AnonymousJuly 6, 2007 at 7:12 am
Anyone experience depression with having either GBS/CIDP or other autoimmune disease?
I find right I am going though that and I have to get a hold of my family DR to get a medication for it. It is a invisible disease for some of us who can still work. I have had problem with speed and multitasking before my CIDP and now I am on modified duties for my CIDP and Tendinitis and some people thinks I can do some job that I couldn’t do for the 23 years I have been there so what makes them think I can do it now especially since I have not recovered 100%. I don’t have the strength and the tendinitis I have had since Feb. I feel is just starting to feel a bit better
I am trying to get my strength by going to physio almost every week and doing some exercise at home with my hands and my upper body and legs. Also I am waiting for my first IVIG treatment. My DR is ordering 5 days of it.
I have started some counseling with somebody temporary until I can get somebody full time.
I have tried medication in the past before I was diagnose and treated for ADHD and some didn’t really help. I was on Zoloft lithium effexor and more but it didn’t do much for me. Right I take my Lyrica and Arthrotec for my tendinitis Concerta for my ADHD and oxazepam for anxiety if it gets bad but right I now I use it so I can fall asleep. I can’t sleep properly my eating habits are not the same I don’t know what to eat or buy at the grocery stores.
So anybody taking good medication for depression that I could read up on to see if it is something I should talk to my family DR about?
DR Shawn or/and Doc David your input would be appreciated also.
Got to get ready for work
AnonymousJuly 6, 2007 at 8:59 am
I have been on Prozac and I’m now taking Welbruton. Can say that they help(ed) that much. I take Klonopin for sleep. It has been doing a decent job. Right now I have a little problem with pain management. It’s managing me instead of the other way around.
I hope you find something that works for you.
AnonymousJuly 6, 2007 at 9:29 am
Yes, I do go through depression! Not a debilitating kind, but a “poor me, my life can never get better” weepy kind. I am a strong person and so far, I’ve always been able to get control and pull myself up again. I have not really tried anti-depressants because my depressions can be few and far between. But if I knew something would help me, I would not hesitate to try it. I just don’t know what to take and I don’t want to experiment with different kinds trying to find the good one. I am taking elavil to help me sleep at night, but I don’t think it’s working.
AnonymousJuly 6, 2007 at 12:04 pm
I have depression, Sue, but then I was suffering from it before my attack of CIDP… I often wonder if the depression caused by constant stress was the cause of my CIDP attack… I take Buproprian for it which is a generic form of Wellbruton… I guess it helped cure me of breaking out into tears over just anything, but I still have days when I long to be able to do the things I used to do… I wish I could help you more because I know where you are coming from… 🙁
AnonymousJuly 6, 2007 at 5:31 pm
I was dxd with depression a few months after I was dxd with CIDP. My doc has me on Paxil in the mornings, and Trazadone at night to help me sleep. He also prescribed Lorazapam for acute panic attacks, but I’ve only had a couple and never at a time when Lorazapam would have been a wise choice. 🙂 This combination of ad’s has really helped me and improved my quality of life in general. The down side would be that both my psychiatrist and internist recommend that I stay on this program for an extended period, as in years.
It was hard to accept that I had depression and needed help, ’cause I’m tough asnd all of that, but I do not regret reaching out ands getting the help now.
Good luck to you!
AnonymousJuly 6, 2007 at 5:33 pm
Thank You Everyone. I have been like that on and off most of my life but managed it by myself some of the times. Since I got my ADHD medication increased it helped me. But then I got Tendinitis in my hands and my work place wasn’t so accommodating to me and even now they feel work related injuries have to be accommodate first.
My workplace want to get rid of me because I am a nuisance to them even tho I have more seniority then 99% of the people there. So when they run me to the ground like I am crap it takes a toll on me.
I got hired their through a government work plan where my pay was subsidized the first year. But now making money and getting the work out faster and accommodating the work related injuries but feel that if they don’t have a spot for me well to bad attitude. Yes the job is light sometimes but the speed is super fast even people not on light duties have a hard time.
I just got a copy of the form my DR filled out for my work place and it mentions that since my last visit in March I am worse and will be getting IV treatment for 5 days.
