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[bubbagump]

{I posted this on the chronic illness in academic thread a few days and since no one replied, I'm reposting here. Hope that's ok....}

Questions about Chronic Fatigue syndrome:

I've searched through the fora here and haven't found what I'm looking for.

I'm in Canada now and am trying to find a new doctor in my new city who can diagnose me. I realize it's diagnosed by ruling out other factors and doctor's who are supportive can be hard to find. This is my issue.

I've struggled with depression/anxiety for the past 5ish years after a series of traumatic events. Was on anti's, therapy, etc. with slow but positive results. Managed to phinish my PhD, spent a year in a postdoc, and am now in my 2nd yr on a tt. It's all a miracle that I'm still standing. Most of the issues contribute to this initial depression have been resolved.

I moved to Canada for this tt and the continual stress in my life from moving after my phd and now an international move (yes, this part of Canada is VERY different than the U.S. and any place I've ever lived), have left me completely spent.

I thought it was depression creeping back, which could be part of my current problem, but its more than that. I've been treated for hypothyroidism for a few years and now am working with a doctor via phone for adrenal fatigue. But I'm not getting much better. I have headaches now but attribute that to the high amounts of Vit C and adrenal extracts I'm taking. Adjustments are made when this happens, and it goes away. I get dizzy sometimes and 2 yrs ago had an MRI because I was dizzy for 1 mth straight and ear infections were ruled out. The MRI was inconclusive and the dizziness gradually went away on its own. I have constant back and neck pain. But I've had that for 20 yrs due to an accident. I'm now getting bladder infections and more frequent colds. And sometimes feel like I have a fever but it doesn't register. My body temp is often low ( a sign of adrenal fatigue). I sometimes get occular migraines (self-diagnosed) with dizziness, headaches, and blurred vision that lasts about an hour. I've been getting these for about 4 years but very infrequently.

It's so hard to find a doctor who will listen to me and not just try and prescribe anti-depressants. I was so desperate last year that I decided to try another anti-depressant anyway. I took one pill and was dizzy for 2 days. The most frustrating part is the lack of concern by every doctor i see. Except a fantastic Osteopathic doctor in my post-doc town. But I'm not there anymore...(*sigh*)

I was reading again about all the symptoms of Chronic Fatigue and more and more it seems I fit the description. Especially since I've noticed swollen lymph nodes under my left armpit in the last 2 mths.

I have an appt in a couple of weeks with an Endocrinologist. But he's a crochety old man who, upon my first visit, insisted that all this alternative stuff about thyroid problems, adrenal problems, etc. was just a part of a "cult". He insisted he only looked at NUMBERS, they don't lie. I was ready to kick him and run out the door, but I had no choice where I live and knew I had to just sit and bite my tongue. He finally relented and then softened up a little and said he would prescribe me some of the Armour Thyroid I had been taking. I thanked him but also expressed my concern that although this was helpful, i was still incredibly fatigued all the time, etc. His response was, "OH FOR GOD'S SAKES, EVERYBODY IS FATIGUED!" Yes, he was yelling at me. He wouldn't let me get a word in and didn't listen when I did. He reminded me of my crochety old father actually. But he came around again and then said he would order some tests for adrenal insufficiency, cortisol levels, etc.

I don't know what these tests will show, probably nothing that will matter to this doctor. It's so frustrating when they don't listen. My primary doctor is of no help either and I've seen 3 of them trying to find someone to help me.

I've looked around on other forums for Chronic Fatigue specifically and can't find any mention of doctor's in my area who will diagnose and treat this issue. I realize the treatments are for the symptoms only; anti-depressants, etc. But it would certainly help to have a diagnosis at least. I have to pay out of pocket for the doctor I'm working with via phone consultation and the supplements are expensive. Now, I'm thinking that I need to pay out of pocket to find an alternative practitioner who I can see in person. That is if I can find one.

