MCTD Support Group
Mixed connective tissue disease (MCTD) or Sharp's syndrome is a human autoimmune disease in which the immune system attacks the body. MCTD combines features of polymyositis, systemic lupus erythematosus, and systemic scleroderma and is thus considered an overlap syndrome. MCTD commonly causes joint pain/swelling, Raynaud phenomenon, muscle inflammation, and scarring of...
My experience with antidepressants was very bad. I was on them for about 12 days and my sex drive was screwed up for about four years. A lot of the research I've read suggests that when SSRIs block the reuptake of neurotransmitters, your brain eventually compensates for this, which causes the symptoms to return, which causes the doctor to prescribe more SSRIs, and so on.
I have seen them work for a few of my clients for a few months. I don't actually know anyone who says, "Thank God, my depression is gone since I started taking Celexa" or Lexapro or Prozac or whatever. It's like trying to find someone who will say, "Man, I love smoking pot, I wish I'd started at 14 instead of 18 years old." I just don't think the track record is that good.
My mood swings are still bad since my last flare, or since my brief run on Flagyl, the evil antibiotic. I have five or ten day periods when I'm all right, but I do have these mild "mixed states" of irritability with depression, which is a sign of a significant mood disorder-- something like Bipolar II caused by MCTD. My friends have confirmed that I did get moody and strange around the same time as I first had symptoms, and I'm sure today a psychiatrist would have put me on Abilify or some other god awful sh*t.
My two cents is, try to get on some kind of very carefully monitored program to go off any SSRIs or mood stabilizers, and don't use anything except benzos, and never more than a dose equivalent to 10 mg of Valium and never more than once a day.
Then just try like hell not to do anything stupid when you're mood is bent out of shape, which feels about as easy as fighting a pack of wild dogs when you're walking down the street. The mood systems have to be attacked just like the other symptoms. Use every weapon you have. Call friends constantly. Exercise when you don't feel like it, even if that's just walking across the room or doing isometric exercises in bed.
At least it works some of the time, which is more than I can say for most of the drugs.
I can always count on you. it's really bad. I am not who I was, I tried stopping the meds after 15 days in the hospital without them. No luck. I am to the point that Mary Ann seems sarcastic. I am just moody and mean.
And tired of the fight. And to all of you who complain about your rash, grow up. This can kill you
It has been awhile since I have had really serious depression. I get disgusted at times, but am able to finally accept this disease as something that is part of me. Sometimes, I think my brain will not allow me to get better. Then again, I have really wanted to get better and it did not happen. Maybe there is no such thing as mind over matter.
Reading all the literature about depression and meds, it really looks to me like meds are only a partial fix for many people. And what Cat said bears this out. Living as healthy as possible including trying to keep up relationships seems to be as important. Every think I have read says exercise is huge! Of course, not everyone can run a marathon, but most people can walk down the driveway for a few minutes. Just start where you are.
I also think sunshine is important in small fixes. Just not so much to set off a flare. Just enough to know it is another day. But, that is my opinion!
May the force be with you!
Mary Ann
And I wind up doing or saying things that don't turn out the way I intended. Or thinking people are being nasty when they are not... so here's hoping our younger friends on the board cut us some slack when we get all cranky and bent out of shape... we don't mean it. It's just the anti-RNP talking.
Here's what my shrink and I came up with when we had a long heart-to-heart about medication: if I did decide to start a psych med, it would be Remeron or Desyrel. These both seem to affect the type of sleep one gets, which would be great for me, because I have a lot of evening anxiety and depression. They are also supposed to have better side effects profiles, though Desyrel would probably not work for you because of cardiac issues and Remeron causes weight gain (which would be a plus for me, because my dysphagia is now bad enough that I'm losing too much weight, but a negative for you. Still, a lot of people have told me that those two tend to be safer, particularly Remeron.
I may decide to pull the trigger on that one soon; my mood swings are just getting really bad. There are periods when I seem to be all right, but then I just feel great waves of sadness or irritability that come sweeping over me with no warning, and I fixate on minor injustices people have committed for me. And then I have intense shame about feeling that way... shame that makes me feel unworthy of being anyone's friend. Shame so deep that it seems like even glimpsing it changes you somehow forever, though of course, that's absurd.
I hate drama. This is one way I get around it.
Mary Ann
I thought I was going into depression, but my psychiatrist suggested that I may have a neurological disorder because I have three sleep disorders in addition to all the other crap. She is going to consult with my neurologist.
Wishing everyone the best.
Gabrielle
GAB, ya, paroxetine (Paxil) is one of the worst SSRIs, that was the one that turned women into, like, attractive pieces of sculpture instead of real people for four years. What fixed that eventually was group therapy... but I had almost given up.
The issue with Effexor is the withdrawal, which is notoriously intense... like I said, I can skip a day of benzos, but I know some dudes, if they are an hour late with Effexor, they start getting electrical shock sensations.
I am very suspicious of the idea that an SNRI like Duloxetine (Cymbalta) would do anything for immune disorders-- again, the withdrawal symptoms seem at least as bad as narcotics to me. The literature on this looks a little weak to me-- based on small sample sizes and few studies. There is supposedly one meta analysis that bears this out, but I have no idea what the research design looked like.
I am pretty sure I have some kind of neurological problems, and I think the primary cause is MCTD, but I can't imagine that modern medicine would have anything that would work for that. Neurology is not like virology where you can actually measure outcomes with any accuracy; you can't see what's going on at the synaptic level, though you can tell if you cracked a virus, or measure the levels in blood. Even brain mapping and imaging has turned out to be pretty uninformative. IMHO, this is why neurology will always be way, way behind other branches of medicine.
I am pretty sure I have something neurological going on too, and I don't expect anyone will be able to explain it. Kinda like no one can explain my dysphagia. I have had every test in the book at the hospital. It is all a mystery!
Gab
I hope you feel better Robert
Beth
I have had major depression for years, with trying just about every antidepressive med created. Cymbalta was the last and I am successfully off it now since May. I do take Clonipin for sleep/anxiety at night which enables me to get a great nights sleep.
This is gonna be way out there, but maybe one or more of you are in the same boat. When I was real sick with my migraines and all, my nuerologist asked if I had a family history of strokes and depression as well as migraine. I do, so she did this bloodwork. Well, it came back positive for the MTHFHR gene which in short means my body does not produce the enzyme necessary for the folic acid to break down, Because this can't happen, my body wasn't utilizing the neurotransmitters like serotonin, dopamine, norepinephrine at all. They put me on deplin (which is the pure broken down folic acid) and magic, I am off depression meds!!!! Because my body is utilizing what it needs now and is fully functioning. What a breakthrough! Not saying that I may not need meds anymore in the furure. But this was huge!!!! If any of you have that type medical hx, think about this and get tested. Just some food for thought. Best wishes to all.
Nancy
Mary Ann
Dawn, I am so sorry you are going through that. The only thing that helps when you over-disclose is to educate your coworkers about the illness-- selectively. Tell them MCTD is in the same family of diseases as arthritis, and you don't fire someone or downgrade them for having arthritis. Tell them it rarely affects cognitive functioning (less than completely true, but you can find plenty of references for that) and if it does, it's usually transient.
What kind of processes do you have trouble remembering? It's curious, that does not actually sound like MCTD. Processes are about the only thing I can remember. It's names and spatial memory that get dodgy for me.
Robert, you still out there? How are you doing, man? Any improvement?