it's getting worse again :(

[badnights]

I am having permanent symptoms the last couple of weeks. I take my meds scattered thru the day but concentrated at night. They don't cover off the symptoms at peak effectiveness, which is around midnight, but I can go to bed by 2ish; then they're all over me in the morning and get me out of bed while I'm still tired, such a grievous way to be woken up. I don't get up til 9:30 or 10:30, but even if I am in bed by 2 (sometimes it's 3 or 4 or5 ) I never feel as if I have had enough sleep.

And I am wondering what to do, right now, just arisen an hour ago and with the creature in me, thrashing about (though I was lying in bed for an hour before that, futilely trying to sleep while the humming got worse) . I know I should go for a walk, but I can't bring myself to do anything.

[Chipmunk]

I'm sorry. Is there any reason that you can think of that might have triggered it to get worse?

[ViewsAskew]

Just reading your post made me feel sad...and then, oddly, anxious, as if it were happening to me. Guess it's the affinity - I know how it feels and it's one of the loneliest and miserable places to be - especially if you have NO earthly idea why.

[badnights]

I think my period is coming up, but this is extreme even for that. It just won't let up. It's hard to be normal, and I've committed to things that only normal people can do.

Stress??? from the commitments? Maybe. But then how do I solve it? argh.

[ViewsAskew]

I wish I had an answer .

[Polar Bear]

(( )) That's a warm hug with positive vibes.
Can you un-commit to the things that only normal people can do - or would you consider that you were letting someone down - or letting yourself down.
I'm guessing it is a long committment - cos if it were a short one you might brace yourself and go for it.

I am guessing also that you don't do 'giving in, giving up,' scenario, as a manner of principle - and thus have yourself under a lot of pressure as a general way of life.

[cornelia]

I agree with Ann: it's a lonely and very sad feeling, anxious and depressive.

If it happened to me and I didn't suffer from excessive stress I would think it to be tolerance which means you have to up your dose. Hasn't it been a long time since the last time you did that? Do you have room to up it?

Corrie

[debbluebird]

I understand totally. This has happened to me a lot in the last year. I've also decided that this disease has it's ups and downs, for sure. A week ago I was doing pretty good. Before that I had a bad period and a good period before that. Now this week it's different again. I'm starting to get leg jerks around 2 am. My pattern has been to go to sleep around 11 or midnight. So then this week I would get only a couple of hours of sleep. One night I just laid there because I wanted to sleep so bad, but never did because of the leg jerks. Then they quiet down around 4, but get worse again about 5. Two of the nights I took an Oxy at 5 am and was able to sleep from 5 to about 10. If I took an extra Methadone it didn't work. Last night I didn't go to sleep because I just wasn't sleepy. So when the leg jerks hit at 2 am. I got up, took a Methadone and got on my recumbent bike for 30 min. (that has helped sometimes) But last night it didn't work. I was still awake at 5, so I took an Oxy and slept til 10. The thing is I only have Methadone. The Oxy's are my husbands. During the good periods I'm able to take less Methadone.
You just never know when it's going to hit. It used to be in the afternoons, then the evenings, not at 2 am. Then of course the times when I wake up in the morning with it, when I want to sleep more. I'm just lucky that I don't have to work anymore. When I was working it wasn't this bad. It wasn't good, but I managed somehow.
It's like I've said before, it's like a roller coaster ride. I hate it just like you. I do think there are triggers, but sometimes it just happens.

[ViewsAskew]

I had a random thought today while washing lettuce....

Can you have an infusion? What if Dr Earley is right and everyone's normal is different and yours is 150 or 200? Sure, you increased it with oral iron, but maybe it's not enough? I had another thought....and forgot it, lol. I'll work on remembering it tonight when I clean the kitchen .

[crl363]

Beth, I am sorry to hear that!! Are you still having problems? What medications are you on?

[badnights]

I toned down from that 2-3 week super-vile spell, but I am up at the max of my meds and exceeding them once every two weeks or see with left-overs I have.

I have thought increasingly of iron infusions and mentioned them to my GP. She knows so little about WED, I have to educate her, which makes me uncomfortable these days. I think I have lost energy or steam or will. I have an appt on Dec 6 then she is gone for 5 months so I would have to explain well and fast. she agreed to hand my care over to someone in particular, which I appreciate, because the thought of being handed from stranger to random stranger and which one would deal with a crisis being a crap-shoot really scared me.

I am taking 18 (to 21 rarely) mg hydromorph contin (10 AM, 6 PM, 8 PM, 11 PM), 150-200 mg modafinil (50 or 100 when I get up, 100 at 1 PM), 7.5 mg zopiclone at bedtime (actually zopiclone determines my bedtime, not the other way around as I implied). Also 2000-4000 IU vitamin D in the mornings with fish or flax seed oil, and 2x300 mg ferrous sulfate with vitamin C, one each at noon and night.

Lately I have been waking up finding myself sitting up in bed. I think "oh! I need to get up" and I get up but I don't know why. I go pee but I don't have to. So I go back to bed, feeling wierd, and toss and turn and get back to sleep, and wake up in half an hour sitting up, feel like I was about to get up, so I do, but I don't know what for -- on and on.

