Do you work / have career?

[SickOfSickness]

Now that I think about it I do feel health issues going down the hill in last ten years. I think what really makes it worst is stress. I know if I stress about anything for a while I start to get headaches and sleepy feeling with fatigue.

See if you match adrenal fatigue. That would be great for you if it's only your adrenals. Stress can probably trigger hormones to get out of balance too.

 

[Sushi]

RedLineBoy

Unfortunately most specialists (over the gamut of specialties) have no idea how to test for and treat ME/CFS, so if you do indeed "have" it, you have not had the type of testing (except for the viruses) that would show up abnormalities.

Do look at the International Consensus for ME and that will give more ideas about what they should be looking for.

Sushi

 

[WillowJ]

I am concern and confused, actually both. As of now I am able to work 50 hours a week without any help. I can get up at 5 am and go to bed at 8 pm, in between I require one to three hours of nap. However, I can physically work. My cognitive is not so good.

Does this place my CFS in less sever category than many on this forum?

Will my functional ability decrease as I age?

The more I spend my time on this forum the more I learn how sever CFS has effected you in all way.

Deep down I also know that if I was to get ride of my light headed and was given my concentration back I would feel normal. But that is far from bleep. I might win a lottery before my body is able to get ride of light headed.

Should I be concern for the future to come?

I think the moderate and somewhat severe patients are the ones on the forums. The mild ones (like you; I know a disease like this is never mild but it's comparative) are generally out trying to work and don't have energy to talk online. The very severe ones can't use a computer much or at all.

Some people do get worse but that seems to be the minority. A different minority improve somewhat. Many people have a fluctuating condition that overall neither improves nor worsens.

It is true that some of us (who are moderate/severe) have found that when we pushed ourselves to keep working or going to school when this seemed too difficult but we wanted to do it anyway, we ended up getting worse and we blame it on working "too hard" for our conditions.

Light-headedness and concentration sound like that could be from orthostatic intolerance, which could be treatable. See if you can get a referral to a specialist who can figure out what type you have.

So I was thinking today should I approach each symptoms by taking meds specific to those symptoms. For example, if I have headaches then take Topamax, if I feel fatigue then take Nuvigil. I'm not sure if this is a good idea too.

Topiramate (Topamax) cannot be taken on an as-needed basis: it needs to be tapered up to an effective dose and then taken regularly with no missed or late doses (missing a dose can put one at risk for a seizure, even if one didn't have seizures previously), and to stop taking it safely, would need to be tapered back down.

There is some advice in the Primers about specific medications: both of these appear there. Links toward the bottom of this page: http://naame.org/about-mecfs/

a video presentation here:

At this point I have no choice to work. I need to pay bills.. I might hold up on the idea of going to school. I just thought my life would have been different. I wanted to do something in life. To be honest with you, my family thinks I'm lazy...My wife yesterday told me that I am the most laziest person she has ever met. That really made me feel like crap.

Stuff like that makes me feel like I need to push my self and become something of my self, but I just can't...My body just wont.

What do I do? I don't have a supportive family.

I'm sorry. This is unfortunately far too common. Some of us are working hard to improve the way the disease is studied and understood (and perceived), and to get funding. There was a time when multiple sclerosis, rheumatoid arthritis, etc., was thought of in similar ways. We seem to be stuck here for the moment, but good things are happening and the point is coming when everything will change, and people will know it's a real and a serious disease, just like Lupus or whatever.

 

[taniaaust1]

To properly address symptoms with meds, its best to know what is causing them, take your headaches as an example .. an OI headache isnt necessarily treated with pain killers but rather may be treated by boosting blood volume (if the OI involves that), compression stockings if POTS caused etc

If you have reactivating CMV and EBV causing you symptoms, that is what you need to get treated.

"What I've been noticing recently is Monday are start of all fatigue and not feeling feel then by Wednesday I'm feeling better with clarity."

