Myasthenia Gravis Support Group
Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...
As my spirits lift with IVIG and spring, while many are beginning the struggle with MG, I thought I might reprise a post of last year: (again apologies to our Southern hemisphere MGers, not forgetting you!) Many of us are so tired of having our problems dismissed as emotional ones that we neglect to consider the real contribution that depression may be making.
Because of its unpredictability and usual sudden and unexpected onset, MG is a particularly difficult disease to handle emotionally at any time. But those who are in the throes of diagnosis or trying to find the treatment that works at this time of year may be having a particularly difficult time.
It is a major loss at the time when most people are beginning to get out and take advantage of the longer days and better weather, it is the usual time when children's activities outside the home are increasing and we are struggling. It is how people feel who have been hit with a major loss around holidays, when your spirit is out of sync with those around you and there is no way to participate in the life you know. In addition to MG it is a Problem (with a capital P) and a Pill is not the answer, but may be part of the answer.
We all have to find our own way through the dark times and what works for one may not for another, although here we can let people know what our experiences are. But the recognition of the problem and aggravating factors is a beginning and the question of depression and sadness and drugs can be addressed. I have a lot of clinical (serious) depression in my family, and some of what I attributed in myself to depression was MG; but that doesn't mean that treating the MG will make the depression go away.
It has been recognized that giving psychoactive drugs to people who are mourning (and losing our health and usual activities requires that) is not helpful. We have big problems to solve and such treatment may get in the way of clear thinking and solving problems in the manner that is "most you." However there may come a time when the sadness becomes depression and medication is indicated.
Signs of clinical depression include: "stinking thinking," feelings of worthlessness, despair, intrusive thoughts of how bad one is and past misdeeds (no matter how unimportant), suicidal thoughts (get to the doctor quickly), inability to get beyond the sadness to problem solving or to enjoy activities in which we can participate, eating and sleeping difficulties (not related to MG or medications), and loss of interest in relationships. Taking medication in those circumstances will be helpful, not harmful, and allow a person to direct energy into more positive thinking and enjoyment.
In general, if you take an antidepressant and feel "flat," it is not indicated, or at least the wrong medication for you. If you take medication and feel more like yourself and able to participate more fully in the life around you, then at least for now that is what you need to function fully. This is a rotten disease and we need all the help we can get!
Regarding spring fever, medication will not make the snow melt or dry up the muddy roads! or get rid of heebie jeebies for that matter. Wish it would.
hugs to all, b
Because of its unpredictability and usual sudden and unexpected onset, MG is a particularly difficult disease to handle emotionally at any time. But those who are in the throes of diagnosis or trying to find the treatment that works at this time of year may be having a particularly difficult time.
It is a major loss at the time when most people are beginning to get out and take advantage of the longer days and better weather, it is the usual time when children's activities outside the home are increasing and we are struggling. It is how people feel who have been hit with a major loss around holidays, when your spirit is out of sync with those around you and there is no way to participate in the life you know. In addition to MG it is a Problem (with a capital P) and a Pill is not the answer, but may be part of the answer.
We all have to find our own way through the dark times and what works for one may not for another, although here we can let people know what our experiences are. But the recognition of the problem and aggravating factors is a beginning and the question of depression and sadness and drugs can be addressed. I have a lot of clinical (serious) depression in my family, and some of what I attributed in myself to depression was MG; but that doesn't mean that treating the MG will make the depression go away.
It has been recognized that giving psychoactive drugs to people who are mourning (and losing our health and usual activities requires that) is not helpful. We have big problems to solve and such treatment may get in the way of clear thinking and solving problems in the manner that is "most you." However there may come a time when the sadness becomes depression and medication is indicated.
Signs of clinical depression include: "stinking thinking," feelings of worthlessness, despair, intrusive thoughts of how bad one is and past misdeeds (no matter how unimportant), suicidal thoughts (get to the doctor quickly), inability to get beyond the sadness to problem solving or to enjoy activities in which we can participate, eating and sleeping difficulties (not related to MG or medications), and loss of interest in relationships. Taking medication in those circumstances will be helpful, not harmful, and allow a person to direct energy into more positive thinking and enjoyment.
In general, if you take an antidepressant and feel "flat," it is not indicated, or at least the wrong medication for you. If you take medication and feel more like yourself and able to participate more fully in the life around you, then at least for now that is what you need to function fully. This is a rotten disease and we need all the help we can get!
Regarding spring fever, medication will not make the snow melt or dry up the muddy roads! or get rid of heebie jeebies for that matter. Wish it would.
hugs to all, b
Positive thought goes a long way and I look at this in between time before full Spring when I can plan for modified activity as I am able. The worst for me so far was when I needed oxygen to take a step in any direction. We installed throughout the yard and gardens resting places where I could sit with legs up and read or soak up a bit of sunshine and watch the birds. I did not want to isolate inside when I could be outside but I was not up to the type of participation in activity. Right now I am making plans for spring that I believe are doable some with help but I want to achieve my goals.
