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Old 08-11-2007, 06:37 AM   #1
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Anyone Relate To the New Criteria Including Agoraphobia?

I'm wondering if anyone else here has gone through periods of agoraphobia or maybe even still lives with it. I found the "new criteria for Lupus" below very interesting as I have struggled with this to some extent for years, though most would never know, since my work requires me to travel nationwide, etc..

Agoraphobia
The prevalence of central nervous system disease in lupus varies from report to report. My belief is that lupus is a primarily neurological disease in which other organs may be involved. Clearly, the careful assessment of more subtle and neuro-psychological manifestation hugely increases the number of those with 'CNS lupus'. In history taking, I have found that one of the more common features of the disease, often antedating the diagnosis by many years, is agoraphobia/claustrophobia. Obviously, there are fairly precise definitions of these clinical features, but a number of patients give clear histories. In retrospect, these features may be present at a time when the disease may well have been active. The history, varying from panic attacks in shops to fear of motorway driving, for example, is sometimes protracted, lasting months or years.In many cases, the history is not volunteered, or the episodes are considered unrelated or 'something from the past'. With modern recognition of the diversity of the CNS manifestations of lupus, it is hard not to consider such histories as "pre-lupus".

 
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Old 08-11-2007, 08:45 AM   #2
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Re: Anyone Relate To the New Criteria Including Agoraphobia?

Dear deedle77,
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Last edited by goldenwings; 08-11-2007 at 09:08 AM. Reason: Reply message came on twice.

 
Old 08-11-2007, 09:06 AM   #3
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Re: Anyone Relate To the New Criteria Including Agoraphobia?

Hiya deedle77,

Pleased to meet you. The thing is this 'new' criteria is not really new. It was one of the points about lupus diagnosis/classification in a paper published by Graham Hughes - a leading lupus consultant in the UK - in 1997/98. The other points in his listings are very interesting. Always be careful of thinking that it is a part of lupus though. As with others things it 'may' be.

It is something to mention at a lupus consultation though, if you have had this type of problem.

Take care

goldenwings
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Last edited by goldenwings; 08-11-2007 at 09:15 AM. Reason: misspelling

 
Old 08-11-2007, 09:13 AM   #4
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Re: Anyone Relate To the New Criteria Including Agoraphobia?

I am not sure about the Agoraphobia. I do have a history of panic attacks but they were about 8 years ago and I didnt even know what they were. They just would come out of no where. I took zanex and it did help. The claustrophobia is another thing. I have had that for a very long time. Elevators dont bother me so much but I cant stand anything touching my face at all...not the covers, scarfs or even my hair. I feel suffocated. I have for many years and thought it was interesting that it was even mentioned. The insect bites were also interesting since I have always had VERY strong reactions. I even remember when I was young and visiting with some people away from home I got bit by an ant and they had to call my mother because one bit on my foot made my foot swell to twice its normal size.

Whether any of this was pre-lupus or not, who knows. I think when we all look back we can see that we had things that went on that were probably a sign of things to come but that is the wonder of hindsite. Now we look at everything and wonder if it is related or not.

LOL...the only thing I do know is I am falling apart!! Whether that is lupus or crossing the 40 year mark, who knows. I just know it sucks!!!!!!

Hanging on and praying each day that the next is better is the only thing I know to do right now. I have had such a hard run for the last few months that I just keep asking myself if I can do anything to help myself feel better. I have really tried hard to be as upbeat as possible, but I will have to admit that lately the anger is just so hard to fight. I am just so angry right now because I cant do what I need to do much less what I want to do. My family does not seem to understand. They try and I commend them for it but they really don't get it and really can't possibly. I know you guys do though.

It has just GOT TO GET BETTER!!! I would be satisfied with just one single day that I can walk from my door to my car without being terrified of falling. If I could go just 3 months without fracturing a rib. Have one day without feeling that I am not able to keep going. Have one day that I dont look in the mirror at my swollen, broken out face and wonder who that person is and how I am ever going to improve that with make up. Have one morning that I dont have to take something for pain 40 minutes before leaving for work so I can hold the steering wheel and drive my car. Have one day where my legs and arms aren't so swollen that I have a difficult time walking or my feet dont swell up so bad that my toes do not even touch the floor when I am standing.

ok...I have done my whining. Hopefully that will do for a while.