If you work Monday to Fridays, the pattern of your ME/CFS would be a very strange as with this illness, one wouldnt be expecting to be becoming better in anyway on the Wednesday if you worked both Monday and Tuesday. You should be worst on the Wednesday in this situation due to the post exertional fatigue.

 

[taniaaust1]

My biggest symptoms are;

Headaches, light headed feeling, fatigue, lack of concentration, short term memory issues, mood swings. I tried all kinds of vitamins, nothing works to its fullest.

I just had a thought of another thing which could be causing the symptoms you quoted above. Have you had a 2hr Glucose Tolerance Test with the insulin included (the insulin levels arent usualy included unless the doctor specifies wanting those results too). I have hyperinsulinemia and when my insulin is too high it can give me ALL THE symptoms you said there. So I strongely suggest you to get a 2hr GTT done with insulin level included.

 

[RedLineBoy]

Are all these condition cause by CMV / EBV? In other words, did the viral activate certain condition?

How as I all find and healthy before I came down with CMV / EBV?

My insulin level are fine as my H1b report are typically normal. I lost a lot of weight few months ago by adhering to strict diet by cutting out bread. I felt good for a while, but nothing dramatic to ride on. My symptoms were still there even when I was losing weight.

So I'm thinking that the virus is making our bodies react as well response differently.

 

[Insomniac]

To properly address symptoms with meds, its best to know what is causing them, take your headaches as an example .. an OI headache isnt necessarily treated with pain killers but rather may be treated by boosting blood volume (if the OI involves that), compression stockings if POTS caused etc

If you have reactivating CMV and EBV causing you symptoms, that is what you need to get treated.

"What I've been noticing recently is Monday are start of all fatigue and not feeling feel then by Wednesday I'm feeling better with clarity."

If you work Monday to Fridays, the pattern of your ME/CFS would be a very strange as with this illness,...
....You should be worst on the Wednesday in this situation due to the post exertional fatigue.

I agree with Tania here. What you describe is not like post exertional malaise.
Also like she suggests: Have you tried Valcyte or any anti virals for EBV and CMV?
Valacyclovir for EBV
Valganciclovir for CMV
The only problem is that they are expensive. I knew a woman who was diagnosed with "CFS". She took Valacyclovir and voila! was well. I was very jealous as it did not work for me. So it turned out that she did not have CFS that they diagnosed her with, just an active EBV infection that was giving symptoms very similar to CFS.

Are all these condition cause by CMV / EBV? In other words, did the viral activate certain condition?

Yes many conditions can be caused by EBV. I once knew someone who actually got liver problems - jaundice from EBV. She also completely recovered.

 

[RedLineBoy]

I agree with Tania here. What you describe is not like post exertional malaise.
Also like she suggests: Have you tried Valcyte or any anti virals for EBV and CMV?
Valacyclovir for EBV
Valganciclovir for CMV
The only problem is that they are expensive. I knew a woman who was diagnosed with "CFS". She took Valacyclovir and voila! was well. I was very jealous as it did not work for me. So it turned out that she did not have CFS that they diagnosed her with, just an active EBV infection that was giving symptoms very similar to CFS.


Yes many conditions can be caused by EBV. I once knew someone who actually got liver problems - jaundice from EBV. She also completely recovered.

I asked my doc about it and he says its not a good idea and that he will not prescribe it. Where do I find a doc to give me valcyte? I asked an ID doc before and he denied giving me the pills by saying there only need it if you have low immune system.

 

[RedLineBoy]

The big question, why would EBV / CMV reactivate? Reactivation = CFS? Is this not true?

 

[Sushi]

The big question, why would EBV / CMV reactivate? Reactivation = CFS? Is this not true?

Many possibilities as to why they might reactivate but there is usually more than this going on in ME.

Sushi

 

[WillowJ]

The big question, why would EBV / CMV reactivate? Reactivation = CFS? Is this not true?

