CFS without debilitating fatigue?

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I'm new here but have been following these forums for a few months. My main question is whether one can have CFS without the debilitating fatigue? That is, I have a large amount of the other symptoms, and I do feel lethargic throughout the day and not rested in the morning but I am still able to function, for the most part...

It's suspected I have a mast cell disorder but my symptoms have changed over the past few months that I feel I fall under the scope of CFS symptoms more than MCAS symptoms, though I still have a few. I realize there is a school of thought that CFS and MCAS might be linked somehow which is how I stumbled on the CFS forums. This all started after I got sick in Nicaragua in 2010 and it slowly slipped down hill from Post Infectious IBS to now this, what ever it is. The other reason I ask is my B12 is quite elevated and I have been reading the B12 treatment protocol and find it very intriguing.

Any thoughts? I could list my symptoms but I'm getting ready for bed and the list is LONG and has changed over time. But if that might help people let me know.

At the end of the day it doesn't really matter WHAT I have, but more what will help. I'm just curious.
 

Kati

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Hi @wootah88,

First welcome to the forums.

i want to comment about the fatigue part since i know nothing about Mast Cell disorder.

i have been sick for 6years now, following an EBV infection. Curiously about 9 months prior to that I was travelling in central mexico and also got sick with gastro viral illness.

Fatigue is not my main symptom. I feel sick. i feel like I carry a ton. I feel like you, lethargic. I get tired quickly if I over-exert and if I disregard these signals, i will get swollen lymph nodes, pain and sore throat and. Will have trouble finding my words, and my brain will scream at me for retreating in a noise free, dim and horizontal environment. It is not fatigue where I need to sleep. In fact, while I am in bed a good part of the day, I very seldom sleep during the daytime, other than having a sleep schedule that often stretch till noon.

The problem with this disease is there are no words to describe how we feel and the best they could do was to call it chronic fatigue syndrome, which was of great disservice.

In regards to severity, some of us will have milder disease than others. It is quite important though to listen to your body and to remain within your energy envelope. It may be usefull to journal or Excel your symptom on a day to day basis as it compare to your level of activity.

And I agree, at the end of the day, it doesn't matter what it is. I just wish we could belong in a well defined box and cared for like any other disease.
 

justy

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Hi and welcome. If my Dr were considering a diagnosis other than M.E/CFS then I would be happy to stay with that. A diagnosis of CFS is not something to search out - there is no treatment in general and no cure, once it's on your medical records it is hard to be taken seriously.

Have you tried any treatments for the MCAS? How did that go? Do you have a good Dr? What are they saying? Have you seen an MCAS specialist?
If I were you I would also be very concerned to see someone who would look thoroughly at the immune system or gut after your illness started in Nicaragua - we hear of so many people here who got sick after this kind of travelling - have you seen an infectious disease specialist or immunologist.

If you are wondering if you might have M.E/CFS then you can see the two latest criteria here
http://phoenixrising.me/research-2/...e-mecfs/international-consensus-criteria-2011

Which may give you a better idea of what M.E/CFS entails by way of symptoms required for a diagnosis
 

xchocoholic

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Did you restore your healthy gut bacteria after getting sick in Nicaragua ? Was it a parasite ? Getting a cdsa might help.

Also, I didn't see you mention orthostatic intolerance and that can be confused with fatigue.

Welcome. Tc . X
 

taniaaust1

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but my symptoms have changed over the past few months that I feel I fall under the scope of CFS symptoms more than MCAS symptoms, though I still have a few
Im curious about what symptoms you have in which you do not think can be related to a mast cell disorder?

My uncle has severe mastocytosis and he gets the symptoms I do (except he gets more eg anaphalatic shock).
.....

ME can present with many other symptoms which can be worst then the fatigue. I have quite a few symptoms which I rate far worst which actually prevent me from doing things much more then fatigue does.

To help me distinguish I had ME causign my MANY symptoms (over 90) rather then what my uncle has which can be extremely hard to diagnose in many, I went throu all the tests Ive had done looking for the known ME/CFS abnormalites, which are mentioned in the canadian consensus document. I wanted to see if I could confirm ME to myself throu that. After finding I do have many of those, it convinviced me I have ME (thou its quite likely I have a mast cell disorder too going on).

eg I have postive Rombergs, I have the non specific EEG finding that is found in ME (in 2 out of 3 of my EEGs over the years, I have no moons on my fingers (but then that is found in many chronic illnesses), low D3 (thou my D2 is fine, my D is being used by my body faster then it converts), low testosterone (common in ME), low feratin? thou I was eatting heaps of meat (my CFS specialist says he commonly sees that in us) etc

Ive no idea how many of those known ME abnormalities have links to Masto but seeing I had so many of the ME ones, that was enough to convince me that I have ME (I also had the flu like onset). Thou I could have coexisting mast cell issue too which I do think is highly likely as I do have some more uncommon ME symptoms too eg I have had that skin writing thing, welting to touch and also had what I think was a darier sign and other things which scream out "mast cell disorder" (I personally think there may be a subgroup of us which also gets mast cell issues).
 

cman89

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I'm new here but have been following these forums for a few months. My main question is whether one can have CFS without the debilitating fatigue? That is, I have a large amount of the other symptoms, and I do feel lethargic throughout the day and not rested in the morning but I am still able to function, for the most part...

