Advice on a crash that's lasting weeks??

[Singout]

Hi, everyone: sorry if this is a question everyone knows the answer to but me...

I've had ME/CFS for 5 years, but have been *very* lucky to have had a very mild form (part time work and greatly reduced activities for the first 3 years, much more active for the last 2 years). I think I've been in denial about what could happen if I overdid it.

Now in the wake of an unbelievably stressful 4 months (severe depression/loneliness after moving to a new city, anxiety, leaving my good job to move back to my old city unemployed, finding a new place to live...) I'm in week 4 of a crash. I've never experienced this since the 4 weeks in year 1 when I first was told my recurring flu might be ME/CFS. (Previous crashes were all 1-4 days, and strangely only after emotional stress, not physical exertion).

In addition to the old symptoms (fatigue, aching finger joints, sore throat, feverish) I'm really lightheaded all the time (OI?) with pins and needles in my calves and a feeling that my breathing is a bit restricted.

I know there's no single answer, but any advice would help--I have to move in 5 weeks and am terrified that this is the "new normal" and not a crash I'll recover from. I'm constantly worrying and self-blaming, even though I'm trying to accept it, meditate, etc. I'm also single, which is making it much harder to get through it.

I've been resting a *lot* in bed with no stimulation, drinking lots of water with some salt and lemon juice in the mornings (electrolytes?), trying to sleep well, and eating healthy food. Any other advice/experience?

I'm particularly interested in opinions re no stimulation vs radio (to distract me from the worrying) and lying down vs sitting up looking out the window, etc. (Lying down feels much better but might make the lightheadedness worse?) I also have a prescription for sleeping pills but the sideffects are supposedly daytime drowsiness and lightheadedness, so I'm not sure if that's a good idea...

Thanks so much!

 

[Ema]

Oh, gosh, if ONLY we all had the answer to this! Unfortunately, I think it is a bit different for all of us.

Since you say you've been under a lot of stress lately, I have to wonder about your adrenal function.

Have you considered a saliva cortisol test?

Sea salt is very helpful, as can the B vits and Vit C for adrenals. Some herbal formulas can also be helpful but it is really best to see what is going on before trying too many things.

I have a hard time with TV when I feel overstimulated but do OK with things like podcasts and audiobooks. I think it is better to distract yourself a bit than sit there and stew.

When I have to lie down a lot, I try very hard to also spend a few minutes of each hour sitting up. I do think that dizziness can worsen if one is not upright at all but it is a difficult balance to strike for sure when feeling crap.

Do you have a BP monitor?

Ema

 

[Seven7]

An IV or The one thing that works for me is to drink one pedialyte a day (through out the day) and about day 3 I can see the difference.

I also use the vitamine powder from fatigue to fantastic about 1.5 month I am out of the hole, month 3 back to mostly normal.

This are my go to tools, might not work for others.

 

[Singout]

An IV or The one thing that works for me is to drink one pedialyte a day (through out the day) and about day 3 I can see the difference.

I also use the vitamine powder from fatigue to fantastic about 1.5 month I am out of the hole, month 3 back to mostly normal.

This are my go to tools, might not work for others.

 

[Singout]

Thanks, Ema and Inester! Yes, I'm seeing a naturopath re adrenal (started a few months before the crash) but no help so far. We did a cortisol test that says my adrenals are really low. I've downloaded an audiobook, will up the vitamin C, and am looking into electrolytes.

 

[SOC]

@Singout~ I think we all wish we knew the answer to that question.

My daughter, when she had relatively mild ME/CFS, could shorten her crashes using the Pall Protocol supplements. I don't know why it worked for her, but it didn't have the same effect for me. I wasn't largely functional with occasional crashes at that point, though. I was continuously ill.

My best luck with crashes is lots of rest, which you are doing already. I'm finding I don't crash as much or as badly since I've been treating for low blood volume and POTS. For me that means Florinef, verapamil, and 3 liters (!) of electrolyte fluid daily. You might be able to tell if you have low blood volume by sitting upright for about 10 mins and then taking your BP. If your pulse pressure (systolic - diastolic) is around 30 or less, it's likely you have low blood volume. It seems like many of us feel better with a PP in the high 30's.

If you have low blood volume, you'll feel a lot better if you fluid load right before bed -- about 750-1000 ml of electrolyte water immediately before bed and about the same as soon as you wake up. That helps your body compensate (somewhat) for overnight dehydration that often occurs with low blood volume.

