What does your ME/CFS Look like Poll: Please describe your symptoms and Cluster

[Wolfiness]

What about gradual onset?

 

[Justin30]

What about gradual onset?

I ran out of options in the poll:

****I ran out of choices bit "Gradual Onset no known trigger" Should be added****

If you can @wolfita gradual onset should be noted with the corresponding symptoms followed by symptom cluster

 

[Mij]

@Justin30 I agree with Justy, I just can't around to answering all this.

 

[Justin30]

@Justin30 I agree with Justy, I just can't around to answering all this.

I respect your honesty. I know it can be a lot for people here.

 

[Snow Leopard]

Tough to answer all this, but I'll give it a go:

Summary: Vaccine Onset- F, S, P, BF, PEM, OI, Neuro Symptoms (N)

Fatigue: worsened by physical exertion (PEM), Activity level decreased to less than 30% of pre-illness activity level. Fatigue related symptoms are invariant with mood.

Sleep: Hypersomnia (excessive sleeping -12 hours+ per day), unrefreshing or non-restorative sleep, difficulty falling asleep, Altered sleep/wake schedule (alertness/energy best late at night)

Brain fog/Cognitive: bad short term memory, poor concentration, loss of words

Immune:Recurrent flu-like illness, Sore throat, Tender or swollen lymph nodes (glands), recurring cough, Sensitivities to medications (unable to tolerate a “normal” dosage) Sensitivities to foods (nuts, milk), Alcohol intolerance

Dyautonomia: Increase BPM 30 + upon standing, Can only stand for short periods of time. Dizziness on standing when my health is at its worst.

Neuro - Dysphagia (was first symptom I had!),15+ year long headache, neuropathic pain, Brain Fog, cold hands and feet, weakness of limbs, Lightheadedness, Photophobia (sensitivity to light), some sort of muscular vision decline that only started in my 30s after being ill for many years.

Pain: Constant: headache, Muscle pain, back/neck pain, constant severe eye pain!

Gastrointestinal Food intolerance: milk, nuts (cause eczema), intestinal gas.

3.
Define level of severity 1 to 10

3/4 out of 10.

Initially was relapse remitting for 2 years, but never remitted after that and after an initial improvement, slowly getting worse.

4. Give a brief explanation of your illness.

Onset was "Guillain Barre-like syndrome" - acute flaccid paralysis in lower limbs, just a few weeks after oral (live) Polio immunisation along with Diptheria, pertussis, tetanus vaccination. First symptom - Dysphagia (severe difficulty in swallowing), just a day or so after the immunisations.

5. Meets Fukuda, CCC and ICC, never had Guillain Barre Syndrome confirmed.

 

[Chezboo]

Gradual onset so none of the above (not that I don't have lots of the above problems of course)

 

[rosie26]

@Justin30 I agree with Justy, I just can't around to answering all this.

Same @Mij I didn't know how I was going to do it either. I spent hours on it. I still have to do the poll @Justin30 . The poll looks even harder for me.

I think what really helped me do it was that I had been wanting to write down all my symptoms for quite a long time and @Justin30 helped do a lot of it for me. There are still some symptoms that I had that aren't there, I'm sure, but will add as I remember them.

 

[Justin30]

@rosie26 this is part of why I created the Poll as ourselves and Drs dont often get a one shot look at how and what we experience.

The criterias as they stand now especially those that our brief such as the Fukuda miss so much of the actual picture and systemic nature of the disease.

The first time I wrote out my symptoms it blew my mind. I didnt think this was possible.

 

[CCC]

1. Bacterial or Parasite Onset- Fatigue (f), Sleep Dysfunction (S), Pain (p), Brain Fog (BF), PEM

2. FATIGUE- worsened by physical exertion (any, but especially sustained mild physical activity and any social and brain activity), cognitive effort or stress; activity decreased to less than 10%; low endurance (rapid deterioration)

SLEEP - poor quality, unrefreshing, hypersomnia, shifted sleep phase, no insomnia at all

BRAIN FOG - unable to think clearly, memory loss, inability to learn

IMMUNE - need to think about this

DYSAUTONOMIA - no

NEURO - no

PAIN - not much, just some GI pain occasionally and swollen lymph nodes

ENDOCRINE - loss of appetite, failure to thrive, dulled vision and hearing (only discovered when recovered from taking B12)

GASTRO - Stomach ache; abdominal cramps, Nausea,

3. Illness severity 1-10, 1 worst 10 best
worst = 2 (bedroom bound)
best = 6 (able to go for a short walk)

4. Brief Explanation
This was a gradual onset combined with adolescent growth spurts and eventually diagnosed gut parasite

5. Fukuda, CCC, ICC
Scrapes into CCC

 

[brenda]

What about environmental toxin onset?

 

[Justin30]

What about environmental toxin onset?

Sure add it in....can you soecify the toxins if possible?

I am looking forward to your response.

 

[brenda]

Sure add it in....can you soecify the toxins if possible?

I am looking forward to your response.

Mercury from teething powders and pesticide from house extermination.

 

[rosie26]

The first time I wrote out my symptoms it blew my mind. I didn't think this was possible.

There are so many symptoms. It's a bombardment and so hard when so sick and weak.

I've lost the ability to edit my previous post and I would have liked to have been able to keep adding as I remember more symptoms.

Another symptom I had in my severe years and a few years after was 'bursting veins in my hands', the sting was painful. This happened often and it made me feel old - like an elderly woman and I was only in my thirties. What system would this come under? I don't think there was a cardiovascular in your post @Justin30.

 

[Justin30]

There are so many symptoms. It's a bombardment and so hard when so sick and weak.

I've lost the ability to edit my previous post and I would have liked to have been able to keep adding as I remember more symptoms.

Another symptom I had in my severe years and a few years after was 'bursting veins in my hands', the sting was painful. This happened often and it made me feel old - like an elderly woman and I was only in my thirties. What system would this come under? I don't think there was a cardiovascular in your post @Justin30.

I would pick the best place it fits. This is just to account what it is truly like for us.

I really wish the general public could see the extremes of this infectious onset disease but also if one Dr said hey look at those people PR trying to help us.