Though I have been ill with CFS-like symptoms for 30 years on and off I still havent officially been diagnosed. I have had periods, sometimes for a month or so, when I feel totally normal and can exercise a bit. Over time these periods got smaller but I would still have a few days at a time of feeling normal. Only recently have I got so much worse that I now hardly ever have a day when i feel normal. I feel flu-like symptoms and brain fizz (a sort of weird feeling of my brain slightly trembling), and aching limbs most of the time. I wondered what other people's patterns were. How often do you feel normal? What does your normal feel like? do you have periods where symptoms are not just diminished but actually absent? i am really curious to know.
Normal - how often and what does it feel like?
Sidney
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I can barely remember what feeling normal means - but there was a period, about 5 years ago, when I first started taking Tramadol, that I felt - not normal, but good, for a few hours of energy, after a dose. But it was a bit manic, fake, energy, and I always paid for acting my normal self. And it wore off. So I am still learning pacing, at lower and lower levels, and that is a life’s work!
Anyway, that soon wore off - my Normal is now something that I know no one, not even the loved ones, with whom I live, and who care for me, can imagine, though they try. And I try to act as though I am normal, when I actually interact with them, so as to have relationships not about illness! But I have to limit these to brief exchanges at a time.
All I can say to you, is that if you have ME, do not act ‘normally’ even if you feel you can!
Best Wishes to you, S.
Anyway, that soon wore off - my Normal is now something that I know no one, not even the loved ones, with whom I live, and who care for me, can imagine, though they try. And I try to act as though I am normal, when I actually interact with them, so as to have relationships not about illness! But I have to limit these to brief exchanges at a time.
All I can say to you, is that if you have ME, do not act ‘normally’ even if you feel you can!
Best Wishes to you, S.
Rufous McKinney
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For a few minutes here and there.
Its like: Sickness Behavior reporting- has switched off briefly and I am- only being, not- reviewing the grievance list.
Its like: Sickness Behavior reporting- has switched off briefly and I am- only being, not- reviewing the grievance list.
In well over 35 yrs. I've been without pain and actually felt what I can remember as "normal" a grand total of 2 days. By the time I realized what was going on, it was almost over and I just about missed it.
If I didn't have as much pain, perhaps I could deal with everything else much easier; but then what am I talking about? Severe fatigue is still going to be my companion.
Now I'm just thankful for a day when my pain is under control somewhat, I can get dressed and, look healthy and normal, I'm a happy by nature person and don't have my usual allergies and am always grateful for the many things I do have. Right now I'm waiting to see how the introduction of congestive heart failure plays out in my life. In other words, no one knows that anything is wrong.
As far as exercising goes, I'm 73 and walked each day until I developed 3 rounds of shingles. I was bedridden for a year and was never able to walk as exercise again. So, unless you have a serious reason, you shouln't be unable to walk. Personally, I think being outside is great for us, it brings us joy, other people, children and keeps the body moving. How sad is a society when children can no longer walk to school b/c of fear that something will occur on the way. If I worried about mine, and their ability to make it safely to school, I was way behind them where they couldn't see me. I watched their movements, how they crossed the street and generally handled themselves. One could handle it and the other couldn't.....but at least I knew. It gives all of us much needed confidence in ourselves and that we can accomplish something. That's one thing that I'm sorry has been stripped from today's world. Or climb a tree....just freedom.
So, I love the outdoors. Even in a hot climate (but it's very cool today, thanks to someone sending it), we both sit out and watch the birds feed and have baths, our flowers return to life again and just rock the morning away. So we make normal out of abnormal as often as is humanly possible, given the conditions we have.
Have a good one......each of you. I'll close with this: Just do the very best you can, that's all. Yours, Lenora
If I didn't have as much pain, perhaps I could deal with everything else much easier; but then what am I talking about? Severe fatigue is still going to be my companion.
Now I'm just thankful for a day when my pain is under control somewhat, I can get dressed and, look healthy and normal, I'm a happy by nature person and don't have my usual allergies and am always grateful for the many things I do have. Right now I'm waiting to see how the introduction of congestive heart failure plays out in my life. In other words, no one knows that anything is wrong.
