Doc says I have CFS

...so now what. Anyone else get a similar diagnosis?

Lyme’s, fibromyalgia, GAD, MS, brain tumor, chronic fatigue, depression...those are but a few common diagnoses that arise from complaints about benzodiazepine damage. 

 

I’d want actual concrete tests, not a diagnosis based on symptoms.  Maybe CFS now has such a test, it didn’t have one for a long time but was based on symptoms and lack of other diagnoses.

 

I’m not saying it’s not CFS...just that I’d question it.

Thanks Challis. To your point, yes there is no "test" apparently. But I have some markers pointing to this in my blood work:

- EBV positive (which means I have or had the Epstein Barr virus at some point)

- White blood cell count is low

- Liver Bilirubin is high (doing a follow up CT scan)

- and I'm just tired all of the time no matter what (staying healthy with food, exercise a few times a week, walking every day) even getting 6hrs of sleep per night.

 

...anyway, never sure what to believe these days.

I don't know what to believe either but I can tell you that I stopped believing my "CFS" would ever get better. I couldn't envisage my life not sleeping 3 hours every afternoon (on top of 7 hours at night), that was my life on drugs and during my taper. I would have had a hard time to believe that I would no longer feel like wreck half-way through the day, that I'd become "normal" with regards to stamina... I truly couldn't imagine becoming as active and able to sustain such a rhythm!

 

I know it's been a long road already, at 17 months you can't be that far from beginning to feel better, Colley. My bet is that you will get energy back, even if things aren't "perfect" at first... your body and brain have been working hard to restore homeostasis!

 

Keep taking good care of yourself 

Julz xx

I have been reading a lot about Low Dose Naltrexone as I have actively replicating EBV.  Some people get decent results from it.  You might want t look into it.

 

This is also a fascinating interview

 

I don't know what to believe either but I can tell you that I stopped believing my "CFS" would ever get better. I couldn't envisage my life not sleeping 3 hours every afternoon (on top of 7 hours at night), that was my life on drugs and during my taper. I would have had a hard time to believe that I would no longer feel like wreck half-way through the day, that I'd become "normal" with regards to stamina... I truly couldn't imagine becoming as active and able to sustain such a rhythm!

 

I know it's been a long road already, at 17 months you can't be that far from beginning to feel better, Colley. My bet is that you will get energy back, even if things aren't "perfect" at first... your body and brain have been working hard to restore homeostasis!

 

Keep taking good care of yourself 

Julz xx

 

But your CFS symptoms did get better and you're only 10 months out.... I'm almost double that. I appreciate the positive message though. I'm finding it hard to be positive about much these days (

 

 

Typically some kind of permanent fever belongs to CSF. In case you do not have it, it is questinable if you have CFS. Well, this is what I have read.

I don't believe the diagnosis. Reading your signature, I feel that you've gone through a LOT with benzos. You were put on Ativan and Klonopin, a very potent combination even if not taken at the same time. You also say that you kindled. No, I think you're just suffering through benzo recovery. I also went through a long period of sleeping. I HAD to take naps on top of sleeping at night, and I was always tired. Doctors are geared to making a diagnosis with each patient. Without other tests, however, it's all just conjecture.

I don't know what to believe either but I can tell you that I stopped believing my "CFS" would ever get better. I couldn't envisage my life not sleeping 3 hours every afternoon (on top of 7 hours at night), that was my life on drugs and during my taper. I would have had a hard time to believe that I would no longer feel like wreck half-way through the day, that I'd become "normal" with regards to stamina... I truly couldn't imagine becoming as active and able to sustain such a rhythm!

 

I know it's been a long road already, at 17 months you can't be that far from beginning to feel better, Colley. My bet is that you will get energy back, even if things aren't "perfect" at first... your body and brain have been working hard to restore homeostasis!

 

Keep taking good care of yourself 

Julz xx

 

But your CFS symptoms did get better and you're only 10 months out.... I'm almost double that. I appreciate the positive message though. I'm finding it hard to be positive about much these days (

 

Yes, my CFS symptoms have very much improved - as that is what they were: symptoms. I now have completely different symptoms, but that seems to be the nature of withdrawal, no rhyme or reason. I could have suffered different symptoms during my taper and utter exhaustion in post-withdrawal... at 10 months off, those other symptoms are pretty bad and still not yet much improved, if at all.

I can imagine that 17 months seems like a very long time, especially when feeling so unwell, but you are most definitely certainly healing no matter how this feels. BBs is full of stories of recovery after the 18-month mark, and often before 24-month off. Your turn will come! 

I don't believe the diagnosis. Reading your signature, I feel that you've gone through a LOT with benzos. You were put on Ativan and Klonopin, a very potent combination even if not taken at the same time. You also say that you kindled. No, I think you're just suffering through benzo recovery. I also went through a long period of sleeping. I HAD to take naps on top of sleeping at night, and I was always tired. Doctors are geared to making a diagnosis with each patient. Without other tests, however, it's all just conjecture.

