Vicious Circle

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kncb95
Regular Member


Date Joined Jun 2007
Total Posts : 40
   Posted 12/30/2008 7:24 PM (GMT -7)   
Hey everyone,
I seem to only post when in dispair sorry about that!
Ok so have sjogren's and poss. Lupus, chronic back pain(degen. disc disease).
I am so frustrated with my body I used to be able to do so much and now I am exausted after I do the dishes. I stopped working a little over a year ago. I feel like a burden. I feel like one day my Husband is going to realize that it is just not worth it. I am 31yrs old and feel 98yrs old. If this is how the rest of my life will be I would want out. So I would expect others to not want to be around the exausted lump on the couch.
I have seen Psych. and I have tried every antidepressant there is and I can only take a low dose of prozac. (long boring story just believe me I have tried it all) My psych says the only thing to do at this point is eletro shock :0 but he says I will loss some memory such as all memory from 3 mths before procedure. I don't want to loss any memory I have trouble now remembering my name somedays like I need any help in that area.
So I am in this vicious circle of depression caused by autoimmune disease, then depression making autoimmune disease worse and so on and so on.
 I need to get into a support group I live in the Dallas/Plano Texas area any advice on where I should look?
Thanks for letting me vent,
Kasey

Sjogren's 2005, Poss. MCTD or Lupus 2005, Degen. disc disease 2000
Prozac 20 mg for depression and Adderall for ADHD
no autoimmune meds. since 2006 (took plaquenil for short time body did not tolerate it)

Post Edited (kncb95) : 12/31/2008 6:34:48 AM (GMT-7)


Audrey Ann
Veteran Member


Date Joined Jul 2005
Total Posts : 815
   Posted 12/30/2008 8:56 PM (GMT -7)   
Many hugs for you, Kasey! ((((((Kasey))))))

I remember feeling much like you have described when first coming to grips with the realities of the autoimmune diseases I had been diagnosed with. Just keep taking the antidressant you can take and try to continue therapy.

I would be a bit scared of the electro shock stuff, actually, and I would try my best to deal with things as they stand right now. Try not to worry about your husband too much - since you have no control over his actions right now. You are about to learn a lot about yourself and, at the same time, will begin reassessing your life goals and plans. Your husband took the same vows you did and right now you have the sickness part so he has a big job right now.

With the proper treatment from a rhuemy you will begin to feel better physically but still may deal with flares as time goes on. This is a chronic disease that will most likely not go away. Some patients end up with a remission but it is not common. Keep yourself informed and keep up with your doctor appointments. There is a light at the end of the tunnel - however faint it might appear to you at the moment. Is there a Lupus Organization in your area that has a support group? I would try searching on Google and see what you come up with. Your rhuemy might know of a support group, too.

Also, this is a great site for venting and asking lots of questions! I will keep you in my prayers!

Audrey
Prayers,
Audrey Ann
Lupus, RA, and (Maybe) Fibromyalgia and LOTS of Medications!
 


 


PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 12/30/2008 10:14 PM (GMT -7)   
Kasey,

We're a support group, but we just don't have to clean up, dress, drive to go to our group. No matter how bad you feel, we're here. There's also a chat room associated with the forum, and although I don't participate, I know that some do. I'm tired and flaring tonight so won't make this too long, but let me make a couple of suggestions. The first thing I did was to find a good therapist. She has been so much help to me in processing my condition, and in helping me manage my illness. When I flare we go back and try to see what I could have done to better take care of myself over the past week or two. Even when I want to talk about other issues in my life, she pulls in the reigns till we go over what's gone on with my health that week. She has helped me give up lots of my perfectionistic expectations about myself and my life. I'm a work in progress, as we all are, and we've been at this for a few years, but dear friend, don't give up. I can live the rest of my life this way and still be happy to be here, but I haven't done it in a vacuum.

Let us help you. And we can start be telling you not to beat yourself up for posting only when you're feeling despair. There is such a great group of folks here who understands, as well as anyone can, what you're going through, and that's why we don't have to apologize to each other.

