Do I have CFS? Or something else?

[Sherpa]

I'm a 37 year old guy with low energy issues. I'm not sure if I have mild CFS/ME or something else?

Short summary: I had chronic-stress-induced adrenal exhaustion, treated it, and recovered - but not fully. I have functional levels of energy but "run out of steam" in the evenings and weekends. I can hold down my office job, exercise, cook & clean and be a loner without much problem... adding friendships and romantic involvements to the mix can be somewhat draining & challenging. I respond great to vitamins... and to glutathione... but am overstimulated by L-carnitine, d-ribose, CoQ10, NADH.

Long Story:
For my whole life, I have been an anxious, overambitious, hard worker type personality. To relieve stress I did high adrenaline sports and partying (dancing to electronic music all night). I ran a stressful technology business : for 8 years I spent 12 - 15 hours a day online, stressing and trying to be "#1 in my field" at any cost. I used (not abused) a prescribed stimulant medication for "ADD".

In September 2011, my lifestyle caught up with me and I crashed down with severe, debilitating adrenal fatigue, .... and had to close my business.

For the past 2.5 years I have been recovering from a severe case of AFS (Adrenal Fatigue Syndrome). I followed Dr. Lam's protocol of C & B5 vitamins, glutathione, yoga, meditation, lower carb diet... and I have achieved huge improvements in energy, health and physical appearance.

I have cured most of my symptoms (collagen loss, salt craving, constant "fibromyalgia" pain & tension in back / neck, insomnia, thyroid imbalance, poor digestion, cortisol disregulation) with supplements, yoga and diet. My two remaining symptoms are: sunlight sensitivity & PEM.

15 - 20 minutes in the intense tropical sun can mildly crash me.

If I try to do too much yardwork or housework in a stretch then my muscles will ache... and I feel a general malaise. I don't even want to listen to music, watch TV or read... it all seems overstimulating, slightly painful... I prefer to just sit silently in a darkened room or stare at the wall.

If I really overdo things, sleep will become difficult to impossible.

I tend to wake up very early... 6 A.M. or earlier... and sleeping as late as 8 A.M. is almost impossible.


Now I work 35 hours a week at an office job and do hot power yoga. I look and feel good much of the time. But I apparently have some sort of ATP production or recycling issue.

I can nearly always make it through the workweek... but sometimes I need to "recover" on the weekends... sit at home and do very little or else I run up an energy debt. If I keep pushing for multiple weeks in a row, then I have a delayed fatigue that catches up with me and makes it difficult to get through the workday.

I can't "go out" for activities on multiple / consecutive evenings like I used to. I can't see live music anymore (dancing after 10pm in a bar is a recipe for a crash). I can't do many of the outdoor activities that people of my age (30s) are into. I can do yoga but I have to go home and rest, can't meet up with friends and socialize after. I can only got to the beach for 15 minutes or so because the sun is too intense.

My body seems to have low glutathione. The first time I drank liposomal GSH, it felt very refreshing and rejuvenating. I recently started taking NAC and it improved my energy, libido and OCD slightly... feels like "something that my body wants."

I respond well to most B vitamins (haven't tried B12 yet), C, D, E, magnesium, licorice, ashwaghanda.

When I was really dragging, I was prescribed OTC thyroid glandular by an Endocrinologist and it helped a lot. But not back to 100%

However, I am extremely oversensitive to mitochondrial supplements.

500mg Acetyl-L-carnitine makes me nervous and irritable.

12 - 30mg CoQ10 feels awesome first and then irritable later on.

2.5mg NADH seems awesome at first, but I feel "tingling" or strange if I take it on consecutive days.

SAM-e taken in the far past caused overstimulation, insomnia... but sometimes lifted spirits. Hit or miss.

750mg - 1500mg d-ribose works great, but the energy drops off fast. Too spikey. 5 grams is unbearably overstimulating.

600mg NAC is awesome, feels "good" - no unpleasant effects.. but it is not strong enough to fix my fatigue.

----

Yes, my body can get tension & possible inflamed with too much stress, eating gluten, etc. (But it's manageable with yoga).

I don't have no *obvious* infections or immune problems. I tested negative for giardia and h. prylori. I don't have any obvious exposure to toxic chemicals or metals - but it could be possible. Just nothing I am aware of.


So does this sound like CFS? Or something else? Any tips for treatment?

Thanks so much for reading and responding... I don't know who else to turn to (not local doctors!) etc.

 

[Cheesus]

Many will disagree with me, but given that ME/CFS happens in shades of grey rather than stark distinctions between 'healthy' populations and ill, I would say it is possible you have some underlying physical dysfunction that is also common to people with fully-fledged ME.