There are also other diseases which are also associated with reactivation of viruses, or in which reactivation of viruses can be a problem. Usually it's not a problem unless there is something the matter with the immune system.

We do not know at this point whether such infections are a cause or a symptom.

From Stanford:

The virus lives in its host for the host’s entire life. EBV has been linked to some rare cancers, and can lead to infection in patients with weakened immune systems (such as organ transplant or HIV patients).

for HCMV:

The virus lives in its host for the host’s entire life. It can cause life-threatening illness in patients with weakened immune systems (such as organ transplant or HIV patients).

HHV-6:

The virus lives in its host for the host’s entire life. It is possible that it can be reactivated, but even if reactivated, many people never experience symptoms. However, if the virus is reactivated in people with weakened immune systems (such as organ transplant or HIV patients), it can cause severe disease. HHV-6 has been associated with CFS as well as with other diseases such as Multiple Sclerosis (MS), Fibromyalgia, and temporal lobe epilepsy.

enteroviruses:

They infect millions of people worldwide and can cause many different diseases from the common cold to meningitis to paralysis. They are more likely to affect children, adolescents, and anyone with a weakened immune system (such as an organ transplant patient or HIV/AIDS patient).

 

[August59]

The EBV can enter 2 different phases, a latent phase and a lytic phase. The latent phase is just what it says, but the lytic phase replicates up to a 1000 times and destroys the cell. There are so many studies on EBV and everyone seems to deliver a different outcome.

http://www.ncbi.nlm.nih.gov/pubmed/15386591
http://www.ncbi.nlm.nih.gov/pubmed/23135711
http://www.ncbi.nlm.nih.gov/pubmed/23577022

 

[RedLineBoy]

So why not allow doctors to treat ebv, cmv and hhv 6? I assume if those virus are treated then I see no way of individual developing CFS? How many people on this board can say they have CFS without any of these viral infection?

 

[Little Bluestem]

I was not tested (or even diagnosed) when I came down with CFS, so I have no idea what caused it. I would guess there are many here in the same situation.

Allowing doctors to treat ebv, cmv, and hhv6 assumes that they want to. Some don't.

 

[vamah]

So why not allow doctors to treat ebv, cmv and hhv 6? I assume if those virus are treated then I see no way of individual developing CFS? How many people on this board can say they have CFS without any of these viral infection?

A lot of doctors just don't believe that these viruses can reactivate and cause problems later in life. I had an infectious disease " specialist" tell me as much and refuse to even test me for them. I paid several hundred dollars to have the tests done myself by going outside my HMO and it turned out my HHV 6 levels were through the roof. I think my HMO doctor wouldn't test for 2 reasons: because he was too arrogant to consider that he might be wrong and because if the HMO tested and I was positive they would have to pay for the very expensive drug (valcyte) used to treat it. I am fortunate that I had 1) the ability to pay for the tests and doctor bills myself and 2) a friend who wouldn't let me give up until I got some answers. As it is, I have been on valcyte for 6 months and my viral level is still very high (although lower than before) so this is not the end of my search for answers, but I learned to have faith inmy own judgement and not let doctors convince me that it is all in my head and treat me with only increasing doses of psych meds. I hope you are able to find some answers. It is easy to want to give up when you have an illness that officially doesn't exist, but I encourage you to keep pushing.

 

[Thomas]

I do not like to be negative, but people with ME/CFS often get worse. You cannot count on having the cognitive (and physical) capacity that you have now into the future. If you were a nurse or a PA, a 'brain fog moment' could have a negative effect on another person's health and life. I think you should remove them from consideration.

That's just not true.

 

[taniaaust1]

That's just not true.

bluestems comment was true unless one has an exceptional doctor who is managing to treat most of his ME/CFS patients. One study done showed that hardly anyone at all did recover.

