Fatigue is NOT in the head

    • Anonymous
      July 17, 2010 at 7:31 pm

      Hi everyone,

      The story: mom (at 61) got H1N1 vaccine in early March 2010, she started getting GBS symptoms mid-April 2010 (entering the hospital a week after). She was very healthy before – no on-going illnesses, kept a clean house, etc. She had intubation then tracheostomy, and was paralyzed except for her head, neck, and hands. She’s slowly gaining back strength in her arms, and her legs are slowly “waking up”. She’s going through acute rehab right now.

      One of the reasons I’m posting is because, thanks to this forum, I know to expect fatigue from mom, and that she really needs rest between workouts. The rehab doctor came in when mom was resting one time and demanded why she wasn’t constantly moving, why was she just lying there being lazy? The doctor expressed disappointment that mom looked like she was giving up, when I respectfully disagreed because mom never turned down a therapy session, and that she has fatigue – it’s a residual of the disease.

      The doctor said, “Fatigue? That’s all psychological. That’s all in her head! Not a residual. Where did you get that information? I bet they’re not doctors!” I mentioned that I got the information from the GBS Foundation Forums, and no, we’re not doctors, but we all HAD (or experienced through a loved one) GBS.

      Then I went home, printed out this document (I got from a friend getting her phD at UCSD) and proceeded to highlight some parts of the document.

      http://docs.google.com/viewer?a=v&pid=sites&srcid=ZGVmYXVsdGRvbWFpbnxzbWFsbGNhY2hlfGd4OjQzM2IwNGFmMjYyMWEwZDE (apologies but I don’t know how to make a nice looking link in this forum).

      It’s a very lengthy read, and I’m not a medical student (I’m a software developer), so feel free to correct me. Fatigue pertaining to GBS starts at the bottom of page 6. What I highlighted:

      [LIST]
      [*]”Patients experience fatigue already at the onset of GBS, and it can surprisingly persist for many years, even after total recovery of muscle weakness.”

      [*]”a cross-sectional case control study showed that fatigue is an essential and incapacitating residual symptom in patients with immune-mediated polyneuropathies [64]. Eighty percent of patients that recovered from GBS or CIDP or had ongoing CIDP suffered from severe fatigue. The patients stated that being severely fatigued leads to tremendous impairment in their daily life and social activities. As a consequence their quality of life was reported to be negatively affected in the long term.”

      [*]”severe fatigue showed a positive correlation with age in GBS [38].” Positive correlation, from what I understand, seems to mean the severity increases with the GBS survivor’s age.

      [*]”severe fatigue has a higher prevalence in female GBS patients (74% in females versus 45% in males, p = 0.003). This difference in sex ratio is also seen in patients with chronic fatigue syndrome and can probably best be explained by endocrine differences between males and females [77].”

      [*]”In GBS and in CIDP it could well be that dysregulation of the hypothalamic–pituitary–adrenal axis accounts for residual fatigue, which could be linked to the antecedent infections seen in GBS and smoldering low-grade infections possibly going on in CIDP, because similar immune-mediated fatigue is seen as a residual symptom after an infectious illness [46]. Dysautonomia could also be an important contributor to fatigue [14] and is frequently seen in patients with GBS.”
      Dysautonomia (autonomic dysfunction) is a broad term that describes any disease or malfunction of the autonomic nervous system. Autonomic nervous system makes up the body functions that your brain controls, but you don’t think about (like, breathing, heartbeat, digestion, etc).

      [*]”In general, the occurrence of fatigue in GBS seems independent of the severity of (residual) neurological deficits [37, 38, 64]. This differs from findings in other neuromuscular disorders, where severely affected patients experience higher levels of fatigue [40, 49].”
      [/LIST]
      My dad was there when the doctor showed up (I wasn’t there), but he gave her the paper. She spent a minute reading my highlights, nodded and said “ah yes, I see”, and that was it. Who knows if she actually gets it.

      Maybe this document will be useful for some of you.

