Topic: Taking stimulants to function a little, vs being bed-ridden
Rumigirl
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Member # 15091
posted
I've been dealing with extreme fatigue for decades. Of course, it's from Lyme & co.
I was bed/couch-ridden for about 2 years. Then, I couldn't stand it any longer; I was ready to end it all if I couldn't do SOME things. Plus, if I don't do some
things, I can't make an effort to get well, ie, go to dr's visits, get my blood tests, go to therapy, which is essential for me, go to
the drug store, go back to the osteopath & massage therapist, when I am in so much pain that I can barely move, etc.
I started taking Florinef, Cortef, and Nature-throid, then added a tiny dose of an ADD drug a few years ago, all of which helped a lot. I take very high doses of Sam-e, CO Q10, D-Ribose, etc., and, in recent years, a fair amount of caffeine, Plus, glutathione & B12 shots. And I do a LOT of pushing myself.
Without all this, l can't function at all.
Sure, I know this is far from ideal. But I was ready to end it all before. It's hard enough with all this to hang in there with the pain and suffering and disabilty.
It's such a conundrum. I don't want to keep whipping my poor adrenals, but . . . since this has gone on for so many, many
years, I feel like I have no choice if I want to have a chance to do what I need to get well, and to not chose to leave the planet---
or be so depressed that that is all I want. Plus, I am trying to hold onto my marriage, which is hard, too.
I have worked so hard to get well, but the obstacles are constant. It's alway one step forward, one step back.
Feedback??
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sammy
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Member # 13952
posted
Sounds like you know what you need. Even though you'd rather not take the ADD meds, they seem to give you a much needed extra boost to help you get through the day.
I don't know how bad it is on the adrenals since the adrenals may not be working well in the first place. Or maybe they are healthy and the infections are just so severe that that is more of what you are feeling as your body tries to fight and deal with each infection. Hard to guess.
There have been many times over the past few months where I've asked my doctor if i could try an RX for Adderall XR (or similar). I've always wondered if I have adult ADD. I struggle greatly with concentration and focus and memory. So I wonder if it would help me. I also wonder if the side effect (increased energy/stamina) would be a benefit too.
So far my doctors have said " no" whenever I've asked, including my LLMD. They seem to think that these symptoms will go away with Lyme even though I know that i've been struggling with this for most all of my life, for as long as I can remember at least.
Rumi, I think that this would be a bad time to pull a helpful med unless you absolutely had no other choice. If you really want to stop taking it, wait at least until things settle for you and you are feeling better, a good long while after the holiday stress!
Hugs for my friend! Hang in there, OK.
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poppy
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A relative on an ADD drug since a small child says it affects his appetite (doesn't want to eat).
I tried to get his parents to think about looking for causes that could be fixed, and possibly wean him off this drug, to no avail. It is easier just to pop that pill.
On your situation, we do what we have to for survival.
Wondering if you feel the nature throid takes care of your thyroid symptoms, because that is a real cause of fatigue too. Everyone seems to respond differently to thyroid meds. Some do well on nature throid, but I did not. Tried everything--synthroid, synthroid plus a t3 med, t3 compounded only, etc.
Finally ended up with armour and some time getting the correct dose. This worked the best. Unfortunately then the U.S. company changed the forumulation so it didn't work so well, now having to get it from Canada, and they will probably shut that off soon. Then I suppose I will try to get armour compounded here.
Wouldn't wish this long search on anyone, and if nature throid works for you, that's great. Just mentioning my situation fyi.
The thing is that fatigue could come from many things.
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Rumigirl
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posted
The fatigue clearly comes primarily from the long-term many infections. The ADD drug I take is only 1/2 of the tiniest dose once per day. BUT, I take a ton of other stimulants in the form of so many other meds, supplements, and caffeine.
The thyroid issue is an on-going issue, as I have Hashimoto's, and it changes frequently whether I have to raise or lower the
dose. I don't think it is ever a perfect fix, but as good as I've ever gotten it. I have never tried T3 separately. Nature-throid is
similar to Armour. It used to be cleaner than Armour, but the changes to what is allowed, etc. have made it probably indistinguishable from Armour.
Yes, I agree; I don't think I can afford to change my strategy right now, except I think I have to realize that I really can't and shouldn't try to do so much.
It's hard, because most of what I do is to try and get well, or at least to deal with all the symptoms and pain. The rest is to try and have a tiny semblance of a life here and there. Which is really hard and too much.