It's suspected I have a mast cell disorder but my symptoms have changed over the past few months that I feel I fall under the scope of CFS symptoms more than MCAS symptoms, though I still have a few. I realize there is a school of thought that CFS and MCAS might be linked somehow which is how I stumbled on the CFS forums. This all started after I got sick in Nicaragua in 2010 and it slowly slipped down hill from Post Infectious IBS to now this, what ever it is. The other reason I ask is my B12 is quite elevated and I have been reading the B12 treatment protocol and find it very intriguing.

Any thoughts? I could list my symptoms but I'm getting ready for bed and the list is LONG and has changed over time. But if that might help people let me know.

At the end of the day it doesn't really matter WHAT I have, but more what will help. I'm just curious.
I am in the same boat. No cognitive issues, unless I am tired, no pain, no PEM, just fatigue, blood pressure/cardiac stuff, and lack of strength. If you dont mind me asking what symptoms fit the mast cell criteria?
 
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Hi all, thanks for your responses. I have explored all the symptoms of MCAS and I once had a TON of them but about three months ago they changed. The only thing I can link it to is me trying Quercetin and I already had a HUGE list of supplements because my stool tested positive for Candida. The Quercetin may or may not have thrown my system over, who knows.

Suddenly my main symptoms of flushing, itching, and irritability that were only triggered by food turned more to a constant feeling of anxiety/panic, like there's adrenaline running through me but my heart isn't beating any faster than normal. I'll wake up exhausted but this feeling of intense panic/fight or flight floods over me and I can get back to sleep. I still react to food, in fact I can only eat about 15 things without much of a reaction, but my reactions are more severe anxiety, brain fog like my mind just hits a wall and can't process anything, concentration and focus are gone and so is my memory. I also get terrible pains in my abdomen, mostly in the upper right but upper left as well. I react to some clothes now, can't use lotions or chapsticks. But even if I don't have reactions I feel like I'm dragging myself through the day and can't process or retain information. I don't want to nap because I have terrible dreams and this constant "on alert" feeling.

Most of my physical reactions are gone, though my face is kind of constantly flushed. I've checked with MCAS forums and there are a few people with similar symptoms but most people seem to have the physical.

I'm scheduled to see a doctor knowledgable on MCAS on Tuesday so we'll see what he says. I also have an appointment in January with a doctor in Minnesota who is a specialist.

For those who responded unfamiliar with MCAS, some research is linking MCAS with CFS and MCS, as some doctors tested their CFS and MCS patients to find they had high amounts of mast cell mediators (the biochemicals that cause allergic reactions like histamine). There definitely is an overlap for some patients. I wonder how much the two play into each other. I guess I was also curious about my high B12 level with the thought that my body is lacking enough glutathione to break it down.

I didn't try getting my gut microbiome back in balance, I think, until it was too late...
 

cman89

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I see. Well certainly keep the reactions low. I have never done it, but many people find that if they clean out the diet, keep it bland and low inflammatory for a while, they can reintroduce foods with success that caused problems before. Its like how a fire burning hot will ignite items that usually are impossible to ignite alone. The inflammation can act that that in a way.
 
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Definitely trying to keep the reactions low. I mean when I have a good day these days it's FUCKING GOOD. I enjoy every little thing one possibly can! But those days are quite rare unfortunately.

@justy I have tried some treatments for MCAS. For one the antihistamines don't do anything for me anymore. My symptoms changed a few months ago, whereas before my symptoms were due mainly to histamine, now I have no clue! They seem to kind of loom around the day with me and then get worse when I eat something I shouldn't, or put something on my skin I shouldn't. My only abnormal tests were Histamine at 26 H (not sure the units but the normal range was 5-8) and my B12 which was 1200 (normal range topped out at 900). The histamine was tested before my symptoms suddenly changed though so I don't know what it is currently.

I'm going to see an MCAS specialist tomorrow to determine if that is my problem, I just have this feeling in my gut that there is more to this now than just MCAS, if that is what is going on here.

I have to admit I bought the Gupta Program, but mostly because I also have PTSD from a childhood trauma so I'm seeing how it might help with me there as well. I see a therapist twice a week also and that has helped me stay contained for the most part.

I might talk to my doctor about testing to see if I have a functional B12 deficiency because thyroid and everything were considered fine by two doctors. I also saw my psychiatrist today and he recommended Deplin but told me it is designed to be used WITH an antidepressant which I am no longer on because they all seem to make things worse for me in some way.

I really appreciate everyone's input! It means a lot that total strangers are willing to chime in about what's going on with my life...
 

Hip

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ME/CFS can vary greatly in its severity: mild is the starting point, next comes moderate, then severe. And for extreme cases, there is the very severe category.

These levels of severity are most easily understood in terms of what activities you are able to perform:
● Those with mild ME/CFS may be working full or part time, but struggle to do so. Of necessity they may have stopped or curtailed all leisure and social pursuits.