It helps if I build the pillows up into a cushy wall or seat-back at the head of the bed, and sit up leaning against them to go to sleep, it helps. I have not gotten to sleep til late, including this week one night of 3-5 AM (inital sleep at 3, but sitting up and all that nonsense until 5, when I fell into a much better sleep (probably stage 2 instead of 1 lol) and another of 5-7 AM (same deal); I go in late and work late so that's ok but no really, because I don't go in late enough. I Thknik the days don't exist that I could sleep as much as I needed.

I had so many wrong words & typos in this, I know I could not have caught them all. I am zopicloned and can't recognize it; I must stop.

[ViewsAskew]

Thanks for posting. I have been thinking of you and hoping things were better. Sounds like it is some, but not enough.

I was talking to my dearest friend today - she has lupus and Sjögren's. We talked about how hard it is to deal with the side effects of the medications that keep us OK. The more I think of it, the more I think this is soooooo much more complex than any of our doctors know, even the ones who know a lot. Our brain chemistry is wacky to start. Then we take meds that affect it so that the movement issues are mostly or completely resolved, but that further alters it. Anxiety, depression, being wired at the wrong times, sleepy when we need to be awake, and a host of other things are the result. It's 6:07 AM in Chicago and I haven't slept yet. It started with being wired, then I had WED for an hour, and finally it's stopped and I'm ready for bed. But, yeesh - that leaves me little daytime! Not complaining, really, just stating that this is really crazy.

I wish they had better ways of testing our brain chemistry and knowing how to adjust it - and I guess, knowing what "normal" looks like. While I don't want to take more drugs, I'm guessing that we likely may need them - or, when possible, natural ways to increase the missing chemicals and decrease the excessive ones to find something that allows us to sleep something normal hours, reduce the anxiety and depression, and feel more even keeled.

[Polar Bear]

Oh my, Beth, I wish better days (actually days and nights) for you. The thought of a stranger for a dr is quite a hurdle and I hope the dr you are handed over to is well versed and well briefed on you in particular.

This going to sleep at around 3/4/5 am seems to be a recurring feature.
I go to bed at around 12, read... well medicated, but wide awake/wired ?
Hubby is asleep and I get up at around 1am. Faff about until 'whenever'.... any time from 3 - 5am.
Then sleep ok until around 9.30am. This is the best sleep time I've ever had. I just don't fight the pattern and am lucky enough not to be clock watching.
It's a bit rough on the day that grandchildren arrive at 7am, but many's the day I went to work on only a couple of hours' sleep.

I get concerned about what sort of a cocktail we are setting up for ourselves in our brains ..... and for the first time ever I have been recalled for repeat liver function tests !!

Ann, I feel that my pattern leaves little daytime... It's often 12 noon by the time I am organised.
You are doing this but trying to also do a day's work !!

[badnights]

I never thought that I would be taking meds to counteract the effects of other meds, but here I am, tier 3. The zopiclone counteracts the alerting effect of the hydromorphone, and the modafinil counteracts the groggy effect of the zopiclone. Actually, I think the modafinil just lets me function with poor-quality sleep, and the zopiclone might be needed regardless of the hydromorph, because the disease is alerting, but whatever. It's all a mess.

The biggest problem is that we're taking chemicals that do not target the real imbalance in our brains. No one even knows what that real imbalance is! So we take something that indirectly helps, but at the same time alters something that was working perfectly fine ... and the cascade starts.

I told my GP last time I saw her that I wanted to go off all meds. I am looking at next fall sometime. I expect to lose a month to torture. Once I am off, I want iron infusions. I didn't tell her much about that part, but she has to be totally on board and willing to invest a lot of time in it, so that I can get a referral and also if I'm to have a hope of getting insurance to cover any of it... which I suspect will be impossible.

The bad 2-3 weeks I had was not period-related. I have been unable to find a cause. I am more stressed now than then, so I can't blame stress.

I accept that I will probably never know what caused that particular blast of hell, but I hope someday to know what in general causes the disease ..... This hope is fueled by the knowledge that people are researching the problem, and that all we need is money poured into research and collectively we will find the cause of the disease. I have no clue how to make money, as my personal life attests, but the Foundation is working on it, so I give them what I can.

[badnights]

I had a bad experience the other day. I was told I had to go to a workshop in a different city Dec 4 & 5. I have an appointment with my GP for the morning of Dec 6, the last one before she leaves for 5 months. Although there is a flight back the night of the 5th, I don't like leaving things so tight. So I called the clinic to re-schedule. I won't get into the perpetual problems with making appointments at that clinic, but I got on a waiting list for the week of Nov. 28. Apparently, we can only be on the list for a week, so I had to pick a week.

For some reason they decided to call me last week, because they had a cancellation. I declined, partly because it was too soon (I had just seen my doctor on Oct 8!) and mainly because my appointment, as scheduled by my doctor herself, was for 30 minutes, whereas the cancelled one was only 15. When I told the woman who was calling that I couldn't accept because it was only 15 minutes, she said "Well" in a tone that meant "why not" or "you should accept", followed by:

"It's just about your legs, isn't it?"

I was not very quick on the response. I said, "No, it's about my disease". But I was horrified. She sees my chart or something. I don't know who she is, maybe I see her on the street, but she knows that I take opioids and she thinks that IT"S JUST ABOUT MY LEGS! She thinks whatever is wrong is trivial and not worth 30 minutes of the doctor's time!

I will have to mention it to my doctor. I have to change the impression people have of this disease, even if only at this one clinic. I am scared to be confrontational. But I have to try.