I can't seem to get it together. I barely made it through last year, spent the summer recuperating, moved to a new apartment, went to an international conference, was sick with the flu for 3 wks, and then summer was over. I got little work done and came back feeling even more overwhelmed instead of refreshed. It's a little past mid-semester and I had such a busy beginning with committee work, wrote a grant, etc. that I'm so burned out right now I can't even get myself to the office most days unless there's a meeting or I'm teaching. The rest of the time, I sleep, watch movies, or do nothing productive. I have a manuscript to revise, another new course to prep for next semester, rework another syllabus, etc. But I can't manage to get anything done and I"m afraid of going into the new semester. I'm afraid I'll collapse while trying to teach.

Maybe someone will listen to me then.

I haven't shared anything with my colleagues. I present myself as positive, happy, and energetic. Like I always have, but I'm always dying inside.

Sorry for the long ramble. I guess I'm looking for support, ways to navigate through this tt position, and any suggestions on finding proper care.

Thanks for listening.

[theritas]

I'm so sorry you're having a tough time.  I have struggled with allergies which cause fatigue for me, and I know that it's very difficult to get the answers you are looking for when you lack the energy to advocate for yourself.  I just wanted to wish you the best, and hope that you get some help soon.

[hegemony]

Bubbagump, I have a chronic illness that presents a lot like Chronic Fatigue, so I've been through the mill in getting a diagnosis and learning about it.  So here are my thoughts, with the proviso that I am not a medical doctor, have not examined you, etc.

To me what you describe does not sound like Chronic Fatigue per se.  You have many of the symptoms of Chronic Fatigue, but the other things you describe sound like something else.  The thing about those symptoms is that they occur in many, many, many situations.  Since there is no specific test for Chronic Fatigue, diagnosing it is a diagnosis of exclusion: once you've ruled everything else out, that's what's left.

But the symptoms of Chronic Fatigue all travel in a pack, and although your symptoms are co-occurring, they seem to have started each at a different time.  You have evidence that the headaches are a result of some medications and/or supplements you're taking.  The dizziness (which is gone now?) can literally be the result of sixty different conditions, and one of the most common ones is a simple virus.  (Many viruses cause neurological symptoms -- think of polio for a severe example.  In this case, many viruses cause an otherwise harmless residual dizziness that the brain has to "relearn" to overcome.  Been There Done That.)  Your neck and back pain seems to be the result of an accident.  The occular migraines come and go. 

What's left is the swollen lymph nodes, bladder infections, frequent colds, wonky temperature, and a bout of the flu.  I'd suggest that you are what's called "run down."  This shouldn't be dismissed any more than Chronic Fatigue should be dismissed: it's a real condition with real symptoms that need to be addressed.  Everything you've described is very fatiguing; you've been under stress for quite some time, and that impacts the immune system.  In the olden days, if you were of the leisured classes, you'd take what was known as the "rest cure."  Your immune system needs a chance to climb back to normal so it can fight off the illnesses that come its way.  So my suggestion would be that it's not a syndrome that you've "caught" in the way one catches a virus, but an underperformance of your immune system, entirely understandable after what you've been through.  Like Chronic Fatigue, there's no specific cure: you just have to take very good care of yourself, avoid overtaxing the system, and wait it out.

Best to you.

[canadianbacon]

PM me if you want some advice on doctors who treat Chronic Fatigue in Canada.

[obprof]

You know, sometimes I think a diagnosis is comforting. Especially for academics like us -- it's hard to deal with uncertainly. And we can be really hard on ourselves (work harder! Be dedicated! Do everything perfectly!).

But sometimes there are just things that can't be categorized. Even with all our advances in medicine.

Of course you should still continue to try to rule out different medical issues, and continue to test etc., and talk to your doctors.

But I hope you will also give yourself "permission" to cut yourself a bit of slack. Reading through your post, it looks to me like you've actually accomplished quite a bit in the last little while.

You may not be able to get a proper diagnosis of anything, but you still owe yourself some rest and a chance to recover. Also, keep in mind that this is the worst part of the semester. Things will get better.