Erin
Dallas TX

 
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Old 08-11-2007, 09:19 AM   #5
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Re: Anyone Relate To the New Criteria Including Agoraphobia?

Hiya Erin,

I am so, so sorry you are feeling so very bad. Your rheumy needs a kick up the backside I think. Forgive me if I am wrong on that won't you ? Thing is though how can you go through this amount of pain without adequate relief ? Are you on the appropriate lupus medications ?

I really feel for you. You are in my heart and I hope things get better soon.

Luv 'n stuff

goldenwings
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Last edited by goldenwings; 08-11-2007 at 09:23 AM.

 
Old 08-11-2007, 11:50 AM   #6
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Re: Anyone Relate To the New Criteria Including Agoraphobia?

Quote:
Originally Posted by goldenwings View Post
Hiya Erin,

I am so, so sorry you are feeling so very bad. Your rheumy needs a kick up the backside I think. Forgive me if I am wrong on that won't you ? Thing is though how can you go through this amount of pain without adequate relief ? Are you on the appropriate lupus medications ?

I really feel for you. You are in my heart and I hope things get better soon.

Luv 'n stuff

goldenwings
I know you have a rough time too, I remember talking to you when I started taking the MTX. My rheumi is trying..he said I just have a very chronicly active case. We tried the MTX but it just didnt do the trick and I started having liver problems and lung scarring, meanwhile still active and my CNS and kidneys started showing more signs of lupus. My heart has also started having issues with Mitral valve regurgitation and diastolis dysfunction according to the cardiologist. So now we are trying the Cellcept with 30mg of prednisone, lasiks for the swelling and something new for the osteoporisis which I can only imagine is due to the high doses of steroids for the last 3 1/2years and watchfully waiting. He is only going to allow 3 months and if I do not show signs of improvement we are going to start the Cytoxan (which I have resisted). I know others have it worse than I do and I really try to keep that in mind when I get down. But it can be hard when I get so angry. I am not mad at anyone but I just get tired of it all and all of the feelings have no where to go but in. You dont want to whine or say anything to anyone because you don't want to bother anyone else about it. I mean you know that no one wants to hear you gripe about your medical problem. That is just how it is. They will maybe be sympathetic but I know for me in the back of my mind I am thinking that they must be thinking "boy is she a downer". That is one good thing about here is we can vent about it and just let it go and move on. We all understand the difficulty of living with this disease and how it effects us every day. I just truly wish I could go into remission just for a while. A few weeks....anything. I would like to not dread the morning just one day! I think if I could just have a few good days (and I am not even talking pain free, just mild pain for a day) I could recoupe and get my feet back under me and get a little stronger. I have to keep a happy face on at work because I dont want them to get wind of how bad it is getting and think I need to be replaced or cant do my job.

I take vicodin for pain but will only allow myself 2 a day. My dr has said I can take 2 every six hours but there is just no way I will allow myself to take that much pain medication. The only other thing I can do for relief is ultram and sometimes 2 soaking baths a day.

Hopefully the Cellcept will start to have some effect soon and I will get my feet back under me.

Thank you all for allowing me to vent here!!!! It does help to just let it out.

Erin
Dallas TX

 
Old 08-11-2007, 02:05 PM   #7
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Re: Anyone Relate To the New Criteria Including Agoraphobia?

Hi, Deedle. I've read that list, too, and I agree with the others that panic attacks *perhaps* mean something---i.e., when occuring in conjunction with a goodly number of the *other* things Dr. Graham cites.

Looking way back, I know I matched on at least 11 of that list. My panic attacks came many years later, when I travelled a lot on business & commuted daily by train & subway. I carried smelling salts (very Victorian) and wore a rubber band on my wrist that I snapped briskly when I felt my heart & breathing rates change. 'Twas a mess. I've had ZERO episodes since starting Plaquenil & avoiding sun.