Management put a sticky note on it asking me to let them know when I get my appointment.
Thanks for letting me vent and for the advise.
AnonymousJuly 6, 2007 at 5:40 pm
Thanks Helen I am on Oxazepam 10mg as needed and I would only take half or a quarter for the rough times which was that often but now I am taking that to sleep since my sleeping pattern is gone. I was seeing a psychiatrist bad because of medication issues and we clashed I stop seeing him because my family DR took care of my ADHD medication. So now I will have to see my family DR and get him to prescribe something. I am trying to see a good therapist but he is booked up for months so in the mean time I will try to see a counselor to help to deal with work and to help me learn my what rights I have.
AnonymousJuly 6, 2007 at 5:55 pm
I feel so bad for you with the problems you are experiencing lately, and how you feel. I do hope you will be able to find a good medication to help your depression.
It’s so discouraging when you are truly trying to do your best, but people around you don’t understand, or don’t care.
I don’t have any magic cure for the problems. but wanted to tell you how much I admire you. Your persistence and your strength are such an inspiration to me and to many others.
Keep up the good fight. I know you will prevail!
My best to you, as always,
AnonymousJuly 10, 2007 at 1:08 pm
Hi Sue. Pain and stress can really aggravate depression. I know — I’ve had symptoms all my life that I could “handle,” but after my son was born I needed medication– which I waited far too long to get — the longer you let it go on, the more chemically depleted you get. The meds can really help balance the chemistry, but talk therapy helped me a lot, too.
I’m on the same meds as Jim C — buproprian (Wellbutrin) for depression, clonazepam (Klonapin) for sleep and occasionally anxiety. I was on Celexa, an SSRI for several years, and it was really good but had long-term side effects (weight gain, etc) that made me switch.
Tried Prozac, Paxil, Effexor (thought it was going to kill me!) — nothing worked until the Celexa. Finding the right med and therapist made all the difference in my life. I’m no longer in therapy but continue on the meds. Please talk to a doctor — depression is a physical condition.
Take care and hope you get that IVIG soon!
AnonymousJuly 10, 2007 at 5:14 pm
I will be seeing my family DR on Monday about the medication. I don’t want the weight gain If I can help it. I had a necessary breast reduction in 2005 don’t want to have to redo that if possible and in the past the medication would screw up my cholesterol and sugar levels.
I am still waiting for my IVIG appointment. Probably won’t know till next week because the clinic my DR work’s at is closed till next week. So I figured they do the booking for that.
AnonymousJuly 10, 2007 at 9:23 pm
My 16-year-old has been living with CIDP for two long years–and he is feeling pretty hopeless.
He has been forced to quit school, has had some trouble with the law, and is on probation. It all comes down to this “condition”. He has always been popular & athletic–now he is embarrassed of this disease and still tells his friends he has “back problems”.
I’m his Mom & I can’t fix this & I can’t tell him he will get better anytime soon.
Depression? Yeah, we have depression by the truckload around our house–but I keep telling myself there are worse things. So, we get up every day and we just try to live the best we can and laugh as much as possible.
I hope you feel better about things, I don’t have this so I can’t put myself in your shoes, but I can send my hope that you laugh a little every day.
AnonymousJuly 10, 2007 at 9:47 pm
Sue, I am taking wellbutrin 300mg a day and also xanax and that has helped my depression a lot. I am really going to have troubles now. My mother-in-law has been diagnosed with alzheimer’s and is in the middle stage now. I was already feeling like my whole body was made on concrete but I have to keep going everyday to take care of her. Good Luck Sue, I hope you find something that will help you.
AnonymousJuly 10, 2007 at 9:48 pm
Kim I am sorry your son is going through such a rough time. Has he been into counseling? That would help him talk about it.
Also he shouldn’t be ashamed of having CIDP he can tell people how he got it so as to prevent others from getting it. I got mines(sp?) from a flu shot. Is your son getting treatment for his CIDP?
CIDP is a serious illness like MS and cancer and loads of others disease. I know for him he lost his former life and wants it back. Seeing a professional counselor would help him accept the new him
There is an NHL hockey player that had GBS. I am not sure if he still plays in the NHL with the Ottawa Senators but he continued to play after getting GBS.