    • July 17, 2010 at 7:43 pm

      I know it can be difficult but PLEASE seek another doctor if you can. In med-school doctors read a paragraph or two on GBS. Many have never met a patient with it. 1 in a 100 000 people means that 65 000 people on the planet have GBS right now. And if not, let this doctor know that the fatigue does not register on any tests such as EMG.
      You have found a good place to vent, inquire, inspire and well…whatever, welcome.

      best

    • Anonymous
      July 17, 2010 at 8:15 pm

      Good point, guitar guy! Mom will have a week or 2 left in this hospital because of insurance, so it will be “over soon” (in terms of dealing with this doctor). Fortunately, the physical and occupational therapists have more experience with GBS and are more understanding. All I can do is hope that we can take care of mom when she does come home, whatever state she’s in.

      As for the doctor, hopefully this scientific paper educates HER in case she experiences another GBS patient in the future.

      Thank you for the welcome and the factoids! For the record, I, too, want to punch those that say “it could be worse” and “but she’ll be better in 6 months”.

    • July 17, 2010 at 9:02 pm

      stay strong! I would be dead if it weren’t for my family. You sound like a wonderful daughter! Everybody will have to both pitch in and understand your Mum needs to rest.

      Will her therapy lapse because of insurance? I am very lucky to have coverage through work.

    • Anonymous
      July 19, 2010 at 11:02 am

      Aw, thanks Guitar Guy! =) I do try!

      They say that insurance extends her stay at the hospital each week for a week and will evaluate her progress – if she’s not “improving” she gets sent home. So far she’s improving little by little.

      After she’s sent home we’ll have a choice of outpatient or visiting rehab for about 3 weeks because of the insurance. I think after that, we are on our own. So we take each day at a time.

    • Anonymous
      July 19, 2010 at 11:54 am

      Leilani,

      I too had “mild” GBS after the H1N1 vaccine in November 2009. I think that your mom is the 5th person to come on this forum with a reaction. My story is under the Vaccine post. I am on my 6th neuro because I have continued symptoms. I had severe nausea (lost 25 lbs) and was told by a couple of neuros that nausea is not a neurological symptom. The latest neuro has diagnosed me with dysautonomia (an autonomic nervous system out of whack) and guess what, nausea and gastroparesis are symptoms of this!

      I still struggle with fatigue daily as do a lot of people on here. (a B12 supplement can help with this.) I too was completely healthy before this vaccine and am now plagued daily with fatigue, nausea, muscle twiches, headaches, muscle pain/joint pain, etc. I have improved a lot since the early days, but am still not “normal” and have accepted that I may never be again.

      The ignorance of doctors about this disease is astounding. I went to so-called experts and they scratched their heads. I stumbled around for about 2 months to several different doctors who did not have a clue, went to the ER twice, and received no IVIG or plamapheresis because my symptoms were not severe enough. I still maintain that had I received treatment, I would not be continuing to have symptoms and would have recovered a lot more quickly. You need to be an advocate and seek answers on your own and question the doctors. it sounds like you are on the right track. Good luck!

    • July 19, 2010 at 12:25 pm

      [QUOTE]After she’s sent home we’ll have a choice of outpatient or visiting rehab for about 3 weeks because of the insurance. I think after that, we are on our own. So we take each day at a time.[/QUOTE]

      There are many excercises that she can do when she’s home and at a relatively cheap cost. please feel free to ask me and others for suggestions, we are all in this together.

      best:)

    • Anonymous
      July 19, 2010 at 2:07 pm

      I am very familiar with the lack of learnedship some neuros have. My also said there is no pain in GBS but thanks to this forums members and also the main forum I found this to be totally untrue. I also copied some of the Foundations pages which I highlighted and handed them to my neuro. He again said they didn’t exist. I am no longer one of his patients. I now use Kazim Sheikh, head of the neuro dept at the University of Texas Health Science. He is also a professor there. By the way, I only had a 2 1/2 week wait to get an appointment there. Unfortunately doctors sometimes engage mouths before thinking. God Bless.

    • July 19, 2010 at 2:41 pm

      glad to hear you are in better care. How often are you going to see this neuro? I dont seee mine for 3 wks. and haven’t for 3. is 6 wks. normal to wait to see neuro for appt.? my family doc is handling my case well, I think……..?

