coming back from a bad week--PEM/fatigue/crash?

[Andielyn]

First, I am relatively new here and not diagnosed with CFS, although I have many of the symptoms. I'm still learning, getting advanced testing done for anemia/blood loss/low iron at the present.

I work full-time but have missed a lot of work. Last week I was making up time from missing work the week before, working late and working at home in the evenings. By Wednesday I was limping along, made it through the day at work, but could not conjure up enough energy to do anything beyond go home and go to bed. Thursday morning I had a massive migraine which lasted through Saturday. Sunday I got up and showered and out of the house, played with the dog, had a decent day. Monday I was so fatigued I could not function--along with body/joint aches, and an overall unwell feeling. I could not get up. I would get up and fall right back in bed and be out like a light. Repeat on Tuesday and Wednesday. I finally was able to get up and get to work yesterday and did well. Last night I could not sleep--combination of worry and caffeine, I'm sure. My direct supervisor is being understanding but does not know fully the picture (and neither do I) and though I have shared testing I'm getting done, etc., I don't have any answers. I just know I need to stop this cycle and be able to get my butt to work EVERY DAY or I am going to lose my job. I am only skating by because I do excellent work when here and without sounding too cocky, the only one in the department capable of much of the work.

I have a Fitbit and it gives me great data, which I track not only on their website but in a separate spreadsheet I've created. There is clearly a pattern. I'm now trying to use it to pace myself...I've reset my goal to 5,000 steps a day which I hit pretty easily on a work day. I've given up exercising for now, except walking, which I've done on a limited basis. I realize that my situation is much milder than most of you are dealing with, but I want to get better, not worse. (Okay, that's obvious. )

Does this pattern ring a bell with any of you? Or am I barking up the wrong tree? Until I find out what the heck is wrong with me I am trying to adopt a CFS/ME lifestyle, per advice from my intro post, at least when it comes to fatigue and PEM. I've been encouraged by other members to interact/continue to post even though I'm not diagnosed. Thanks for listening and any suggestions or insight you might share. ~Andielyn

 

[MikeJackmin]

My guess is that you overexerted (no surprise) and that you tend to over-exert again, just as you start to recover. You might not have much choice about this if your job is on the line, but it seem pretty clear that this is a likely explanation.

Imagine that an exertion level of 100 will knock you down and cause a crash. You take a day or two off, start to feel functional again, and chances are your new crash level is somewhere around 50. If you had another two days to take it easy you'd be back to 100 again but you don't. You go to work, hit the 75 mark, and crash again. Rinse, repeat...

If your job demands your time, it demands your time. For the next few days, ruthlessly cut off everything else. Get your feet up, rest, don't spend all day reading or surfing the internet. Rest. Don't be fooled into thinking you are Ok when you start to feel great again, but continue for a couple of days more. Then you'll hopefully be back on track and out of danger.

BTW I use a pedometer app on my smartphone as a fitbit proxy and it has proven to be a valuable management tool.

 

[Andielyn]

@MikeJackmin Thank you! That makes a lot of sense. I was a little surprised at the "don't spend all day reading" thinking that reading is resting but you are right, it is not. When I am down, I am down, and can't even read. So it makes sense that rest is just that--rest. I think you hit the nail on the head--I am fooled into thinking I am OK and back on track. Good to know that the pedometer has been a valuable management tool for you. Also, is that a bluetick coonhound as your avatar by chance?

 

[MikeJackmin]

German Shorthair Pointer. I wish I could arrange a blood transfusion, just one percent of that dog's energy would power me through my days just fine.

As for the pacing stuff, the way I like to describe it is to imagine you were playing football, but none of your injuries would hurt until two days later. The only way you could survive is to set limits and stick to them, no matter how good you felt on game day.

Sadly, this goes against everything we normally do when faced with a challenge. We push, we keep finding ways to work around our limits, we dismiss the warnings, we endure, we put the task ahead of our fears and our discomfort. 99% of the time, this is the way to overcome problems and become a stronger and more capable person. Here, it's how to ruin yourself. Managing CFS is unlike anything else I have ever done. It's been a long and painful process to adapt to what's really required.