Here is his website [url]http://www.sergepayerfoundation.org/[/url]
Wishing your son the best
AnonymousJuly 10, 2007 at 10:51 pm
My son, Adam, has IVIG treatments every 2-3 months, that is the only treatment that works for him.
I’m looking into the counseling thing, but to be honest, Adam is sick & tired of doctors in general.
We don’t know how he got CIDP. His symptoms began about a month after he had a “flu-like” virus–but he had tested negative for the actual flu.
AnonymousJuly 11, 2007 at 6:27 am
Kim that is good he is getting IVIG regularly and as long as the 2-3 months are not to far apart for him.
On the subject of counseling. Some are not DR’s who do that kind of thing. It will make a big difference.
I find with all the BS I am enduring lately I need somebody to talk to so that is why I see somebody. It helps to get it off my chest.
AnonymousJuly 12, 2007 at 9:32 am
I went into a very deep depression abou six months after my dx. I fought going to a therapist and taking meds but finally did. I’m on Effexor – 150 mg once a day which has helped me tremendously. It’s evened out the highs and lows and helped me to cope. I still get down and weepy some days but try hard to buck up.
Hope you get some relief soon and that your dr listens to you. 😉
AnonymousJuly 12, 2007 at 6:53 pm
Thanks everyone. I go see my DR on Monday will talk to him about medication. I was emailing a DR this week who deals with ADHD issues and he told me Zoloft goes good with Concerta. I tried Zoloft in the past before I knew I had ADHD and didn’t think it was helpful but I realize now maybe I wasn’t on the right dosage. Now I am taking something for my ADHD maybe with the Zoloft it will work. I will just ask my Family Dr about that on Monday.
I know now I am not alone. Physically my CIDP isn’t as bad as most people on these boards but when it affect my daily life in such a way that makes people want to me quit my 23 year old job and their rudeness which upset me then I know I need something to help me through this rough period.
Thanks everyone for the support.
AnonymousJuly 12, 2007 at 7:34 pm
I’ve been following your posts and sorry you are getting such a rough time at work on top of everything else. I was always the type of person that “never let em see me sweat”…I played this super strong person that could handle everything that came my way. Well, that isnt true. I cant handle it all…not alone. I am lucky to have a wonderful husband that will lend a shoulder when I need it…after some coaxing sometimes b/c I am stubborn..:) But, it’s good you are talking to someone b/c that helps so much.
Please dont let those rotten people at your work bring you down. I know what it’s like to work with people that can make your life miserable. I’m 16 years in my job…started when I was 20. I was the youngest in the dept and they hated me for that. Over time, I was accepted and have made some good friends but there is still one that makes things rough sometimes. Just get through your work day and try to leave it there. That’s what I had to do.
Try to remember your life outside of that place.
Dont let them make you feel bad…inside or out. You are a good person and sometimes people are just jealous.
Good luck with your dr appt ! And hang in there…I hope things get better soon.
AnonymousJuly 12, 2007 at 7:47 pm
Thanks Stacey. I try not to let work get to me but when they expect me to do a job and after 10 minutes I can’t do it no more because lack of strength. I can tell they try to give me jobs sometimes in hopes that I won’t say I can’t do it. They want me to do the normal jobs and get off of modified duties.
Just the other day the person placing us on the various jobs told me to go help 2 people I told her no I can’t do that job. Then I hear her say to somebody else that I can’t do the job and she had me go do the easier job and put the other person on the harder job.
If she would have asked me first. No she assumed I could and hoping I wouldn’t refuse. Also my boss is not always happy with me not knowing where to put me. So I am on edge everyday there wondering what will happen next.
AnonymousJuly 16, 2007 at 5:29 pm
Hi Everyone I saw my family DR and he couldn’t give a prescription for my depression until he knew more of what medication would work properly with my ADHD medication. I asked for a parking pass even if for just temporary and he filled one out for 2 years subject to changes. He was supposed to fill only section 1 or 2 he filled out both so I hope when I go bring it to my license bureau I don’t get a hard time with it.