    • Anonymous
      July 20, 2010 at 2:29 am

      Hi JessicaH! ———————————

      I read your story a while ago when this all started with mom. You have my admiration for continuing to work a full-time job AND taking care of two kids!
      Our first neuro was wondering why mom had bowel obstruction for a while. At least he said he was going to look into it more, but we found something on this web site about the autonomic nervous system affected by GBS, printed it out, gave it to the doctor, who thanked me for educating him (humble doctors are great!).

      I agree, the doctors who think they know all about GBS and are not open to learning are very discouraging. It is a rare disease, and maybe more doctors should be observing my mom right now so they can learn from her (I say!). But, I don’t think she’d like to be gawked at like a monkey at a zoo. =)

      I was wondering how you’re doing with the vaccine compensation (if you don’t mind me asking)? I haven’t started with hers but plan on doing so soon. Did you have to pay a fee?

      Thanks Guitar Guy! ———————————

      I’m absorbing as much as I can watching PT and OT work with mom everyday. I am learning, through observation, how to get her out of bed standing, then into a chair. In her current state, walking would require a gigantic machine that will dangle her in the air (like a rockclimbing belt). It’s been difficult explaining to her why we are making her do things (old-fashioned Taiwanese parents who’ve never actually gone to a gym to work out or never completed a sit up in their lives…it’s kinda funny in a black humor way).

      I’ve been moving her arms/legs every weekday for the past 3 months. She has great range of motion on everything except for her left shoulder and first knuckles of her fingers, because all the tubes were on her left, and I was afraid to move them out of the way. I’d forget to get her to make fists. There’s too many things to do, and not enough time (or my memory) to do them! =)

      When we are on our own I’ll make sure to hit you up (and the rest of the forum) for exercise suggestions. I was hoping she wouldn’t need the high tech machines by the time she comes home. So we have to wait and see.

      Hello Pat! ———————————
      Awesome, you handed it to that first neuro!

      I have researched so much of GBS that *I*’ve become an expert (haha I joke!). However, I’m wondering if I’m starting to nit-pick tiny details a bit too much. Like, one doctor who misread the charts and insisted mom wasn’t on any anti-depressants until last week, when the psychiatrist said he increased the dosage last week, and she’d been on anti-depressants for weeks. I fight every battle as if it were important and am getting tired of fighting. =) I don’t know how to recognize what’s not important.

      I have very little patience nowadays, unfortunately, it’s aimed at everyone.

    • Anonymous
      July 20, 2010 at 10:08 am

      Leilani,

      Thanks for your kind words. Just tell your mom to not give up and hang in there. It gets better, very slowly, but it does.

      As for vaccine compensation, I have called around about this. Since the H1N1vaccine is so new, it is not under the traditional vaccine injury compensation program. It is under a new program, the Countermeasures Injury Compensation Program. [url]www.hrsa.gov/countermeasures[/url]. All we can do right now is send a letter of intent, just saying that you would like to file a claim, (within one year of the date of the vaccine) and once the program is up and running, then they will consider your claim for out of pocket medical, wage loss and possibly pain and suffering. Who knows how long that will be though, years I am guessing? There is no fee to file this letter of intent and no need for an attorney. I have called a few attorneys and they are not assisting with the H1N1 vaccine claim filing, again because it is so new. I have a legal background myself, but don’t really have the time to deal with it, but at this point, you just send the letter. You don’t need to send medical records at this time.

      One issue I am concerned about it though is that I have had doctors reluctant to attribute my problems to the vaccine. Now let’s think about this, I was a healthy, active 38 year old, perfectly fine. I get the vaccine and 4 days later, my symptoms start and progress to the point where I lose my reflexes, have arm weakness, lose 25 lbs because I can’t eat, and various other problems. Yet they ask me, did you have a virus, were you exposed to a virus with your kids….I am 100% sure that my problems were caused by the vaccine, but will the govt agree if the doctors won’t back it up? We will see. Good luck!