[wilbrish]

I think Hegemony's advice is good.  I would add a caveat to your story: I don't think "working with a doctor over the phone" is good practice and is probably illegal.  I would never work with a doctor who could not see me in person.

[glowdart]

It might just be my docs, but Chronic Fatigue is always considered a diagnosis of last resort for them.  This doesn't mean that they don't think it exists, but rather that there are far too many other problems that people too often dismiss as chronic fatigue (thryoid, diabetes, vitamin & electrolyte imbalances, allergies, menopause, hormone imbalances, tick or mosquito borne illnesses, auto-immune disorders, etc.) 

It could be something really simple -- like are you in sunny Canada or cloudy Canada, and how are your vitamin D levels? 

Or, are you having other reactions to the Vit C & adrenal things?  Have you tried just cutting out all supplements and medicines that are not prescribed and vital for a few weeks?  You could just as easily be having a reaction to the things you're taking to help. 

Definitely find a new doc, but I would suggest that you go to a good GP first and get all of your major baseline bloodwork done & assessments done -- vitamin levels, basic auto-immune panels, common diseases in your area, allergies, iron, hormones (if you're a woman), etc.  Then try to determine what issues are related and which ones are not.  Juggling multiple chronic conditions can be tough, but the first important step there is to figure out symptoms which are from which conditions.

And do cut yourself some slack.  You're under a ton of stress - and that manifests in all sorts of wonky ways.  And, the physical and emotional let down after finishing a degree and starting a job can be profound. 

[womanofproperty]

Maybe "rest cure" isn't the best way to describe what to do:

http://193.62.111.58/broughttolife/techniques/restcure.aspx

But what other posters have said about going to a good GP & getting a thorough workup, taking care of yourself and letting your immune system recover does seem to be appropriate.

Be good to yourself, OP. It's not all about work. Get enough light and exercise. Do something enjoyable every day. Start now.

[pathogen]

You know, sometimes I think a diagnosis is comforting. Especially for academics like us -- it's hard to deal with uncertainly. And we can be really hard on ourselves (work harder! Be dedicated! Do everything perfectly!).

But sometimes there are just things that can't be categorized. Even with all our advances in medicine.

Of course you should still continue to try to rule out different medical issues, and continue to test etc., and talk to your doctors.

But I hope you will also give yourself "permission" to cut yourself a bit of slack. Reading through your post, it looks to me like you've actually accomplished quite a bit in the last little while.

You may not be able to get a proper diagnosis of anything, but you still owe yourself some rest and a chance to recover. Also, keep in mind that this is the worst part of the semester. Things will get better.

Unfortunately, doctors seem to have a word for when there's not a diagnosis, and that word is "psychosomatic". I'm sorry for all your trouble. Is there any way you can make it to an academic medical center? I've found the difference between that and community doctors can be huge.

[spork]

You need to find a physician with good diagnostic and communication skills. Medical care is customer service. If you don't like the service you are getting from one provider, you need to find another, even if it's inconvenient.

[bubbagump]

Thanks everyone. Unfortunately, I live in a place where the health care is awful. I have tried and tried to find a good doctor. I keep trying. It's pretty rare to find a doctor with good diagnostic and communication skills, especially where I am now. Wait times are months or sometimes years. This is unlike any system in the U.S. It's incredibly frustrating.

I don't think there is a "sunny" Canada! If there is, I'm not there.

I've had several tests to check all my vitamin levels, hormone levels, etc. They almost all come back within normal limits. Iron was a little low the last time that was checked, so I took a supplement, didn't help. Vit D has been a little low in the past, took a supplement, didn't help.  I'm not just starting out with this, I've been dealing with it for a few years and have had several workups. And I started taking supplements because I was feeling so crappy in the first place and sometimes they make it worse because my body cannot process them. So I cut the dosage or stop for awhile.