Also I asked about my pap test I had in April the 2nd one in a year and it wasn’t better so now I have to go see a OBGYN and get a colposcopy done to see what is going on down there in the female area below.
Like I hope it’s not cancer I got enough on my plate right now.
AnonymousJuly 16, 2007 at 7:31 pm
Yes, I do go through depression! Not a debilitating kind, but a “poor me, my life can never get better” weepy kind. [/QUOTE] Thats me to the TEE Liz….Sometimes i wish i would die in my sleep and be over this curse going on 11 years now….Always being an athlete in playing Racquetball/Basketball/WieghtLifting etc..and also in the Trades industry (HVAC) i need my feet for these things so i do get down more often. The only thing giving me hope is all the research and clinical trials going on in all these Auto-Immune Neuro diseases and Stem Cells etc….
Anyway i didn’t post this for pity as we all are dealing with this disease but yeah its a bummer having this. Anyway a good Forum here and Best Wishes to all !!
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AnonymousMay 26, 2006 at 11:22 am
I had GBS two years ago, starting february 2004. I was paralyzed from head to toe and spent 10 days on a ventilator. I recovered very quick after this, I could stand and walk without help a week after I got cut off the vent. Recovery continued rapidly, and after about a month and a half I was out on my own in the real world. Well that was just a quick intro, now to my question: Does everyone suffer from depression after GBS?
The doctors at my hospital didnt even mention it, maybe cause I was in a good mood most of the time. Anyway, I noticed while in the rehab center as someone switched to some drama series on tv, and something was a little sad or whatever, tears would just start rolling down my cheek. I was shocked cause I was never the one to start crying for nothing before this, and this phenomenon continued, for a long time I started crying for every little thing. In addition to this I spent a long time after I got back from the hospital feeling sad and without motivation to do anything at all.
I did not think of this as depression right when it happened, mainly because I blamed other things for this state. My gf dumped me the day after I got back from the hospital, or actually she just left and I spent the next couple of months trying to figure out what her intensions were. Anyways, I still have problems with motivation, and I get really down sometimes.
I would like to know if everyone experiences depression and what signs of it you have experienced.
AnonymousMay 26, 2006 at 12:53 pm
You are not alone with this illness – or at least as long as you stay connected to this site. I am over 9 years post and still deal with depression. First reason is because so few people have ever heard of this illness so we feel very isolated. That’s why it is so good to keep in touch with us on this forum – we understand. Second reason I too understand is that I am single and have not been able to form a relationship since I got sick. I work 40 hours a week and almost every night I go home and almost straight to bed to at least get comfortable with my legs up. I figure I have a two hour window a couple of nights a week to do something with someone. I don’t have the stamina to do a lot of social activities – even at 9 years post. Finding someone who is extremely patient seems to be almost impossible. I do know of two members here that got together and ended up getting married. It is rare but so beautiful.
I would say get to your doctor and get on some meds for depression. You might find that these meds also help your physical body some too. I am going to my doctor in a couple of weeks and will be asking him if I can try the new Cymbalta as it advertises on TV for helping with depression and body pain – like our nerve damage.
Also, stay current here and you might be able to help someone else understand what they are going through and that in turn would probably make you feel good about helping someone. Whenever you are down, do some posting here asking for help.
Don’t know if you realize this site was down for a few months and it has come back up a little different. Apparently, most people are posting in the “main forum” category. So be sure and click around a lot.
I hope this helps. My heart goes out to you.
AnonymousMay 26, 2006 at 6:31 pm
Welcome and so sorry to hear about everything. I just wanted you to know that I went through almost the same thing, my gf dumped me in the hospital with CIDP in Nov 2003. After getting out of the hospital I also had depression and lack of motivation. My Dr. put me on Ritalin and Zoloft and that has made a huge difference for me, might be something you could ask about. Good luck and feel free to contact me anytime.
AnonymousMay 26, 2006 at 6:45 pm
I was pretty lucky my BF stuck by me but I gave up due to depression and so did my body.But my friends disapeared and so did most of the support I thought I had.This site helped me alot and there is alot of support around you.It is in places you would not think of even in watching a show on TV it just means that you are human and need to get your stress out in some way that you feel is safe.
