venting.

[badnights]

I have zero energy and have hunkered down into just-live-through-it mode. I want to describe what's happening but I keep getting distracted. By what?

eg. I was notified Monday I was to go on a job July 2-11 because my colleague got a blood clot after minor knee surgery. I spent the next two days mostly arranging that, then Wed at 5 PM I got a call from a surgeon coordinator in Edmonton, telling me there was an opening for my ACL reconstruction (also knee surgery) on July 11, and I would need a pre-op --- finding the date of the pre-op (July 8 ), cancelling the job, re-initiating the job for 4 days instead of 7 - then my friend leaves town and I had promised to watch his house and aging dog before I knew any of this - about the job or the surgery. And my WED acted up that day but I still had to come here to his house, and haul all my vegetables for my miserable gluten-free, dairy-free, veg-heavy diet, and my truck has a flat, and I'm sick in a strange house WAAAAH

OK I 'm feeling better, I managed to say some of it.

This sick feeling - it usually lasts 2-3 days & although it often heralds my period, sometimes there seems to be no reason for it. Does anyone else get this? I have been trying to define how it is different from normal WED... usually, I don't feel sick and weak when I'm experiencing the WED sensations in my arms and legs. But at these sick times, I can still feel the sensations when I'm walking, even after I've been walking a long time, and the walking barely reduces them. They sometimes go away while I'm doing heavier exercise, but I rarely have the energy or will to force myself there, since I feel sick, weak, like my body is draining away, and it's hard to think, not a brain fog but like an incessant distraction prevents focused thought, and all the while these creepy-yukkies are insinuating themselves into my bones and re-defining them, and I am weak and small.

and its different from the withdrwal kind of WED too, opioid withdrawal which I sometimes get if I don't remember my mid-day 3mg pill of hydromorphone. That involves a cold-sweaty feeling and nausea that are absent in both normal WED and sick WED. Does anyone else have these subtypes?

[EeFall]

Wow! I am having a time of it tonight also but yours sounds way worse. Sorry you are having so many things happen at the same time, that always seems to make WED worse. It is bad enough that we have severe RLS but to have everything else happening at same time is a trail for sure. Hang in there and know things will get better.

"incessant distraction prevents focused thought" I do get that way sometimes, sort of a hyper-fog. It is not fun. Sometimes I get in a rut when having symptoms and I keep thinking about something that I have no reason to think about, yet I think about it over and over. It is like the brain gets stuck and needs to reboot.

Take care. I hope you are feeling better soon, and that you can sleep.

[cornelia]

Yes, it happens to me all the time. I often think it is because of a stress factor, like you had to do many things all of a sudden and have asked too much of yourself, even if you don't think so and also because it gave you some anxiety which is a stress factor too. But I may be wrong. I sometimes think we shouldn't ask ourselves why, which is a natural habit to do, because RLS patients are just complex cases with the difficult disease itself and the psychological factors.
Not much of a help, sorry.
Corrie

[badnights]

it's always helpful to hear other people respond!
"hyper-fog" almost captures it. I don't get the obsession or stuck-on-a-thought part, but definitely can;t keep a single thought for long.

After I re-read my post, I can see that I have been under some stress. I would like to believe those things are easy to deal with, but I think not if you have WED; then your threshold gets way lower. Also, some situations have invisible thought-processes associated with them that make them more stressful, like worrying what people will think of me if I don't go on the job, and if I do go on it, and so on. And where will I stay post-surgery in Edmonton since I can't fly for two weeks, if I drive will I be able to drive back (it's my right knee being operated on), if I drive, I will have to drive down before the job because the job takes me to points east of Edmonton... and so on. It's complicated and unresolved, and it must be some quantity or quality of those thoughts that sends the stress level too high.

I was doing so well, too, on this diet. But today has been bearable so far. Of course, I've only been up for an hour lol.

[Polar Bear]

badnights, I feel as if your post is shouting.... too much!!
Your body and your brain are being called upon to do stuff, sort stuff, think about stuff, and at the same time you are suffering.... but trying to carry on and do more, do more, because you feel you should. Crossing all those bridges that just 'might' need sorting.... thinking of all the 'what ifs'. Trying to prioritize and everything is calling 'me first'.
The system of one thing at a time isn't anywhere on the horizon.

I hope you have a better day.

[ViewsAskew]

Beth, it sounds very auto-immune. Not saying it is, of course. From fibro-fog to brain-fog, people with AIs and some other chronic diseases report similar symptoms frequently.

My best friend, husband, and I all have a similar thing. My BFFs have been the worst of the three of us, but as her lupus has been under pretty good control in the past year, she's has many fewer. Hubby's come and go and he can have long periods without them, then periods where it happens frequently. For me, I usually feel physically low as well as mentally and emotionally - draggy. I can't make decisions, I am tired in a bone weary way, and I often find I have swollen glands in my neck or armpits, so I KNOW something is happening in my body. My best friend has lupus and three other AIs (one just identified a few weeks ago to add to the others - lucky her, NOT), and hubby has one active AI, though he's had three when the celiac was flaring. I have none. Hubby and I both have many active trigger points that I am almost positive that this is related - simply because our bodies are never pain free.