    • Anonymous
      July 21, 2010 at 1:16 pm

      Hello all,

      We are new to the group. My wife had GBS about 1994 with constant improvement with hard work, exercise and a good attitude. Over the past few years there has been some decline in strength and endurance (age 61). She has had very little followup with neurologists. When she began having severe fatigue, weakness, endurance, and increased pain we sought neuology followup. When we asked why neurologists don’t routinely monitor their GBS patients we were told that was because she didn’t have GBS. She HAD it but not now. He further stated that the weakness, fatigue, etc was not due to GBS and she should have a workup by her primary. He seemed reluctant to prescribe any pain meds. I have been in healthcare for over 40 years and know gibberish when I hear it. We recently sent him the publications from this site. We have one friend who is in a similar situation and is also frustrated. It seems that once the crisis is over, no one wants to deal with the future. We know that GBS is quite variable, but no one is willling to talk or help anticipate the future or confirm that we are not neurotic. We are hoping to find an MD in northern California who can at least give some advice. Any recommendations on aproach?

    • Anonymous
      August 7, 2010 at 8:00 pm

      JessicaH!

      Thank you so much for explaining the differences between VICP and CICP! I was about to go insane and didn’t have time for much research due to being at hospital all day. Thank you thank you thank you!

      I too am concerned about linking the vaccine with GBS because it’s so easy for the government to say “you prove it’s the cause”. Well I can’t, but why don’t they prove it’s NOT the cause? I would hope, in your case, it’s more obvious because the reaction happened really quick, 4 days after the vaccine. C’mon!

      Good luck to us!

    • Anonymous
      August 8, 2010 at 8:14 am

      leilani, as you have read with the posts, and also on the main foundation pages there is a lot of fatique involved in GBS/CIDP. And yes some of it could be mental. When you worry about what is going to happen next, or if I can get past this disease it does cause mental fatique. But physical fatique is very prevalent in this also. My last neuros nurse called to let me know my neuro had been doing a lot of reading and wanted to see me again. I explained that I had given him his chance and he failed. I also informed her that maybe he should listen the next time someone talks about how they feel. God Bless and good luck. Look for a doctor who has ears and not just a mouth.

    • Anonymous
      August 8, 2010 at 8:17 am

      [QUOTE=Leilani]Hi JessicaH! ———————————

      I read your story a while ago when this all started with mom. You have my admiration for continuing to work a full-time job AND taking care of two kids!
      Our first neuro was wondering why mom had bowel obstruction for a while. At least he said he was going to look into it more, but we found something on this web site about the autonomic nervous system affected by GBS, printed it out, gave it to the doctor, who thanked me for educating him (humble doctors are great!).

      I agree, the doctors who think they know all about GBS and are not open to learning are very discouraging. It is a rare disease, and maybe more doctors should be observing my mom right now so they can learn from her (I say!). But, I don’t think she’d like to be gawked at like a monkey at a zoo. =)

      I was wondering how you’re doing with the vaccine compensation (if you don’t mind me asking)? I haven’t started with hers but plan on doing so soon. Did you have to pay a fee?

      Thanks Guitar Guy! ———————————

      I’m absorbing as much as I can watching PT and OT work with mom everyday. I am learning, through observation, how to get her out of bed standing, then into a chair. In her current state, walking would require a gigantic machine that will dangle her in the air (like a rockclimbing belt). It’s been difficult explaining to her why we are making her do things (old-fashioned Taiwanese parents who’ve never actually gone to a gym to work out or never completed a sit up in their lives…it’s kinda funny in a black humor way).

      I’ve been moving her arms/legs every weekday for the past 3 months. She has great range of motion on everything except for her left shoulder and first knuckles of her fingers, because all the tubes were on her left, and I was afraid to move them out of the way. I’d forget to get her to make fists. There’s too many things to do, and not enough time (or my memory) to do them! =)

      When we are on our own I’ll make sure to hit you up (and the rest of the forum) for exercise suggestions. I was hoping she wouldn’t need the high tech machines by the time she comes home. So we have to wait and see.