AnonymousMay 26, 2006 at 11:12 pm
Depression is inevitable with having survived GBS, in my opinion. Just the experience of having gone through something so traumatic, challenging and rare affects even the fortunate patients with 100% recovery. Explaining it to people, living it, hiding it, greiving it, feeling it… are you kidding? You’d have to be superman not to have bad days!
I fought it for a very long time. Rationalizing it and thinking my cycles of down days were normal, but once I realized how bad my bad days were, I enquired about anti-depressants. I was worried that once I started, I’d live on them, but that’s not how they work. They help you to feel normal again without those really down days.
I also know what it’s like to be single and afraid that no one is going to come along. She will though when the time is right. Take care of yourself, set some goals and remember that you’re most attractive when you like yourself. Self-confidence and acceptance are key.
Welcome to the family!
I almost forgot… commercials can make me cry! I think it has to do with our sense of humanity. There’s nothing wrong with it. A sensitive man, (in control of himself!) can be very charming.
AnonymousMay 27, 2006 at 8:41 am
Thanks for all your answers and support. Its really nice to hear from other people who experienced this. I have considered medication but I’m worried about side-effects and how they will affect my life. I will consult with my doctor in the near future, and get a recommendation from him.
I have actually been so lucky that I have found someone new in my life, but my experience with my ex after GBS has left me scarred, and so has the period on a ventilator 🙂
Many people have a hard time understanding this disease, some people who know me thought I got the disease from smoking marijuana (stupid stupid). I’m very happy that I have many good friends who all supported me so much during my illness (except my ex-gf), they learned about the disease and visited me every day in the hospital. Without them I dont know how long it would have taken for me to get well.
Thanks again for your kind words, and I will keep posting from time to time.
AnonymousMay 27, 2006 at 1:38 pm
I posted something similar to this post on the old forum, so forgive me if this is repetitive.
First, I would like to say that there is no shame in depression. It does not show a lack of character or toughness. Depression is a medical condition which has an evolutionary basis. There are some other factors related to GBS which, while not making depression inevitable, it makes the chance of depression highly likely.
One, of many, theories of the origins of depression is that depression is a condition which is useful to human survivial. Since it is useful, depression is successfully passed on from generation to generation. A study of people in the Phillipines and China found that people descended from areas which had three rice crops a year would have a much lesser incidence rates of depression than people who descended from areas where only two or one rice crops were possible in a year. It was also found that people who descended from hunter-gatherer tribes, such as native North-Americans had higher rates of depression than from farming people, adjusted for poverty and other factors. What this proved was that depression may be a survival behavior in times of famine or stress. If food sources were depleting, depression would decrease appetitie, decrease activity, and increase the incidences of altruistic suicide where weakers memebers of a tribe would kill themselves so that the tribe had a greater chance of surviving. To me, this model makes more sense than other theories of depression. The implications of this model, would suggest that you don’t have much free-will as to whether you choose to be depressed or not.
When we look for specific research regarding GBS and depression, we find none exists. I would like to offer you my unsubstantiated opinion on GBS and depression. That is, the bodies responses to GBS actually cause depression. Let me explain. In the 1960’s, Zimbardo, a research psychologist at the University of California in Berkely did a series of studies in which he injected unsuspecting students with adrenalin, telling them it was a vitamin shot, and gave them a test of mental acuity. The adrenalin would produce all the symptoms of anger including increased heart rate, increased blood pressure, constriction of blood vessels, flushing of skin and a host of other subtle anger responses. After taking the mental acuity test, the test subjects were interviewed and it was discovered that a large percentage of subjects showed a great deal of anger towards the test, circumstances, other test-takers, and the interviewer. This led to the conclusion that emotions can be affected by body responses instead of body responses always being a slave to emotions. This is important when we look at GBS and depression because many body responses to the disease of GBS look very similar to the symptoms of depression. For example, GBS and depression have the following symptoms in common: loss of appetite, increase or decrease in amounts of sleep, less activity, less interest or less ability to engage in socializing, feelings of boredom, decrease in sexual activity, and a deep sense of sadness for a loss. I think it may be very likely that GBS creates a condition which physically feels like depression, and the mind follows along emotionally because it doesn’t quite know how else to process the trauma of being imprisoned within one’s own body.