As far as exercising goes, I'm 73 and walked each day until I developed 3 rounds of shingles. I was bedridden for a year and was never able to walk as exercise again. So, unless you have a serious reason, you shouln't be unable to walk. Personally, I think being outside is great for us, it brings us joy, other people, children and keeps the body moving. How sad is a society when children can no longer walk to school b/c of fear that something will occur on the way. If I worried about mine, and their ability to make it safely to school, I was way behind them where they couldn't see me. I watched their movements, how they crossed the street and generally handled themselves. One could handle it and the other couldn't.....but at least I knew. It gives all of us much needed confidence in ourselves and that we can accomplish something. That's one thing that I'm sorry has been stripped from today's world. Or climb a tree....just freedom.
So, I love the outdoors. Even in a hot climate (but it's very cool today, thanks to someone sending it), we both sit out and watch the birds feed and have baths, our flowers return to life again and just rock the morning away. So we make normal out of abnormal as often as is humanly possible, given the conditions we have.
Have a good one......each of you. I'll close with this: Just do the very best you can, that's all. Yours, Lenora
You're lucky with such long periods of feeling normal. My temporary remissions only lasted most of a day. They were more frequent at the start, then got rarer, and I haven't had one for many years now. The good thing about them is that they showed that ME is a state that can be reversed, and quickly at that, rather than being permanent damage. We just have to figure out how to switch it reliably and keep it switched in the "healthy" position.
Sidney
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- East Sussex, U.K.
I agree! When I posted that, it was late at night and I was very crashy.
. As sooN as I sent it I felt ashamed. Then I saw your post and felt even worse! I do not normally whinge in my thinking, let alone speaking! It was just some sort of temporary dark feeling I’d been experiencing, and I sprang to reply!
valentinelynx
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Interesting. Jay Goldstein, MD gave me tramadol when I first saw him, back in 1995, I think? I had a great response, felt almost normal, warm (had been chronically cold then, now I'm always hot), with energy. It felt pretty natural to me. This response lasted me about 5 years, I think, but did gradually fade away. Now tramadol does nothing for me.
Hi.....May I ask your doses of Tramadol. I took it years ago, but feel that it did nothing for me. Perhaps the dose was the problem. How is your sleeping? I'm a terrible insomniac.....I've had about 9 hrs. of sleep in past 24 days. Hospitalizations, anesthetics and worst of all, steroids all upset my system horribly. I feel alert and happy for the most part. Been through 2 sleep disorder clinics....couldn't find the source of the problem.
Everyone who comes out of them ends up with a prescription for Tramadol. Valentine, I'm glad you had energy for 5 years and hope it happens again. Sidney & Rufous....I hope finding out the dose will help you also. Lenora.
Everyone who comes out of them ends up with a prescription for Tramadol. Valentine, I'm glad you had energy for 5 years and hope it happens again. Sidney & Rufous....I hope finding out the dose will help you also. Lenora.
Sidney
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- East Sussex, U.K.
I’m sorry for the late reply; I sure you’ll understand!
I did not feel normal at all for 5 years !..I had a couple of hours a day when I was able to walk (maybe 2k steps)...
For I think the last 4(?) years, I take 4 x 50mgTramadol a day, and never, never, no matter how terrible the crash, ever, go over that dose. But if I miss a dose by accident, within a couple of hours I crash suddenly, when I say crash, I mean going from about a 6-7 (my personal ME scale!) to a 9, with little warning.
Drs have suggested for me the 24 hr slow release pill, same 200mg, but only one a day; but I found a I preferred the separate doses. I felt that I got to know the ‘real’ me - Not really Real, just the real MEme. I preferred not to live in a constate equalised state of exhaustion (which I did with the extended release) without big crashes. I liked to get some brighter hours with a 50mg pill or at the least, relief from the worse.
I don’t particularly recommend this approach!