Someone here will be able to advise you how to find a local support group. I'd start with the Lupus Foundation of America website and go from there, or simply google Lupus Support Group in Dallas/Plano Texas. Just don't forget that we're here for you too.

(((Hugs)))

Pat
SLE, osteoarthritis, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis, gluten intolerance.

prednisone, cellcept, plaquenil, celebrex, neurontin, synthroid, triamterene, ultram, actonel, tri-est, imitrex, cymbalta, tricor, acifex, multivitamin, calcium w vit D, fish oil, aspirin


kncb95
Regular Member


Date Joined Jun 2007
Total Posts : 40
   Posted 12/31/2008 6:34 AM (GMT -7)   
Audrey and Pat,
Thank you so much for you kind words of encouragement. I will look for the local lupus foundation for a support group.
Also thank you for letting me know it is normal for me to feel like this from time to time.

-Kasey
Sjogren's 2005, Poss. MCTD or Lupus 2005, Degen. disc disease 2000
Prozac 20 mg for depression and Adderall for ADHD
no autoimmune meds. since 2006 (took plaquenil for short time body did not tolerate it)


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 12/31/2008 9:37 AM (GMT -7)   
Hi Kasey,
 
Oh girl, your description of how you're feeling is exactly how I have felt off and on during this past decade. You are not alone in how you feel.  That vicious circle of ups and downs is so common. Those feelings of being a burden are hard to free yourself from. I understand. I feel that way too sometimes. I think the frustration of it all is the worst.  Like I have a big bully inside me and it won't let up.... ((((((hugs for you)))))))
 
I know you've tried a pile of anti -d's, but have you tried Zoloft?  I can't take Paxil or Prozac, so when my doctor mentioned Zoloft I was suspicious.  Another SSRI.  EEK!!!  But it's the "tame poodle" of the SSRI group of meds.  Paxil and Prozac are the "rabbid pitbulls".  I'm doing fantastic on the Zoloft!!  I'm on only 100mg of it and it's working great!  Just thought I'd put that out there for ya.
 
I hope you find a support group in the area where you live, but like the other gals have mentioned, we're here for you too. 
 
Blessings,
Ginny
 
 
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with Lupus in 2000. Fibromyalgia, Anti-phospholipid syndrome(APS)(stroke, 2002), Sjogren's, Raynaud's, Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck), anxiety. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, Neurontin, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 12/31/2008 9:53 AM (GMT -7)   
Hi Kasey. I don't have a lot to add to the wonderful things that everyone already told you, I just wanted to say that, like the others have said, it is very normal to have some pretty strong emotions about having a chronic illness. For me it's like a grief cycle with times of anger, times of sadness, times of accepting it and times of feeling a strong sense of loss for my old life.

I can't take any of the anti depressants in the SSRI family or SNRI (?) family. I have really bad reactions to them and my doc thinks I might have seritonin (sp?) syndrome. I take a low dose of doxepin which is a tricyclic anti-d in the same family as amitriptyline and nortriptyline and it helps me sleep at night and helps some with some of the headaches I have.

Please know that we are here for you and know that you are among people who understand the rollercoaster of ups and downs and inbetweens that come with trying to cope with a chronic illness. (((((hugs)))))).
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; UC 2008; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Evoxac; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

Please allow HealingWell to continue helping others by donating: http://www.healingwell.com/donate/

 

Co-Moderator: Lupus and CFS Forums



Weleetka
Regular Member


Date Joined Oct 2007
Total Posts : 184
   Posted 12/31/2008 10:04 AM (GMT -7)   
I feel so bad for you...
Wish you all the best... you are so young to have all this stuff....
I sure hope you can begin to feel better soon...