 

Thanks Terry... I'm unable to take naps but feel tired / lethargic most of the time. Waking up is dreadful. I always think I'm going to feel better one morning and I never do.

I had CFS diagnosis prior to taking benzos.

 

There are similarities in symptoms.

 

I note that someone involved with Benzi Informstation Coalition is interested in ME/CFS research.

 

 

Colley, the Epstein Barr virus lies dormant in most of the world's population. It usually only gets activated when the body is under stress and the immune system compromised (hence the low white-blood-cell count) - for example during the intake and/or withdrawal of psych drugs. Similarly, it's normal for bilirubin to rise when the liver is under pressure, as it would be after a period of psych-med use. (As you state that you eat a healthy diet, it's possible that your body is now detoxing thanks to good nutrition - which would cause a normal, temporary elevation in liver enzymes as the toxins leave your system.)

 

Julz and Terry are correct. Your body is trying to heal from psych-med use. You're really not that far out yet. If you keep supporting the process in healthy ways, it will most likely correct itself. If it keeps struggling (or you want to be more proactive), there are many gentle natural therapies that can strengthen the immune system, support the liver, and overcome infection (including CFS). I did so with an M.E. diagnosis (EBV positive).

Thanks Ruby. I will have to look up those natural therapies... right now I'm just tired of trying everything under the sun to get better. I feel pretty hopeless after spending so much money and time trying to get better. Head pain and fatigue causing a lot of very severe depression and a thinking process that is not in line with moving forward.

Most M.E is not Epstein Barr related.

Colley: You're welcome. I totally get where you're coming from with being tired of trying more stuff. It wears you down, for sure. I'm sorry you're suffering so badly. I do believe you're healing - rooting for you all the way. Take care, Colley.

 

Ajusta: You're right. I also tested positive for coxsackie virus, and quite a few others, plus fungal infections. Really, a weakened immune system (a toxic 'terrain', i.e. gut dysbiosis) seems the most likely explanation...whether weakened by medical drugs, candida endotoxins, stress/trauma, heavy-metal toxicity - or a combination of these. That is how I approached it, and why I believe I beat it.

Mine started with bouts of Viral Labyrinthitis and then a chest infection.

I'm sorry, Ajusta. I know you've had a really hard time.

Your life has not exactly been a walk in the park....

Yah. But I don't want to see it that way. It's hard to explain, because I don't want to come across as pollyanna-ish, and I definitely don't want to minimize the horrible suffering of us on here...

 

It's given me much that will serve me well. I've learnt so much, I see so much beauty and meaning now, on the 'better' days... And I have gained the skills to heal myself and those I love.

 

I believe in the end it will have been more than worth it.

 

M.E. can be overcome, Ajusta. And all the other stuff. It's just a bunch of labels. The body knows how to heal itself...we just need to wade through the bullshit we've been taught, and support the process.

I’m not sure it is the correct diagnosis for me anyway.

 

All I know is that I have got up everyday and worked to get well and now I am more unwell than ever.

 

I don’t know how you deal with all the loss.

I don't believe diagnoses are that important. You strengthen the body, support the immune system - and it will take care of the rest. (Much diagnostics these days is guesswork. It's supposed to be an art - which most Western docs suck at, truth be told.) Deep healing works in layers (it's kind of like peeling an onion) and it takes time. Sometimes a lot of time. And things can seem to get worse before they get better. It's part of true healing (as opposed to just throwing meds at symptoms). We're not taught that in the West.

 

I know the despair you describe. You're justified in feeling it. But it's not where your story ends.

 

The loss... You deal with it by learning to grieve it. You allow it. You feel it. And you learn it won't kill you, although it sure as hell feels like it will. It will pass through you, over and over, and then one day it goes away permanently. I know these are just words to you now. But there's peace on the other side of it, I promise you. You have a lot of life ahead of you.

I think my problems all stem from a problem at the top of my neck under my skull.

 

There is nothing anyone is willing to do about it and I have literally spent decades trying to sort it.

 

I do grieve. I am sick of grieving.

 

I am sick of the constant fear that comes from having no secure housing and being stuck on benefits in an environment that is hostile and hateful to sick people.

 

And now even the things I did have like enjoying food or pottering in the garden now and again or reading are unbearable because I am phobic of them.

 

Don’t get me wrong I am doing my best to hang on but it is very hard indeed.

I hear you, Ajusta. I know you're fighting, and I don't want to minimize where you're at or the difficulty of it. Your feelings are justified.

 

We lost our home. And in my country, there are no benefits.

 

Those phobias (except for the food, but I have others) - I have them, too. I get it. It makes me scream and rage - sometimes it makes me violent. The suffering can be unspeakable. These symptoms are effects of the drugs. It will go. It will.