Poll: In What Month Did You First Become Ill?

[Sean]

I always deteriorate in winter and both my onsets were a month before and a month after winter. It makes me wonder if I had lived in the tropics whether I would have had a slower progress with this illness than I have.

Heat, especially humid heat, is hard work.

 

[Mij]

Ok, since we're getting into more detail now maybe I need to be more specific.

Intense vertigo onset Feb.8- was still able to attend school and work.
Mid March- received Rubella and Tetanus vaccine (on the same day) was feeling not quite myself, mild sore ear/throat and constant grinding in my gut- but still functional.
Mid May- received 1st Hep B vaccine- felt weird but still functional - stopped running.
Mid June-received 2nd Hep vaccine- yikes, my stamina slowly diminishing - feeling unwell.
Mid August- intense vertigo returned- went to the doctor- had extremely elevated anti-thyroid antibodies.

From August until March the next year had to stop working etc.- sick with constant rocking back and forth feeling in my head when was upright- went away when lying down.

Mid March- started recovering slowly and by May returned to work feeling 90%- not my old self. Went for a run and my muscles felt very strange after. Hard to explain.

Worked for 4 weeks- slowly fading, equilibrium getting worse, losing more stamina by the day, wired/insomnia/unrefreshed, mild sore throat and grinding sick feeling in my gut again. Weird gait- walking as though Ihad MS. Eventually became unable to stand upright or walk- stopped working.

 

[Old Bones]

I always deteriorate in winter and both my onsets were a month before and a month after winter. It makes me wonder . . .

Hi @rosie26 I've been wondering if people with acute or rapid onset have experienced, over the years, a worsening of their condition at approximately the same time they became ill. My two "onsets" were in late September and mid-October, the beginning of our fall. I always deteriorate in the fall, enough to be noticed by early November, with a continued downward trend for several months. Perhaps the reduced daylight hours? This consistent trend of gradual worsening is different from the random "crashes" I've experienced from either doing too much, or trying an inappropriate treatment -- pharmaceutical, or other (eg. sleep restriction, brainwave retraining).

Does anyone experience something similar -- being consistently worse in a particular season?

 

[Old Bones]

From August until March the next year had to stop working etc.

Mid March- started recovering slowly and by May returned to work feeling 90%- not my old self.

Worked for 4 weeks- slowly fading, equilibrium getting worse, losing more stamina by the day . . . Eventually became unable to stand upright or walk- stopped working.

@Mij You certainly had a number of vaccine "hits" in a short period of time. I'm so sorry to hear they had such a devastating effect. But, your comments about working, or not, reminded me of something. Years ago, one of my ME specialists advised me not to even contemplate a return to work (neither full, nor part-time) unless I had experienced consistent recovery for a full year. He felt that to return too soon would place my health at risk. Based on your experience, it seems this was good advice. As for me, although there have been a few times I've felt I'm "on the mend", they've never lasted longer than a day or two. And, these nearly-normal days frequently occur just before a worse period -- as if I'm moving from one health condition to another, passing briefly through a state of equilibrium.

 

[Mij]

@Old Bones Thankfully I decided not to have the 3rd and final Hep B vaccine- that one might have done me right in

I agree with your M.E specialist, this was VERY good advice not to return to work full or part-time until at least one year. I was told after having a thyroid scan that I had a probable viral infection and to take it easy. Finally after the relapse I went to see an M.E specialist and he advised me to do nothing- literally. So I did nothing, but after 5-6 yrs I slowly started improving and took up running again, yup, I didn't learn my lesson the first time around. Soooooo, hear I am more disabled. We can't stress enough not overdo or start aerobic type exercise (ever)- it just doesn't work no matter how "good" you start feeling again.

How long have you been ill? I'm on 25yrs and have improved in some ways but worse in others. My immune system is whacked out this last year since starting menopause.

 

[Old Bones]

How long have you been ill? I'm on 25yrs and have improved in some ways but worse in others. My immune system is whacked out this last year since starting menopause.

@ Mij For me, it will be 28 years this fall. My situation is similar to yours. Although I don't feel as consistently "wretched" as I did in the early years, this is probably because I have gradually learned to limit my activities to match my condition -- at least most of the time. I occasionally give myself a challenge, to ensure the lifestyle I've adopted isn't unnecessarily restricted. So far, this has always resulted in a worsening of my condition -- to the point of being almost bedridden for short periods of time. Currently, I still haven't completely recovered from "overdoing it" four years ago. This involved a change as simple as standing rather than sitting at a weekly two-hour recreational choir session, something I haven't returned to, since I can't control what is expected of the group, nor my unwillingness to participate in a restricted fashion compared with the others.

Menopause definitely added a whole new layer of immune problems. Around that time, I was diagnosed with rheumatoid arthritis together with associated peripheral neuropathy, worsened gut problems, food insensitivities (mast cell/histamine issues), and mild psoriasis. And a few years later, thyroid problems. I think my physician hoped treating my hypothyroid would make a big difference. It didn't.

It is difficult to understand the ways I've both gotten better, and worse. For example, my ability to do simple math with a calculator and formulate (and express) ideas has improved. But, my ability to learn and remember is much worse. My concentration for some things is better, for others worse. Although I don't feel as ill, I am functionally more impaired. This is partially due to the feedback provided by a heart rate monitor, and the realization of how any activity (physical or cognitive) adversely affects my POTS. I'm hoping that more diligent pacing will eventually result in an upward, rather than downward, trend. But so far, it seems to be a management tool only. The past year is the first I've started feeling old, in addition to ill. So, the advance of time irrespective of illness isn't helping.

Otherwise, I am in much more pain these days than in the early years, with layer upon layer of different types of discomfort.

