Things Getting Really Bad

[Sheila1366]

Haven't been on the board in a long time. Things have been very stressful at home.

My health has gotten so bad. Gastroparesis is getting worse and I ma having the worst time now with extreme fatigue and near fainting all the time. Today has to take my daughter to the dr. ( she goes to Duke all the time ), husband drove us. And I just knew I was going to end up in the ER. I could barely keep my head up, was so very , very weak. I have been dehydrated and just finished another round of antibiotics from a bladder infection.

I am set to go to Vanderbilt in July to the autonomic center. Had to change my appt. from Jan. of this year due to my youngest daughter being very sick.

Can anyone tell me about the fatigue you have and the fainting spells? I feel faint all the time. I am barely able to get in fluids now. I have hypoglycemia also and it has been running very low.

My GI dr. and pain dr. are sending me back to my motility dr. for help. They are at a loss. With the pain and nausea getting worse, I am losing weight fast and feeling so very, very bad.

Scared of how bad I feel and how little the dr.'s know what to do with me. If I even went to the ER , what would they do. I went to the ER a few months ago feeling this bad and they did nothing but give me fluids and send me home. I did have an abnormal EKG in the ER and had to have an very exspensive test to see if I had some blockages.

Hope I have made some sense. Sorry, I am very weak and not able to do focus very well.

[puppylove]

I don't faint, so I don't really have anything to say about that but I'm really sorry you are feeling so horrible . (Hugs).

[NaomiSpellman]

Sorry you are feeling so bad. I have fainted from both hypoglycemia and from orthostatic hypotension, and learned how to tell the difference. The former was scarey because I blacked out for what seemed like a long time (they told me it was maybe 30 seconds), and though I could hear the people around me I could not move or see. It felt like I died; I couldn't come out of it. The OI faints were quick - I came to immediately upon falling on the ground, as soon as oxygen returned to my brain. I have been able to get both under control through careful constant regulation (diet, sleep, etc). But the sensations of faint from both sources are getting stronger now as my symptoms worsen. I hope I don't start falling again.

Fatigue is also worsening. Any "big" day requires a day of bed rest following.

Try to limit your stress as it is a big factor.

I have had success treating: lack of appetite/nausea; joint pain and inflammation (including acute abdominal pain, swelling, and inflammation from IBS); and acute anxiety with medical marijuana. I am off it now though, and I am losing 5 pounds per week. The medicine is also helpful as an analgesic - I am able to exercise much longer, pain free and without panicking from fear of fainting/falling.

So sorry this is so hard to manage. I wish there were an ideal solution. Sometimes just when I feel I've reached a plateau, I suddenly slip down several rungs of the ladder.

[Katybug]

My fatigue is actually bad enough to be diagnosed as daytime hypersomnia. My EDS doc is sending me to a sleep doc because the original sleep doc that evaluated my sleep studies, made no mention of my totally screwed up sleep architecture. He wanted me to be depressed ...I am not depressed. So I shrugged him off. My EDS doc said I should, at night, be getting 50% storative REM sleep. I only get 20%. She's hoping fixing my nighttime sleep patterns might help my daytime fatigue. When a wave of fatigue hits me, I literally feel like I'm going to collapse if I don't take a nap (it's different that presyncope when I get sweats and dizzy). I just feel like my legs won't hold me anymore and either I will let my body lay down or it will do it against my will anyway. When I'm presyncopal, I sweat, am dizzy, have visual disturbances, tinnitus gets very loud, I have trouble focusing on anything around me like all I can do is just concentrate on surviving and staying conscious. It's like I tune out everything around me as a survival instinct. I have only passed out a couple of times because I usually lay down (no matter where I am) before I actually pass out.

[Sheila1366]

I have checked my blood sugar today and it is not low but I feel so faint all the time. I feel pressure in my ears and hearing gets worse. I am getting much worse. Losing weight fast. Can't see my motility dr. til Sept. and Vanderbilt is end of July. I am very scared. I never thought I would get to this point. I feel like I am not going to make it much longer.

[angelloz]

I will write alonger post tomorrow but for now wanted to say hang in there. You have some appointments on board! Ihave extreme weight loss too and it is very scary.

Keep eating and drinking as much as possible...potatoes and rice!!

[ramakentesh]

are you on medication?

[davecom]

Sheila, did the fluids in the ER help you? If so drink electrolytes as much as you can. Force yourself to drink two liters of Gatorade and see if it helps. I am so sorry for how bad you are feeling. Many of us can relate.

If you feel your life is in immediate danger, please do go to the ER. Do you have a pulse ox and blood pressure machine so you can check your vitals at home?

I hope you get through this extremely difficult period and find some help. Sending positive wishes your way.

[spinner]

Obviously we cant give medical advice here, but i'll share some things that have helped me. Ive been in your shoes getting long term flares where i could barely function. These are some things I discovered:

1. NEVER estimate the impact that another medical condtion can have. For example, CELIAC disease which is hard to diagnose is VERY common for the simple fact that our diets are much more wheat oriented now (wheat is a grass) and most people cannot handle the grass. It can create a food allergy in your body that mimics just about anything.

2. Make sure youre tested for lyme and parasites.

3. Be VERY careful with your diet. Learn what you can tolerate. Many of us are highly allergic to eggs, peanuts, milk, etc.

4. Endocrinology is an inexact science and hormones can lay you low. The adrenals and thyroid in particular, but for example cortisol levels are extremely important in your immune system.

5. Secreted chemicals can make you deathly ill such as adrenaline etc.

6. Serotonin low levels can make you very sick.

7. Drug combinations can weaknen you.

8. Sleep disturbances are under estimated. Have you had a sleep test? Are you going into enough REM? Are you snoring? Do you have apnea? That could exhaust you right there.

9. Vitamins and amino acids deficiencies can make you bed ridden. Commons ones like folic, b12, d3, and otthers should be researched. Iron is also important, as is magnesium.

10. Hydration obviously, but some people need salt. The salt can be eliminated in some people on a cellular level and theyre a walking electrolyte disaster. Have you tried gatorade? Or Dr. Oz homemade gatorade. Look it up.

Powerade makes a zero cal.

11. For some people excitotoxins is a problem. See dr. cheneys work with fibromyalgia. Doxepin and klonapin help some people with a synapse problem.

12. For some people MSG and aspartame and chemicals and nitrates make them deathly ill.

13. HIstamines can cause anaphylactic type weakness.

14. Do you have amalgams, mercury filings? Toxic metal testing?

15. Environmental allergies?

[spinner]

I forgot to add leaky gut syndrome, permeable intestine, is very common and will ruin your immune system.

If that happens you wont be able to function normally at all.

[looneymom]

Sorry that you feel so bad. Fatigue was one of my son's worst symptoms in the beginning. He still has problems but it is not quite as severe. Something that helped him was a protein shake that contained amino acids. I buy this shake for him at the GNC store. Be sure to keep your fluids up to avoid dehydration.

Spinner made some really good points in the last post. Take care of yourself and hopefully you will feel better soon.