 

[Andielyn]

That was my second guess. Beautiful dog. I'm with you on a blood transfusion...my dogs would keep me powered for days on end. Thanks again for the advice...that framework makes sense with the football analogy and yes, it does go against what's ingrained in us. I don't know if this is what I'm dealing with or not--and I hope not--but until the doctors can figure out what's causing my symptoms, I'm going to manage my energy in this way. Thanks for your help and insight. I hope you are doing well...it sounds like you are managing it pretty well. ~Andielyn

 

[MikeJackmin]

From Reddit's CFS FAQ:

"A correct diagnosis for CFS first requires that certain other conditions be ruled out. The US Center For Disease Control offers a complete set of diagnostic guidelines here:

http://www.cdc.gov/cfs/general/index.html

and they recommend the following tests:

http://www.cdc.gov/cfs/diagnosis/testing.html

Stanford University offers a concise list of diseases which need to be ruled out here:

http://chronicfatigue.stanford.edu/overview/diagnosis.html

And Wikipedia has some more here:

http://en.wikipedia.org/wiki/Fatigue_(medical)#Chronic_fatigue

Note that Excessive Daytime Sleepiness can confused for CFS as well.

Sleep disorders are common source of chronic fatigue issues. One reason why sleep disorders are so common is because most people with these disorders cannot tell that they have a sleep problem, no matter how carefully they try. The only way to know is to have a proper sleep study done. An undiagnosed sleep disorder can ruin your life, and most of these disorders are treatable. Do not skip this step!

When you see your doctor, also request a check of your vitamin D levels. Low D levels seem to be common among CFS patients, and it causes fatigue and other CFS-like symptoms. It's easy to fix with a prescription supplement.

Also note that if you have traveled to far-away places, particularly if you have traveled to tropical countries, you may have picked up a disease which is unfamiliar to your local doctors. Standard blood tests will not generally detect such diseases. If a tropical disease is a possibility, a visit to an appropriate specialist is in order."

 

[Andielyn]

@MikeJackmin Again, awesome information. Thanks! I am also perusing the book, "Chronic Fatigue Syndrome: A Treatment Guide" which has a lot of good information and the different diagnostic criteria. I was diagnosed with iron-deficiency anemia last year, took iron supplements, re-took lab tests and my doctor sent me a postcard saying still anemic, take iron for 6 more months and check back. So right now I'm going down the path of diagnosing/ruling-out anemia, by way of a new doctor, who says I was anemic, my iron is ok now, but certain values still off. The tests I'm having next week are to look at my small intestines. I feel like I at least have someone who is treating me.

While I have most of the symptoms I am definitely not ready to accept a diagnosis of CFS and hope it is something else and treatable. Sleep study is next on my list. I have not had my Vitamin D levels checked, so I'll add that to my list. All the learning I've done and communicating since joining this site has given me a whole new perspective on this illness and how difficult it is to find care for it.

Until I have better answers I am heeding your advice--and that of others--and altering my lifestyle to avoid these crashes I'm having. It can't hurt and can only help. I'm limping along right now. Thanks so much for being willing to share your knowledge and insight and support. ~Andielyn

 

[Seven7]

@Andielyn In the meanwhile if you are in USA, fill out FMLA like people with migrane does: so you can take the days as needed. And that will protect you in the meanhwile at least for a year, while you figure out.

 

[jeff_w]

First, I am relatively new here and not diagnosed with CFS, although I have many of the symptoms. I'm still learning, getting advanced testing done for anemia/blood loss/low iron at the present.

A very wise thing to do at this point would be to find a doctor who will test you for CFS (they must be knowledgeable enough to do so). This is, as I'm sure you've discovered, a very serious illness, and people should not wait until everything else has been ruled out to test for CFS. There is a myth that CFS should be a "diagnosis of exclusion," when in fact it is a serious illness in its own right. It can also be ruled in or out with appropriate blood testing combined with symptom presentation.

I just know I need to stop this cycle and be able to get my butt to work EVERY DAY or I am going to lose my job.

I completely understand the position you're in. Yet, there is also another way to look at the situation here. You could also say that you need to stop the cycle of push-crash or you very well might lose your health.

I'm now trying to use it to pace myself...I've given up exercising for now, except walking, which I've done on a limited basis. I realize that my situation is much milder than most of you are dealing with, but I want to get better, not worse. (Okay, that's obvious. )

Pacing yourself is a great idea.

