Looking for others with same symptoms of my M.E.

[chickpea]

Hi all,
I'm looking for M.E. individuals with the same/similar symptoms as me. I found it such a huge range of people with ME that I am rather curious to learn more about the ones that are like me to see if there is a more common link that can be established. Thanks in advance to anyone who can contribute!

MY STORY:
- Sudden Acute Onset 28 yr old female (I am now 42)
- Vaccines and or virus suspected at onset
- Previously very active, but did get a lot of colds, throat and sinus infections which lead to a lot of antibiotics
I worked full time, travelled, played sports etc. I would 'catch' something, get sick for a couple days, sleep alot and take antibiotics and then would go 100% again until the final straw broke. I now fluctuate between 40-60%. Still have regular crashes and occasional relapses. Have never felt healthy since that first day onset.

SYMPTOMS:
- Severe fatigue
- Intense brain fog, cognitive issues (a more detailed MRI showed issues)
- Frequent gut issues
- IBS
- Orthostatic Intolerance (positive tilt table)
- Unrefreshed sleep (don't got into REM fully)
- Viral like symptoms in crash
- Always feel cold
- Frequent thirst and urination - not diabetic
- VO2 and exercise testing showed impairment
- NO PAIN ISSUES (although there is stiffness)

These are the major things, anything else I would consider for me, more background noise. If you can relate strongly, pls message here or me personally. Thank you!!

 

[Jan]

Sudden Acute Onset 26 yr old female
- Virus confirmed at onset
- Previously very active, but did get a lot of colds, throat and sinus infections which lead to a lot of antibiotics ( From age 16-17 I also had numerous throat infections, severe tonsillitis, laryngitis etc, all requiring antibiotics)
I worked full time, travelled, played sports etc. I would 'catch' something, get sick for a couple days, sleep alot and take antibiotics and then would go 100% again until the final straw broke. I now fluctuate between 30 and 40%. Still have regular crashes and occasional relapses. Have never felt healthy since that first day onset.

SYMPTOMS:
- Severe fatigue Yes
- Intense brain fog, cognitive issues Yes, plus neuro conditions, Trigeminal neuralgia, frequent severe migraines (more intense than pre ME and affecting half of head, plus numbness, tingling and weakness in left arm. Neuropathic pain in left hip and leg and burning pain in spine.
- Frequent gut issues Yes, especially whilst still eating wheat and more recently dairy and sugar
- IBS No
- Orthostatic Intolerance Yes, not been tested, this has got more severe over time
- Unrefreshed sleep (don't got into REM fully) Yes
- Viral like symptoms in crash Yes, swollen glands, sore throat, fluey feeling, aching muscles etc
- Always feel cold Yes, especially hands, left hand is often colder than right
- Frequent thirst and urination - not diabetic Yes, though this can vary from day to day
- VO2 and exercise testing showed impairment Not been tested, but always have PEM after too much walking.
- NO PAIN ISSUES (although there is stiffness) Here we differ, I have constant, pretty severe pain, probably have FM as well

 

[Shoshana]

Hi @chickpea

Mine overlap with yours, but not same at all.

I just wanted to say hi, and that I do hope
that you find a way to improve!


HI @Jan
OH, the trigeminal neuralgia.... I had not heard anyone else mention that....
and migraines.... me too, on those,
and others of yours.
Very difficult.
How much walking is too much for you?
Mine is VERY little. Kept getting less, even though I persisted in trying to maintain.

 

[Snowdrop]

Just to add a more direct answer to your question in opening post.

All of the symptoms you describe are familiar to many people here. The thing is--beyond that with the various other symptoms people experience I don't think it matters in the sense of defining the illness. With ME, something breaks down in the body and causes the symptoms most of us are familiar with. After that what further breakdowns occur and the results as experienced as symptoms can vary according to person.

It's possible that subgroups could also represent people with ME who also have another illness too. This is not unusual in this population. I have ME Fibromyalgia and Sjogrens Syndrome. The symptoms often are the same and overlap. It takes a while to really become familiar with this.

This is my opinion. Reading here on PR you will be able to form your own opinion. There are many threads that discuss the science and what might be the underlying mechanism.

Also, from my reading here these past years it seems clear that even with those who experience the same symptoms it happens that those people do not all respond to the same treatments when tried.

I know this might not seem particularly helpful in what you were looking for but I'm sure over time you will be able to draw your own conclusions.

 

[chickpea]

Hi @Jan and @Shoshana
Thank you both for your stories, very interesting. @Snowdrop I know this is a rather needle in the haystack sort of notion to try and get further answers. After 13 yrs of illness, I don't know where else to turn. I have seen a lot of subgroup ME patients. ie some have no brain fog, some have no viral symtpms, while others have a lot of pain. I wondered if linking me to others like my symptoms, might show an area to research more or better yet, try treatments that have worked for them, that I have yet to try. I know we are all different at the end of the day, but in this blur of information over 13yrs, I am desperate to find SOME real improvement.
Thanks again everyone.

 

[Jan]

Hi @chickpea

Mine overlap with yours, but not same at all.

I just wanted to say hi, and that I do hope
that you find a way to improve!


HI @Jan
OH, the trigeminal neuralgia.... I had not heard anyone else mention that....
and migraines.... me too, on those,
and others of yours.
Very difficult.
How much walking is too much for you?
Mine is VERY little. Kept getting less, even though I persisted in trying to maintain.

Hi Shoshana, over the past 26 years I have heard of pwme also having TN a handful of times, but it doesn't seem to be common. Neuropathic pain elsewhere is more commonly present. If you do a search on here there are some posts, I've not checked how many though. It has to be one of the worst pains known to man, I'm so glad I don't suffer too often these days. I am really hoping to get off of Lyrica, but it does scare me that the TN may flare up again. Is yours well managed? I took carbamazepine for a number of years.

As for the walking, it's becoming worse and worse, the repercussions are dreadful. I love my weekly outings, they cheer me so much, but I really do suffer after each little walk these days.