I sympathise so much with you re: insomnia: it can be hell. I don’t think that Tramadol makes my sleep better or worse. Insomnia just seems to have its own motivation, whatever that can be.
I’ve had it since adolescence, but in on-off phases; first the phases were of years, now of days. A bad night does make the ME experience worse, for sure, but a long sleep does not feel really refreshing either.
Somewhere, I read that some ME doctor had said he wished he could just put all people with ME into a sleep coma for weeks. When I read that, I was overwhelmed with a sense of longing, for that unreachable paradise. 💕🌸🌹🦋
I did not feel normal at all for 5 years !..I had a couple of hours a day when I was able to walk (maybe 2k steps)...
For I think the last 4(?) years, I take 4 x 50mgTramadol a day, and never, never, no matter how terrible the crash, ever, go over that dose. But if I miss a dose by accident, within a couple of hours I crash suddenly, when I say crash, I mean going from about a 6-7 (my personal ME scale!) to a 9, with little warning.
Drs have suggested for me the 24 hr slow release pill, same 200mg, but only one a day; but I found a I preferred the separate doses. I felt that I got to know the ‘real’ me - Not really Real, just the real MEme. I preferred not to live in a constate equalised state of exhaustion (which I did with the extended release) without big crashes. I liked to get some brighter hours with a 50mg pill or at the least, relief from the worse.
I don’t particularly recommend this approach!
I sympathise so much with you re: insomnia: it can be hell. I don’t think that Tramadol makes my sleep better or worse. Insomnia just seems to have its own motivation, whatever that can be.
I’ve had it since adolescence, but in on-off phases; first the phases were of years, now of days. A bad night does make the ME experience worse, for sure, but a long sleep does not feel really refreshing either.
Somewhere, I read that some ME doctor had said he wished he could just put all people with ME into a sleep coma for weeks. When I read that, I was overwhelmed with a sense of longing, for that unreachable paradise. 💕🌸🌹🦋
Sidney
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- East Sussex, U.K.
Im sorry, usual brain fog.
I see it was Valentinelynx who was warm with energy for 5 years, not I!
Valentinelynx, that’s fantastic! It only happened for me in spurts, so every year I took another pill, having begun with one, now at 4, and called a halt.
But nothing else helped at all, and I was prescribed everything the rheumatologist could think of, for every condition she could imagine. ( I did definitely have Sjögren’s, and still take the hydroxychloroquinine.)
But nothing made me feel better at all, most worse, until I was prescribed Tramadol for a torn hip ligament. Amazing! I couldn’t believe it, that I felt normal! The doc wouldn’t let me go on having it once the hip was better, since it is a sort of opiate - but the rheumatologist was willing.
Then when I finally got into the Stanford CFS clinic (as it then was), and confessed that I took 2 a day, the NP laughed and said she had patients who took far more than that...
Valentinelynx, I too suffer insanely from cold. Do you have Renaud's Disease too?
I see it was Valentinelynx who was warm with energy for 5 years, not I!
Valentinelynx, that’s fantastic! It only happened for me in spurts, so every year I took another pill, having begun with one, now at 4, and called a halt.
But nothing else helped at all, and I was prescribed everything the rheumatologist could think of, for every condition she could imagine. ( I did definitely have Sjögren’s, and still take the hydroxychloroquinine.)
But nothing made me feel better at all, most worse, until I was prescribed Tramadol for a torn hip ligament. Amazing! I couldn’t believe it, that I felt normal! The doc wouldn’t let me go on having it once the hip was better, since it is a sort of opiate - but the rheumatologist was willing.
Then when I finally got into the Stanford CFS clinic (as it then was), and confessed that I took 2 a day, the NP laughed and said she had patients who took far more than that...
Valentinelynx, I too suffer insanely from cold. Do you have Renaud's Disease too?
Ooooh, yah. Sounds good.Better yet: wake me up when the cure is available.
Wishful....even if there isn't a cure, some answers to the many questions we have....such as why no sleep would be very nice. separate answers to separate problems. We can only hope. Yours, Lenora