Does this pattern ring a bell with any of you? Or am I barking up the wrong tree?

The pattern definitely rings a bell!

I'll tell you a bit of my own story here. Back in August of 2011, I lost about 1/2 my energy level, had body/joint aches, headaches, and a general "unwell" feeling. My CFS was definitely "mild" back then, and I also had no idea that I had CFS. So, what did I do in response to my poor health? I proceeded to double my efforts at graduate school and at work! I continued pushing myself, putting in 8-10 hour days for a few years, all the while feeling unwell but remaining relatively functional, until I suddenly became worse. Much worse, in fact. To make a long story short, I became entirely bedridden in June of 2014. There was no real warning, just BAM: Bedridden. I remained bedridden for roughly 6 months. I had to take a leave from my doctoral program and quit my job as a research assistant.

I sought the help of a CFS specialist and am slowly getting my life back. At this point in time, I'm well enough to leave the house, but only for a few hours at a time. I'm not well enough to return to full time grad school. There's no way I could work a full time job.

I can now walk slowly for 8 minutes at a time before needing to lie down, which is a huge accomplishment. Contrast this with the reality that I used to be extremely athletic, regularly lifted weights, and could run three 8 minute miles in a row!

Until I find out what the heck is wrong with me I am trying to adopt a CFS/ME lifestyle, per advice from my intro post, at least when it comes to fatigue and PEM. I've been encouraged by other members to interact/continue to post even though I'm not diagnosed. Thanks for listening and any suggestions or insight you might share. ~Andielyn

Where are you located? If you have the means, you might seriously want to see a CFS specialist as soon as you can, to rule out CFS. Any CFS specialist worth their salt will test you for a variety of other conditions, anemia included, to see if your symptoms are resulting from a condition other than CFS.

My advice: See a CFS specialist ASAP. (If they rule out CFS, that's great news!) In the meantime, try to negotiate a temporary leave with your job. Or, if your job allows it, arrange to work from home--from your bed. Do everything within your power to rest. You might feel that you are resting a ridiculous amount, but this is exactly what is needed to help you heal and prevent you from getting worse.

Good luck! I know how hard this can be. Continue to post and keep us updated.

 

[L'engle]

I agree you must rest as much as possible. The big crash can come without warning when you think you are doing OK. Losing your health is even worse than losing your job! Gt to a specialist if it is at all within reach.

 

[jeff_w]

Losing your health is even worse than losing your job!

Exactly.

@Andielyn - If I could go back in time knowing what I know now, there are only two things I'd change in my entire life: I'd go to a CFS specialist immediately upon realizing that I had PEM and other suspicious symptoms. I'd also stop working immediately and go on an immediate leave from grad school. If you can get disability (or another source of income, such as paid leave), then you might want to seriously consider stopping work ASAP.

Worst case scenario: You crash and become entirely unable to work, and are then financially dependent upon the government or family for decades (if family support is even an option for you--for many it's not). If you have family that are willing and able to support you for the time being, then seriously consider letting them do so. Don't ruin your health and become a lifelong financial burden to them. Keep this temporary by taking immediate action.

Got to a specialist if it is at all within reach.

Yes. The sooner, the better.

If you crash, you face the possibility of losing your health for years. Some people even lose their health for decades--or for the rest of their lives.

 

[soxfan]

When I was first sick I DID NOT have PEM....that came much later in the illness. I also continued to work (part-time) and I would make it through my shift just barely and then come home and crash.
Weird thing is on the days I didn't work I was able to do most of my normal things...shopping...exercising...socializing etc.

It was on the days I worked that completely wiped me out. Now 10 years later I still have the same problem with getting mentally fatigued easily. I didn't know that's what it was at the time though.

I only had a few symptoms in the beginning but the fatigue/exhaustion was the worse and still is. I even went to a very well known CFS specialist and he didn't do anything to help me because he said I didn't have any of the symptoms that he could treat...

I still have major sleep issues (had 2 sleep studies) and un-refreshing sleep. Chronic tiredness and get very mentally fatigued quite easily which turns into total exhaustion where I have to lay and just rest for hours.