I think if you look at depression as a coping tool, than I suggest to you that a little depression while in the acute stages of GBS or in an increased state of vulnerability may actually be a bit of a blessing. Depression will allow you to better cope with inactivity and boredom, it will help you in the resignation to the humilition of hospital life, and it will help reduce reactionary misbehavior to a total loss of independence. Depression may actually reduce the chances of disasociative disorders and reduce the severity of Post Traumatic Stress Disorders. With this in mind, it may not be necessary to treat mild depression in patients recovering from GBS.
This doesn’t mean that people with GBS shouldn’t be treated for depression. It is a matter of degree. Depression should absolutely be treated if the patient is having suicidal thoughts, the depression is disrupting the recovery of the patient, or the patient loses the will to be an agent of their own recovery.
Please keep in mind that this post is only my opinion. There is no research available dealing with GBS and depression, and there probably needs to be. I hope this can be a foundation for future discussion and if someone wants to argue about my conclusions, only good things will come of it.
AnonymousMay 27, 2006 at 4:26 pm
I really like the way you think. I also always try to look for a logical reason for whatever is happening. Can’t always connect the dots, but very often it helps to try.
I’m sure your logical approach to problems has helped many on the Forum understand what is happening to them.
Keep up the good work!
AnonymousMay 27, 2006 at 5:01 pm
[QUOTE=illmatik]I have considered medication but I’m worried about side-effects and how they will affect my life. I will consult with my doctor in the near future, and get a recommendation from him.[/QUOTE]
I agree with alot of what Lee wrote. I just wanted to add that illmatik’s fear of side affects is common. Your doctor will help you determine which medication will work best with minimal side affects. I’ve been on Cipralex for 2 months without ANY side affects. Thoughts of suicide have never crossed my mind, that isn’t why I’m on anti-depressants. I found this site helpful in explaining how anti-depressants work:
AnonymousMay 27, 2006 at 6:21 pm
A couple of years or so after GBS I met depression but didn’t know it. It took a while for me to accept the diagnosis.
I don’t think (though I don’t know) that every GBS’er meets depression but a heck of a lot do. I had not thought of the depression being connected to the GBS. but looking back, it certainly helped.
I take Seroxat, it contains seratonin, a chemical made in the brain that helps the nerves pass messages along. I think that it helps with depression and with the nerves.
The SSRI anti-depressants do not seem to have as many side-effects as some of the other older, anti-depressants. Mind you, withdrawal is better done slowly than cold turkey. The side-effects of Seroxat (if you get any) are short-lived and I would rather have the side-effects than depression.
AnonymousMay 27, 2006 at 8:26 pm
An interesting point was brought up during one of our local GBS support group meeting. A pharmacist at the meeting said “In the old days you had medicines which didn’t work very well and didn’t have any side effects. Today we have medicines which actually work, but have side effects.”
Side effects should be taken into the equation, but as a general rule, if the medicine isn’t going to help you, why use it?
Pam, I am sorry if I left a wrong impression. Anti-depressants are not just fo people who have suicidal thoughts. What I should have said is anti-depressants should absolutely be given to people who have suicidal thoughts. If depression impairs your functioning, then you should take them. Below that threshhold, talk with your doctor and make an informed decision. I just want to propose the idea that mild or extremely mild cases of depression may have some positive value to people in the worst of medical times when dealing with GBS.
AnonymousMay 28, 2006 at 1:54 am
Oh no! You didn’t give the wrong impression Lee! I just hoped to dispell any misconceptions that anti-depressants are a last resort for suicidal thoughts. I was one of those people who thought my depression wasn’t “bad” enough to warrant meds. I was still functioning out of necessity (I’m a parent), but irritable, sad, overly sensitive, not eating well, and suffering from headaches too often. I also found that losing my temper was becoming more frequent.