I had convulsions as a child---maybe from too many antibiotics (?)---but the later panic attacks were markedly different. No twitching or involuntary movement; just shallow & fast breathing & heartrate, sudden sweating, slight trembling, and overall weakness. But defitenly NO spasming or "seizing".

For what this may be worth... I hope you start closing in on answers & help soon. Best wishes, Vee

 
Old 08-12-2007, 06:18 AM   #8
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Re: Anyone Relate To the New Criteria Including Agoraphobia?

Hi, I don't have agoraphobia or claustrophobia (and god knows I've had enough closed MRI's to know I don't have it, lol). The only time i've ever had (what I think) were panic attacks were when I was being stalked, and when I had a job many moons ago that was a 24 hr. operation and I always ended up having to come in to cover people that didnt show up or working sometimes 3 or 4 shifts in a row without ever going home. After a while I started panicking everytime my phone rang. Other than these times, which seem to make sense that I would start panicing, i've not had them ( I don't think , at least). I do, however, get other neurological symptoms.

 
Old 08-12-2007, 06:34 AM   #9
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Smile Re: Anyone Relate To the New Criteria Including Agoraphobia?

Hi ther,

Forgot to say in my last post, that yes I had agoraphobia and panic attacks for a number of years. I know for a fact though it wasn't brought on because I have SLE, even though I have cns involvement. If it was anything to do with SLE, why didn't I have these things going on over 30 years ago when I was first diagnosed ?

I had had SLE for a lot of years before I started with my other problems. It was circumstances of my life at the time that started me with panic attacks, after which my agoraphobia started.

This is only my account of what happened to me though. Others might be able to put things down to their lupus. Whatever makes sense to you now looking back, it is best to mention it to your rheumatologists I feel.

Take care

goldenwings
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Last edited by goldenwings; 08-12-2007 at 06:35 AM.

 
Old 08-12-2007, 01:50 PM   #10
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Re: Anyone Relate To the New Criteria Including Agoraphobia?

We never really found out what were causing mine. It was really pretty strange. I would just be working along at work and then I would get dizzy, start sweating and my heart would just go nuts. I was only about 29 at the time and my life was going pretty well. When I finally did see a dr about them, she gave me the Zanex. I took them for a while and it got better and then slowly faded away. I haven't had a problem with them since, but the claustrophobia was a whole other animal. I have had that as long as I can remember. I too have had many MRI's and they were complete torcher even with the meds. It took a lot longer too because I would get so bad they would have to bring me out. I would do okay for a while but one of the last ones was of my brain and complete spinal cord all three regions and it took 3 hours. It was just too much. I would even try to make up songs to go with the beat of the mri, lol.....

Like I said before, I dont get the connection...but I am not a dr. I do know I have CNS involvement, my last mri confirmed that and with the bilateral optic neuritis and myelitis we knew that. To me it is just so strange that it would be connected to the Lupus or CNS.

By the way, I just wanted to say thank you to Goldenwings for the empathy yesterday. I was really letting myself get down if you know what i mean. I do feel a bit stronger mentally atleast today. Some days are just harder that way than others and I get really frustrated and well....depressed and angry that I am so out of control of my own life.

But thank you! Sometimes that is all you need is just someone else to understand.

Erin
Dallas TX

 
Old 08-12-2007, 03:08 PM   #11
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Re: Anyone Relate To the New Criteria Including Agoraphobia?

Thanks to everyone for your input and help. To clarify, although I did put another post up about "Scary Episodes", they are not at all like panic attacks. I have had panic attacks and some limited agoraphobia since I was 17, some occuring when my Synthroid is raised too quickly to adjust for the Hashimoto's. The "episodes" I have had are very different and are more a involuntary jerking in my arms and shaking/jerking of my head and not at all like a panic attack. I see the Neuro tomorrow and will be getting the results back from my ANA (the last one came out negative), CRP, ESR, ANCA and Lyme Disease tests. I am praying for answers!

 
Old 08-13-2007, 08:38 AM   #12
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Re: Anyone Relate To the New Criteria Including Agoraphobia?

