There are many diseases that are classified as autoimmune diseases. Many of these diseases share symptoms. Gretchen over at autoimmunemom.com sent us this infographic that displays what she calls 12 “super symptoms.”
There are many diseases that are classified as autoimmune diseases. Many of these diseases share symptoms. Gretchen over at autoimmunemom.com sent us this infographic that displays what she calls 12 “super symptoms.”
Leave it up to me to try and mess with mother nature. I should know better that when I try to do something to benefit me in the future it is going to backfire and cause more problems, especially when it comes to my health. We are preparing for our big cruise and I’m scheduled to have my monthly cycle during the trip and the last thing I want to have while cruising on the high seas is to deal with that stuff. I want to be able to wear my swimsuit, get in the water, and fully enjoy all of the things that we have paid a lot of money for.
So my doctor and I got together and concocted a plan to trick mother nature and to revamp my menstrual cycle so that I am not bleeding on our trip but naturally, the whole thing is blowing up in my face, as everything does when it comes to my health.
The goal was for me to start taking the birth control pill a few months before the trip to get my cycle switched around. But because of how my cycle has been running, I had to start the birth control pill on the FIRST day of my period. The doctor said that normally when you have to do this, it will shorten or completely stop the period within a few days. I was thinking to myself, “This is awesome! Anytime I can get away with only a few days of a cycle I am thrilled!” Then I was supposed to take three weeks of the pill, then stop and my period was supposed to come by this coming week which would be the 11th. Then I was supposed to start taking the next pack and have my period start and end a week before we leave. Sounds like a perfect plan, right? Of course it SOUNDS perfect but has it worked out that way? Of COURSE NOT!
This is what has happened. I started my cycle on April 20th and started the birth control pill the same day as instructed by the doctor. I had a full period for 8 days, spotting for 3 days, then started a full period again and am still bleeding as of today, May 7th. So I have basically been having a period for almost 3 weeks. I called the doctor on Thursday, explained the situation and she said we needed to change the plan. So now today I was to start taking 20 days of Premarin (estrogen) and then I am to take 7 days of progesterone and hopefully I won’t be bleeding on the trip.
Nothing is ever easy, is it? To top it off, with all of this bleeding, I have been extra fatigued, having severe headaches and am now thinking maybe I should have just left well enough alone. If I go through all of this and still end up having a cycle on the trip, I will be really bummed. Live and learn!
Interstitial Cystitis patients have been told for years to avoid certain foods and drinks that can cause flare-ups of the bladder disease, making us urinate more, have more pain, and more pressure. We all know that this list of foods include:
Many patients have reported over the years through surveys that they have been able to control their IC symptoms by watching their diet and avoiding trigger foods.
In 2009, the ICA Complementary and Alternative Medicine (CAM) Survey reaffirmed these findings. Eighty percent of the 2,000 respondents said that by making changes to their food and beverage selections, people with IC—especially newly diagnosed patients—can help control their symptoms.
But like other chronic illnesses, no two patients’ symptoms alike and there are other foods that may trigger flares in some IC patients. According to the ICA:
How much, how often, and the specific combinations of foods and beverages that affect symptoms are different for each person with IC.
For some patients, fresh foods may cause flare-ups but when they cook that same food, they are able to tolerate it well. If you are an IC patient who is also lactose intolerant or has milk allergies, you may find that your IC symptoms will worsen if you eat/drink dairy products. Gluten has also been another cause for flare-ups in IC patients.
In my own situation with IC, I will find that sometimes I can tolerate a certain food or drink for long periods of time but then all of a sudden I can’t. Then I have to stop eating or drinking that item for a while. I normally can go back to eating/drinking it again once my flare-up is gone, but I just never know for sure what is going to set the IC off. It is a very complicated illness and watching our diet is very crucial.
Earlier this week, I posted about my visit at the doctor’s office and my latest diagnosis of Major Depressive Disorder secondary to chronic illness. I have now had three full days of time to reflect, and to try and catch up on sleep, and as I think back, I can slowly see now the gradual onset of the MDD over the past four months.
I’m not ashamed of what is happening to me because it is something that is beyond my control. As a chronically ill patient, there are so many things physically wrong with me on a daily basis I’m amazed that my brain and body didn’t succumb to MDD a long time ago. I had dealt with depression before on a very minor scale from time to time related to my illnesses but this is by far the worst that I have ever experienced in my entire life. I would say this is even worse than the crying spells and emotional feelings I was having after I gave birth to my son due to the hormonal changes us women usually experience postpartum.
