Re: subgroups

[Guest guest]

I think that I am in the same subgroup that I started in, four years ago.

At the time I had what looked like sudden onset viral CFS with lowgrade

fever (37.5 to 37.8), photosensitivity, sinus infections, asthma, spastic

colon, sensitivity to noise, and quite soon a type of peripheral neuropathy

that presented like MS symptoms. Also dryness like sjogrens, particularly in

the eyes and later, the mouth. And let's not forget sleep disturbances. I

also had some joint pains but they pretty much went away.

Today, after four years, my energy level is higher but I still have lowgrade

fever (37 to 37.3 when my pre-CFS temperature was usually at least half a

degree less in Celcius), a certain amount of photosensitivity, sensitivity

to noise, spastic colon, peripheral neuropathy that comes and goes, dryness,

sleep disturbances, and of course, sinus infections and asthma.

What has changed? My level of energy. It is definitely higher except when I

have relapses which happen often. My diet has changed which no longer

includes gluten, sugar, dairy, fats, preservatives, food coloring, potatoes,

mushrooms, yeast, etc. and has only limited amounts of fruit. I have had two

operations: sinus (which helped open the passages but did nothing for

infections), and gall bladder removal afterI developed a big stone when

during the first year of CFS I tried all sorts of alternative treatments

including acupuncture, and without asking me the acupuncturist did a " liver

flush " and caused the stones to form because of the incredible amount of

bile he released from my liver. Like all the alternative treatments I tried

(chinese herbs, acupuncture, naturopathy, homeopathy, biofeedback, biocom,

neurofeedback, shiatzu, reflexology, tinctures, chiropracture, kineseology,

hypnosis,) none helped, almost all hurt. And the same goes for supplements

(vitamins, minerals, IP-6, NADH, lysene, Alpha lypoic acid, etc.). I

developed anemia, or at least low ferritin and take massive iron supplements

because of absorptions problems, and I take calcium because I don't eat

dairy and take corticosteroid inhalators for asthma and sinuses. Also B

complex and multi mineral and C because I have reflux and can't have citrus,

But otherwise I'm basically the same as I was 4 years ago, I have just

learned to cope, accepted the fact that I will never be healthy (I go from

illness to illness, usually overlapping) and am grateful that I already have

a family, that I have a job I can keep ( I teach at university right near my

home and it's only a few hours a week) and most of all, that I never got

brain fog except for a very short period, so that I can continue writing and

teaching. I also developed GERD and voice problems so I have trouble

lecturing for long times, which is a pain on my job, but so far I have

managed to cope.

It is depressing that I know that at 44 this is what my life will continue

to look like, sometimes a bit better, sometimes a bit worse, but as for

subsets, I am certainly the same as I was. Oh yes, one change, I lost about

40 lbs during the past years, the first 20 during the first weeks of CFS

when I was too sick to eat, the next 40 when I had sinus surgery and changed

my diet. That makes it easier to breathe now that I am thin. But as for a

change...I'm still waiting after 4 years, guess it won't happen any more. No

chance of waking up one morning and feeling like " wow, it's over " .

Judy

[Guest guest]

There is something here that puzzles me. I have the illness for at least 13

years. I have never had neurological symptoms at first years of the illness

like you describe.

I had in summary, immune problems,exhaustion coming and going,extreme

sweating,gut problems,some sleeping problems. Neurological symptoms like

photosensitivity, MS like symptoms,etc came all after 10-11 years.

I am thinking that illness starting directly with neurological symptoms has

an important difference than mine.I am not sure if we are in two different

sub groups or have different illnesses.

I would like to know what others think about this.Did many of you have

neurological symptoms right after the onset?

Thanks.

Nil

Re: subgroups

| I think that I am in the same subgroup that I started in, four years ago.

| At the time I had what looked like sudden onset viral CFS with lowgrade

| fever (37.5 to 37.8), photosensitivity, sinus infections, asthma, spastic

| colon, sensitivity to noise, and quite soon a type of peripheral

neuropathy

| that presented like MS symptoms. Also dryness like sjogrens, particularly

in

| the eyes and later, the mouth. And let's not forget sleep disturbances. I

| also had some joint pains but they pretty much went away.

|

| Today, after four years, my energy level is higher but I still have

lowgrade

| fever (37 to 37.3 when my pre-CFS temperature was usually at least half a

| degree less in Celcius), a certain amount of photosensitivity, sensitivity

| to noise, spastic colon, peripheral neuropathy that comes and goes,

dryness,

| sleep disturbances, and of course, sinus infections and asthma.