Hiya deedle,

Good luck with your appointment with the neuro. I totally understand the way you describe your 'episodes. I have a nerve and muscle wasting illness and I do have these things you describe happen to me. Sometimes I am aware of my head bobbing and so on.


Obviously I wouldn't even think of saying what your problem 'might' be, that is up to the doctor. Don't forget to write down as uch as you can about what is/has been going on with you. Ask and ask questions and don't give up until you have the answers you understand and accept.

Take care

goldenwings
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Old 08-13-2007, 08:46 AM   #13
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Smile Re: Anyone Relate To the New Criteria Including Agoraphobia?

Hiya Erin,

Thank goodness you have said what is wrong with you because I am going through depression - again - and I feel at a loss sometimes. I do hate it though when "they who think they know everything" docs say "ah, you do have some very serious illnesses going on, no wonder you are depressed". No, no, no - I am depressed because of life in general at times and what life has thrown up at me personally in my past. Nothing to do with my illnesses.

I feel better about talking about it now because you do understand where I am coming from with this and I don't ever want to sound like a pity pot sitter.
I am normally very strong and try not to show this side of me. As soon as my darling husband goes out to work though, the tears can flow freely.

When someone asks can they help or what is wrong that is what I find difficult. I honestly don't know what is wrong at that particular time with this depression. Hey ho, never mind this too shall pass.

Thank you for listening. Take care

goldenwings
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Old 08-13-2007, 11:00 AM   #14
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Re: Anyone Relate To the New Criteria Including Agoraphobia?

Goldenwings, oh yes I completely understand. It gets quite overwhelming at times...the anger, frustration and depression. It isnt really self pity as much as anger and frustration at the complete lack of control. You ask yourself if there is ANYTHING you can do or if you are not doing enough and sometimes if it is just you and you need to just snap out of it and buck it up and get tougher. I am sure that people outside of the situation think that at times, but there are just times when I can't "buck it up", I just don't have it in me. I smile and go on and try to laugh and cut up and even laugh at myself because ...well nothing else can be done, but man is it hard to do on some days. My coworkers (atleast those that know me well) know that when I get quiet, it is really bad. On moderate days, I try to joke around more to take my mine off of things. But when we are alone, that is when it is hardest. My doctor did suggest something for depression, and I have considered it. I just don't want to take any more medication than I am already. I can usually bring myself out of it, but when the fatigue really gets bad and the pain starts wearing me down, it is much harder to fight due to well...complete exhaustion mentally and physically.

Feel free to vent to me anytime. I know how much it can help just to let it out to someone who actually understands that it isnt something that we can fix by getting out more, or exercising more or loosing weight so we will feel better or ...the best one I get is "it is all of that medication you take" when Lord knows I take the very minimum possible of pain medication and would be sicker if I didn't take the other. That one actually ticks me off pretty bad and I cannot tell you how many times I have heard that from my family. They assume because I take a handfull of pills each morning and night I must be loading up on pain medication when it is actually not pain medication at all.

I think the despression hits much harder because sometimes you just don't have the energy to deal with things. You are just so exhausted it takes over. I really hate when that happens.

Hang in there and vent away hon!! If nothing else, we can just lean on each other.

Melting in the Dallas Heat! 105 degrees
Erin
Dallas TX

Last edited by ErinS64; 08-13-2007 at 11:07 AM.