 

[Mij]

@Old Bones so sorry you have these added autoimmune illnesses now. I used to have a great integrative and functional medicine doctor who would run all the tests etc that I wanted and booked hour appointments but he retired 4 years ago. Now I'm stuck with my GP who sees me for 15 minutes a year for my physical exam and asks "how is your chronic fatigue?" I find it stressful seeing her, especially when she wants to update my tetanus. Hello?

She knows I'm ill, she understand M.E is a real illness but she doesn't get involved. I'm pretty sure I'm hypothyroid at this point but won't get anywhere with her since she follows the standard outdated testing.

I'm relating to a lot of what you wrote. I don't feel "ill" either, but I'm disabled when it comes to walking or standing too long during the daytime, it's been worse since menopause.. I've become really good at pacing in the last several years and this helps, I hate PEM.

I can just hope I don't get worse.

 

[rosie26]

Heat, especially humid heat, is hard work.

Yes I find the heat hard on my POTS but I feel better immune system wise in summer. I wish I were able to afford to buy a house in Brisbane and escape there every winter season. It would be interesting to see how I fared not having to go through another winter.

 

[rosie26]

Hi @rosie26 I've been wondering if people with acute or rapid onset have experienced, over the years, a worsening of their condition at approximately the same time they became ill. My two "onsets" were in late September and mid-October, the beginning of our fall. I always deteriorate in the fall, enough to be noticed by early November, with a continued downward trend for several months. Perhaps the reduced daylight hours? This consistent trend of gradual worsening is different from the random "crashes" I've experienced from either doing too much, or trying an inappropriate treatment -- pharmaceutical, or other (eg. sleep restriction, brainwave retraining).

Does anyone experience something similar -- being consistently worse in a particular season?

Both my mild and severe onsets were flu-like viruses. So they had an enormous impact on shifting me through the stages of ME.

In winter I still get POTS but I get the extra-heavy flu-like symptoms of ME and my immune and nervous system throw the worst of ME at me and it can be very bad, taking me to bouts of severe and the hell places that exist there. Summer is a major sigh of relief because my flu symptoms ease up a lot and I can actually get a few things done amidst all the usual amounts of resting.

 

[TigerLilea]

How unfortunate that this is not the type of anniversary we can celebrate. You are not alone in remembering the exact week and number of years. I also "mark" the exact date I stopped working. Perhaps with the encouraging research efforts, you'll soon have another more positive anniversary on your calendar. I sincerely hope so -- for all of us.

It's easy for me to remember because one of my best friend's daughter was born just before I came down with CFS.

 

[TigerLilea]

@Old Bones

How long have you been ill? I'm on 25yrs and have improved in some ways but worse in others. My immune system is whacked out this last year since starting menopause.

I've been whacked out since menopause, also. I'm hoping that once my hormones finally settle that I'll be back to my usual CFSie self.

 

[rosie26]

I've been whacked out since menopause, also. I'm hoping that once my hormones finally settle that I'll be back to my usual CFSie self.

I'd just turned 48 when the menopause began. A couple of weeks later I had the first missed period of menopause and that was exactly when my ME deterioration began. So there was a definite hormone shift that my ME didn't like. And I felt the impact straight away. I am hoping that things will settle down in the next few years.

 

[Mij]

@rosie26 @TigerLilea yes . . . waiting . . . hope. . .

 

[Old Bones]

I've been whacked out since menopause, also. I'm hoping that once my hormones finally settle that I'll be back to my usual CFSie self.

@TigerLilea @rosie @Mij Have you had your hormones tested since menopause? I did, and the levels were either what you'd expect to see in a woman in her 80's, or zero. Supplementing with bio-identical (compounded) DHEA, progesterone cream and estrogen patches (non-bio) seemed to help me to use my muscles a bit without trembling, at least at first. But the trembling came back, so maybe it was just a coincidence. After several years, I can't say if they are doing anything. But I continue taking them, on the assumption that having hormone levels so low they can't be measured is not a good situation to be in.

 

[Forbin]

The possible connection to seasonal allergies is intriguing. I seem to get ONE allergy attack in the spring and ONE in the fall, max. They lasts for little more than 24 hours, but are strong enough to send to me to bed for the day.

There was also a period of several years there where I would get tinnitus every September, like clockwork. I was told it was allergies.

In fact, even though I almost never have allergy symptoms otherwise, every time a doctor looks in my nose they tell me that it is inflammed and ask me about my allergy symptoms, even though I have none.

 

[rosie26]

@TigerLilea @rosie @Mij Have you had your hormones tested since menopause? I did, and the levels were either what you'd expect to see in a woman in her 80's, or zero. Supplementing with bio-identical (compounded) DHEA, progesterone cream and estrogen patches (non-bio) seemed to help me to use my muscles a bit without trembling, at least at first. But the trembling came back, so maybe it was just a coincidence. After several years, I can't say if they are doing anything. But I continue taking them, on the assumption that having hormone levels so low they can't be measured is not a good situation to be in.

@Old Bones Thanks for the reminder about this, I had forgotten. I do have a good menopause doctor that I could see. It will be costly but I think your right I should see if I can get some help with it and I think she will be very through in finding out what my hormones are doing. I keep forgetting about her. She was recommended to me a couple of years ago and I also remember this particular doctor from my work days many years ago.

How many years have you been taking hormone treatment @Old Bones ?

 

[Old Bones]

@Old BonesHow many years have you been taking hormone treatment @Old Bones ?

@rosie26 I started hormone treatment almost six years ago. I occasionally wonder about the potential risks. But, my doses are low -- just enough to create hormone levels in the average range for a woman my age. And, I have an excellent doctor whose judgment I trust.

 

[Arius]

August 12, Northern Hemisphere.

 

[erin]

February, winter.

 

[Little Bluestem]

Late March, northern hemisphere.