      Hello Pat! ———————————
      Awesome, you handed it to that first neuro!

      I have researched so much of GBS that *I*’ve become an expert (haha I joke!). However, I’m wondering if I’m starting to nit-pick tiny details a bit too much. Like, one doctor who misread the charts and insisted mom wasn’t on any anti-depressants until last week, when the psychiatrist said he increased the dosage last week, and she’d been on anti-depressants for weeks. I fight every battle as if it were important and am getting tired of fighting. =) I don’t know how to recognize what’s not important.

      I have very little patience nowadays, unfortunately, it’s aimed at everyone.[/QUOTE]
      We must never give up. Divided we fall but united we stand. We are all with you in our prayers and thoughts. And always remember patience is a vertue.

    • Anonymous
      August 10, 2010 at 12:00 am

      Do you know you can read the medical charts while STILL in the hospital”” Yes-you have the right to ask and have them given to you the patient or someone else in the room. Right then and there you can see what’s written and tell the staff what is written.
      The doctors can’t even follow each others instructions even when what they are all doing is written out in the patient’s chart.

      Unfortunately in today’s medical world pain and fatigue are seen as psychological in nature.It took over 7 years for me to be diagnosed with CIDP.

      This forum offers immense information from people who have experienced it first hand.

    • Anonymous
      August 10, 2010 at 10:06 am

      Leilani,

      I just wanted to comment on the fact that I had symptoms 4 days after the vaccine. To me, this is pretty clear and obvious that the vaccine caused my problems, but I have had all of the doctors pretty much question that this was the cause. This last one actually told me that vaccine reactions occur weeks after the fact. I don’t see how that it possible, but she was discounting it as well and this is a respected physician. I think it is going to be an uphill battle trying to prove this, but I hope that there is enough reference to it in my medical records that it will help prove my case. Good luck! Hope things are improving.

      Jessica

    • Anonymous
      August 10, 2010 at 8:31 pm

      The medical establishment generally does not want to accept responsibility for the damage done to people who have contracted GBS through vaccines.
      That would mean accountability and lawsuits and compensation to the victims. It’s very easy for them to take an self-protective or an adversarial approach and to delay, deny & discredit their patients claims, and to tell the patients to ‘prove it’. (And since the patient is very sick, very weak, with their entire life thrown into a state of upheaval, what can patients do?)
      Well, as much as possible, we can do what we can to get the truth out. And not let ourselves be bullied or discounted in the process.

      In my case, I rode my bike to get my annual flu shot in Nov.2007, and that was the last time I was able to ride my bike. The whole town and the docs know this is true, because for 10 years I always rode a bike (having no vehicle, and being very athletic); but since that vaccine, I’ve had to drag myself along behind a rollator or with a cane. The symptoms of severe headache and feeling ice-cold started within a few days, and the rest of the symptoms: inability to tell hot from cold, severe dizziness, severe back pain, muscle spasms & tingling, and repeated, painful contractions resulting in inability to walk followed during the next few weeks. The severe contractions in the chest muscles occurred during Christmas time, at the same time as the sudden nose-bleeds, red rash, sore eyes/darkened vision and hearing loss, and the sudden large weight loss.

      Most doctors don’t even seem to know what the symptoms of this condition are, and it’s not surprising that there are so many conflicting viewpoints from them, since they are so ill-prepared to recognize and deal with patients experiencing GBS onset. In my opinion, they have no right to argue with the patients who are undergoing a damaging reaction to a vaccination. The statistics are skewed regarding GBS and vaccines. It’s obvious that doctors are actually turning people away, disregarding their symptoms or misdiagnosing them, instead of being true to “good science”, which documents and makes decisions based on the facts and for the benefit of the patient, with the motive of responsible patient care being their top priority.

      Even that sketchy little pamphlet, with a few notes for anyone who has a reaction, should be enough for them to co-relate the symptoms with GBS.
      Too bad that patients have to be put in this deplorable position, having to ‘prove’ to the docs that it was the vaccine that caused their condition.
      But since we experience the truth of the matter, we stake our claim on it.