I think the stress around the holidays with my husband losing his job was the beginning and having all of that mess to deal with. I often times will feel that I am alone when having to deal with these situations because my husband is the type who doesn’t like to deal with the negative things in life, so for him, he just goes about and does his normal routine and life doesn’t change. For me, however, I’m left to try and put the pieces back together and to make things work when I have no idea how to make it happen at the time.
I also started getting sick with my sinuses and having other flares and issues but I realize now when I look back that I had completely lost my desire to participate in things and I still feel that way. Normally, I LOVE getting on my computer, writing, keeping my blog updated, and socializing on Facebook & Twitter and lately, I may go 3 – 4 days without even getting on the computer. I have no desire to do the one thing that has kept me going all of these years.
I also have still been on my dieting plan but I stopped losing weight after the beginning of the year. I have been struggling with trying to rotate how I’m eating my food, change my exercises, drinking more water – everything I can think of but nothing. Now I know that it is because of the MDD that I have not been able to lose anymore weight. There is another symptom that helps complete the puzzle.
With the CFS & Fibromyalgia flares, I will still have the want and the desire to do things – it’s just that I physically am not able to. I have been losing the want and desire to do everything that was important to me. Everything has become forced, if I can get myself to do it at all. Work is where I have really noticed this change because I’m the type to look for something to do to keep busy when there aren’t any customers. Lately I have found that I have even lost that drive.
The fatigue has also been different. To be honest, it kind of feels like the fatigue I felt when I first found out I was pregnant with Logan – it’s that fatigue where you can just sleep and sleep. At night, however, I feel my insides going what feels like 100 MPH. I’m used to not sleeping from the CFS & Fibro, but I think it is just making the depression worse. Today I had the house to myself the whole day – no one was here at all – and I was able to get caught up on some sleep finally.
Another indicator that I now know I can probably attribute to the MDD is my increase in pain that I have been experiencing. My doctor noted that I started complaining to her about an increase in pain around the middle of January and every apppointment since then, she has noted that my pain levels have not improved.
I have been on my increase of Prozac since Wednesday, but unfortunately, it is going to take a lot longer than a few days for me to notice any difference – or so the doctor says. I want this feeling to go away so badly. I hate feeling like this. I feel like my insides are so heavy. It feels like there is a brick setting in the bottom of my stomach and I have to hold back the tears when my husband and son are around. I feel like crying all of the time and I don’t even know why.
I knew something was different with my body and that something was not right. Normally this time of year I start feeling better and have a lot more energy. This is so unlike me. I am trying to put on a brave front and a happy front around my family because my husband told me last week that I “bring him down”. I wonder if he feels bad about saying that now that he knows I have a chemical imbalance and can’t control it?
I attribute some of the MDD to the pressure I have been feeling lately by him to “get well”. He wants the Sandy back that was able to go and do a lot of things last summer but I can’t always be like that. I tried to tell him that. I feel lost – like I have lost my support system, my best friend in a sense. I want to be well more than anything in this world. But the illnesses are not going to go away and pressuring me to “get well” is only going to make it harder for me to improve.
What is Major Depressive Disorder? (Source: Wikipedia)
Major depressive disorder (MDD) (also known as recurrent depressive disorder, clinical depression, major depression, unipolar depression, or unipolar disorder) is a mental disorder characterized by an all-encompassing low mood accompanied by low self-esteem, and by loss of interest or pleasure in normally enjoyable activities. This cluster of symptoms (syndrome) was named, described and classified as one of the mood disorders in the 1980 edition of the American Psychiatric Association’s diagnostic manual. The term “depression” is ambiguous. It is often used to denote this syndrome but may refer to any or all of the mood disorders. Major depressive disorder is a disabling condition which adversely affects a person’s family, work or school life, sleeping and eating habits, and general health. In the United States, around 3.4% of people with major depression commit suicide, and up to 60% of people who committed suicide had depression or another mood disorder.