I remember saying years before I got really ill 'maybe I have that chronic fatigue syndrome thing'. No one would have diagnosed me then, but the groundwork was being laid and was probably recognisable to those in the know.

So, it is not out of the realm of possibility. At this stage, however, I don't know what advice I can offer other than to really get down to healthcare basics in terms of managing stress and really optimising your diet. Your sunlight sensitivity indicates possible overactivity of the sympathetic nervous system, so aiming to rebalance yourself through things like the Gupta Programme (unpopular suggestion number 2) might prove to be beneficial.

Anyway, I am certain others will have a different opinion... and what do I know, really?

 

[Seven7]

I would ask for a natural killer cell test (number and activity if possible), Vit D (all types), b12, CBC, a Citokine profile, a Lymphosyte subset (specially CD56, CD57 (in case is lyme), CD3,CD4,CD8.....). Thyroid (TSH,T3,T4) See inmunologist.

If something is not balanced about your inmune system this will at least show in one of these tests. I wish somebody told me about it in the firsts days would of have saved me a lot of fights with Drs.

I am no doctor this was the start for me based on my symptoms that was very similar to you. I didn't have clear CFS to myself until year 3 or so, Got diagnosed year 5, mine started very gradually and I could do all you discribe.

I am still very active (work 40h, and do a lot) but I have ME and it does get bad at times.

 

[SOC]

I would ask for a natural killer cell test (number and activity if possible), Vit D (all types), b12, CBC, a Citokine profile, a Lymphosyte subset (specially CD56, CD57 (in case is lyme), CD3,CD4,CD8.....). Thyroid (TSH,T3,T4) See inmunologist.

If something is not balanced about your inmune system this will at least show in one of these tests. I wish somebody told me about it in the firsts days would of have saved me a lot of fights with Drs.

I am no doctor this was the start for me based on my symptoms that was very similar to you. I didn't have clear CFS to myself until year 3 or so, Got diagnosed year 5, mine started very gradually and I could do all you discribe.

I am still very active (work 40h, and do a lot) but I have ME and it does get bad at times.

That's a good list. I'd also suggest seeing a cardiologist to be checked for cardiac issues including low blood volume/OI.

 

[Sherpa]

I would ask for a natural killer cell test (number and activity if possible), Vit D (all types), b12, CBC, a Citokine profile, a Lymphosyte subset (specially CD56, CD57 (in case is lyme), CD3,CD4,CD8.....). Thyroid (TSH,T3,T4) See inmunologist.

If something is not balanced about your inmune system this will at least show in one of these tests. I wish somebody told me about it in the firsts days would of have saved me a lot of fights with Drs.

Awesome info! Thanks.

While I do not suspect immune trouble or an infection, it would be really wise to rule this out.

 

[SOC]

Awesome info! Thanks.

While I do not suspect immune trouble or an infection, it would be really wise to rule this out.

If you have ME/CFS, you probably have immune trouble and infections, although you may not know it yet. Immune dysfunction is characteristic of ME/CFS.

 

[Allyson]

@Sherpa with anxiety you may want to look into POTS/OI and EDS - they are very similar to ME
OI causses the PEM ....IMO


o have you looked att ehrrelationship to being uright and your crashes/PEM

Adrenaline causes the photophobia - see link in my sig below for more on that

Lyme is another good one to rule out - many with ME now find they have Lyme

Castori 2012 - important EDS article - with pics! - note the 1 in 100 prevalence of EDS in the population!

http://downloads.hindawi.com/journals/isrn.dermatology/2012/751768.pdf

good luck

ALly

 

[amaru7]

If you have ME/CFS, you probably have immune trouble and infections, although you may not know it yet. Immune dysfunction is characteristic of ME/CFS.

Though not always necessary. It has to be some kind of stress plus the generic component that leads to mitochondrial dysfunction which imo is the basis of cfs.

I'd advice you to test ATP as you pointed out it might be low. In my opinion also you don't have cfs because you're still highly functioning, while seriously ill people can't even dream to do even half the things you do.
Read this
http://drmyhill.co.uk/wiki/CFS_-_The_Central_Cause:_Mitochondrial_Failure

If you invest in your health and avoid being that workaholic type then chances are good that you will recover because you're better off than most people that have cfs energy wise
As for your personal symptoms I'd suggest you do some testing to find out where the culprit is

 

[Sherpa]

@ally thanks for the link about EDS. Just glancing over it, I am not sure it's me... but I will read up on it more carefully before I rule it out.

Never taken B12 supplements before... and I learned about that on this forum.

I tried 250mcg cyancobalim (b12) orally this morning and it seems to have a VERY positive, energizing effect.

Too soon to declare victory or jump to conclusions but I am EXTREMELY hopeful that this forum and you folks have some answers I have overlooked!