Pacing has never helped me and I resting before an outing doesn't help either. By 3pm I am totally done for the day and have nothing left even if I haven't done much....

I still haven't been diagnosed with anything really and guess I will never know what actually caused all this for me...I became sick overnight 10.5 years ago and was never again the same...

Wish I could help you more but just wanted to share my experience

 

[jeff_w]

@Andielyn -

I've been thinking about your situation today. I realize that I probably said some things that were very difficult to hear, and I hope you haven't been scared away from the forums.

I actually envy your position right now, because you haven't crashed yet. You have a golden opportunity here to seek help prior to becoming bedridden, which is a luxury that many of us never had. If we'd sought help when we were at your stage of illness, we'd be in much better shape now.

If you look at my posts to you above, you will see the number of "likes" that they've received. This shows you how many people here agree with what I've said. And all of those people have lived the reality of CFS/ME.

I wanted to be sure that I told you everything that I wish someone had told me back when I was in your position.

Take care,

Jeff

 

[Andielyn]

@jeff_w and others...thank you so much for your feedback, sharing your experiences and advice. No you haven't scared me away! I didn't check over the weekend and thought I was getting email updates when something new was added. Thanks for your concern, @jeff_w and checking back...I'm still here!

I am located in Ohio...I am in the middle of some testing now, but I am not going to let this lie after all that I've learned. Yes, it is scary stuff...scares the crap out of me, honestly. I don't know how you all manage it.

So the big take-away from what you all have written later is I haven't crashed YET and if I can get help before that happens I will be in much better shape. Wise words...thank you. Taking advice I received here I spent the weekend resting; I had plans that were moderately active on Sunday but canceled because I didn't want to push myself and that was HARD TO DO.

If anyone knows any reputable CFS/ME doctors in the Ohio area please let me know.

Thanks for all the support. This community is great! I appreciate you all helping me despite the fact I have not been diagnosed as such. ~Andielyn

 

[jeff_w]

Hi @Andielyn - Glad you're back.

I am located in Ohio...I am in the middle of some testing now, but I am not going to let this lie after all that I've learned.

Good. Can you travel? Taking care of this illness is very worth travelling for.

If anyone knows any reputable CFS/ME doctors in the Ohio area please let me know.

Most people have to travel to see a good specialist, as there are very few of them.

I can vouch for my specialist, Dr. Kaufman. People travel from all over the USA -- and all over the world, literally -- to see him. He's taken me from entirely bedridden, barely able to lift a fork, to where I am now. He's located in California at the Open Medicine Institute (in Mountain View, CA).

All of the good specialists have waiting times, and Dr. Kaufman has one of the shortest. The last I heard it was 2 months. He's also the most reasonably-priced specialist in the country. He charges $400 for an office visit (while some other specialists charge over $1,000!).

Here's a thread about my experience with Dr. Kaufman.

Here's a link to the Open Medicine Institute, where he practices.

Yes, it is scary stuff...scares the crap out of me, honestly. I don't know how you all manage it.

It takes years to come to terms with and learn to manage. The good news is, if you receive help at your current stage, you'll have a much easier time of this than most.

So the big take-away from what you all have written later is I haven't crashed YET and if I can get help before that happens I will be in much better shape.

Exactly.

Taking advice I received here I spent the weekend resting; I had plans that were moderately active on Sunday but canceled because I didn't want to push myself and that was HARD TO DO.

Excellent job with the resting. And yes, it's extremely hard to back out of plans in order to rest. But, it sure beats the alternative, which is watching your health get worse and worse.

You might find that as you continue cutting back and resting, you start to feel much better. Don't be fooled. It's a mistake to return to your previous activity levels when you start feeling better. Keep up the resting, instead. So many of us learned this the hard way--and crashed and burned for years.

Thanks for all the support. This community is great! I appreciate you all helping me despite the fact I have not been diagnosed as such. ~Andielyn

Ah, you're welcome! It's a true pleasure to help prevent someone from going through the sheer hell that so many of us on this board live everyday. And as I've said before, you have a golden opportunity here to stop the progression of your illness at an earlier stage than most of us.

Keep posting and keep us updated!

 

[Dr.Patient]

I agree with everything @jeff_w said. Consider them my advice as well.

