Trending towards fatigue

[dyllanmurphy]

Just thought I'd share.

After a long ride (5+ years) with symptoms which bore a resemblance to hEDS (brain fog, easy injury, reduced strength, agitation at night, poor memory, intracranial pressure), I've taken a turn for the worse.

I took some antibiotics recently, as they previously helped me achieve a remission of symptoms some time ago. This caused a pronounced worsening of my connective tissue symptoms. First, my intracranial pressure got worse. Then, the pressure migrated to the neck instead of the head. Subsequently, the neck/head junction area would become very easily injured, basically CCI symptoms - I had never previously had these symptoms, though my neck started getting more crackly a few years ago.

Fatigue started occurring. The fatigue is correlated to the neck pain and fragility / pressure (one false move and I hear a giant crack with pain) in terms of timing. There are other things which can make the symptoms better or worse. I'll spare you my reading of the tea leaves for each individual factor (unless you're interested in this), but my suspicion is that the antibiotics caused a shift which dysregulated my gut, causing my immune system to go into overdrive, periodically weakening connective tissue. This connective tissue weakness may be causing problems as well, whether it's from mechanical pressure on the spine or compression of some nerve.

I've always thought my symptoms seemed like "CFS without the fatigue", and now it seems that part is coming as well, though I recognize the presentation seems more aligned with some connective issue disorder. The fatigue is not post-exertional, for now.

Thought you might find this interesting.

FYI the major risk factor that kicked everything off I believe was exposure to pesticides.

I plan to do a fecal transplant and see if things improve, but let's see.

 

[Judee]

If you think hEDS/connective tissue disorder, maybe this thread would be helpful to you. https://forums.phoenixrising.me/threads/im-vitamin-c-injections-for-heds-anyone-tried-this.89241/

It's wasn't to me but I've had ME/CFS going back 40+ years with the cell saturating fatigue, brain fog, MCS, IBS, POTS, etc.

I was hoping that would help though because I always feel faint and that was one of the symptoms mentioned on that website there.

I also have the loose ligaments but IF I could ever get back to a chiropractor that usually helps a lot with the pain...not so much with the fatigue though. Oh, well.

Sorry to hear of things getting worse for you though.

 

[hapl808]

I took some antibiotics recently, as they previously helped me achieve a remission of symptoms some time ago. This caused a pronounced worsening of my connective tissue symptoms. First, my intracranial pressure got worse. Then, the pressure migrated to the neck instead of the head. Subsequently, the neck/head junction area would become very easily injured, basically CCI symptoms - I had never previously had these symptoms, though my neck started getting more crackly a few years ago.

I have some of those, but I've had so many symptoms over the years of GI, fatigue, PEM, constant injuries that took a long time to heal, head pain, neck pain, and so forth. Really no idea what's going on, though. Gut definitely seems to be involved, though.

 

[lenora]

Do you have EDS? This is a problem for many with our symptoms. Also, when was the last time you had a full MRI? Top of head to bottom of your spine. You should have it read by all doctors you go to, not just the radiologist. Yours, Lenora

 

[brenda]

FYI the major risk factor that kicked everything off I believe was exposure to pesticides.

Hi Dyllan

I was also poisoned by a massive pesticide exposure, which came after a lifetime of mercury poisoning in my infancy (Pink Disease aka mercury in teething powders). It was not only a one off exposure, but a chronic one when the pesticide was circulated when using the vacuum cleaner.

Within a few short weeks I was taking 12 medications after refusing to use them because of my sensitivity as I was having acute histamine problems and I was too ill to function outside of bed much.

I have come a long way since then and the main reason I believe is that I worked hard to get chemicals out of my life though that took many years to take place to the level it is now. Organic food and inner clothing and bedding, and later water and air filters, with much work with special paints no cosmetics and natural cleaning materials. I also had to get out of a damp home a couple of times. It takes time. There was also a lot of healing from childhood trauma to happen.

I do wish you good luck.

 

[dyllanmurphy]

Do you have EDS? This is a problem for many with our symptoms. Also, when was the last time you had a full MRI? Top of head to bottom of your spine. You should have it read by all doctors you go to, not just the radiologist. Yours, Lenora

I've been to many doctors in the beginning stages of the illness which has kinda soured me on them. It seems like such a hassle to get diagnosed. Especially now that doctors think EDS is a "TikTok illness" where crazed preteens are self diagnosing. I'm sure I could eventually find a helpful doctor but the process is aggravating enough that I avoid it.

I had a cervical spine MRI which showed some mild deterioration since the previous one, but still "normal" according to the doc. Meanwhile my CCI and pseudo tumor symptoms can be absolute hell.

 

[lenora]

Hi @dyllanmurphy.....Yes, a good many of us know what you're talking about when you talk about helpful doctors. I had a gem, but I'm afraid that he passed away. No luck since.....why bother going to a doctor if they think you've made it all up? We also get burnout, but they're up against burnout and insurance cos., no small thing there.

I didn't realize this was a "thing" on TikTok....finally we're taken seriously and then teens steal the attention we haven't been getting. I have no doubt that some may have the illness, but maybe it's will trend downwards in a big hurry.

I think you answered your questions when you mentioned CCI. That can be responsible for so many symptoms. Today I probably wouldn't have brain surgery, but would be diagnosed with CCI instead, although I had severe hydrocephalus due to another problem, Syringomyelia. I had very painful surgery for that....and brain surgery was nothing in comparison.

Anyway, I've had it. No more doctors except my internist and my cardiologist. I'm not a young chick and can't afford to wait around until I find a helpful doctor. The good ones are overwhelmed and I know what's causing what....and if I have to go to the ER once every few yrs., then so be it.

I find that old age brings problems to everyone. It's hard to lose people yet we have no control over that. Just enjoy what you can of life. I love to read, but I think it's time for podcasts, no traveling (well, that's been awhile though), old friends stay in touch, and I'm so glad although our numbers diminish each year. My husband is also a gem, and my daughters believe me. I make myself stay busy and time flies.

I hope you'll feel better and at least know that you are understood, even if it's by us. Yours, Lenora