose. Lifting the phone to my ear was exhausting and painful, and I would (actually still do out of habit now) ignore phone calls because I was too tired to have to think and have a conversation. There wasnt even the matter of cleaning the house, as I could only manage part of a room a day – if that. My husband would often cook or get food, or my daughter would make something for us to eat. I couldnt even face going to the grocery store, before even getting through the doors i felt I couldnt even go further. I would manage somehow, forgetting a lot of things, get home, and go straight to bed for as long as I possibly could – even after a 4 or 5 hour ‘nap’ I didnt feel better.

OK, having said that, every few weeks, I would have 2 or 3 good days where I would try and do everything I hadnt done over the past weeks. I felt so guilty, so ashamed, angry, embarrassed. I didnt want my children to see me like this, this is how they would always remember me. I wondered how my husband could love me anymore …. he always saw me sleeping, always in a bad mood because I felt ashamed and tired. I would almost cry everyday, praying that, as much as I hated medication, I could find some meds that could help me. I seem to have found that medication, and in a few weeks my life is different!

Cara, Im sorry about the long message, but ….. I just wanted to say that you are 6 months post gbs, unfortunately you are probably trying to do too much because you have so much responsibility. You are still in a way going through the recovery phase, and often stress tends to make residuals worse or recovery more difficult – this could possibly be what you are experiencing. You are not alone in this, and I am so sorry you are feeling like this.

Cara

Residual fatigue & pain is finally documented thx to dr. parry
GBS Newsletter – The Communicator Spring 2003
Residual Effects Following Guillain-Barre
Gareth J. Parry, MD Professor of Neurology, University Of Minnesota

Guillain-Barr~ syndrome is a disorder whose excellent prognosis is invariably emphasized. Widely accepted figures suggest that 75%-85% of patient make a complete recovery. However, many of my patients have complained to me of minor but annoying persistent symptoms continuing for years after the initial paralytic event. Although I have made no systematic study of the proportion of patients with these residual complaints it is certainly more than the 15%-25% that the figures in the literature would suggest. The great majority of studies of the ultimate outcome in GBS are based on telephone interviews or retrospective chart reviews and seemingly minor complaints may have been missed or disregarded. Thus, patients are often asked if they have returned to their previous work or other previous activities but they may not have been asked whether they have more difficulty performing their former activities. A note of caution was sounded in one small study from Dr. J. McLeod and his colleagues in Australia (J. Neurol Sci 1976; 27:438-443) who objectively evaluated a small group of 18 recovered GBS patients and found that half of them had objective residual neurological abnormalities. Even then the residual abnormalities were considered to be significant in only four patients. A recent important paper from Dr. I.S.J. Merkies and colleagues in Holland (Neurology 1999; 53:16481654) has established that residual effects from both GBS and CIDP are much more common than has been generally reported and that seemingly minor neurologic abnormalities may still result in annoying disabilities. The study used a validated index of fatigue severity to assess residual disability. It included 83 patients who had suffered from GBS an average of five years previously. About 80% of these patients experienced fatigue that was considered severe enough to interfere with their life despite the fact that the majority had normal strength or only minor weakness. They noted also that the fatigue did not seem to improve over time; the fatigue index score was the same in patients in whom many years had elapsed as it was in patients whose acute illness had occurred only 6-12 months previously. This paper provides sound scientific support for the validity of the observations of my patients who regularly complain of fatigue even when they have returned to all or most of their former activities and who are working full time at their former jobs. Although their strength may be normal when they are examined in the doctor’s office they are clearly unable to sustain the same level of physical activity that they had performed prior to their GBS.
A second under-appreciated symptom that may persist for many years is pain. Certainly, severe disabling pain is very rare. However, a number of my patients complain of persistent discomfort in their feet. The discomfort may take the form of annoying paresthesias (tingling) or there may be a vague aching discomfort. Occasionally there is more severe burning or stabbing pain. The symptoms have the same characteristics as typical neuropathic pain in that they tend to be worse in the evening or at night and are particularly annoying following days during which the patients have been up on their feet a lot. The discomfort is not particularly responsive to analgesics but usually does respond to antiepileptic drugs such as gabapentin, or antidepressant drugs such as amitriptyline, drugs typically used in the treatment of neuropathic pain. However, these medications have to be taken on a daily basis to be effective and one problem with deciding whether to treat this residual symptom is that the discomfort is usually rather mild. Thus, patients may be daily irritated by their symptom but be reluctant to take a drug every day for a symptom that significantly bothers them only once or twice a month. I have seen no mention in the medical literature of this phenomenon. It is possible that I see a highly selected group of patients in my practice who had initially been more severely affected and that the prevalence of this annoying residual symptom is much higher in my patients than in the usual population of recovered GBS patients. I would be most interested to learn whether the group of patients reported by Merkies and colleagues also suffered from minor persistent discomfort.
The basis for both of these seemingly minor residual symptoms (fatigue and pain) is probably axonal degeneration. During the acute illness the predominant underlying pathology in most patients is segmental demyelination, a completely reversible phenomenon. However, some degree of axonal degeneration is almost invariable and in some patients it is severe. As recovery occurs function is restored by a number of mechanisms. Axonal regeneration of motor axons probably plays very little role in restoration of function except in the more severe cases. Rather, surviving axons send out small branches called collateral sprouts that restore the nerve supply to those muscle fibers whose nerves have been damaged. This process of collateral sprouting is very effective at restoring strength to a muscle but the efficiency of the muscle suffers the muscle must work harder to achieve its goals. Thus, fatigue may result even when there appears to be full restoration of strength. On the sensory side, even a small number of damaged sensory axons may be sufficient to generate spontaneous discharges that are registered as pain or discomfort.
It is entirely appropriate that the good outcome of GBS should be emphasized during the acute illness. During this time, the patient is losing control of many motor functions, sometimes including life-preserving functions, and constant reassurance from the attend-