I agree with pretty much everything you’ve written Lee. 🙂
AnonymousMay 28, 2006 at 10:21 pm
I am recovering from GBS in 10/05 and then a relapse in 1/06. My neuro said that I don’t have CIDP and must be one of those very lucky people to relapse a few months after the onset. It put me back several months in recovery. I am coming to terms with having depression also. It is sad to hear well wishers say, ” You look good.” when you put on a brave front all the time so you are not poosing friends by complaining about how awful you feel. My husband silently listens to my complaints without getting tired of listening, but I curb my complaints and my fear that I most likely will never be able to do all of the things that I love and have the stamina to take my son for a bike ride, or go skiing. I was about to go back to school for teaching certification, but I don’t have the stamina yet and I take pain pills to get through the day, so now we are financailly behind the eight ball, but of course, I can’t qualify for Soc Sec or disability since I was just about to embark on a certification program to teach and wasn’t yet working. Since I am not even a full year into this illness, first time events still make me cry, such as today, putting on a pair of shorts for the first time of the season and thinking to myslef that the last time I wore these shorts, I was healthy and could physically do anything that I could do the year prior – not that way anymore. My neuro also refused to give me anything stronger for pain than tramadol – which only takes the edge off and doesn’t mask the pain to help me get through a busy day. I am also sad to see that my muscle tone is wasting away, I am trying to do a little exercise, but it’s just like tapping into my batteries and I am that much more in pain at the end of the day. I was going to ask about anti-depressants, but I thought they have weight gain issues and since my life is pretty sedentary, I thought I would be sadder if i became pudgy. I am so thankful for this support group, I feel less alone knowing that there are so many others out there who know what the pain feels like and it doesn’t need any descriptions – which never can quite explain what the pain really feels like unless you have experienced it.
I am glad the site is up again. It is a shame that the history has been lost as a search tool, but we are still able to listen and advise each other.
AnonymousMay 28, 2006 at 10:34 pm
I just wanted to say that a combination of Tramadol for aches and pains and then Neurontin for the nerve pain has really worked well for me. Finding the right dosage of each is key though. Are you taking anything like Neurontin or just the Tramadol???
AnonymousMay 28, 2006 at 10:43 pm
Hi, through all my disabilities (13) I had only a very, very little depression and only lasted a few days. Now with the GBS I first started out good but because it keeps getting worse I am extra depressed. Can not take anti’s because my body is not able to handle them.
Not trying to bring you down just the opposite, look at all of them I went through good, just fight it and do happy things.
AnonymousMay 28, 2006 at 11:37 pm
I’m in talk therapy and have been for quite a while. The combination of anti-depression/anti-anxiety meds and talk therapy works well for me.
Chronic illnesses can and will cause depression and taking care of ourselves emotionally is a vital part of the healing process. My therapy support group includes someone who survived 911 and other people who have been diagnosed with PTSD (Post Traumatic Stress Disorder). Additionally, one should keep in mind that living in New York, which has many psychoanalytic caregivers, creates a mindset that looks to the med/therapy solution. We each create our own solution to the psychological trauma caused by these events. Speaking as a chronic reader/peoplewatcher, I was surprised to see the dichotomy between posts about depression on the U.K. forums and the posts here.
AnonymousMay 29, 2006 at 10:55 pm
depression has also been an issue for me. as everyoe tells me i try to fix the world, keep everyone happy and forget aobut my own problems which eventually catches up to us. i was diagnosed in 2003 and last summer reconnected with a guy i went to high school with. he has been wonderful for me. there is hope out there to form new relationships but at times i get so exhuasted i think it would be easier to be alone, maybe not quite as fun but definitely less demanding:D my life is always so full of drama that i would have to run far far away to even get a break…good thing for good medications.
AnonymousJune 1, 2006 at 4:46 pm
I am post GBS ’98. It seems most go on to live a normal lives after the ill-effects of GBS have taken their course. The majority do go on to live free from after-effects where as the lucky few must deal with ongoing issues. I am one of the post GBSers who has had ongoing issues with fatigue and depression, with little actual visible physical impairment.