Working with a doctor over the phone is not illegal. It's nutritional "consulting". It's a practice located in CA with an extensive interactive website. There is a sliding fee scale so it's more affordable than what I could find here. Which is next to nothing. I have more time and more frequent contact with this office than I would any other doctors office. I don't have a problem with it. It's just that I think I've reached the limits of what they can do for me. So, I keep looking here for something else.

After reading and reading all of the available material online about CFS, I still think it's a possibility. It does come on gradually in some cases and I have several of the symptoms including the major one; extreme fatigue after physical exertion. For example, I recently took a Zumba class with a friend on a whim and was out for about 2 days afterward. I took a 4 hr nap the next day. I also have all the issues with inability to focus, concentrate, short term memory loss, lightheadedness. Several times I've been in the middle of a lecture or discussion and completely forgot what I was saying. I realize that happens with a lot of people, but I also sometimes forget if I walked my dog or not. Very spacey at times.

There are a lot of other related symptoms and not all came on at once but many occur now and it seems to fit the criteria. Even if i was diagnosed, it's really useless, because the only treatment is to treat the symptoms. It likely wouldn't make a difference, except perhaps peace of mind that it's not psychosomatic.

It could be many things and the frustrating part is not having the support of a caring doctor to help me figure it out. I'm still expected to do my job and keep on chugging along. But I feel like I'm suffering in silence all the time. It's also been a little challenging to keep track of all the tests I've had because I've moved a few times in the past 4-5 yrs.

And thank goodness they don't use that 'rest cure' anymore!

[glowdart]

When you say the supplements didn't help, do you mean that the numbers didn't go up or that you didn't feel any better?  If the numbers didn't go up, then that speaks to malabsorption, which can be caused by all sorts of things.  

All of these symptoms could be any number of diseases, including extreme fatigue after exhaustion. My advice?  Stop trying to self-diagnose off the web and get thee to a doctor.  

It does come on gradually in some cases and I have several of the symptoms including the major one; extreme fatigue after physical exertion. For example, I recently took a Zumba class with a friend on a whim and was out for about 2 days afterward. I took a 4 hr nap the next day. I also have all the issues with inability to focus, concentrate, short term memory loss, lightheadedness. Several times I've been in the middle of a lecture or discussion and completely forgot what I was saying. I realize that happens with a lot of people, but I also sometimes forget if I walked my dog or not. Very spacey at times.

[antiphon1]

Listen to glowdart.  Get to a doctor.  Just because you've not had great results from the doctors you've seen thus far doesn't mean you should give up or start self medicating/diagnosing.  Find someone who will work with you on finding the cause of the problems.

And thank goodness they don't use that 'rest cure' anymore!

Actually, this treatment might be an excellent recommendation.  You probably don't feel able to take any time off at this point.  However, you may need some R&R.  Take a weekend.  Use some sick days.  Get out of town. 

[hegemony]

Whether it's Chronic Fatigue or being run down, I'm afraid it won't help to get an official diagnosis or a doctor who agrees with you on the causes, since neither of these (CF or being-run-down) has any official treatment.  In both cases you just have to rest up, avoid stress, exercise moderately (not no exercise, but not overdoing it), eat well, make sure you get enough sleep, and take care of yourself generally.  It would be nice if these conditions were as simple as a missing nutrient, but unfortunately they're not.  It is true that a lot of alternative healers treat these conditions, because alternative healers step in where conventional medicine is of little help.  Generally the alternative healers' treatments mean that the condition may abate over time, which is just what you get when you take good care of your health without any formal treatment.  I think a lot of people appreciate being listened to and having someone to talk things over with, which is probably what alternative healers do best.  It sounds to me, OP, as if you have so much on your plate that that alone would be enough to account for a stressed immune system and a variety of symptoms.  It may be something on top of that, of course.  But my first goal would be to take excellent care of my health, whether that means you'll vanquish all the symptoms, or whether that means that your body will have more strength to fight off an illness that's landed on top of everything else.

[totoro]

I have hypothyroidism and take thyroxine. My numbers are all great but I am still tired. Maybe it's just the way it is...