Hope you're feeling better soon!

 

[rosie26]

Have you any ME friends @Singout . I have found it fantastic in helping me get through this illness. I talk by phone when up to it and meet them for coffee when able to.

Being able to talk to someone who understands what living with ME is like is helpful for mental/emotional support.
Get in touch with a local support group in your area if you think it would help you. x

 

[sarahj]

hi,
I could not tolerate gatorade or electrolyte drinks. I drink at least 16 oz. a day of coconut water. nature's gatorade.
I buy it by the case on amazon and it gets delivered and is cheaper then buying at the store.
there are some that taste better then others. I prefer the nirvana brand.
but it has all the electrolytes you need without the chemicals you don't.
good luck

 

[SOC]

hi,
I could not tolerate gatorade or electrolyte drinks. I drink at least 16 oz. a day of coconut water. nature's gatorade.
I but by the case on amazon and it gets delivered and is cheaper then buying at the store.
there are some that taste better then others. I prefer the nirvana brand.
but it has all the electrolytes you need without the chemicals you don't.
good luck

I can't tolerate Gatorade, pedialyte, or other sports drinks because they have either way too much sugar or aspartame, which I don't tolerate. Dr Sol, the exercise physiologist at the Neuro-Immune Institute at NOVA Southeastern, suggested ElectroMix, which works well for me. It's relatively cheap, has no sugar (but does have a small amount of stevia), and no sodium. I get enough sodium in my diet, so that's not something I want in my electrolyte drink.

 

[sarahj]

that's interesting. it was dr. klimas at nova that recommended the coconut water.
I tend to totally avoid artificial sweeteners.

 

[SOC]

that's interesting. it was dr. klimas at nova that recommended the coconut water.
I tend to totally avoid artificial sweeteners.

Me, too. For some reason all artificial sweeteners are problematic for me, although aspartame is the worst. Stevia is not an artificial sweetener.

My cardio believes it's better to put a balanced electrolyte mix in all the fluid you drink -- assuming you are a low blood volume patient who drinks more than the usual amount of water for a healthy person. He says that keeps your electrolytes stable because you take in the proper amount relative to the amount you wash out via urine. His belief, as I understand it, is that taking the electrolytes separately from your fluid intake doesn't work as well because it is not directly correlated to the water going through your system. That is, if one day you drink more fluid you need more electrolytes, while another day if you drink less you need less electrolytes. Taking the same amount of electrolytes every day can help, but is a crude approach to a complex problem. That's just one guy's thinking, though. Clearly, there's no single, established best practice for this.

Like everything else with this blasted illness, we each have to figure out what works best for us as individuals and go with that.

 

[xchocoholic]

You got some great advice already but I wanted to add that you may want to get
checked for new pathogens. I thought I
was getting worse and it turned out I had h pylori and parasites. I was shocked.

It could be anything tho. I misread a kidney infection last year too because my symptoms were subtle, mostly fatigue, until I ended up in the ER in severe pain.

tc ... x

 

[Snowdrop]

Hi Singout

I'm sorry to hear that you are in a crash.

I don't have much to offer since I cannot afford or have the energy to pursue many treatment avenues.

But I do have one suggestion. You mentioned you have a sleeping pill Rx. If you think the side effects might be too much you could try cutting the pill in half and taking a smaller dose. Along with some magnesium (I use New Roots Mg bisglycinate when I can) this might do the trick for a good night sleep.

Best wishes on getting some relief,
SD

 

[Bob]

I had a major crash a few months ago, which I'm still dealing with. I recommend reducing physical activities to an absolute minimum, and sitting it out, if possible. That's what I've done. It's been an excruciatingly slow process, and I was really worried to begin with that I wouldn't improve. But I noticed an improvement had begun after about 3 months, and I definitely have improved now, so that I can now get out of the house for short walks. When the crash hit me, I reduced my physical activities to an absolute minimum but allowed myself to continue mental activities, such as using the computer, watching TV and reading. But my mental and physical symptoms seem to be separated, to a degree, so that when my brain is over-exerted, it doesn't seem to affect my body very much. Also, I can rest my over-exerted brain, and it will improve over a day or two. Some people seem to be more adversely affected by mental exertion, and need to have more mental rest. We all have our own way of dealing with things, but I recommend minimum exertion until an improvement starts to kick in, and then a strict pacing regime with an emphasis on under-activity.