● Those with moderate ME/CFS are generally not able to work, probably don't leave the house much, have to perform domestic chores slowly with breaks and rests, and may need 1 or 2 hour's naps in the middle of day.

● Those with severe ME/CFS are more-or-less fully housebound, and likely bedbound (or lying horizontal on a sofa) for much of the day. They are unable to leave the house except on rare occasions, and dependent on a wheelchair for mobility. They find domestic chores like cooking or any form of housework very difficult or impossible.

● Those with very severe ME/CFS will bedbound nearly 24 hours day, except for a few minutes each day to go to the bathroom. Dependent on help for all daily care. Often unable to tolerate any noise, and are generally extremely sensitive to light.


Here are some descriptions from various sources of the mild, moderate, severe, and very severe levels of ME/CFS:
International Consensus Criteria

Mild — an approximate 50% reduction in pre-illness activity level
Moderate — mostly housebound
Severe — mostly bedridden
Very severe — totally bedridden and need help with basic functions
NICE guidelines (similar to the CFS/ME Working Group's 2002 Report, page 27)

People with mild ME/CFS are mobile, can care for themselves and can do light domestic tasks with difficulty. Most are still working or in education, but to do this they have probably stopped all leisure and social pursuits. They often take days off, or use the weekend to cope with the rest of the week

People with moderate ME/CFS have reduced mobility and are restricted in all activities of daily living, although they may have peaks and troughs in their level of symptoms and ability to do activities. They have usually stopped work, school or college and need rest periods, often sleeping in the afternoon for 1 or 2 hours. Their sleep at night is generally poor quality and disturbed.

People with severe ME/CFS are unable to do any activity for themselves, or can carry out minimal daily tasks only (such as face washing, cleaning teeth). They have severe cognitive difficulties and depend on a wheelchair for mobility. They are often unable to leave the house, or have a severe and prolonged after-effect if they do so. They may also spend most of their time in bed, and are often extremely sensitive to light and noise.
NHS Encyclopaedia: Chronic fatigue syndrome

Most cases of CFS are mild or moderate, but up to one in four people with CFS have severe or very severe symptoms. These are defined as follows:

Mild: you are able to care for yourself, but may need days off work to rest.

Moderate: you may have reduced mobility, and your symptoms can vary. You may also have disturbed sleep patterns, and sleep in the afternoon.

Severe: you are able to carry out minimal daily tasks, such as brushing your teeth, but occasionally you may need to use a wheelchair. You may also have difficulty concentrating.
patient.info

Mild: the patient is mobile, can care for themself and do light housework with difficulty.

Moderate: the patient has reduced mobility and is restricted in all activities of daily living. They have usually stopped work or education. There is poor sleep quality and duration.

Severe: the patient is unable to do anything for themself. They suffer severe cognitive difficulties and depend on a wheelchair. They spend most of their time in bed and are sensitive to light and noise.
www.betterhealth.vic.gov.au

Mild – the person’s activity is reduced by at least 50 per cent.
Moderate – the person is mostly housebound.
Very severe – the person is bed-bound and dependent on help for all daily care.

Around 25 per cent of people with ME/CFS will have a mild form and be able to get to school or work either part-time or full-time, while reducing other activities. About 50 per cent will have a moderate to severe form and not be able to get to school or work. Another 25 per cent will experience severe ME and be housebound or bedbound.


If we take the full ME/CFS scale:

Very SevereSevereModerateMildRemission

then any time an ME/CFS patient is able, as a result of treatment, to move up 1 step on this scale (eg, move from severe to moderate, or move from mild to remission), that can be classed a major improvement.



It is interesting to try to map these mild, moderate and severe levels of ME/CFS onto the Karnofsky Scale, which is a general scale used to measure the severity of illness.

In my own interpretation, on the Karnofsky Scale from 0 to 100, I would say that:
Perfect health = 100
Mild ME/CFS = 80 to 90
Moderate ME/CFS = 60 to 70
Severe ME/CFS = 40 to 50
Very severe ME/CFS = 20 to 30
Here is the Karnofsky Scale for ease of reference:
The Karnofsky Scale

100— Able to work. Normal; No complaints; No evidence of disease.

90 — Able to work. Able to carry on normal activity; Minor symptoms.
80 — Able to work. Normal activity with effort; Some symptoms.


70 — Independent; not able to work. Cares for self; Unable to carry on normal activity.
60 — Disabled; dependent. Requires occasional assistance; cares for most needs.


50 — Moderately disabled; dependent. Requires considerable assistance and frequent care.
40 — Severely disabled; dependent. Requires special care and assistance.


30 — Severely disabled. Hospitalized, death not imminent.
20 — Very sick. Active supportive treatment needed.


10 — Moribund. Fatal processes are rapidly progressing.
Thus with the above interpretation, a 20 point increase and improvement on the Karnofsky Scale corresponds to moving up one level, eg, from severe to moderate ME/CFS, or from moderate to mild ME/CFS.



Further reading:
Mild, Moderate, Severe and Very Severe PVFS / CFS / ME in Patients’ Own Words
 
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