 
Old 08-21-2007, 11:17 PM   #15
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Erin, this is my first attempt to post! First I want to say how truly sorry I am for how horrible you feel. I was down in bed for almost a year about 2 years ago, so PLEASE know that it CAN get better. I am the type of person who has ALWAYS been in control, loved hard outdoor work, always worked and took care of my children who are now grown and have children of their own (yes my precious grandchildren ) anyway, I honestly thought I would NEVER get back on my feet. I have not been officially diagnosed with Lupus but I am way over due for another blood test. My illness and back surgeries sure feel like it ruined my life..and my ability to work. I was having some exhaustion problems before my first back surgery, I recovered from that nicely but later had to have a second surgery and recovered from that one pretty quickly(I returned to work after my first two surgeries feeling pretty well) then once again had even WORSE problems and had to have my hardware taking out and new put back in. It must have been a drug induced flare that I had, that's all we can figure out. I was unable to go back to work after my last surgery. My back slowly recovered but I was a TOTAL MESS. First I lost a lot of blood in my last surgery then got a blood clot. Thank God they took care of that but the whole time I was totally in another world and having hallucinations, horrible fatigue, pain everywhere and a horrible memory problem. I do not recall being in the hospital, just tiny bits and pieces. Anyway Erin, I came home and like I said and was in bed for almost a year. My husband took care of me while no one could figure out why I could NOT get back on my feet. I had to quit my job, apply for disability and have been on pain meds and anti depressants all this time. It was not quite a year I was in bed, I'd say a good 9 months when I started getting back on my feet slowly. My life as I knew it was gone, just GONE. I didn't even recognize my life anymore. Between what I could not do because of my back and what I could NOT do because of extreme exhaustion and pain, I was just in shock for the longest time. I was a strong woman and really NOT that old, only 51, it all changed in that one hospital visit. I suspect it would have happened eventually anyway, but BOOM, overnight I had a life that I didn't understand how in the world I got there or when I would get better or IF I would get better. I lost a lot of my muscle mass from being in bed for so long and I was weaker than a tiny sick kitten. SLOWLY as the months passed by I started getting out of bed more and more. When I could get out and drive I would nearly fall asleep driving many many times (not sure why) and I would come home from a simple outing and just collapse for days. Anyway, the bad storm is over for now (thank God) and I can do things, nothing very physical but I can do things again. I can drive myself again, do my grocery shopping, get my hair cut, all those things that I took for granted. I still pretty much collapse for a couple days about every 2 weeks at least. My pain has improved some but not too much. I take a Medrol Dose Pack every three months to help with the pain and I just take the exhaustion day by day. I felt like a 90 year old woman, or what I thought it would feel like to be that age. Talk about being depressed and angry. I just pretty much gave up. And I agree, my family is understanding, but they CAN NOT understand what we go through. I don't have enough make up anymore to cover my butterfly rash and HORRIBLE rash on my neck. I was sure I was dying. What else could make me feel so HORRIBLE? Well, finally after testing me for a year they did say it was an auto immune disease and this last time my ANA was up some. Lupus,,,not me! Well yes me, (more than likely anyway). But now I can go to family functions, well most of them, sometimes I can't stay long but at least I can go. I can even go shopping now, not for long , but I can get some groceries and things we need. I can get up and get dressed for Heaven's sake!!! Months went by and I had to REALLY REALLY push myself to get a shower in every few days and I only got dressed for a Dr. appointment. BUT I am better now, when you think you've had all you can take, and life doesn't really even seem worth while, just out of the blue I got my life back. NO, it's NOT the same life. I have limitations from surgery too so I can't do many things I need to do and that drives me crazy!!! But I've had to learn to live with it. It scares me TO DEATH to think THAT can and very well may happen again. Whether it was a flare or what, no one knows, but I DO KNOW, I'm afraid it will happen again, so I try real hard to enjoy every day even if it's a day I'm so tired I can't get out of bed, I also have restless leg syndrome so that makes it real fun! But after reading how you are and many others' are and remembering where I WAS, I am SO thankful to be where I am right now. My memory has improved but still needs work (as you can probably tell how out of order this reply reads) and you know what else? My memory has improved but still needs work,,,heehee,,I gotta laugh sometimes or I'll go NUTS! I will pray for you and all the others who are suffering so much. No one can understand us like WE do, you are right about that. NO ONE. Please keep your chin up and know that you just might get better and enjoy life again, well, maybe not your "normal" life heck I forgot what normal is, but enjoy life as much as you can. Definitely better than it is now. I hope that happens for all of US. We all need a break from this thing. At least from the worst of it. I read many posts today and realized I sure am NOT alone AND I am not as bad off as I could be or WAS. Thank you all for sharing, like I said this is my first time doing this and all of your posts touched my heart. I share your pain and frustration. I send sincere blessings to all of you and hope you can all get some relief. Guess that's all we can ask for. Blessings and love to all of you.

 
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