 

[SOC]

OI causses the PEM ....IMO

I believe that OI causes exercise intolerance, which is not the same thing as PEM. A number of other illnesses have exercise intolerance, but PEM appears (so far) to be unique to ME/CFS. Many (possibly most) ME/CFS patients probably have both exercise intolerance and PEM.

Unfortunately, people often confuse PEM and exercise intolerance. This leads to a lot of misunderstanding about the nature of ME/CFS, implying that it is similar to what cardiac or POTS patients experience and that similar treatments should result in similar outcomes.

Exercise intolerance:

exercise intolerance limitation of ability to perform work or exercise at normally accepted levels, as measured in exercise testing.

PEM (called PENE in the ICC)

A. Postexertional neuroimmune exhaustion (PENE pen’-e): Compulsory
This cardinal feature is a pathological inability to produce sufficient energy on demand with prominent symptoms primarily in the neuroimmune regions. Characteristics are as follows:
1. Marked, rapid physical and/or cognitive fatigability in response to exertion, which may be minimal such as activities of daily living or simple mental tasks, can be debilitating and cause a relapse.
2. Postexertional symptom exacerbation:e.g.acute flu-like symptoms, pain and worsening of other symptoms.
3. Postexertional exhaustion may occur immediately after activity or be delayed by hours or days.
4. Recovery period is prolonged, usually taking 24 h or longer. A relapse can last days, weeks or longer.
5. Low threshold of physical and mental fatigability (lack of stamina) results in a substantial reduction in pre-illness activity level.
Operational notes:For a diagnosis of ME, symptom severity must result in a significant reduction of a patient’s premorbid activity level.Mild(an approximate 50% reduction in pre-illness activity level),moderate(mostly housebound),severe(mostly bedridden) orvery severe(totally bedridden and need help with basic functions). There may be marked fluctuation of symptom severity and hierarchy from day to day or hour to hour. Consider activity, context and interactive effects.Recovery time: e.g. Regardless of a patient’s recovery time from reading for ½ hour, it will take much longer to recover from grocery shopping for ½ hour and even longer if repeated the next day – if able. Those who rest before an activity or have adjusted their activity level to their limited energy may have shorter recovery periods than those who do not pace their activities adequately.Impact: e.g. An outstanding athlete could have a 50% reduction in his/her pre-illness activity level and is still more active than a sedentary person.

 

[taniaaust1]

Obviously you are affected by a build up of activity so with that being exhausted by the end of the day and often needing to rest on weekends and not having any energy left to have a social life, I'd say you have got mild CFS.

I do think you should be taking a lot of care to balance up your life better and cut back on some of your work (shorter work hours if possible, you may have to consider changing your job) or you may find yourself end up in a disasterous situation esp if you are so young with so many years still ahead of you (if that is your picture there).

I can only got to the beach for 15 minutes or so because the sun is too intense.

That's an important clue to something and I think needs to be sorted out the why's of you getting such an intense reaction to the sun.

It could be due to having low blood volume .. could indicate that you have dysautonomia as often seen in ME/CFS people. Mild dysautomonia or orthostatic intollerance can also make one feel wrecked by being upright all day. You may want to consider getting a tilt table test done to rule out dysautonomina (thou with your muscle pains, I think you have more then just that..so probably mild ME/CFS). The salt craving may also be caused by having low blood volume.

I can understand that it would be hard to slow down with having ADD but if you dont want to risk major problems.. I really advise you need to slow down or you could find yourself much worst and need to force yourself into doing even less.

Best luck

ps. B12 is the most helpful supplement generally for ME/CFS people, over 50-75% of ME/CFS people have found it to be helpful. (if you dont react good to one form of it, try another. You may also want to try active B12 forms). Getting activity levels right (so you arent doing too much) thou is probably more important then any supplementation as you risk going downhill no matter what you take, if you are doing too much if you have ME/CFS.

Dr Cheney has said that those with ME (thou he uses term CFS) are universally deficient in glutathione

 

[Allyson]

@ally thanks for the link about EDS. Just glancing over it, I am not sure it's me... but I will read up on it more carefully before I rule it out.

Never taken B12 supplements before... and I learned about that on this forum.

I tried 250mcg cyancobalim (b12) orally this morning and it seems to have a VERY positive, energizing effect.

Too soon to declare victory or jump to conclusions but I am EXTREMELY hopeful that this forum and you folks have some answers I have overlooked!

here is simpler link on EDS Sherpa



http://forum.notcrazy.net/index.php?topic=9571.0


and one on POTS
http://en.wikipedia.org/wiki/Postural_orthostatic_tachycardia_syndrome

for me the B12 had to be IM shots -sublingual did not help me at all


GL

Ally