The diagnosis of major depressive disorder is based on the patient’s self-reported experiences, behavior reported by relatives or friends, and a mental status examination. There is no laboratory test for major depression, although physicians generally request tests for physical conditions that may cause similar symptoms. If depressive disorder is not detected in the early stages it may result in a slow recovery and affect or worsen the person’s physical health. Standardized screening tools such as Major Depression Inventory can be used to detect major depressive disorder. The most common time of onset is between the ages of 20 and 30 years, with a later peak between 30 and 40 years.
Typically, patients are treated with antidepressant medication and, in many cases, also receive psychotherapy or counseling although the effectiveness of medication for mild or moderate cases is questionable. Hospitalization may be necessary in cases with associated self-neglect or a significant risk of harm to self or others. A minority are treated with electroconvulsive therapy (ECT), under a short-acting general anaesthetic. The course of the disorder varies widely, from one episode lasting weeks to a lifelong disorder with recurrent major depressive episodes. Depressed individuals have shorter life expectancies than those without depression, in part because of greater susceptibility to medical illnesses and suicide. It is unclear whether or not medications affect the risk of suicide. Current and former patients may be stigmatized.
The understanding of the nature and causes of depression has evolved over the centuries, though this understanding is incomplete and has left many aspects of depression as the subject of discussion and research. Proposed causes include psychological, psycho-social, hereditary, evolutionary and biological factors. Certain types of long-term drug use can both cause and worsen depressive symptoms. Psychological treatments are based on theories of personality, interpersonal communication, and learning. Most biological theories focus on the monoamine chemicals serotonin, norepinephrine and dopamine, which are naturally present in the brain and assist communication between nerve cells.
Symptoms & Signs
Major depression significantly affects a person’s family and personal relationships, work or school life, sleeping and eating habits, and general health. Its impact on functioning and well-being has been equated to that of chronic medical conditions such as diabetes.
A person having a major depressive episode usually exhibits a very low mood, which pervades all aspects of life, and an inability to experience pleasure in activities that were formerly enjoyed. Depressed people may be preoccupied with, or ruminate over, thoughts and feelings of worthlessness, inappropriate guilt or regret, helplessness, hopelessness, and self-hatred. In severe cases, depressed people may have symptoms of psychosis. These symptoms include delusions or, less commonly, hallucinations, usually unpleasant. Other symptoms of depression include poor concentration and memory (especially in those with melancholic or psychotic features), withdrawal from social situations and activities, reduced sex drive, and thoughts of death or suicide.
Insomnia is common among the depressed. In the typical pattern, a person wakes very early and cannot get back to sleep, but insomnia can also include difficulty falling asleep. Insomnia affects at least 80% of depressed people. Hypersomnia, or oversleeping, can also happen, affecting 15% of depressed people. Some antidepressants may also cause insomnia due to their stimulating effect.
A depressed person may report multiple physical symptoms such as fatigue, headaches, or digestive problems; physical complaints are the most common presenting problem in developing countries, according to the World Health Organization’s criteria for depression. Appetite often decreases, with resulting weight loss, although increased appetite and weight gain occasionally occur. Family and friends may notice that the person’s behavior is either agitated or lethargic.
The life of chronic illness is always a challenging one and it has never been easy for me and the older I get, the harder it seems to get – not only on me but also on my husband. He has been my main support system (along with my biological family) but lately I have been feeling a lot of pressure by him to “get well”. I have felt repeatedly over the past few months that he is pushing me to feel better when I have been steadily going downhill once again.
I am the type of person who typically holds my emotions inside and I do not scream, yell or go on a rampage when in reality, I would probably feel a lot better if I could just get it all out. Things would always get heated like that with my ex-husband and I hated having a relationship like that.
When having illnesses like CFS & Fibromyalgia, particularly CFS, stress is so damaging. For one, our bodies are not equipped to handle stress because of the hormone deficiencies we have. This is hard for my husband to understand. He doesn’t realize that the amount of stress that I feel is beyond my control because my body is physically not able to function with it because of the illness. It’s not an excuse – it’s the reality of ME/CFS. So many things happened at one time that would have created stress for anyone – he lost his job right around Christmas; I had to research and find new health insurance coverage and prescription coverage for the three of us; I had to try and re-budget all of our finances; and I also started working more hours to help pick up some of the financial slack. What would have been a lot of stress, but MANAGEABLE stress for someone healthy, was just too much for a sick body. I tried at the time to tell him all of this. But his idea of helping was to tell me that, “I know you can handle it and figure it all out”.
