Common Symptoms

[loki]

Hello!

I'm trying to find common symptoms in CFS/ME cases to help me getting forward with my work on the etiology of this disease.
It's not easy to get the right informations together since CFS/ME is a really complex thing and nearly every case seems to have differences and numerous outcomes.
I would be really pleased if you could provide me with some first-hand information like answering the following questions to help me figure out a solution:

-What symptoms do you experience everyday?
-Which symptoms arise only after you do specific things? (e.g. getting confused after drinking milk/eating wheatbread)
-Which symptoms showed up directly after the outbreak of the illness? Which symptoms manifested after some months or years?

 

[Cort]

We really need to build a big database (anyone have computer skills?) I was just thinking of that actually.

For me common symptoms

head pains, burning muscle feelings, fatigue, tight feeling muscles, stiffness, rapid breathing, fatigue, multiple wakenings at night, chemical sensitivities, bloating (much reduced), increased startle

Eating wheat, soy, dairy, rice, alcohol - lethargy
Eggs, beans - gut cramping
Caffeine - increased energy followed by gut cramping and fatigue the next day

My general symptoms have been stable for the past 30 years except that I added IBS (much better with diet changes) and chemical sensitivities...still a significant problem but much better.

 

[loki]

thank you! Well i was a programmer (C/C++/Java etc.)in my healthy days so i basically know how to set things up but when i begin a project and, i think you know it, crash so, so often

Another symptom, that I experience: Hot flashes originating from the spine, can you too relate? Because the most important thing to get to the etiology is to find the most prominent symptoms and then, search the source.

 

[Merida]

Loki - Yes, hot flashes, severe sweating when changing spine ( neck ) position. I think mine is dysautonomia related. I understand that sympathetic nerves wrap the vertebral arteries, which thread through small holes in the lateral sections of the cervical vertebrae. So, if a mild scoliosis or whiplash or ??? have caused the cervical vertebrae to rotate or shift, these arteries and nerves can get irritated/ stressed. (From Scoliosis and Spinal Pain Syndrome by Professor, Dr. Valentyn Serdyuk, Odessa Univ., Ukraine. ) sometimes people are born with small holes ( foramina) in the vertebrae and are more susceptible. Could be somewhat common.

I hate to even mention that syringomyelia ( a bubble of spinal fluid in the cord) can cause this. And so myelomalacia - small bubbles that are hard to detect on MRI.

Other symptoms for me : colonic inertia, various bladder problems - hesitancy, frequency, leakage , pelvic floor collapse - you guys don't generally have to worry , weakness in legs/arms, difficulty falling/ staying asleep ( reduced REM and stage 4), dry mouth - especially when lying on back, blurry vision - sometimes cognitive, tremor on right, tremor in jaw, GERD, jaw shifted back towards skull, constant head pressure, low grade fevers, lifting grasp - dropping item, more

Cort, it would be wonderful if you could get a list going. So grateful you are so functional and so capable !!!

 

[Merida]

Loki - what to you think the etiology might be?

 

[tandrsc]

I wrote something up for my GP a few years ago. I've attached it in case it's a helpful format for anyone else.

Happily, I've managed to fix most of these symptoms but the crushing exhaustion and PEM are still beyond me.
In hindsight I was also struggling with cognitive problems (bad brain fog and inability to concentrate) but at the time I put that down to the tiredness.

 

[IrisRV]

If you are starting a list of symptoms, it might help to start with the CCC and ICC since those should list the most common symptoms, and then add from there if other symptoms are suggested.

My symptoms have been pretty different than those listed here so far. Most are under control with symptomatic treatments, but here's the symptoms I've had. They're typical ICC I think

• PEM usually delayed by 3-4 days and lasting weeks to months. More recently it starts sooner and doesn't last as long.
• PEM includes acute flu-like symptoms, increased OI, increased muscle and joint pain, extreme exhaustion, cognitive dysfunction
• Low threshold of both physical and cognitive fatigability to the point where it was very difficult to carry on a normal conversation as even a few minutes of cognitive effort wore me out completely.
• extreme exhaustion
• OI, low blood volume, tachycardia, low BP
• low body temp, intolerance of both heat and cold, sweating for no apparent reason, not sweating when I should leading to heat exhaustion
• muscle and joint pain
• very poor focus and concentration, poor memory, slowed thinking, difficulty with decision-making, difficulty with word-finding
• difficulty initiating sleep and very, very little ability to maintain sleep (waking every 1-2 hrs every night)
• mild-moderate sound sensitivity
• impaired balance
• constant flu-like symptoms with swollen glands
• constant sore throat
• several bouts of mumps-like swelling
• several bouts of shingles
• several bouts of pneumonia
• catching everything I was exposed to - colds, flu (including H1N1), etc, multiple times a year
• chronic or recurring infections (EBV, HHV6, HSV, C. pneumonia, Parvo, Coxsackii,
• chemical sensitivities
• hypothyroid, both T3 and T4
• very low CD8+ cell numbers
• very low IgM
• IgG subclass deficiency (recent)
• usually slightly high NK cell function, very recently low NK cell function with high numbers

Yeah, I'm falling apart at the seams.

If I was to generalize my symptoms, I'd say they are PEM and exhaustion (of course), immune problems, dysautonomia, cognitive dysfunction.

My symptoms are not related to food.

ETA: I should clarify that these are symptoms I have had over the course of the illness. I'm getting a lot of good symptomatic treatments and supportive therapies , so most of the symptoms listed above are under control or greatly diminished now

 

[Merida]

irisRV - yes, I have similar, but my thyroid keeps testing normal. I understand that sometimes patients need to take more t/3. t/4 than lab tests indicate. The TSH can be very, very, low, and finally the patient feels better. Do you know about the site, Stop the Thyroid Madness. Pretty interesting. Also, it is well appreciated that EBV can hit the thyroid.

So discouraging that we have so many symptoms - and no one really even knows why.

 

[Who Me?]

@Merida if you want to alert someone that you talked to them, put an @ in front of their username. That's how you tag them.

 

[tandrsc]

This is the list of symptoms surveyed in Susan Vernon's recent paper (http://www.tandfonline.com/eprint/xFyBDDAFYeVqXVcr4rBg/full)

Arthralgias
Bladder pain
Bowel difficulties
Brain fog
Depression/anxiety
Dyspnea
Fatigue
Fever/chills
Headache
Light/sound sensitivity
Lymph node enlargement
Muscle aches
Nausea/vertigo
Orthostatic hypotension/POTS
Pelvic pain
Sleep problems
Sore throat
Urinary frequency

Thanks to @tatt for posting http://sci-hub.io/ so that I could see the whole paper. I entered the DOI which is above the names of the authors.