Age Of First Symptoms?

shelley

shelley

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7
Location
UK. London
Hello, I've been learning so much from reading about all your experiences and been picking up some much needed advice, I can't tell you what a revelation I've had today as before I've been pretty much in the dark.
I think I might be a bit different as I'm posting on behalf of my daughter, who has been diagnosed at the age of 8 from Aspergers Syndrome and POTS just last year. I hope I'm posting in the right section, excuse me if I'm not :ashamed:
I wanted to ask all of you, at what age did you have your earliest symptoms? My daughter has a problem with chronic vomiting and exercise intollerance way back when she was age 6. As Pots is meant to be something that manifests in teenage years, I wondered how relevant age was.
Also whether anybody's been diagnosed with a Autism Spectrum Disorder and if they now wonder if it was actually their CFS that was masquerading as this?
thanks very much.....
 
L

lancelot

Senior Member
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324
Location
southern california
Because of the insidious nature of CFS, the first symptoms for most adults disables them within days, weeks or months. I was 37 when the first symptoms appeared and was disabled by the 3rd month(gradual non flu onset). i didn't have any other medical problems.
 
leaves

leaves

Senior Member
Messages
1,193
Hi there and welcome :)
I have had symptoms since birth, slowly progressing over time.
Hope you find some answers here.
 
C

Crus

Messages
12
Location
Madrid, Spain
leaves said:
Hi there and welcome :)
I have had symptoms since birth, slowly progressing over time.
Hope you find some answers here.
Click to expand...

Same here, since i remember i was sick, but living a normal life so i was not able to see that i was really sick, being tired was a normal thing for me.

But when was 17-18 years old everything changed and i got "the flu" until today that i am 31.
 
shelley

shelley

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7
Location
UK. London
QUOTE=Crus;148229]Same here, since i remember i was sick, but living a normal life so i was not able to see that i was really sick, being tired was a normal thing for me.

But when was 17-18 years old everything changed and i got "the flu" until today that i am 31.[/QUOTE]
Thanks for your replies :)
my daughter (now 16) has always displayed many vague symptoms. She'd been fainting regularly for these past 3 years, the hospital results were migraine and vasal vago synchope . Then for the past two years the nausea and vomiting became an issue again (it had gone for about 5 years) so more doctor visits, and specialist referral. In the meantime the continuous flu like symptoms, high temperature and aching limbs and backache cropped up and didn't go away. She was so hungry but had no appetite, so she was losing weight...the doctor didn't seem concerned, which sums up his whole attitude really.
I said to the GP that I thought it was POTS and she would need a tilt table test, but his reply was it was only given to the elderly and I would have to charm a specialist big time! I was pretty miffed at that:Retro mad: I changed my GP shortly after.
Anyway, she had her tilt table test and fell into the criteria for pots (her heart rate stuck at 130 bpm for 20 minutes).
He has really only offered steroid and salt tablet combined, which she took for a couple of months...but I'm concerned about the steroids and am interested researching the natural alternaties, which I'm picking up tips for right here :thumbsup:

Does anyone have problems with skin rashes on lower legs and arms, really itchy.....and skin blisters and peeling on hands and feet?
 
*GG*

*GG*

senior member
Messages
6,397
Location
Concord, NH
shelley said:
QUOTE=Crus;148229]
Does anyone have problems with skin rashes on lower legs and arms, really itchy.....and skin blisters and peeling on hands and feet?
Click to expand...

I do have what appeared to me to be a rash, but it is Edema!

GG

PS Dr Appt in a week, not sure what to do about edema?
 
rwinsmom528

rwinsmom528

Messages
34
shelley said:
...I'm posting on behalf of my daughter, who has been diagnosed at the age of 8 from Aspergers Syndrome and POTS just last year.
I wanted to ask all of you, at what age did you have your earliest symptoms? ........
Also whether anybody's been diagnosed with a Autism Spectrum Disorder and if they now wonder if it was actually their CFS that was masquerading as this?
thanks very much.....
Click to expand...

