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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Age Of First Symptoms?


Senior Member
Hi Shelley, have tests for Addisons and Adrenal insufficiency been done? I,ve run the symptoms through diagnostic software and thats what it comes up with link here http://en.diagnosispro.com/differen...0969-154_154_154_154_154_154_154_154_154.html if testing for these conditions hasn't been done, information on what should be done can be found here http://www.suite101.com/content/adrenalinsufficiency-a1543 and more info here http://www.suite101.com/content/addisonsdisease-a1714 it's important to get this investigated, especially as vomiting is not a symptom found in any of the diagnostic criteria for CFS.

All the best i hope the answer is found soon!
UK. London
Hi taniaaust1, thanks for explaining so well about your experiences :cool:, my daughter hasn't actually been diagnosed with cfs/me, POTS is what she has.
So it's more common for cfs patients to develop POTS than the other way around, that's interesting.

rlc, thanks for your best wishes! I did mention Addisons down at A+E once, they looked at me like I'd grown two heads :rolleyes:
Before we found out it was POTS, I came across the symptoms for Addisons and all her symptoms were there, of course it's much more easy to access information about that illness, than it is for POTS.

I think I know now what her problem is with the twitching when she passes out, it's called Reflex Anoxic Seizures.


Senior Member
Hi Shelly, sounds like typical dumb doctor reactions, my friends sisters has Addisons she went through years of of suffering thanks to docs not doing the tests, they only worked it out finally in hospital when she was a few hours away from dying, shes fine now. Thought you might be interested in this Addisons and AI mimic POTs link http://www.dinet.org/what_causes_pots.htm and can cause seizures http://professionals.epilepsy.com/page/metadis_adrenal_insuf.html MY feeling is that because your daughter has so many of the symptoms of these conditions, the right tests have to be done just in case.

I know it's hard to get anything done with the NHS i live in New Zealand and their hopeless here aswell!! Here's a case of a women who was misdiagnosed and had Addison's all along only managed to get tested by treatening legal action http://www.patientopinion.org.uk/opinions/8719

I would imagine your daughter has been inside alot because of her illness, has anyone checked her vitamin D levels, a deficiency of that might be adding to her illness.

All the Best


Phoenix Rising Founder
That is a great question....my symptoms hit me when CFS hit me - when I was 19 or 20; nothing even remotely like it before then - complete good health; had NO idea that such a thing was possible.

Please keep posting on this question - it's something we are interesting in developing our survey.....ie who had CFS-like problems or symptoms sometime before they got ill and who didn't - and what they were. Thanks for starting the question.
I thought of myself as having good health prior to glandular fever...

but as a child I feinted at the sight of my blood.
I had sinus problems (that were irritating rather than serious).
I had POTS like symptoms for a while as a teen.

Maybe they all indicated a prior susceptability to CFS? I have no idea how common these sorts of things are. It didn't seem serious at the time.


Moderation Resource Albuquerque
I had odd symptoms as a child which doctors laughed at or dismissed, but I can now see they were related, even though I wasn't "sick" as a child.

Even though I was very active and fit, I couldn't do sustained aerobic exercise like running or swimming any distance. I was very sensitive to sensory stimulation, had continual swollen glands, and at adolescence, began blacking out when I stood up.

Looking back I can see that I had Elhers-Danlos too. I remember the doc laughing at the stretch marks on my skin when I was still a child--with no weight gain to provoke them.

My health just generally got slowly worse from teen-age years. My suspicion now is that I had inherited XMRV from my Mom as she had CFS-like symptoms all her adult life.

I can't remember a time, other than child-hood when I had good energy and health.

Maybe we'll finally get to the bottom this? Boy, do I hope so.



Senior Member
This is always a tough question for me. If we count from the flu-like illnesses that started the obvious symptoms, I was 46yo and daughter was 12yo.

However.... I'd been having weird symptoms long before that -- catching everything, mcs-like symptoms, fatigue, persistant sore throats -- that in hindsight seem very suspicious. I wouldn' be surprised to find that I've had ME/CFS in a mild form since I was in my teens or twenties.

My best guess at this point is that my daughter and I have been infected with something (XMRV?) for a long time and that the flu-like illness that "started" our ME/CFS 6 years ago was some nasty secondary infection that then made everything worse. Whatever it was, it hit very rapidly and hard.
St. Louis, MO
My CFS hit when I was 24. I was fairly healthy before that but looking back I did have a few unusual symptoms: 1) recurrent bacterial throat infections - usually in July; 2) inability to stand for long periods of time; 3) an incident of severe unexplained abdominal pain when I was 13; and 4) a slightly abnormal neurological exam when I was 18. Hmm.
I have also been recently diagnosed Aspergers. Just a few days ago I came upon a site about POTS and realized I have many of the symptoms.