But when the illness goes on for my whole adult life, and for 8 years since diagnosis----what do you do? Be bedridden the
whole time?? I can't or I wouldn't last. But I think I should temper the degree to which I'm trying to do so much. Oh, for a fairy godmother or magic mommy!!
Even with all I do to help myself, the degree of despair is horrific, and nothing changes much in any significant or on-going way. Just constant obstacles and struggles. I know I am hardly alone here.
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Kudzuslipper
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Rumi, hang in there. I agree don't stip what is helping. I think having enough energy for life is so important.
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posted
I agree w/ kudzu...having enough energy for life is crucial to keeping your sanity. I am exhausted as hell right now but I still make sure that I see people and don't isolate and engage in the world as much as possible. Hang in there. Jess.
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sparkle7
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Have you tried astragulus? I think Buhner says to stay away from it but it did help me when I had CFS.
Kratom is really helpful, too - but it's not for everyone.
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posted
Rumigirl, I am so sorry you are going through such an complex and difficult time on many levels.
I hit a bad week or more not too long ago and I felt at the time that I couldn't do anything else to help, and I didn't know how to get out of feeling so depressed and bedridden.
Being bedridden in itself is depressing and then on top of that you mentioned you have a husband. This disease is beyond awful and I feel you are trying different things to help you manage these challenging times - which are too often.
I was prescribed Vyvanse at the beginning of the year for focus and energy. It is like Adderal but doesn't work as fast and helps me quite a bit. I also was prescribed Wellbutrin back then because I was feeling so down, tired, anxious, etc-
The anti- depressant helped me but I am wanting to find a natural one and wean off of the RX drugs.
This is a tough time and it really shows your strength to reach out on the board. You have probably tried everything, but testosteron helped me quite a bit as a female, with energy and libido. And I was having zero libido.
If something you feel isn't working, hopefully you and your dr can try something else. My muscles hurt so much and I know I need to take the right kind of magnesium and MSM.
If you try something or change it, pls do so one at a time. I didn't do that and only waited a couple or more days before adding something else, so when I herxed badly, I wasn't sure what is was from.
And if while you are laying in bed, see if playing some of your favorite music can bring your spirits up. You are doing a great job working your way to find the right treatment meds, etc. to have you function.
Please try to get some sleep. And know we are all here to support you and understand what you are going through. I find when it is a full moon and/or before my cycle, my symptoms worsen and I get very emotional, feeling down, and depressed.
Being around my two young boys lift my spirits. They climb in bed with me and keep me company, along with ant dinosaurs, dragons, angry birds, and many other favorite things to play with.
I also have dogs and a cat who is like a dog, and they are so loving, unconditional, just as in my personal faith God is- they love me nomatter how I look or feel. It's a great feeling.
BTW some folks have mentioned POTS, and similar autonomic problems- could that be a possibility? I forget what the letters stand for, but you can google it if you haven't heard of it. And I am being treTed for Hypercoagulation and that has helped me so much with getting nutrients to where they need to be- I never knew I had it and am so thankful my LLMD checked me for it.
Keep taking care of yourself and pamper yourself with something that brings you joy. - watching a favorite tv show, especially one that can make you laugh.
We are all here for you. Reach out anytime and you are welcome to pm me if you would like. Lots of people on here understand what you are going through.. Hugs to you!
Posts: 167 | From Southeast Tennessee/Chattanooga/Atlanta | Registered: Oct 2012
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posted
I take the tiniest dose of adderal when I need to. I don't like it, but sometimes I have to get up and do a few things not just because they need to get done, but also to feel useful.
Have you tried taking cytomel as and addition to your thyroid meds? My thyroid labs are pitiful. I don't convert T4 to T3 so I take cytomel through out the day to help with that. I did better with nature throid versus armour.
By the way, I am bradycardic too so the stimulants do help that. My husband has Lyme too and is narcoleptic to the point he has to use provigil to stay awake to drive to work. We do what we need to do to function.
My LLMD doesn't have a problem with using stimulants in small quantity if you need them. Using supplements, over the past two years, my addrenals are testing normal now.
Hang in there, it will get better.