lng physicians plays a vital role in the recovery process. However, it is equally important to be aware that residual problems are experienced by “recovered” GBS patients. Acknowledgement that such residual problems exist will go a long way towards helping patients deal with the frustration of their incomplete recovery.
More research is needed to discover an effective treatment for the residual fatigue. In addition, since these persistent symptoms are probably related to the degree of axonal damage that occurs at the time of the initial attack, we also need to continue to strive for earlier and more effective treatment of the acute stage of the disease so that these residual problems are minimized.

I can’t believe your neurologist is sending you to a GP about the fatigue when it is now known to be part of GBS. I personally don’t want medication for the fatigue as it is better in my view to tailor my lifestyle to what my body can take. I don’t know what a GP will tell you. Incidentally, there are now 10 studies I know of that documenate the fatigue as residuals so there is plenty of documentation to find for SS, though they are a hard group to sell. You can google gbs and fatigue and come up with a lot. Best of Luck, Jeff

Cara,

ditto Jeff, the neuro sending you to the gp????? It doesnt sound as if he is aware of how GBS works.

Hi,

One line I used on my doc describing fatigue is, the longer I do something, the more disabled I become. Nobody is going to snow a doc these days about fatigue, because it’s so prevelent in working society, let alone the disabled group. Everybodies tired, right? I kept the doc on the ‘disabling effects’ of fatigue, and pounded that one home, and talked very little about fatigue itself. Seemed to get across better.

I’m 2 ½ years into it – and fatigue does play an important role in my daily activity –with rehab 4 days a week and working from home each afternoon (sitting on computer/phone) I still find days when I need to take a nap for an hour or so –up at 6:30 –bus to rehab at 7:30 back at noon so I am more then ready for bed by 8-8:30 pm .. And when working on weekends (we produce music festivals most summer weekends) I find that I play catch up the next week—And I do notice that my rehab is affected when tired – late nights I am afraid have left my life! – we are careful to schedule things around my rehab activities –my guess is that fatigue will be around so for me rather then push myself beyond the limits I default to my body …. At age 69 – who needs these late nights!

Let you body be your guide ..and you will endure

Robert L

Cara,

Good idea to fight for getting SS. Hope it comes through for you.

Something else you might want to try- go to a phyisologist (not a head doc, but someone who specializes in managing recovery care).

I saw one who was such a help to me. He opened some doors for me, gave me advice about insurance issues and helped me to know what to do next.

Unfortunately, he moved away after about a year, but I saw him for about a year which got me through the worst part of my recovery.

Good luck with getting SS.

Cara,

I understand about the fatigue lasting for several days. I seem to have bouts of that too – mostly when I’ve overdone, but sometimes I can’t pinpoint the cause. It’s most agravating when it lingers. Don’t know when to expect a good day or when to expect a bad one.

Hope you see the doc soon to put your mind at ease at least.