|

| What has changed? My level of energy. It is definitely higher except when

I

| have relapses which happen often. My diet has changed which no longer

| includes gluten, sugar, dairy, fats, preservatives, food coloring,

potatoes,

| mushrooms, yeast, etc. and has only limited amounts of fruit. I have had

two

| operations: sinus (which helped open the passages but did nothing for

| infections), and gall bladder removal afterI developed a big stone when

| during the first year of CFS I tried all sorts of alternative treatments

| including acupuncture, and without asking me the acupuncturist did a

" liver

| flush " and caused the stones to form because of the incredible amount of

| bile he released from my liver. Like all the alternative treatments I

tried

| (chinese herbs, acupuncture, naturopathy, homeopathy, biofeedback, biocom,

| neurofeedback, shiatzu, reflexology, tinctures, chiropracture,

kineseology,

| hypnosis,) none helped, almost all hurt. And the same goes for supplements

| (vitamins, minerals, IP-6, NADH, lysene, Alpha lypoic acid, etc.). I

| developed anemia, or at least low ferritin and take massive iron

supplements

| because of absorptions problems, and I take calcium because I don't eat

| dairy and take corticosteroid inhalators for asthma and sinuses. Also B

| complex and multi mineral and C because I have reflux and can't have

citrus,

| But otherwise I'm basically the same as I was 4 years ago, I have just

| learned to cope, accepted the fact that I will never be healthy (I go from

| illness to illness, usually overlapping) and am grateful that I already

have

| a family, that I have a job I can keep ( I teach at university right near

my

| home and it's only a few hours a week) and most of all, that I never got

| brain fog except for a very short period, so that I can continue writing

and

| teaching. I also developed GERD and voice problems so I have trouble

| lecturing for long times, which is a pain on my job, but so far I have

| managed to cope.

| It is depressing that I know that at 44 this is what my life will continue

| to look like, sometimes a bit better, sometimes a bit worse, but as for

| subsets, I am certainly the same as I was. Oh yes, one change, I lost

about

| 40 lbs during the past years, the first 20 during the first weeks of CFS

| when I was too sick to eat, the next 40 when I had sinus surgery and

changed

| my diet. That makes it easier to breathe now that I am thin. But as for a

| change...I'm still waiting after 4 years, guess it won't happen any more.

No

| chance of waking up one morning and feeling like " wow, it's over " .

|

| Judy

|

|

|

| This list is intended for patients to share personal experiences with each

other, not to give medical advice. If you are interested in any treatment

discussed here, please consult your doctor.

|

|

[Guest guest]

Nil,

I had neurological symptoms straight from day one of my sudden onset.

The CFS doc who diagnosed me 12 years ago thought I had MS and sent

me to see a neurologist.

My symptoms started with poor equilibrium, weakness and exhaustion

upon standing and walking, my blood pressure dropped when I stood up

and I had really bad gut problems. The immunological symptoms came

5 years later, aching and sorness in my muscles.

For the first 9 years of CFS I never had insomnia, yet 3 years ago I

completely lost the ability to fall asleep.

Nat

[Guest guest]

> .Did many of you have

> neurological symptoms right after the onset?

> Thanks.

> Nil

I did not have them till many years into illness. I was virus w/low grade fevers

and swollen glands first 7 yrs, then about 10 yrs got more neurological probs

too, brainfog much worse, in the

beginning, I could not wake up I slept so deep, slept long periods w/o waking,

then about the 10 yr mark began sleep disturbances, and can't stay asleep now.

At about 10 yrs I began pain in legs

after walking, sometimes they would kind of shake if I walked too much, then was

diag FM as well. My symptoms were fairly steady the first 7 yrs then changed a

lot over the years since then.

Marcia

[Guest guest]

What neurological symptoms specifically are you refering to?

----- Original Message -----

From: " Nil " <ng2113@...>

> I would like to know what others think about this.Did many of you have

> neurological symptoms right after the onset?

[Guest guest]

hi,

i had multiple flu/viral episodes in the early years but i also realize

looking back on it that i had cognitve promblems from onset but didnt realize

that

it was happening as i always thought of illness as being a phsyical thing...

then the daily flu/viral temperature stuff starting to lessen but i

begain getting more neurological symtoms : balance, ear promblems,difficulty

standing and walking into walls, more memory deficiets : short temr , inablity

to

read or remember what i read from one second to the next , difficulty writing a

one page letter without missing letters, malformed letters, missing adverbs

etc.... the neurological became worse the more years into the illness.

the scary part is i cannot always tell when my brain and butt have switched

places....

somish.

[Guest guest]

I am talking about symptoms like photo and sound sensitivity,tingling and/or

numbness at various body parts of body,MS like symptoms Judy mentiones.

I also did not have any brain fog until 11 the year.My cognitive problems

also were not so significant for the first 11 years. I had a productive

working life.I always had some forgetfulness problems during the course of

the illness but I had those all my life so I did not think that was much

important.

I am not considering problems due to low blood pressure as neurological

either. I also had these always. Feeling like fainting,Not being able to

stand up for long periods,etc.

Thanks.