-------------------- Faithful
Just sharing my experience, I am not a doctor. Posts: 2682 | From Colorado | Registered: Oct 2009
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momlyme
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posted
quote:Originally posted by Rumigirl: I've been dealing with extreme fatigue for decades. Of course, it's from Lyme & co. ===snip===
I have worked so hard to get well, but the obstacles are constant. It's always one step forward, one step back.
Feedback??
Rumi - send me a PM. The fatigue was something I dealt with for decades too. I just found something that got rid of it completely.
I disagree that this fatigue is from Lyme & co... I think it is toxin overload, Lyme being just one of the many toxins that overload us.
-------------------- May health be with you!
Toxic mold was suppressing our immune systems, causing extreme pain, brain fog and magnifying symptoms. Four days after moving out, the healing began. Posts: 2007 | From NY/VT Border | Registered: Aug 2010
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Rumigirl
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Thank you, momlyme, but I disagree. I've been a natural health care practitioner for decades and have been doing a tremendous
amount of detox for many, many decades. Yes, it has helped me a lot, along with all the other natural modalities that I have done. It hasn't taken the symptoms away. And abx has helped a great deal.
I still do a lot of detox, and natural modalities, of course.
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momlyme
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I have done a lot of detox too... much of it I learned from here. Detox baths, dry brushing, FIR saunas, castor oil packs, acupuncture, liver flushes, juicing, cleansing... you name it I tried it. Some of it made me better, none of it made me well.
I was sick for over 20 years. I had no idea I had Lyme or that my 'silver' fillings were actually mercury. I went back to school when I first got sick with what I thought was arthritis... to try to find a cure for my pain. I have been treating myself for years with natural cures. I am not a certified health care practitioner... still, I have a lot of knowledge.
My son is well and I am well and we were both very sick. He was more acutely ill... and I was more chronic and long term... but still we are well and hiking mountains together.
I felt a connection to what you said about one step forward and one step back... I was there for a lot of years.
I found a way to leap over all that and get my life back.
Toxins were contributing to my fatigue and when I used a scientific formula to rid my body of the toxins... I had more energy and brain power than I have had in years.
Maybe your fatigue is all from Lyme... but what if just some of it were from toxins. Would getting rid of some of the fatigue be helpful?
I remember many days when I couldn't bear the idea of walking up the stairs to get to my bedroom. The first day I felt well... I ran up and down my stairs 100 times, in sets of 25. I went out and bought a treadmill the next day and have been running started walking, now I run 2-5 miles a day... I hadn't run in over 20 years. I am doing P90X (which is pretty intense) I have energy and a love of life that I had lost.
I would love to see that kind of turn around for everyone... that's all I want. I hate the pain of this disease. I lived it and watched my son suffer from it... it doesn't have to be that way. I believe anyone can get well.
Whether you disagree with me or not, I hope we're still friends. I'm sorry you are in pain and I wish I could make it all go away.
-------------------- May health be with you!
Toxic mold was suppressing our immune systems, causing extreme pain, brain fog and magnifying symptoms. Four days after moving out, the healing began. Posts: 2007 | From NY/VT Border | Registered: Aug 2010
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sparkle7
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momlyme - can you just post what you did to feel better? We all like to learn...
Fatigue can be Lyme or it might be something else. Everyone is unique. I had CFS like 20 years ago but I was able to get well by addressing my diet & taking astragulus. I was under 30 at that time. I was able to get completely well.
8 years later, I started having pain & some fatigue. First they told me it was fibro & then I got a Lyme clinical diagnosis. I don't trust that the doctors always know. They just want to put a name to whatever it is & try things. Hopefully, something will help. If not - then you end up trying everything under the sun that you can afford.
Many of the symptoms of Lyme & the co-infections can be other things. Maybe things that aren't even discovered yet...? We just have to keep trying.
PS - the thing about taking "stimulants" is that they may make you feel better for a bit but it's easy to over do it. You just have to be mindful that you are "borrowing" energy that you may have to "pay back" later...
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Rumigirl
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quote:Originally posted by sparkle7: PS - the thing about taking "stimulants" is that they may make you feel better for a bit but it's easy to over do it. You just have to be mindful that you are "borrowing" energy that you may have to "pay back" later...
Of course, I know that this is hardly a good plan. But the alternative is even worse. I used to be a person who NEVER did caffeine or all the supplements that can be stimulating, etc.
Some of the things I take aren't stimulants per se, ie, Cortef (well that is debatable, but it's low dose), Florinef, Co Q10, Sam-e, but they enable me to function some.
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