Chronic illness led me here. Feeling hopeless.

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chronicallyill

Messages
19
Hi everyone,

I have had a mystery illness that surfaced during a pregnancy 12 years ago. I put it down to shifting hormones, but eventually lost the baby. Before finding out I was pregnant I had dental work done. I even had the root canal tooth removed after thinking it was the cause of my problem. It made no difference.

Over the years I have had so many symptoms, but the last year or so things have semed even worse. My most bothersome symptoms are 24/7 brain fog (feels like I am drugged), painful migraines, nausea, temp disregulation, a swaying sensation like I am on a boat and feel wobbly, light headedness, pressure in head but it also feels like when you're on a plane, dry eyes/mouth, tiredness, constipation, neck pain, light senstivity, terrible stomach problems, stabbing all over body, chest pain that comes and goes, severe cramps, pins and needles, face flushing, small itchy bumps that come up and then disappear, and really sore and painful joints. Random pitching sensations in the back as well.

I have always been strapped for money and haven't found out the cause. I did lyme and mold treatment with no difference in symptoms and I just had emergency gallbladder surgery. I really hoped this would finally fix SOME of my issues, but since having it out I feel even worse.

My ER visit also showed high glucose, my urine has +1 protein and moderate blood (not to the naked eye, but under microscope). I also had some off bloodwork. My neutrophils and platelets were high, but the next day they were normal again but the rbc was low, though the day before the test was normal.

I am at my wits end. The migraines and head pressure make it so hard to function and just make me feel so bad all the time. I can barely focus and always feel like I am running on empty. This illness has progressed and I just can't see myself getting any better now. It feels too far gone. To make matters worse I have no insurance and the hospital just sent me a 50k bill.

Has anyone else had something similar?
 
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hapl808

Senior Member
Messages
2,446
A lot of similar symptoms - but sadly I don't have much to offer. Mostly things started with fatigue, crashes, GI problems, etc. Over the years it worsened into muscular problems, constant brain fog and headaches, worse temperature dysregulation, constant tachycardia, and so forth.

Also have done the various things - diet, mold treatment, lyme stuff, etc.

Sorry you're experiencing it. Sorry I don't have suggestions.
 
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2Cor.12:19

Senior Member
Messages
294
I am so sorry for your loss and for all of your health problems. I’ve had many of the symptoms you’ve listed over the years. As you probably already know ME/CFS has no definitive test and no cure yet. It’s diagnosed by symptoms and a process of elimination.
Have you ever had a doctor suggest ME/CFS?
It’s not uncommon to go for years before getting a diagnosis.
Wishing you all the best. I hope you can find a doctor that will be able to diagnose you properly.
 
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kushami

Senior Member
Messages
760
@chronicallyill, welcome, and I'm very sorry to hear of your illness. It sounds as though you are having autonomic symptoms, among others. This isn't necessarily an answer, because the autonomic nervous system can go wrong in itself but can also be thrown off by other systems going wrong.

Have you had testing for orthostatic intolerance? There is a simple test you can do at home, although please be cautious doing this soon after surgery and in general if you are very unwell:
https://batemanhornecenter.org/nasa-10-minute-lean-test-2/

I understand you probably can't seek medical help right now, but other things that come to mind are autoimmune problems, MCAS and Sjogren's syndrome.

Autonomic and autoimmune conditions are both known to be triggered by pregnancy (although they are not the only areas of illness that have this trigger).

Just a very simple suggestion of a couple of things to try: a plain electrolyte drink, and sitting or lying with your feet elevated. If either of those help, you may have orthostatic intolerance or low blood pressure (or both).

Edit: Forgot to say that all of this can potentially happen in conjunction with ME/CFS. But seeking treatment for these aspects, while definitely not easy, can be easier than seeking treatment for ME/CFS as the answer you often get on that path is that "there is no treatment". So breaking things up can be a way to tackle it.
 
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linusbert

linusbert

Senior Member
Messages
1,758
hello Dear, sorry this happend to you.

what you describe could be a thiamine deficiency or respond to high dose thiamin preferable as benfotiamine or allitiamine.
though those should be done carefully and with potassium and phosphor.
 
linusbert

linusbert

Senior Member
Messages
1,758
chronicallyill said:
. The migraines and head pressure make it so hard to function and just make me feel so bad all the time.
Click to expand...
the head pressure thing could be a neck muscle issue. also potential source for migraine.
there are practices on youtube, check those out.
also have a look how you hold your head, is it in a bent neck position, like looking halfway down? if i do this for too long i get head pressure and visual problems. doctor calls it eye migraines.

it could also be a allergic problem. there is tight space in the head, something swelling up , can put pressure on some nerves or compress some veins.
for that you might wanna try quercetin , maybe vitamin D and C
 
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xploit316

Senior Member
Messages
181
linusbert said:
also have a look how you hold your head, is it in a bent neck position, like looking halfway down? if i do this for too long i get head pressure and visual problems. doctor calls it eye migraines.
Click to expand...
I have this. Any tips that have helped @linusbert ? Started a few days ago, its also gotten super hot outside where I live.
 
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