# losing it



## joey (Sep 7, 2000)

I've been ignoring this problem in hopes it would just go away but I guess it won't. I've been very very depressed lately. When I'm home or at work I don't want to be there and I don't feel like going on vacation either. I think I've been going to so many doctors lately in hopes they would tell me I don't have fibro, that they found out what I really have and can cure it. My gastro has done so many tests there are none left so when I go in to see her (for IBS) she doesn't really have any knew advice. She doesn't know anything about fibro either. I don't think she quite understands the amount pain I have. She wants me to go back to the Rhematologist. After Friday's appointment I sunk a little deeper. I guess I lost all the hope I had left.I sometimes try to eat like a normal person only to get really sick and realize I can't do that. I wish I could go out, I think about it alot but I have problems with eating out and alcohol is out of the question. What fun would I be? Maybe I should ask my doctor out so she would really see how bad I feel.lolAnyone have any suggestions on how to get out of this slump?Joey


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## Susan Purry (Nov 6, 2001)

Joey, I'm sorry you're feeling so down and despirited at the moment. It's a pretty natural result of living with pain and chronic illness. As far as I can see, *in my humble opinion, *there are three issues here. 1)Accepting/not accepting a diagnosis of Fibromyaliga. 2)Management/not managing the symptoms of Fibromyalgia. 3)Depression. *First things first* it can be SO hard to accept a diagnosis of something which is chronic, extremely debilitating, limits our lives, is incurable and is what may appear to be untreatable or unmanageable. So, the natural result of being faced with this prospect is to NOT accept the diagnosis. This can be helpful, in that you may be misdiagnosed and your lack of acceptance drives the way forward to a proper diagnosis. However, if you really DO have Fibromyalgia (i.e. all other possibilities of diagnosis have been excluded through testing for other conditions), this lack of acceptance can be harmful. What I mean by harmful is that it can stop you finding out ways of managing the Fibromyalgia and living with the illness. Here is an article which you may find interesting. It doesn't specifically talk about acceptance/non-acceptance of diagnosis, but it does talk about the stages of dealing with diagnosis and the illness. It is about CFS but it really relates to any chronic condition. http://www.ibsgroup.org/ubb/ultimatebb.php...ic;f=9;t=001100 2) *Managing/Not Managing * the Fibromyalgia. Ok, so it's true that there's no cure for Fibromyalgia. But there ARE things that can be done to manage the symptoms. These included restoring normal sleep patterns (often through the use of low dose of an antidepressant such as amitriptalyine/Elavil - I really must learn how to spell that properly!) and managing pain (painkillers, phsyical therapy and soothing things such as heat/cold pads). You can learn to live with Fibromyalgia. And by 'managing' the illness, you may start to feel better with it. For example, ignoring the problem and pushing on in life exhausting yourself is going to make you feel physically worse. Excepting some limitations or changes and pacing yourself may make you feel physically better. Seeing the rheumatologist again and asking specifically about _management_ may be helpful to you. A rheumatologist can usually advise you how to _manage_ the symptoms, even if they can't offer you any treatment to cure the Fibromyalgia. 3)*Depression* feeling down is a natural result of living wiht chronic illness and pain and having no solutions to them. I reckon we all get down from time to time because of this. And that's okay. I also reckon this is a natural part of the diagnosis-acceptance/non-acceptace-management journey. If you are clinically depressed though, you may be feeling utter lack of hope, lack of interest in your daily activities and lack of self-worth. This is a part of the health problems that CAN be treated, and you may feel a lot better as a result. Medication or counselling can be really helpful and get you back on track. These are just my suggestions from personal experience Joey. They might not help you or be applicable to you, but maybe they will. Best wishes


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## squrts (Aug 14, 2000)

(((joey)))chin up,i know its a ######,but as time passes you find little ways of dealing with this that make it liveable.and as a recovering alcoholic i can tell you with certainty,you can still have fun without alcohol!


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## joey (Sep 7, 2000)

Thanks Susan and Denny.Susan, it looks like I am in Phase I although I saw alot that pertains to me in all of the stages. I just have been seeing too many doctors and nutritionists. They all have different opinions. Some believe in the diagnosis and some just don't. I've been told by three natural doctors (muscle testing and whole blood analysis that I have parasites). I've been tested zillions of times by doctors and nothing shows up. I noticed alot of people don't comprehend the amount of pain we have. Also I hide my pain very well. No one at work knows I have FMSCFS, they only know about the "stomach" problems I have. I couldn't handle all the questions and comments. All the different reactions would just confuse things more. I don't know if it is just here but people I speak to want all the answers to the questions that I can't even get from the doctors. My Rheumatologist is moving to another building and it will take a while for me to get an appointment. This is the doctor I really need to see. This is the one that diagnoised me with FMS. I have FMS,IBS-C,& CFS.Joey


