Restless/wired for months

[Alexandra90]

I have been restless/wired on and off since my "big crash" almost 1,5 year ago. But this past months this has gotten really bad, and I'm in a position where I most days can't rest nor be active, and this state provokes horrible anxiety and dark thoughts. I always been a restless soul even before getting sick. I have a lot of anxiety because of all my symptoms. My insomnia is horrible - last night it took me 6 hours (!) to get to sleep and then I woke up after 4 hours. I feel so stressed all the time.

I'm going crazy with worry and this restlessness. I'm afraid of getting more sick, afraid of not getting better. I tried so many ADs but can't tolerate them. I will try Valdoxan next but I'm skeptical because when being this ill you don't need energy or motivation, which ADs tend to give you. Most ADs makes me even more restless and wired. I need to be able to relax and enjoy small things again I think. TV was my saver before but now I can't handle the visional overload.

I miss my horses so much it's hurts everyday. In periods I suppress the grief, pretending it is okey. But as soon as I see a horse I will get reminded. I just can't accept a life without them. Living like this is so depressing. Not having physical energy nor be able to watch the world because of visional overload (light sensitivty, inability to handle movements etc). I wake upp hoping there is not a beautiful day outside since I can't take part in it when having bad days. Just writing it depresses me.

I'm desperate. I have to be able to rest.

 

[caledonia]

What is your pysch med history? Literally - can you list every drug you've taken, the dose and the dates taken - when it was started, when it was discontinued and the reason why. Did you taper off these drugs? Are you taking anything now?

When did the extra restlessness start?

You may have akathisia, which can happen any time you start, stop or change the dose of the certain psych drugs, especially SSRIs. If so, I have had this and can give you some ideas of what helps.

Also, can explain a little more about what is your "big crash"? Do you mean when you developed ME or CFS or something else?

 

[confetti11]

I just went over this with my CFS doctor. He thinks it could be neurotransmitter imbalance, particularly with dopamine. He's having me increase tyrosine to start.

 

[Vojta]

I can totally relate about this. It seems to be all from low energy status of some brain structures. This is from prof. Naviaux slides about ME:
"“It takes more energy to relax than to react.” – Anxiety, restlessness, irritability, fear of change, OCD behaviors, sensory & chemical hypersensitivities, meltdowns, and bouts of hyperactivity, and even seizures, are hallmarks of a low energy state"
https://www.omf.ngo/wp-content/uploads/2017/05/Naviaux-CFS-For-CDC-Talk-5-25-17v3s-2.pdf

I wouldn't be able to sleep at all if I didn't take Lyrica at the moment. It gives me few hours of sleep. But I hope I will be able to try some other things.

Did you try any sleeping meds /hypnotics like Zolpidem, Zopiclon/ Ambien?

Also marijuana helps with relaxing and sleeping. Did you try it? I could finally sleep when I took it and ovisously felt relaxed (and much more tired) but I thought I was getting worse long-term from it so I stopped.

If it's not availible to you it's also worth to try CBD oil. It helps some people with calming down, anxiety, pain and sleeping. It has anti-neuroinflammation properties. And is generally safe and legal.

(Also be safe with Valdoxan. Your liver has to be monitored regulary because it can be hepatotoxic. Warning was issued about it here.)

 

[eric_gladiator]

I do not know if I asked you before, are you taking anything for the symptoms? Any supplement?

 

[Alexandra90]

I do not know if I asked you before, are you taking anything for the symptoms? Any supplement?

No supplements at the moment. Tried 5-htp, b12 tablets, b-complex, d-vitamin, c-vitamin, Niacinmide, e-vitamin and different magnesiums. Also CBD-oil and Lithium orotate. Only Lithium was beneficial!

Have ordered BCAA and Glutamine.

 

[Alexandra90]

Could abilify be worth trying in a really low dose?
I don't like taking an antipsychotic, I'm very respectful because of possible side effects, but I'm desperate.

 

[Timaca]

One thing that really helped me with my sleep and with my overall CFS symptoms was going on an elimination diet. It seems I can't eat most grains (only rice), animal protein (except for very fresh fish), some fruits (cherries, berries) and I'm wary of stone fruits (peaches, plums etc), nuts, seeds, eggs. I don't eat a lot of nightshade foods (potatoes, tomatoes, peppers--although I am okay with small amounts of chili powder and jalapeno in a food).

If I eat a food that doesn't work for me I can have huge problems. Here's what happened to me when I ate a very small amounts of oats.

Wishing you answers,

 

[edawg81]

The wired and feverish symptoms were my worst symptoms from this illness. I have had really bad insomnia and early waking since I got sick. The thing that has helped this the most was a combination of doxepin liquid and klonopin at night. This helped me get semi-regular sleep. But I feel like this combination would have caused me to sleep for days pre-illness now it just takes the edge off and gets me a few hours of sleep I otherwise would have not gotten. That said it has lost some of its effectiveness over time, but with sleep being a priority it was important to calm down enough to rest. I hope you get some relief soon, it can be overwhelming being wired 24/7.

 

[PracticingAcceptance]

So glad you raised this @Alexandra90 . Right now I feel afraid of relaxing into sleep. I don't think it's the same thing as you, but I do know how it feels to be too anxious to sleep and too tired to do anything - trapped between states.

"“It takes more energy to relax than to react.”

That's how it feels for me right now. I'm struggling with coming to terms with this illness, and the stress is making me unable to relax right now... but I know if I don't rest now, it will be worse tomorrow, so all I'm doing is working on calming down enough to sleep. I think me not letting myself sleep is a bit about being in denial that I'm not well, subconsciously. Maybe now I've admitted that, I'll be able to rest...

I am considering trying weed on occasions like this, just a bit. I don't want to be a stoner but maybe a tiny dose would help me let go a bit more. I would try a bit of alcohol but that makes me very very unwell. However I don't have access to weed at all, and I have no idea how to go about that!

So sorry you feel this way. It will pass.