I have been called by those who know me very well "hopelessly optimistic" but I do have my times of feeling down. Before retirement I also have had people at work who became depressed over their circumstances and needed extra help including medical. I hope I was always there for them when they needed guidance and made them feel that this is something we all can go through and need help with at times. I have also had family members who have had depressed times and worked through it so I know the heaviness it lays upon one and how they have to understand their own worth in this world.
I want to have goals and expectations for myself that are doable and I do not want to set myself up for failure. I feel like I can work around my limitations by being careful to put activity into chunks and building in to any activity rest periods and stopping at any point.
For me doing things in the morning is always preferable due to increasing fatigue as my day progresses. I am getting better tho at titrating my pyridostigmine to activity.
Mary
Regarding spring fever, Tampa Bay is expecting temps in the upper 80's by mid week. I think I'm one of the few in the area whose blues increase as the temperature goes up. My ice packs are ready.
I wish you all pleasant and comfortable days ahead.
Larissa ;)
I was feeling quite flat early this year. My primary doctor said I was likely depressed and recommended an SSRI. I didn't believe it was depression, as I wasn't sad, so consulting Dr. Google, I found a condition -- anhedonia-- that described my condition well--not getting pleasure from planning things, doing things or accomplishing things.
Theory was that something was stopping the release of dopamine in
my brain -- what is supposed to give us the feeling of anticipation, pleasure and accomplishment (funny how a chemical is all it takes).
Anhedonia in mice can be produced by chronic stress, cocaine withdrawal, or by high doses of dexamethasone (a drug very much like prednisone).
My own diagnosis was my high doses of prednisone was the culprit--and so being able to rationally attribute a cause, a way of understanding it (whether I was right or not), I could go forward. My doctor said after I explained this and said it was working that I had been using cognitive behavior therapy on myself (playing a head game?)
Now 4 months later, almost off prednisone and having added testosterone (also greatly depressed by prednisone), spring time is as it should be.
As a little evidence for the no-dopamine theory, I took one of Margo's oxycodone pain killers, and it did fix my outlook for a day. It is a dopamine releasing drug--why it is so popular on the street.
For me, spring slowly pushes me back indoors. All my outdoor activities are done late October to early May, which thankfully is a majority of the year here, due to the long winter.
I would be afraid of adding yet another drug to my current cocktail.
No - I would like to go out with my friends and spend the day doing whatever I wanted. I would like to clean my house properly the way I want it. I would like to shower any time I want that extra little feel good boost from being freshly clean. etc., etc., etc.
Yes - Would you be? When you don't what a day without pain is like. When you really want to go and get things done but you are just too tired. When you do try and go out with friends that you used to power shop with and after 2 or 3 stores at 1/8 of the you used to spend at each you are drained and have to go home. How long with all of our day to day "things" before you get mad or sad or whatever.
I see my emotions coming along more quickly and it is much more difficult when I see everyone out motorcycling in the warm Florida sun and I see the motorcycle of my dreams collecting cobwebs in my garage waiting to be sold.
For the most part I am still positive. I try SO HARD. I do try to do and keep the little things around me that help keep me positive. But I completely understand the other side too.
By the way - because I am retiring from the military and I haven't had a chance to do it for 20 years my hair is a dark purple-ish red. It is another make me smile thing.
Kimber
I have had a lot of emotional problems and depression when I was younger, and last year when my MG was less controlled was difficult too. But I had to be amused when, the second time I was hospitalized for crisis, I noticed one day that Lexapro was one of the medications the nurse would bring me every morning, and then my discharge papers list "depression" as one of my official diagnoses. But I didn't recall any special conversation with a doctor that lead to me being diagnosed with depression, except maybe that one day when I asked for drugs because I was uncomfortable with the vent tube! I'm sure I did look very distressed, but I was surprised the doctor would just decide I needed anti-depressants without a more thorough exam to diagnose me. I considered filling the prescription when I left the hospital since I had been down in the months previous, but I decided not to add another drug, and now I'm doing much better emotionally.
Incidentally, I was really afraid of taking prednisone at first because many of the women in my family become either violent of depressed when they take it. It seems to not have the effect on me, thank goodness, though I might have experienced some indecision and anhedonia (though I guess it's hard to tell if I'm avoiding doing things because I can't physically or because I am disinterested in everything?)
It is helpful to recognize our feelings are reasonable in the face of our disabilities, but better to have ways to work around them and contributions here are always welcome. But when clinical depression is piled on top of reasonable sadness and despair, it can make everything including MG worse and I hope this post helps in recognizing there are times when antidepressants ARE indicated. Their use should be based on specific indications, not general frustration ( on our part or the doctor's ) or because the doctor thinks we should be or are "depressed. "
The antidepressants were discovered looking for treatment for other disease states and most are just modifications of the first SSRI (and buproprion, Wellbutrin, which is another class of antidepressant). Like all drugs they have their benefits and risks, and just like prednisone are not to be taken lightly or avoided when indicated.
May we all experience more happy days with fewer drugs and treatments ( but as much as we need!!!! ) b.