Then I started having mini-flares of my ME/CFS & Fibromyalgia, then the Interstitial Cystitis flares came back and I was getting very overwhelmed. Then to top it all off, I was very sick with my sinuses and it took two rounds of antibiotics and a week’s worth of steroids to finally get rid of that problem. But I haven’t been right since then.
A few weeks ago, I found that I was starting to cry a lot and I am someone who normally does not cry very often at all. I started having anxiety attacks and I have been feeling completely stressed out at work when it is busy when normally that doesn’t affect me. I have worked with the public for years and have had years of experience doing what I do now. All of a sudden seeing a line of people at my register over the past couple of weeks makes me panic. I think I have done a pretty good job of hiding it so far but I knew I needed to get to the doctor before I had a meltdown in front of everyone at work. That is the last thing I need to happen.
I had also started noticing that my pain has steadily been getting worse and my doctor noted when she saw me today that she had noted in my file that I had mentioned an increase in pain back in January. So I have been dealing with my body not being able to handle stress, more pain, lack of sleep, all of the crying, and my husband getting on me. I knew I needed to get to the doctor and fast.
When I went to see her today, she told me that I had Major Depressive Disorder secondary to chronic illness. To be honest, I wasn’t surprised because I knew that I was feeling different and it was more than my normal chronic health issues going on. I have felt like I have all of the pressure on me at home to get better and that I am being blamed for being sick that it is just making things worse for me emotionally as well as physically.
I told her how I have been feeling: the anxiety, the stress, the pressure to be well from my husband, his getting on me all of the time about my job – it has just all built up and I have gotten to where I have lost the joy I once had. Yesterday I had another breakdown because my husband got on me while I was talking to him on the phone on my way to work about how I’ve been different and how I need to cut my hours at work and how I need to get well. He was not happy about me going back to work in the first place but I need something besides being at home all of the time. I can’t bear the thought of not having somewhere to go and something to do a few hours a week – and we need the income. So I had my hours cut once again.
But I’m going to get sick regardless of whether I’m working or not. I’m not going to get better – these illnesses are not going to go away. As a family we have to learn to live with them and deal with them. It seems like it is only the things that I want to do for myself (like work – which is really a necessity) that he always has a problem with. If it is something that he wants me to do that has to do with him, then I never hear anything about how I need to get enough rest or I need to take it easy.
The doctor also told me that MDD is common in chronic illness, particularly after a patient has experienced a period of time where they have felt really well for a while and then has a relapse. She said couple that with everything else that has been going on and the fact that I have been sick so long – it is just a lot for me emotionally and physically.
To treat the MDD, the doctor raised my prescription of Prozac (which I was on for the severe PMS) from 20 mg. to 40 mg. a day. She wants me to monitor myself on that dose for the next four weeks and then call her. If I am starting to notice an improvement, I am going to stay on just the 40 mg. of Prozac. If I do not notice any improvement, or not any major improvement, she is going to add Wellebutrin with it. She also thinks that therapy is a good idea because of everything I have to deal with physically and also for us as a family.
When one person gets CFS, Fibromyalgia or any type of illness that is chronic, it becomes a family illness. Everyone who we are close to in our lives becomes affected by our physical limitations and how the illnesses also can change us emotionally as well. I admit that I am a moody person and I am blessed that I have the family, siblings, son and husband that I have. They all have accepted me for who I am, even though my diseases and my years of health problems has not been easy on them either.
I have been very fortunate in that my family has always been supportive and has never doubted the fact that I am sick. I have talked to many, many chronic illness patients whose families have been horrible to them and treated them absolutely terrible, called them “lazy” and practically written them off because they didn’t believe they were sick. I have never had to deal with any of this, thank God.
CFS & Fibromyalgia are so complicated, my husband will tell me often that he feels helpless. He wants to do something to help me but he can’t. He just has to watch me suffer. Then when the flares turn in to a week(s), it feels as though I am in a pressure cooker because I can see how badly these illnesses are scaring him. He will start asking me the second I wake up in the morning (and I mean practically the second my eyes open – no kidding!) – “Are you feeling any better yet?” I always say, “Uh – give me time to wake up to see if I know!”