Looking back, I think I first noticed symptoms when I was 25 right after (or even during) the birth of my first child. (The midwives were alsomst ready to transfer me to the hospital even though the birth itself had gone just fine because I was too drained to deliver the placenta.) It took an extra long time (months) for me to recover from the birth. The reason I mention this as possibly being related to my ME/CFS is that the fatigue was that same bone-crushing fatigue that I have now, but not quite as severe. From that time until about age 42 I was more tired than other people with 2 kids and also overwhelmed and foggy a lot, (often wondered how other moms were so "together") but nothing I would have connected with ME/CFS at that time.

Fast forward to when I was 42 and came down with mono. It took 18 months to recover. Sleeping all the time switched to being awake all the time. I also had POTS, but I didn't know what POTS was at the time and neither did the doctor I was seeing at the time. My ME/CFS was what I would call mild to moderate for those 18 months followed by six months of apparent full recovery.

Then sudden onset of extremely severe ME/CFS where at times some of my family thought I was dying, and I did too. This lasted 2 years. I was also wishing to die because the symptoms were so severe and never one minute of let up, and the burden on my family, etc. This past year I am still mostly bedridden/couch ridden but the misery is less than before.

My first son has an Asperger's diagnosis. He is now 19. My second son has dyslexia and discalculia. He is now 17. Neither of them seem to have ME/CFS symptoms per se, but sometimes I worry about my second son because he has a lot of problems with cold hands and feet and poor body temp regulation- all things that I had long before I ever got any other symptoms of ME/CFS.

As a side note, I understand it's common for support groups for moms who have children with Asperger's or other autism spectrum disorders to have 75 to 80% of moms having ME/CFS or FM or both.
 
alex3619

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
At age 4 I had a condition that has only just recently been named: cyclic vertigo. Bouts of intense vertigo and vomiting, with extreme photophobia and even convulsions. At age 7 I had measles encephalitis, which is a known CFS trigger. Bye, Alex
 
F

Francelle

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Location
Victoria, Australia
shelley

shelley

Messages
7
Location
UK. London
rwinsmom ,Hi, so sorry to hear of your really long illness, such a struggle with a young family.......
forgive me if I sound terribly ignorant but how do they differentiate between Pots and CFS, in a case such as yours, when the symptoms are so alike....I've been hearing everyone's symptoms and struggles with CFS and it sounds exactly the same as my daughter, with much more detail of what she is experiences with a chord striking in me with everything I've read. I suppose the information I've seen about POTS seems lacking (I didn't understand CFS before, until I stumbled on this website in search of POTS info) ? Could she be CFS too? AS her fainting came years after many other symptoms....

That is so astonishing the connection with the autism spectrum! Like your son, my daughter has problem with the body regulating temperature, she's always freezing cold and she gets too hot in the Summer with the heat making her totally distressed.
 
shelley

shelley

Messages
7
Location
UK. London
Francelle said:
I read recently that enteroviruses, which some such as Dr Chia believe to be prevalent in M.E./CFS patients, cause blister type skin eruptions.

http://www.humanillnesses.com/Infec...Coxsackieviruses-and-Other-Enteroviruses.html

http://dermnetnz.org/viral/enterovirus.html
Click to expand...

Thanks for those links

I'll have to talk to the GP....
Francelle, you put up a thread about Myclonic jerks, I was really interested because my daughter 'jolts', all of a sudden her whole body moves just once, like as I can only descibe as a jolt... could be up to 4 times a day, sometimes a week without , we've never realized why. She describes it as like the feeling of a mild electric shock . Is this common in CFS sufferers too?

edit: also when she collapses she sometimes twitches all over.
 
rwinsmom528

rwinsmom528

Messages
34
shelley said:
rwinsmom ,Hi, so sorry to hear of your really long illness, such a struggle with a young family.......
Click to expand...