 

[Andielyn]

Again, thanks @jeff_w and @Dr.Patient for seconding his advice. I will find a way to travel if that is what it takes to get what I need...unfortunately I don't have disposable income or vacation time, but a surplus of neither time nor money does one any good if you are sick, right?

Tomorrow I'm swallowing a PillCam SB...a small pill-size camera that will image the entire length of my small intestines. I will move forward from there. I hope I have a better idea with these results and where to go next if there are no clear answers. I think I fit enough of the criteria and have sat on it long enough that I need to act, and your messages have helped lead me to that thinking. If I do have it, I think I am still in a mild phase and hopefully can manage it.

Having dealt with dire medical situations with my daughter I am one who likes the information no matter how difficult and deal with things head on. Much better than not knowing.

 

[jeff_w]

Tomorrow I'm swallowing a PillCam SB...a small pill-size camera that will image the entire length of my small intestines. I will move forward from there. I hope I have a better idea with these results and where to go next if there are no clear answers.

Intestinal problems are pretty common in CFS. If you get a positive result on this test, you could still have CFS. The same is true if you get a negative result on the test. What I'm trying to say is, the test you are doing can't really answer whether or not you have CFS. Unfortunately, only a doctor who knows how to test for CFS can answer that question.

For example, I had intestinal problems as well as pituitary problems, which were discovered back when my CFS was mild. These problems were spotted prior to my being diagnosed with CFS, though looking back, I clearly had it at the time. I spent two years being treated for intestinal and pituitary problems--and all treatments failed due to underlying, undiagnosed CFS. The CFS itself was causing the problems I had, and my two treating doctors were very frustrated, as they had no idea why their treatments were failing.

I think I fit enough of the criteria and have sat on it long enough that I need to act, and your messages have helped lead me to that thinking. If I do have it, I think I am still in a mild phase and hopefully can manage it.

A "mild phase" can certainly be managed more easily than a more severe phase. But it's important to consider that mild CFS is also more likely to go into a true remission with expert help. So, if you've had mild CFS for only a year or two, you're more likely to go into a remission with expert help than if you've had mild CFS for five or more years.

If you do have CFS, even mild CFS, then you have many underlying things wrong with your body right now. A CFS expert will find those specific underlying problems--and treat them appropriately. If you choose to treat your CFS on your own by resting as much as you can, then you will not be getting help for your underlying physical problems. You might be preventing those problems from getting worse, but even then, there are no sure guarantees of that working. Some people get worse even though they rest all the time, simply because their underlying illness is aggressive.

Would you rather have CFS for a decade, being forced to scale back and struggle to manage every little part of your life, or would you rather go into remission a year after seeking expert help? Generally, nipping this in the bud as early as possible is the best strategy for safeguarding your quality of life and future health.

I will find a way to travel if that is what it takes to get what I need...unfortunately I don't have disposable income or vacation time, but a surplus of neither time nor money does one any good if you are sick, right?

Agreed. Also, getting treatment for CFS early on will help protect your future earning capacity. So that's another part of the financial equation to consider.

I can't speak for everyone on this board, but I'd bet good money that if most could go back in time, they'd spend whatever money they had on treating their CFS early. This sure beats having money drained year after year playing "catch up" with your health and having to take massive amounts of time off--or having to shift to working only half time, which many of us do at some point. Also, plenty of people wind up getting fired due to needing so much time off.

I'm sorry to be so blunt, but I've been on this board everyday for 9 months and have read thousands of stories by now. Obviously, you need to do whatever you think is right for your particular situation. I do want to be sure, however, that you are armed with many doses of reality as you weigh your options.

Having dealt with dire medical situations with my daughter I am one who likes the information no matter how difficult and deal with things head on. Much better than not knowing.

The fact that you haven't gone into denial is a huge asset.

Best of luck @Andielyn -- with whatever you decide.

 

[Andielyn]

Hi @jeff_w ...thanks again for your insight, and I don't mind blunt.

I'm learning a lot, and see that many symptoms I have but never connected are common among CFS. So specifically right now I'm trying to assess anemia/insidious blood loss in the intestinal tract.

I get it with true remission versus managing long-term...good point. If I do have it, I can trace it back to spring 2012, so 3 years.

Thanks for your willinngess to share and shed light...I appreciate it!