Most ME/CFS patiences thou do learn to "manage" their symptoms better with time even those who may be in fact getting worst. One can follow three routes long term with ME/CFS.. improving, stable or worsening. No one can honestly tell another what path their ME/CFS will take.

Too many doctors try to play this illness down to their patients (as they dont want to cause anxiety, depression or whatever.. maybe they dont like to think about patients getting worst under their care? as that is like them failing), I think most at this site has experienced a doctor playing down the illness at some time or another. (In my own case it was the doctors who told me I was likely to be recovered in a couple of years. Its now 16 years later. I nowdays have a lot of damage in my body too with lots of abnormalities due to the ME, EVERY YEAR, Im developing new issues with this illness and more complications eg last year my bowel prolapsed due to the IBS-C which is one of my symptoms).

Im currently in a follow up study to possibly vertify findings from a study I was in 7 years ago. That being that our midbrains (one of the most important part of our brains as everything else passes throu there), those with ME/CFS are loosing white brain matter at a rate of 1% per year. The graph of damage to our brains actually matched how long we had been sick for.

 

[Thomas]

I am still working in my job in sales...but just barely. I never really took a leave of absence in the beginning and just trecked along as best i could. Ya i probably over did it a bit but i've never really heard of anyone getting better from doing nothing. I may not be able to work much longer but who knows maybe i will.

Besides, there is no proof that if i stopped working that i wouldn't have declined slightly either. Or maybe i would have been a bit better but still not perfect and then find it impossible to bet back into a career i left for a year or more. you have to consider all the alternatives. and the countless people that probably have ME, struggle with work and life but also don't hang out on forums like us. its a big world out there and we are a tiny drop in the ME bucket.

Diseases don't always conform to lifestyle. You don't hear people with MS or HIV or Parkinson's say that if they just stayed home more perhaps their illness wouldn't have progressed. But what do i know? Ive only been sick for 22 months.

 

[Thomas]

bluestems comment was true unless one has an exceptional doctor who is managing to treat most of his ME/CFS patients. One study done showed that hardly anyone at all did recover.

Most ME/CFS patiences thou do learn to "manage" their symptoms better with time even those who may be in fact getting worst. One can follow three routes long term with ME/CFS.. improving, stable or worsening. No one can honestly tell another what path their ME/CFS will take.

Too many doctors try to play this illness down to their patients (as they dont want to cause anxiety, depression or whatever.. maybe they dont like to think about patients getting worst under their care? as that is like them failing), I think most at this site has experienced a doctor playing down the illness at some time or another. (In my own case it was the doctors who told me I was likely to be recovered in a couple of years. Its now 16 years later. I nowdays have a lot of damage in my body too with lots of abnormalities due to the ME).

Ya i have had doctors play down my illness but maybe they will end up being right. Besides, i have heard plenty of doctors in interviews (lapp, hyde, peterson, bell) say that recovery was tough but substantial improvement was common. Who knows, time will tell. As for studies, every ME study is wrought with holes and inconsistencies and poor overall data and findings.

I feel like men have better recovery statistics with this illness than women - that js not meant to be sexist - I think this is true with most chronic and autoimmune illnesses.

 

[taniaaust1]

I am still working in my job in sales...but just barely. I never really took a leave of absence in the beginning and just trecked along as best i could. Ya i probably over did it a bit but i've never really heard of anyone getting better from doing nothing.

Some of us at this forum have gotten weller some by aggressive rest therapy (ART). I actually had a full remission for 2-3 years due doing that. I recovered completely for a time from a bedbound state (it happened very slowly the recovery but it was all due to ART. I was recovered during that time, I even was able to run in one of the worlds longest marathons during it.

Diseases don't always conform to lifestyle. You don't hear people with MS or HIV or Parkinson's say that if they just stayed home more perhaps their illness wouldn't have progressed. But what do i know? Ive only been sick for 22 months.

Many of us can say we actually did get a lot worst from pushing ourselves re work or studies, my case has a clear correlation to that.