Thank you for caring. Just to clarify, I did not fit the case definition for ME/CFS until I was 42. Up until then I didn't really realize that I was that far out of the norm. (But, after I got really sick at 42 some of my friends commented to my mother that they felt like there was something wrong with me for years.(--just typing that makes me laugh....guess I've always had "someting wrong" with me. ;) Back then I knew nothing of ME/CFS, but now that I am sooo acquainted with the symptoms I feel safe in calling those early symptoms ME/CFS-related. Maybe I should call them possible warning signs? Or was it just that my adrenals were not functioning properly at that point and later I also got ME/CFS or ME/CFS attacked my adrenals first? Who knows?
 
L'engle

L'engle

moogle
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3,291
Location
Canada
I was around 19. So I remember being healthy as a teenager and then always tired as an adult. I thought it was just my personality, or just what happens when you become an adult. I could mostly hide it until it got more severe.
 
*GG*

*GG*

senior member
Messages
6,397
Location
Concord, NH
shelley said:
I'll have to talk to the GP....
Francelle, you put up a thread about Myclonic jerks, I was really interested because my daughter 'jolts', all of a sudden her whole body moves just once, like as I can only descibe as a jolt... could be up to 4 times a day, sometimes a week without , we've never realized why. She describes it as like the feeling of a mild electric shock . Is this common in CFS sufferers too?

edit: also when she collapses she sometimes twitches all over.
Click to expand...

Oh, is that what Myclonic jerks are, whole body movements? I used to suffer from that just before falling asleep, it would wake me up when dozing off!

I just looked up a little info on this, and I guess it is found in Epilepsy.
 
T

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
shelley said:
Hello, I've been learning so much from reading about all your experiences and been picking up some much needed advice, I can't tell you what a revelation I've had today as before I've been pretty much in the dark.
I think I might be a bit different as I'm posting on behalf of my daughter, who has been diagnosed at the age of 8 from Aspergers Syndrome and POTS just last year. I hope I'm posting in the right section, excuse me if I'm not :ashamed:
I wanted to ask all of you, at what age did you have your earliest symptoms? My daughter has a problem with chronic vomiting and exercise intollerance way back when she was age 6. As Pots is meant to be something that manifests in teenage years, I wondered how relevant age was.
Also whether anybody's been diagnosed with a Autism Spectrum Disorder and if they now wonder if it was actually their CFS that was masquerading as this?
thanks very much.....
Click to expand...

hi there, I have CFS/ME .. with POTS ... along with having Asperger's (and other things too). I do think you need to take a great deal of care that your daughter hasnt been falsely diagnosed with having Asperger's due to having CFS/ME as so many Asperger's symptoms do appear in CFS/ME too.

Some things which appear in both things.. sensitivities (to sound etc), need to sleep more, Aspie people are often night owls so can look like CFS/ME sleep reversal issues, coordination issues and clumbiness, problems with sensations, central auditory processing disorder problems etc.

I personally think my CFS/ME makes my Asperger's appear far worst then it is. I used to cope fine with life stuff with Asperger's but dont well at all with the CFS/ME. The two issues also will play into each other eg stress of CFS/ME will of cause make the Aspie stuff worst (makes it much harder to hide it).

My earliest strange symptoms (CFS/ME like ones) were once in primary school and once in junior high... I was a very fit child but on two occassions I remember, suddenly like had a burn out (once out with nanna when shopping and the other time on a class hike). I remember these incidents as thou i was extremely fit, I was left embarrassingly unable to walk any further (like all the energy suddenly burnt out of my legs).

I then got glandular fever as a teen, spent 10 weeks in bed.. recovered but then got full blown CFS/ME 11 years later (and then later on I got POTS).

I didnt get a Asperger's diagnoses till 38 yrs old, based on my childhood stuff back before I had CFS/ME). I did have faints when a teen when I stood too fast which were put down to the fact of me having very low BP, as far as Im aware I didnt have POTS then, the POTS I believe came after having the severe CFS/ME.

There are many reasons why someone can get POTS.. yes it is common in teens... but it is extremely common in CFS/ME (70% according to the CFIDS assoc) so based on that fact, Id think it isnt surprising for a 8yr old CFS/ME child to have POTS. (most teens who get POTS who ive come across on utube and medical sites, dont have CFS/ME).
 
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