Nil

Re: Re: subgroups

| What neurological symptoms specifically are you refering to?

|

| ----- Original Message -----

| From: " Nil " <ng2113@...>

| > I would like to know what others think about this.Did many of you have

| > neurological symptoms right after the onset?

|

|

|

|

|

| This list is intended for patients to share personal experiences with each

other, not to give medical advice. If you are interested in any treatment

discussed here, please consult your doctor.

|

|

[Guest guest]

I was bed bound after about 12 years. So,I also have difficulty to

understand the difference between some of us who get bed bound within the

first two-four years of the illness and myself. During those 12 years I

was working very hard,had great stress,many responsibilities and I did not

take care of myself much. No treatment,no resting..So,we can not say that it

took me 12 years to be bed bound because I did take good care of myself.

So,what makes the difference?I wonder if those friends had another bacterial

or viral infection on top of CFS or if their illness was something else

presenting symptoms like CFS.Lyme or another one?

Thanks.

Nil

Re: Re: subgroups

|

|

| | What neurological symptoms specifically are you refering to?

| |

| | ----- Original Message -----

| | From: " Nil " <ng2113@...>

| | > I would like to know what others think about this.Did many of you have

| | > neurological symptoms right after the onset?

| |

| |

| |

| |

| |

| | This list is intended for patients to share personal experiences with

each

| other, not to give medical advice. If you are interested in any treatment

| discussed here, please consult your doctor.

| |

| |

[Guest guest]

Yip, I had all those symptons. The sound of a phone ringing still

sends me cringing. I get slight ringing of the ears still, all

started at onset. As I've gotten better the symptons are wearing off

and I'm normalizing. I had brain fog and all the other mentioned

neuro problems from the start though.

Best

Caryn

> I am talking about symptoms like photo and sound

sensitivity,tingling and/or

> numbness at various body parts of body,MS like symptoms Judy

mentiones.

>

> I also did not have any brain fog until 11 the year.My cognitive

problems

> also were not so significant for the first 11 years. I had a

productive

> working life.I always had some forgetfulness problems during the

course of

> the illness but I had those all my life so I did not think that was

much

> important.

> I am not considering problems due to low blood pressure as

neurological

> either. I also had these always. Feeling like fainting,Not being

able to

> stand up for long periods,etc.

>

> Thanks.

> Nil

> Re: Re: subgroups

>

>

> | What neurological symptoms specifically are you refering to?

> |

> | ----- Original Message -----

> | From: " Nil " <ng2113@s...>

> | > I would like to know what others think about this.Did many of

you have

> | > neurological symptoms right after the onset?

> |

> |

> |

> |

> |

> | This list is intended for patients to share personal experiences

with each

> other, not to give medical advice. If you are interested in any

treatment

> discussed here, please consult your doctor.

> |

> |

[Guest guest]

Nil asked if others had neurological symptoms early on.

I developed neuropathies in both legs two years before the onset of CFS,

and very painful IBS symptoms one year before.

LaRue

[Guest guest]

I personally think it is impossible to make generalizations. For example,

you say you do not include neurological problems due to low blood pressure.

But at times in the past my cognitive problems (inability to concentrate,

forgetfulness) was associated with low blood pressure. Also the blood

pressure is controlled by the brain so it is a neurological problem in a

sense. And how do you really separate one kind of cognitive impairment from

another? In some ways the cognitive impairment I had this time around

(after getting my fillings out) was the same as before, in some ways it was

different. But since we can't experience each other's realities I don't

think there are even words to describe it so that we can talk to each other

and tell if we are feeling the same way. Other neurological problems like

numbness and tingling, sound sensitivity, these come and go for me and have

from the beginning.

I believe that when the system is screwed up, as it is in us (for example

the HPA axis, the immune system, the brain), that even if we have the same

illness we will have different manifestations of it. Maybe whatever aspect

of us is weakest will show it first. Or maybe all areas are hit in all of

us, but some harder than others. When the whole system of hormones and

messengers, that which controls the brain and all functions is not working

properly, there are all kinds of things that can go wrong. But I don't have

faith that those symptoms correlate to subgroups which are different

illnesses. My belief is that either most of us have the same thing but it

manifests itself differently, OR many of the symptoms are caused by

secondary infections and those change throughout time (different viruses and

bacteria and funguses take hold because of the basic impairment of the

immune system.)

Thanks,

Doris

----- Original Message -----

From: " Nil " <ng2113@...>

> I am talking about symptoms like photo and sound sensitivity,tingling

and/or

> numbness at various body parts of body,MS like symptoms Judy mentiones.

> I also did not have any brain fog until 11 the year.My cognitive problems

> also were not so significant for the first 11 years. I had a productive

> working life.I always had some forgetfulness problems during the course of

> the illness but I had those all my life so I did not think that was much

> important.

> I am not considering problems due to low blood pressure as neurological

> either. I also had these always. Feeling like fainting,Not being able to

> stand up for long periods,etc.