Then the questions will continue on and off all day and all evening – “Feeling any better yet?” The thing is he knows how I feel by looking at my eyes – my eyes give it away. It’s just this desperation for me to feel better that he has this hope and it makes the pressure for me to feel better get worse. He has told me before that he fears that I will die from these illnesses during a flare because he has seen me so sick; sicker than he has seen people with terminal illnesses. So this is on his mind every single time I have a flare, which is a lot. That’s a lot for someone to deal with.
That knowledge makes me feel guilty and when I see my illnesses affecting my husband and son like this, it is a lot of pressure to feel well. There are times when I will just lie and say that I’m starting to feel better even if I’m not to help relieve some of the pressure because seeing relief on their faces is like the sun coming out after months of rainy days. Do any of you ever feel this way?
There are many times I will think about something that bothers me regarding my health issues and feel this desperate need to write about it. But as I’ve mentioned before, it can be challenging and frightening putting your life out here in the Internet world for people to judge and scrutinize. But then I think about all of you – the loyal readers & friends I have made on this journey & it keeps me motivated to continue telling my story.
I receive many emails. Most of them are encouraging & uplifting notes from readers who thank me for writing & sharing my story, fears & realities that they feel they cannot put into words. But by me telling my story, they realize they’re not alone in this complicated world of chronic illness. I then receive emails from those who are seeking medical advice, which I can’t give but I try to lead them in a direction where they can find help. I wish I were an expert or physician & could take each one of these individuals under my wing but I can’t do that. I enjoy reading both of these types of emails and receiving these keeps me motivated to continue with the website when I receive the remainder of the emails I’m about to discuss.
The third type of email I receive is what I consider “fear mail” and not really hate mail. I call this type of email “fear mail” because the people who send me these emails rake me over the coals for how I post about my own experiences with CFS, Fibro & IC. These emails are criticizing me for how I try to work part-time; how I try to continue striving for something better when, according to them, I shouldn’t be. I’m allegedly making it hard for people with these illnesses to be taken seriously because of how I live or how I try to live despite my illnesses. I have even been told that I will probably affect people’s Social Security rulings based on some of my posts. Everyone with these illnesses are unique, we are all different and we all suffer to varying degrees. We all have different personalities as well. Some of us are just driven people and even sick, we are still driven to achieve whatever little we can & we fight like hell to get through each day. I will not lie or downplay or exaggerate how I feel or how I don’t feel, however. Part of my site is about MY experiences with chronic illness and these are my own experiences.
The last kind of emails I receive are the hate emails. Fortunately, these are the emails I receive the least but we all know how much something hateful and hurtful sticks in our minds for a long time. These are the emails that make me scratch my head and go, “HUH”?
In one day earlier this week I was sent a nasty email and was then blocked by someone on Twitter in the CFS/Fibro community for posting about the Fighting Fatigue Fighting Back Challenge(awareness campaign). Then I was reading where a fellow blogger was being harassed by supposedly loyal followers who are falsely accusing this person of excessive marketing of materials & trying to get rich off the backs of ill patients when it is obvious this person is not doing so (sorry – I will not mention any names!). All of this combined prompted my post When Did the CFS & Fibro Community Become So Ungrateful?
Look – I’m not doing this for money, any type of fame or self-glorification. My goal is & always has been to help myself & to help others deal with their illnesses by realizing their thoughts and feelings related to what they are going through is normal. How many of us thought we were really crazy until we read about someone else’s experience & shared that same feeling, emotion or thought ourselves?
I think a lot of the anger being placed on us “little guys” in the Internet world is misplaced. The CFS & Fibromyalgia community is always wanting three main things: better research/funding, increased awareness & understanding. These are all areas our big non-profit organizations are failing & patient advocacy has become the means of a lot of things getting done lately. It is the big non-profits to where the CFS/FM community needs to be directing their anger. For example, just recently the mess with the National Fibromyalgia Association that Selena has been keeping up on on her website at Oh My Aches & Pains & the controversy at the CFIDS Association can be found at these posts:
Bloggers & patients like myself are doing what we know how to do with little or no resources to try & accomplish where the big organizations have failed us. So awareness campaigns like the Fighting Back Challenge where people can share their stories of surviving and thriving despite their limitations has nothing to do with marketing, money or self-promotion. It’s not about me. It’s about the illnesses & helping others. That’s what it’s always been about and what it always will be about.