kncb95
Regular Member


Date Joined Jun 2007
Total Posts : 40
   Posted 1/2/2009 7:35 AM (GMT -7)   
Thanks for all the wonderful advice and well wishes.
Ginny,
I have taken zoloft. I wish I could take zoloft it worked for me when I was a teen. But now it like all other anti depressants causes me to have severe involentary movenment. I was always able to take any antidreppresant I wanted until I saw a Psych that believed in overdosing his patients to keep them numb. I trusted him and thought he would not over due it with me because I had told him over and over again that I was sensitive to meds and could take a low dose and get the same result.
I was taking wellbutrin 150mg and was doing well but before my diagnosis they thought I had fribro so they told me to see him for the pain. He gave me cymbalta and xanax to take on top of the wellbutrin 2 days of that coctail I began moving so severly I looked like I was dancing it took over a week to stop it enough to be able to sleep. So now if I take any antidepressant at any dose except prozac I begin moving with 1 or 2 doses. Even 25mg of zoloft. Crazy Huh!! I don't know what he did to my brain but it was so bad!!
Sjogren's 2005, Poss. MCTD or Lupus 2005, Degen. disc disease 2000
Prozac 20 mg for depression and Adderall for ADHD
no autoimmune meds. since 2006 (took plaquenil for short time body did not tolerate it)


Serina
Regular Member


Date Joined Aug 2008
Total Posts : 431
   Posted 1/2/2009 9:04 AM (GMT -7)   

I don't have a lot to add either Knbc95.  i was unable to find a support group in this area. Even google gave me nothing much, I did find this one woman in my area, on Myspace, who has lupus.

But as someone already said, this forum is a support group for us.  Might even be better than if we were physically in each other's  house or an office.

I take Doxepin as some others here.  I take 200 mg of Doxepin daily.  it helps me to sleep most of the time, but sometimes nothing helps me to sleep.  In the really good days, when pain and sickness is minimal, and motivation is high, sleep defies me.
 
I tend to still believe that Lupus has an effect on our brains.  I think physically Lupus affects us and causes depression.  severe depression in my case.  Bill had a real good reponse for us a few weeks ago, about how Lupus affecting our brains, mind, thinking, etc.
 
Hope your day will be good to you as you go through your daily routines
Hester
Lupus diagnosed 1996, Fibromyalgia diagnosed 1996, Heart by-pass 1998, breast cancer 2000, stroke2002, vascular surgery 2005, heart attack in 2007, and had a stint put in, Sjogren's Syndrome 2008, Stroke 11-4-08
 
******
aspirin, multivitamin, Arthrotec , Meclazine ,  plaquinil, Metoclopomide, Doxepin , Metoprolol, synthroid,  Amlodipine, Crestor, Lasinopril, Plavix, phenagrin,  Restasis  


peacesoul
Veteran Member


Date Joined Jan 2007
Total Posts : 2446
   Posted 1/3/2009 8:05 PM (GMT -7)   
Hi, sorry you're struggling so much. Most of us have walked this road.
 
I had to stop working back in June and I live alone. My boyfriend/ family have not always been supportive so it was a lonely road.
I would cry myself to sleep, worried how I was going to support myself or how my life was going to turn out. I was always very independent and never ever relied on anyone. I have/had a great job, a home and a car. Lots of friends and sat up all day wondering when I was going to lose it all.
 
My depression CONSUMED ME, My rheum and therapist wanted me on an AD, but I refused. I'm a big believer in natural healing and tried meds for my lupus, but they failed.
The natural way helped my lupus and also helped my depression.
 
Please reconsider shock therapy. That seems to be a drastic move for something that can be helped with healthier ways
 
 
good luck
 
Jen  


The world breaks every one and afterward many are strong in the broken places


Serina
Regular Member


Date Joined Aug 2008
Total Posts : 431
   Posted 1/4/2009 10:17 AM (GMT -7)   

Peacesoul

How are you?  What did you do to keep the home and friends?   your car and home, do you still have it?  you maybe have more strength than you realize.

Can you share what you did to keep you to this place that you are today?  Other people's stories seem to help me a lot.  It is good to know that I am not in his boat all by myself.  any time you need to speak to us, we can be there for you.   and my email address will be available if you wish to send me an email.

