I don't get any PEM or crashes at all, or at least they arn't noticable. And my condition hardly fluctuates in any way, it just seems to be a permenant degradation with all my symptoms. I don't appear to have any major problems with my energy levels either, I just feel generally sluggish, weak and low on stamina all the time, more so as my condition deteriorates.
I definitelly think it's another disorder and not actual ME. I've sadly seen many people on here in a similar boat, testing positive for Lyme, Candida, or growth hormone deficiency for example after being previously diagnosed with ME/CFS or Fibromyalgia.
Did you ever have PEM like symptoms? I can identify with the symptoms you posted as well as the linked post. My cognition is often very poor. No short term memory. A piece of paper is my short term memory but even if I write a few things down I am still confused and often don't remember what I am writing. I can do things by reflex but having to think in real time is often an intractable problem. My brain just feels like its on fire a lot of the time
I have found some things that help me but when in an overly crashed state they don't help at all. When I am in this state I don't seem to suffer PEM either. I just feel like crap 24/7. Resting may help a bit but not much. It seems there is a very thin line for me doing too much vs not enough. Neither are good. When I can maintain the right exertion level I can feel the positives from meds/supplements again. Also PEM becomes noticeable again if I push myself too far. Again when I am in my worst state it is very much the same as you and can last for months/years on end.
I wonder if you could be experiencing something similar and are just stuck in that bottom state?
No easy answers but I found the Wim Hof method was able to give me balance again (Yoga/meditation were mostly not doable to me due to inability to focus and the brain on fire thing.) Microdosing and Lion's Mane helped my cognition somewhat. I find kratom practically the same as tramadol (opioid) but with less negatives. 1.5g of phenibut twice a week . Normally I feel like my life is getting smaller and smaller I can't restrict exertion enough. This causes me to be too conservative. Phenibut helps me to open up again (along with MDing) to have breadth again and to counter that contraction.
If you can try this breathing exercise (very similar to wim hof) once a day
It has helped me to calm down my brain again and get back on the right path
I have symptoms very similar to your. I feel like my brain is on fire many times. I have passed Mensa test in 2013, and I'm quite sure I wouldn't be able to do it again. I often feel head pressure, confusion, or I have a feeling that I'm going crazy. The things that helped my with this is Klonopin, but I stopped that because I didn't wanted to try to change something and it made my symptoms worse, but I'm still off it hoping it will get better.
I also don't have PEM that bad, more general malaise, and it more feels like the disease is affecting my brain than my body. I also was into music production before I got ill, and I really enjoyed playing and making music. Now, it's like I lost the ability to enjoy it, and if sometimes feel the love for the music again, if I start dancing or nodding my had and moving along with music I quickly loose the feeling again and become tired with lots off neurological pain trough out my body.
I noticed that cold environment helps a lot with the "brain on fire" thingy. So, I try to always keep my AC on in summer and not to spend to much time in hot environments. At least it helps my symptoms in the short term, until hopefully I find the real solution. And I actually think that being in cold actually decreases some kind of brain inflammation that I have and even slows down the deterioration in the long run.
I'm wondering do you also find that heat increases your symptoms since, your symptoms sound a lot like mine?
Hi @chaki90, your situation does sound a lot like mine I'm sorry to hear. And it makes it even more worse being once a bright, skilled, academic person before losing it all to an unknown disease.
Some of your symptoms still sound quite different from mine though, like the confusion you mention. In my case, I still feel like the same person I was before, just that my brain is getting too slow to process much anymore. I reckon my brain is possibly getting deprived of oxygen or some vital nutrient it needs to function, causing it to slowly wear down and degrade over the years. And I'm thinking it could well still be a thyroid condition I have as doctors have only been checking my TSH the entire time.
The brain issues you speak of sound like they could be related to some sort of neurotransmitter imbalance perhaps, rather than the brain degrading itself. The fact that your emotions and sense of enjoyment arn't lost completely and still have moments where they come back is a good sign at least. It sounds like whatever is causing your emotions to blunt is holding your brain in this state and could be treatable. Hopefully you manage to find something that helps.
I haven't found that heat increases my symptoms at all, or cold for that matter. All my symptoms seem to just be permenant, 24/7 and just slowly worsen with time.
Yes, whether it's a neurochemical imbalance, or cerebral mitochondria linking up, or some other factor, it is quickly reversible. Temporary remissions show that it can switch state over the space of minutes, from full ME to full health, so it definitely is not long-term damage. We just need to figure out how to reliably switch us back to normal function and keep us there.
I have emailed and messaged patients on other forums and Facebook who have symptoms similar to mine and they have had no luck either it seems, despite more tests and investigations being done than in my case. It does seem to be something very rare I have, although probably more straightforward than anything like ME/CFS or fibro, and likely treatable in some way.
Currently I live with my mum who is also unable to work due to health problems. Both of us have just barely have enough money to pay the bills now. I was about go to university before suddenly becoming ill, and now I have no chance of getting a job or doing anything with my life now, all my prospects are gone for the time being. The fact I have this illness on top of having Asperger's syndrome makes things even more difficult, and makes some things seem impossible now.
I'm a musician and still play sometimes with bands but it's becoming hard work for me now with this condition . I need my bandmates to transport my equipment and set it up on the stage for me. And for me, it's simply a matter of showing up and getting the job done. I'm always having people at gigs congratulating me and wishing me luck on my future career, often calling me names like "Rick Wakeman", etc which depresses me so much as I feel like I have no future now and others have no idea of the pain I'm really in. Nonetheless, I'm still glad to be out doing something that gives my life some sort of meaning and purpose while I still can.
In the meantime I will continue trying anything I can and continue seeking help from others. It is not selfish at all to reach out and ask others for help, especially when you're in a constant state of suffering all the time with an illness and they can help you in some way.
Have you looked into: heavy metal poisoning, cirs (chronic inflammatory response syndrome), or lyme? Cirs can be triggered by mold exposure and cause a lot of crazy symptoms. I think after 7 years of no answers I have narrowed it down to these 3 possible causes. I have awful neurological symptoms. Something worth looking into.
My symptoms seem to be getting to this stage too. At first it was heavy leg / difficulty staying on feet. Then fatigue and fatigue spells. Now, cognition (reading/concentrating in particular, socialising), brain pain and yes "brain on fire" if I push it, or jaw pain. Leads me to think it was a brain thing all along. I have always had depression/anxiety so maybe there was some damage done in that
CSF leaks, CCI/AAI are a booming thing on Facebook groups. I'm keeping an eye on them. And of course, Jen Brea made it famous. I think worth looking into