I was clinically diagnosed with dysthymic depression three years into my recovery. The precipitating crisis was realization that my body was done healing (for the most part) yet I was still tired all of the time, which led me to the realization that my energy/vitality may never return. That is, the sense of energy and drive I experienced prior to the onset of my GBS episode. So, I have done my best to adapt to the situation. I read a lot about GBS and tried to understand how I came to this life situation, as if knowing would fix me. LOL I am so silly at times. Anyway, I learned that many who suffer from GBS also suffer from fatigue and depression, that my misery likes company who might understand how I feel and could relate to my trials and tribulations- I read the forums and can relate to much of the experiences posted here.
I read in a recent paper that 80% of GBSers suffer from ongoing issues related to fatigue, some more sever than others. It stands to reason that fatigue in and of itself causes a sense of depression, which may confuse the picture somewhat in that fatigue is a major symptom of depression and friends who do not know me well might assume that my fatigue is caused by my depression. hmmmm. Fortunately, my depression is a low grade, which means I am not a threat to myself or others 🙂 . Mind you, I do have problems functioning, as indicated by my difficulty keeping a job. During episodes of feeling tired and fatigued out, I do feel quite depressed and frustrated. I certainly can relate to the blues music much better these days!
I am taking EFFEXOR XR- a once-daily SNRI (serotonin-norepinephrine reuptake inhibitor)- for the past four months, which has helped me a lot. I do not feel the lows, the sense of helplessness I experienced when off SNRIs. Perhaps it will help me with continuing to make favorable changes in my lifestyle. So, I can relate , illmatik, and hope your depression is situational and you will feel better down the road. In the mean time, perhaps a medication could help you for a short while.
AnonymousJune 1, 2006 at 5:36 pm
[COLOR=red]Sorry to hear about you’re troubles. Like Lee said there’s no shame. I have permanent damage and cann not stand or walk (wheelchair bound). My ex-wife left me/cheated on me while I was in rehab. I kinda know how you feel.[/COLOR]
AnonymousJune 12, 2006 at 12:57 pm
people’s insensitivity, cruelty and selfishness continues to amaze me, sorry to hear you had to go through something similar to me. Thanks for sharing it with us, and thanks to everyone for their support and advice.
I’m doin better now, but I guess my ability to trust women (in a romantic relationship) has been damaged for good….
AnonymousJune 30, 2006 at 11:30 pm
Yes, depression is a very big result of GBS. We have our life turned upside down, hurt, and have to redo our whole way of living.
Since coming here on the forums, I noticed that I don’t feel so alone, and we are all equal in the mental pain that we feel.
Find a good doctor, I have a psychiatrist, that can deal with your mental AND physical pain. I was on Paxil last, and now I am on Cymbalta. Each person is different, but there is help for you.
First step is to get control of the depression and slowly all else with fall in place. Ask questions and the answers will help you will feel less frustrated.
Rember GBS is Getting Better Slowly…with alot of friends’ help.
AnonymousJuly 1, 2006 at 8:09 am
Being a newbie to this forum, I would just like to say thank you. I have been diagnosed with CIDP and have undergone three rounds of IVIG therapy and high dose Prednisone with no improvement. I continue to weaken. I have recently gone to a wheelchair. My life is changing rapidly and I find myself falling into tears and sobbing at the drop of a hat. I have had several bouts just perusing the forum. I try to keep a positive attitude and hope that I will recover. Everyone has been supportive and I am truly blessed. But the tears still come and the sorrow is real. I was a very active person and now I am totally dependent and helpless. But I can see I am not alone. Thanks again.
AnonymousJuly 1, 2006 at 12:56 pm
Welcome to our family, glad you found us.
[quote=rbtro]Being a newbie to this forum, I would just like to say thank you. I have been diagnosed with CIDP and have undergone three rounds of IVIG therapy and high dose Prednisone with no improvement. I continue to weaken. I have recently gone to a wheelchair. My life is changing rapidly and I find myself falling into tears and sobbing at the drop of a hat. I have had several bouts just perusing the forum. I try to keep a positive attitude and hope that I will recover. Everyone has been supportive and I am truly blessed. But the tears still come and the sorrow is real. I was a very active person and now I am totally dependent and helpless. But I can see I am not alone. Thanks again.[/quote]
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