I don't do well on the phone.  do not not talk well on the phone, and I can no longer sit long enough to talk on the phone.

Hope this day will be better for you

Hester


Lupus diagnosed 1996, Fibromyalgia diagnosed 1996, Heart by-pass 1998, breast cancer 2000, stroke2002, vascular surgery 2005, heart attack in 2007, and had a stint put in, Sjogren's Syndrome 2008, Stroke 11-4-08
 
******
aspirin, multivitamin, Arthrotec , Meclazine ,  plaquinil, Metoclopomide, Doxepin , Metoprolol, synthroid,  Amlodipine, Crestor, Lasinopril, Plavix, phenagrin,  Restasis  


Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1299
   Posted 1/4/2009 10:41 AM (GMT -7)   

Kasey,

Sorry you are having so many problems.  I participate in a Lupus support group in the Chicago area but the Lupus Foundation has several active groups in the Dallas/Ft Worth area.

http://www.lupus.org/webmodules/webarticlesnet/articlefiles/948-Dallas%20SG%20Flyer%2007.pdf

Are you asymptomatic?  The description of weakness and fatigue would indicate that your disease is very active and not being controlled properly.  Lupus can have a neurological impact that needs treatment with med to control lupus.  Just treating depression is only treating the symptoms, not the cause.  You are not taking any controlling meds and that might be a problem if lupus is causing or contributing to your depression issues.  I would take the approach to talk to others in the support group...call the leader(s) and find out which one seems like the best for you.  Our group has some very experienced people who have been able to help many over the years.

I would also recommend finding another rheumy in your area who is experienced in treating lupus. 

Hope you can get things under control soon

Bill


Serina
Regular Member


Date Joined Aug 2008
Total Posts : 431
   Posted 1/5/2009 10:17 AM (GMT -7)   

Hey Bill Kasey,

Just treating depression is only treating the symptoms, not the cause. 

No wiser words have ever been said according to me.  I think I have truly been misdiagnosed sometimes in depression, and never treated the real problem.  I could be wrong of course.  I am trying to get my rheumy to do an MRI to see if I have more white matter than I had in 2000, when the first stroke happened to me.  If I do have more white matter, (lesions on my brain) than symptoms of depression could have been increased because of this white matter.  I am just guessing of course, but I definitely believe that Lupus causes the depression.  There may be hundreds of people with depression that could be caused by Lupus.

It is my findings that many people presented themselves to thier doctor, like me, who had a host of symptoms.  One of those symptoms was/is depression.  It is my understanding that some people have a host of symptoms and a good doctor could see that the person could have Lupus, so they get tested.  But I would bet that most go undiagnosed for Lupus, and do not get treated for Lupus.

I apologize Kayse that I seemed to have gotten my words lost again in my post to you.  Rereading my post to you, I could see my mistakes.  I try to reread them again, but messed up somehow.  I am guessing that maybe Lupus caused this last stroke.  I could be wrong.  but my echocardiogram heart was good, and my corotid (spelling) arteries were good, so what caused it?  Do I need to get prednisone again?  don't know.  I certainly do not wish to weigh over 200 pounds again, but I would like more relief, especially from depression.  but maybe the damage has already done by my brain, and I couldn't get relief anyway.

Here I go again.  Still wanting to vent, still wanting to list my own pain and problems. 

Hope the day finds you in good spirits Kayse.

Hester


Lupus diagnosed 1996, Fibromyalgia diagnosed 1996, Heart by-pass 1998, breast cancer 2000, stroke2002, vascular surgery 2005, heart attack in 2007, and had a stint put in, Sjogren's Syndrome 2008, Stroke 11-4-08
 
******
aspirin, multivitamin, Arthrotec , Meclazine ,  plaquinil, Metoclopomide, Doxepin , Metoprolol, synthroid,  Amlodipine, Crestor, Lasinopril, Plavix, phenagrin,  Restasis  

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