There are all kinds of people in this world and all of the positive, wonderful examples of human beings I have met on this journey far outweighs the criticisms & judgments. As patient advocates & bloggers for chronic illness, we have to be prepared for the price of making our lives public. But I’m tough and if I can handle three chronic illnesses I can get through the rough patches of negativity & occasional unkindness of others.
Thank you all for the last five years of wonderful support and kindness that many of you have shown and I’m looking forward to another five years with you all!
How many of us have heard people say, or have been guilty ourselves of saying that we have too much to do right now, too much life to live and that “I’ll sleep when I’m dead”? I would almost guarantee that probably just about every person with ME/CFS and Fibromyalgia has said that because of the Type A personalities most of us exhibit.
After all, it was this attitude that helped lead us to the unhealthy lifestyle that we find ourselves in now – pushing our bodies beyond the limits it was capable of producing and not taking enough time to rest – enough time to sleep. Then when the illnesses set in, the sleep disorders set in and we know all too well that by not sleeping the theory “I’ll sleep when I’m dead” will come sooner than later because of these issues.
But this message is being promoted across America that success is only achieved by working around the clock, going on very little sleep, because you will have “time to sleep later”. You need to work now. You need to push yourself hard for the short-term in order to have long-term gain. But for how many of us has this backfired? It did for me. Trying to achieve success and getting to the top fast so that I could have long-term gain only resulted in a life sentence of chronic health problems that I am reminded of every second of every day.
I believe in hard work and I believe in working for your goals. But I am so fed up with this crap being fed to people that working themselves into the ground is going to be beneficial in the long run when I have first-hand seen how much damage it can do permanently to a person’s body.
Is lack of sleep and lack of rest worth risking the rest of your life for? Because that is the path many are headed down – the same that I have to live and the millions of us with chronic illness.
Chronic – I hate that word and I hate what it means. Every time I find out I have developed yet another chronic illness, it is just another slap in the face of how I’m going to have to live the rest of my life with yet even more problems. The word means being doomed to a lifetime of medications, side effects, and more chronic illnesses from taking medications to treat the current chronic illnesses. It’s a maze I can’t even fathom getting through even on a good day.
I know that I do not talk a lot about the fact that I have Interstitial Cystitis on this website, even though I was extremely sick with the illness for a few years. Again – like CFS & Fibro, I believe that I always had IC, but just not a severe form until it got really bad in 2003. I was always having bladder and urinary issues from the time I was a child up until I was diagnosed. When my body starting shutting down in 2003 was when I began having the severe symptoms that left me lying on the bed writhing in pain in the fetal position. I was barely able to walk more than a few feet because the pain & pressure were so severe in my lower abdomen and vaginal area. I was going to the bathroom up to 60 times a day due to all of the pressure as well.
I did not respond well to any of the treatments the urologist had me on and I was even catheterizing myself daily with numbing medication directly into my bladder to try and get some relief. I didn’t go into remission from the Interstitial Cystitis until I started receiving the IV therapy from the Fibromyalgia & Fatigue Centers in Philadelphia in 2005 – 2006. From that point – up until the past month, I have only had mild flares of my Interstitial Cystitis for a few days here and there, nothing too earth shattering to get upset over and nothing really life changing.
Ever since I became sick with this sinus problem the other month, I noticed that my bladder was acting up again and pretty bad, too. The doctor checked for a bladder infection but found that there was no bacteria, so it was from an IC flare. I assumed that because I was sick, I would get over it quickly and that the infection was working it’s way through my bladder, as sickness sometimes does for those of us with IC.
But the longer time goes the worse it feels the flare is getting. I am drinking water like crazy trying to keep the burning in my lower abdomen and pelvic area to a minimum but it is getting unreal. I am starting to find it difficult to walk very far because of the pressure and I fear that if I don’t get this under control somehow, someway very soon, I will be in really bad shape to where I won’t be able to walk more than a few steps at a time.
When you go through a remission for that many years, the depression sets in when the chronic illness comes back and takes over your life again. That’s why I hate the “chronic” in everything that I have – it’s like it’s always there, lurking around the corner, just waiting to jump out at me at any time, anywhere.