They started occurring fairly recently. A few years ago my skin started becoming red and blotchy whenever I got hot; it was particularly noticeable in the shower. I also noticed that my heart would beat hard at unusual times, such as when I wasn't exerting myself or even lying in bed. A little later I started intermittently experiencing severe head rushes upon standing. I have over time noticed various other symptoms that could be related to POTS, such as sensory sensitivity, stomach problems, and absence of sweating, but I'm not sure how long these have been occurring. I'm seventeen, so my symptoms seem to be following the timeline for teen POTS mentioned on a website I visited, where symptoms begin around age 13 and peak around age 16. I should be visiting my primary care doctor soon to find out whether I actually have POTS or not.

I had an experience similar to taniaaust1's when I was in elementary school. A few times my legs suddenly crumpled under me and it took a few moments for them to begin working again. If that is, in fact, related to POTS and I do have it, those would have been my first symptoms.

Around third grade it also became apparent that I have some mental impairment which has caused much trouble throughout school. I recently became aware that I constantly have some amount of confusion, though it varies greatly in strength. It seems related to my other POTS-like symptoms. If this confusion is the cause of the slowness I have had all my life and is caused by POTS, that would set my major symptoms much earlier.

How severe can mental impairment caused by POTS be? Sometimes I can become so "foggy" that I can barely talk and have trouble forming thoughts. Also do any of your eyes start to twitch uncontrollably when they get fatigued?
I was diagnosed with ME a year ago but the Doctor thought I'd had it since the age of 4-5 when I had measles. Since then I became ill with numerous viral and bacterial infections plus bouts of abdo pain(one ended up with an appendicectomy). I've had endometriosis and had all repro organs removed in three separate operations. My symptoms then really hit me 18yrs ago when I collapsed and was admitted unconcious with a ? viral infection. I was in for a month, a spell in ICU, poorly+++; from that time on I've had no energy, typical boom and bust, constant severe pain, in and out of hospital collapse ? cause, loads of other symptoms, more time in bed than out, then 2 yrs ago mum died and I've been in bed since. I am now 54yrs old. I have two boys one with dyslexia the other born with an atrial septal defect( he also had a deformed placenta and was born at 37 weeks small for dates). I have often wondered if my illness had a bearing on my sons medical/educational history. Perhaps someone might ask ME affected mothers if their children had similar problems as mine had.


Senior Member
Salt Lake City
I had my first symptoms before the age of two. They are not that obvious except together in retrospect. I had headaches which continued and worsened for 56 years until mb12, multiple sleep disorders which continued 57 years until after I took mb12 and Metafolin. I had delayed myelination which caused delays of understandable speech until age 6. I had the "growing pains" associated with later development of FMS and widespread painful muscles. I had impaired immune function resulting in half a dozen streps per year, a pneumonia every few years and so on which continued for 57 years until after mb12. I had a low grade fever which continued for decades until 16 gram daily doses of vitamin C, chronically swollen glands and which continued 57 years until mb12 and metafolin. I had full blown CFS for more than a year after mono as a teen. I had mild multiple chemical sensitivity which continued 57 years until after mb12 and Metafolin. I had allergic asthma and allergies which continued 57 years until after mb12 and Metafolin. I had skin problems from well before age two that continued 57 years until mb12 and metafolin. I had all sorts of mysterious variable complaints as is normal in CFS and FMS I had IBS starting by first grade that I remember. My mother said it started earlier.

All of these things continued, morphing a bit as I got older, but never going away, never getting better, just slowly changing and more and more symptoms accumulating, all of which the doctors called "non-specific" and insignificant. I went to summer overnight camp for 4 summers 8 weeks each summer. There wasn't a single summer I didn't spend a week or two in the infirmary because of illness, and one of the very few in a camp of 64 campers to do so ANY summer much less every summer. These things all continued and worsened for all my life until the past few years.

This is the count off of a currently being modified but not completed version of the list, since I am increasing the amount of detail of neuropathies all counts will go up similar amounts when neuropathy is present but is otherwise identical to the posted list.


  1. 46
  2. 52 - health crashes of 6 months or more age 12, 15, 17, 19, dropped out of college 3 times for health reasons
  3. 54 - health crashes of 6 months or more age 21, 22 - Started taking 500mcg or more daily doses of cyanocbl at age 22 along with folic acid and most basic vitamins and minerals
  4. 128 Fullblown FMS hits at 31, Fullblown CFS its at 39
  5. 157
  6. 152 Started mb12 etc
  7. 20 - Now