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## weener (Aug 15, 2000)

Joey,Just want to say that I understand what you are going through because I went through the same thing. The steps that Susan posted are exactly what I went through and am still going through. Accepting the diagnoses was one of the most difficult things for me to accept, because that meant that I had to mourn for my body that I could no longer have. Once I realized that, I concentrated on learning how to deal with fm and how to manage it on a day by day basis. It's true that living with chronic pain would make anyone depressed, but we manage to somehow keep on going and hide it very well. I think people who don't live with chronic pain, mistaken acute pain for chronic pain. Living with a sore back for a week is different than living with pain 24/7. I also take anti-depressants, and know that it has helped me tremendously. I'm not here to condone them, but from personal experience it has helped me get over those humps. The hardest part for me was the stigma attached to taking them. Now, I couldn't imagine my life without them. I think we all have to experiment and find what works best for ourselves and go with it. One day we'll beat this.


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## Feisty (Aug 14, 2000)

Joey,I really couldn't have said it any better than the way Susan and Weener did. I've been there, too and I am still there---each day is a new "fight" to not let it get to me. Some days are good, others not.Try to see if you can get in ASAP with your Rheumatologist (explain to them that you cannot wait long due to the severity of your depression, etc.) Perhaps they'll get you in sooner.Another thought---a pain-management Doctor or clinic. Some people have gotten very good results by working with someone who knows and understands the level of fatigue and pain and the demands of your everyday life and job. They can help you work at getting yourself to the point where you feel like you ARE managing this.Take care.Karen


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## joey (Sep 7, 2000)

Thanks all of you for posting.Weener, the only med. anti-depress/anixety? that I can deal with is Xanax. I only take a small dose because the next day I'll drag even more.Feisty, "each day is a new fight to not let it get to me". That statement is so true! I called the "Rheumies" office today and was able to speak to my doc. She cleared up some of my questions and I do feel a little better. I was told to call back next week to make an appointment. They are moving this w/e. Its just day to day always something different going on. I don't why but every time I have a different symptom I think I have something else wrong with me. (Probably hoping its something else that could be cured).The hardest thing for me is getting up in the morning. I feel like I havn't slept. I really think I could sleep all day and all night.







Joey


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## Feisty (Aug 14, 2000)

Hi Joey!Glad to hear you have made some progress in your quest for answers and understanding and possibly management of your symptoms.Sometimes these Doctors don't quite want to grasp the idea that we are human beings who HAVE to work and support ourselves, etc. and we NEED their help in making our day to day existence manageable for OURSELVES, not for them!!! Keep at 'em. Don't let them undermine things. You know your body best and you know exactly how you feel. I hate it when they try to tell me how I feel------it's like, wait a minute here-----is it your body or mine?!I could not get a half way decent nights rest without taking Clonazepam at bedtime (actually, I take it about an hour before I want to go to bed). I also take 2 muscle relaxers (Skelaxin) and sometimes, if I'm real achey or sore, I take one or two Extra-Strength Tylenol. Advil works well for me, but it upsets my stomach and my Doc told me it's a no-no because of the Barrett's Esophagitis that I have---it will only make it worse over time. By taking the Clonazepam (anti-anxiety med.) and the Skelaxin, I can at least feel tired and exhausted enough to get about 6 hours of decent rest on most nights. Without it, I sleep so fitfully, that I may as well say I haven't slept at all.You may have to be quite adamant about something to help you sleep without leaving you feeling so "drugged" in the morning. Even though I feel on most days like I want to sleep in forever, once I am up and moving, I no longer feel so tired. It's a matter of moving, I guess. Some of the exhausted feeling you are experiencing could be more from the depression than from lack of rest. Then again, depression causes lack of rest, etc., etc. So, you probably have several issues to address at once. But make your Doc understand exactly how you feel, and why, and what your day to day existing involves (job, etc.). It's so easy for them to say "try this and call me in a month". Tell them straight out you need someone who is going to work WITH you to figure out what the best coarse of treatment for you is. And it may take a while. Try not to get discouraged. We've all been there and many of us are still "there". Hey, after all, they don't call me Feisty for nothing!!!