Like you, I find that diet is extremely important. When I eat "cleaner" I find I have fewer of these. I've also found that they've decreased as I've approached the age of menopause. Over the past few years, I haven't been able to tell them apart from other emotional upheavals related to medications, however. I think some of us are extremely susceptible to what these drugs and the WED chemistry does to us - and in ways that are hard to describe.

I have no idea if what I feel is the same as what you feel or what my BFF or hubby feel! Is it a generic bodily reaction to stuff happening in the body? Is it something completely different and because it's weird we cannot explain it? Is it related to inflammation or pain? No clue.

[badnights]

Sorry Ann I am only reading your post now; you know how I am falling behind on things. I definitely think "sick WED" is something different from the usual WED.

I don't have an auto-immune disease that I know of, unless I am actually celiac. The blood test was negative but I had stopped gluten for a while before I took it, which may have created a false negative. I have an aunt with celiac; and I clearly clearly can't eat gluten. I'm also off dairy, for just-as-clear reasons, but I am curious to know if it's a casein or lactose intolerance; naturally I am hoping it's the latter, but I haven't tested that yet. I am not looking forward to the days of gut issues if it turns out to be casein, which my doctor suggests it probably is, given the similarity between gluten and casein.

I wonder if small-intestinal bacterial overgrowths might not cause the "sick WED" symptoms? Apparently the byproducts made by these unfriendly bacteria as they go about their daily lives can be toxic, can cause leaky gut syndrome, and then leak into our bloodstreams, from whence they effect neurological damage, skin problems, organ problems, etc. Brain fog and a general feeling of malaise would seem to be the logical result.

Apparently I have overgrowths of bad bacteria, yeast, and even of good bacteria. None of these critters belong in my small intestine, but I have them all in super-abundance. Yuk. And they might cause WED (which is, after all, a neurological disorder).

On the other hand, WED might cause them. I read that SIBO can develop when gut motility is lower than it should be, and lowered gut motility can be a side effect of neurological disorders. I would guess that I have lowered gut motility - I can't swallow properly - but which came first, WED or low motility? So who knows.

Still, I want to get rid of the critters, and there is no sure way. Usually, they come back. The typical method is to take a devastatingly strong antibiotic along with an enzyme that destroys biofilms (think of the slime associated with algae growing on rocks - that's a biofilm). The antibiotic won't, apparently, enter your bloodstream (even if I have leaky gut????) so it kills only the critters in your gut. Then you take probiotic pills to re-populate.

A problem is that they don't really know all the critters you're supposed to have in your gut, so the pro-biotic pills will have only the known ones, and are undoubtedly missing others that are also critical. So the other option is to clean the poo out your intestines, kill the bugs with the antibiotic and enzyme, and then insert someone else's poo into your intestine. Someone who is healthy and therefore has a healthy population of gut microbes. And then hope like hell that what's healthy for the poo donor is also healthy for you, and that you don't throw up every time you think about it. And that it works.

But apparently it's not mainstream, it's still in the research stage, so perhaps not easy to arrange.

These are the options I'm looking at. It's hard to decide to do something so drastic without any clear evidence that SIBO is causing my main problem, which is WED.

Meanwhile, I'll keep eating healthy, and low -carb, to try to starve those bad bacteria (which like to eat carbs).

[ViewsAskew]

There was an excellent piece on US public radio about a year or so ago about a guy who had some issue - terrible allergies, I think. He couldn't do anything. He did a bunch of research and finally decided to go to southeast Asia and walk barefoot around outhouses to acquire pinworms (I think it was pinworms - some type of small intestinal worm). It cured him. Since then, he has started taking the worms from his stool, cleaning them, and selling them to others. Some doctors think he's irresponsible, but a few doctors are studying it and are cautiously optimistic. They think we should wait for more studies, but I can see how someone with devastating asthma, allergies, and many other issues that are claimed to be helped, would want to do it now.

It sounded so bizarre, but in studies, there is this strong symbiotic relationship between them and our guts that goes back thousands of years. Some people hypothesize that they were what kept people healthier and that when we became more hygienic, we lost them and all they do for us.

I have no idea if they could handle SIBO. It could be interesting to research.

[EeFall]

I remember when I was a youngster living in Southern California that they found a companies diet capsule, which was doing a fantastic job to take off the pounds for those taking it, had tapeworms within Just reminded me of that.

Instead of taking no action wouldn't taking some "good bacteria" probiotics help? We took them but after awhile we didn't seem to need them anymore and the cost was prohibitive so we stopped.