I have three months until we go on our cruise and I have to have myself in good shape by then. I have worked so hard over the past several months to try and get my health on track, harder than I ever have before. But that doesn’t matter to chronic illnesses like Interstitial Cystitis. They will come in and take over whenever they want, however they want at any time.
I haven’t been to a urologist for four years so if I don’t get this under control and in remission soon I will have to get back to him to get put back on Elmiron. Elmiron is a medication that I took for IC before that helps to coat the lining of the bladder wall.
I am also trying to drink at least 5 – 6 bottles of water a day and I bought some marshmallow root from the local health food store. Marshmallow root can be made into a tea and it helps to soothe the bladder and it helps with the pain and burning a lot.
I have a great deal of information on Fighting Fatigue about Interstitial Cystitis. If you or someone you know suffer from this illness, you can click the link below and it will take you to the IC category:
The American Urology Association has finally released this month the long-awaited new clinical guidelines for Interstitial Cystitis/bladder pain syndrome! These new guidelines may be the most comprehensive clinical care article on IC written to date.
Included in the AUA clinical guidelines is new insight into diagnostic testing and a new six stage IC treatment algorithm that can be used by patients or physicians when considering treatment and pain management plans.
AUA DEFINITION OF INTERSTITIAL CYSTITIS
The definition for IC/BPS the AUA decided to use for their new guidelines was the definition first established by the Society for Urodynamics and Female Urology:
“An unpleasant sensation (pain, pressure, discomfort) perceived to be related to the urinary bladder, associated with lower urinary tract symptoms of more than six weeks duration, in the absence of infection or other identifiable causes.”
IS IC MORE THAN A BLADDER DISEASE?
The answer to that is still unknown. IC could be a primary bladder disorder in some patients and yet, for others, may have occurred as the result of another medical condition.
Citing several studies which explored the related conditions found in IC patients, the authors explored several theories, one of which is “IC/BPS is a member of a family of hypersensitivity disorders which affects the bladder and other somatic/visceral organs, and has many overlapping symptoms and pathophysiology.”
In the AUA guideline, pain is the hallmark symptom of IC/BPS, particularly pain with bladder filling. Pain can also occur in the vagina, uretha, vulva, rectum and/or throughout the pelvis. Urinary frequency is found in approx. 92% of IC/BPS patients.
Urgency is an often debated symptom because it is the primary symptom of overactive bladder, a condition often confused with IC. Yet, the authors make a critical distinction. Patients with IC experience urgency and then rush to the restroom to avoid or reduce pain whereas patients with overactive bladder experience urgency and rush to the restroom to avoid having an accident.
The AUA suggests that physicians complete a thorough history and physical examination of the patient. Symptoms should be present for at least 6 weeks (with no infection) for a diagnosis to be made. A physical examination of the pelvis should be conducted for both men and women and “the pelvic floor should be palpated for locations of tenderness and trigger points.”
Several conditions should be ruled out: bladder infection, bladder stones, vaginitis, prostatitis & bladder cancer.
“In general, additional tests should be undertaken only if the findings will alter the treatment approach.”
HYDRODISTENTIONS NO LONGER THE STANDARD
Cystoscopy and urodynamics, for example, are to be considered if a diagnosis of IC is not clear. The authors do note that cystoscopy helps to rule out other conditions which can mimic IC symptoms, such as bladder cancer or stones.
The presence of Hunner’s ulcers on the bladder wall will lead to a diagnosis of IC however the finding of glomerulations on the bladder wall during hydrodistention with cystoscopy is often vague, variable and consistent with other bladder conditions, thus the panel suggests that “hydrodistention is not necessary for routine clinical use to establish a diagnosis of IC/BPS.” Hunner’s ulcers are described in an acute phase “as an inflamed, friable, denuded area” or in a more chronic phase “blanched, non-bleeding area.”
Pain management can include the use of various medications, physical therapy and/or the relaxation of tense, painful muscles, biofeedback and a wide variety of other options. The guidelines encourage physicians to refer patients to other pain specialists if they are unable to provide an effective pain management strategy.
“Pain management should be continually assessed for effectiveness because of its importance to quality of life. If pain management is inadequate, then consideration should be given to a multidisciplinary approach and the patient referred appropriately.”
The panel suggests that the following treatments should not be offered due to the lack of effectiveness found in studies and/or the risk of serious adverse events. In these cases, the risk appears to outweigh the potential benefits.