I loose the fight sometimes, but then I pick it back up------that's what keeps me going.Take care and keep in touch.You're doing okay







----take it one step at a time.Karen


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## Susan Purry (Nov 6, 2001)

Joey, how are you doing these days? Have you been able to see your Rheumatologist this month? Take care,


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## trbell (Nov 1, 2000)

Joey, I think you and I have some things in common. We're males with IBS-C and CFS and most of the treatments out are for women so we just have to hope they'll think of us, too. One suggestion I have would be to see someone who really knows antidepressnats forthis part of your medications. There are many that just don't work for IBS-C.tom


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## joey (Sep 7, 2000)

Susan, My Rheumatologist is moving. She will be teaching, doing research, and have a limited practice. I called on the first of the month and was told that they meant the 1st of July. So, no telling how long it will be before I can see her again. I did call twice to make sure they will move my records with her and I asked my primary for another referral in case I can't see her soon.I have been doing quite poorly, trouble with foods, digestion, IBS, muscle pain and colds. I saw a blood doctor a few months ago and she found that my Immunoglobin IgG was low. The test was repeated three more times. All were low but she said they were not low enough to treat. I went back to my primary and was told it should be treatable. He sent me to an Immunologist. The Immunologist looked at my tests and said that is a problem and can be treated. I had copies of some other bloodwork that he also looked at and found some other count that was low and ignored by the doc. who ordered that test. He sent me for some more bloodwork that he wanted to check before treating the IgG. He gave me a shot to boost the immune system until I can get treated(the same shot they give my Aunt to prevent pneumonia). I feel a little better. I don't know if its the shot or the hope of some relief of these colds and fatigue. I should have more results in about a week.Tom, you're right, we do have alot in common and there are alot of remedies for women. I use St. John's Wort and I find it helps. I don't stay depressed all the time and when I am I really think it has alot to do with feeling sick all the time (like the flu) and feeling abnormal. I don't know about where all of you fibromites live but here you're not socializing if you don't eat. Most of the food down here is very well seasoned and I just can't handle it. I started making a list so I can try and pinpoint what foods bother me and which ones I can get away with.Joey


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## trbell (Nov 1, 2000)

Joey, You might want to look into the LEAP program or get ahold of Brostowich's book. food intolerances and mast cells and such can play a role here. I'm curious about wjat your immunologist had to say. It's too bad about socializing in New Orleans and food - it makes me think of the time I was there and could still eat. tom


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## Feisty (Aug 14, 2000)

Hi Joey!I was wondering if we'd hear back from you. Gosh, sounds like you have been going through a lot. Could you have picked up some kind of bacterial or viral infection similar to the pneumonia you mentioned and that's what's bringing you down so bad?The food intolerance you and Tom mentioned are things to really think about. Although I tested positive on the blood test for Celiac Sprue, when biopsies were done, they came back negative. But I have found that I am very sensitive to wheat and gluten. Instant bloating, etc. Dairy does it, too. And yeast containing foods. Need to stay way from them as much as possible and unfortunately, lately I haven't been a good girl!!! I've made myself a promise that next week I'm going to start "juicing" again. Using fresh carrots, pineapples, etc. The juices are delicious and nutritious. Maybe that will help shed a few of these extra pounds. Now that I'm getting my energy (some of it) back after that bowel obstruction and subsequent surgery, I am walking again, too.You and Tom are right when it comes to differences between what works for men and what works for women. I believe that is so true. Hope you can find some answers and some help soon.Please keep us posted.Thinking of you.Karen


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## trbell (Nov 1, 2000)

Joey, You might want to post a question to Mike Nolomotil and have him explain the differences between food allergies and food intolerances.tom


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## joey (Sep 7, 2000)

Well, I went back to the Immunologist for more results. After reviewing some other tests he said that what I have is hypogammaglobulinemia. Gee, sounds awful. Means my Immunoglobulin IgG is low. He said the B cells were OK which indicated I developed this condition and was not born with it. He wants to retest in 4 weeks and see if the pnemonia shot boosted the immune system up or not. One option he mentioned was to get monthly IV's of IgG from pools of blood donations. I think NOT! Its funny that Fiesty mentioned something about Celiac sprue because he asked me about this. Although my tests were negative I have been very skeptical of gluten. I did a search on ask.com and found an article on altered immunity and leaky gut(see below). It speaks about FMS, CFS, IBS and etc. The diet consists of no sugar, flour, GLUTEN, dairy, high fat, caffeine, alcohol, etc. I don't if theres anything left to eat but I am SERIOUSLY researching this. Joey Altered Immuno and Leaky Gut


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## Feisty (Aug 14, 2000)

Joey,This book might be interesting for you to look at. You might even find it at your local library instead of having to buy it at a bookstore. I bought my own 3 years ago and I have to say---this book makes sense. It is hard to follow the diet at first, but it did help me a lot----then I fell off the wagon and I keep telling myself I HAVE TO get back on it again. When I followed the advice in this book, I felt so much better and my skin glowed, my hair was shiney and healthy looking and even my fingernails started getting a little stronger!!! And, besides that, I lost 32 lbs. and look darn good for an "old broad".







The book: Eat Right 4 Your (Blood) Type by Dr. Peter J. D'AdamoI'm a blood type O and his diet plan for me was right on!!!!


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## trbell (Nov 1, 2000)

hate to say it, but the leaky gut thimg sounds like the one pill fixes everyting approach? be cautopus.tom


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