Aurelia
New member
- Joined
- Feb 23, 2017
- Messages
- 3
- Reason
- DX FIBRO
- Diagnosis
- 00/0000
- Country
- AU
- State
- ACT
Hi everyone,
I'm new and from Australia. I am so glad that I just found this forum.
A friend recommended looking up Fibromyalgia when I was discussing the symptoms of my ongoing illness and pain on my Facebook. I post there to try and cope with what I'm going through and my online friends really keep me going when I fall into a depression over the pain. She's actually not the first to suggest that I might have that, but I haven't really looked into it seriously until now, because I just can't take the pain anymore. I'm about to loose yet another job due to my unbearable pain and needing to take days off. I can't even get out of bed at these times. I have lost 9 jobs in the last 7 years. I can't seem to get any doctors to take my symptoms seriously, nor do any more than a simple blood test (Which usually reveals nothing). I don't know if I have Fibro, or even how to get help, but I thought that you would be the experts to ask. Sorry, there is a little backstory, so please bear with me.
First of all, I was diagnosed with Endometriosis in 2010 and have had several surgeries to cut it out of me. I have most likely had it since I was a teenager, but it went undiagnosed. I am now 39. It keeps returning in my uterus and bowel and it's suspected that it might be on my bladder, along with large ovarian cysts (They are generally growing to 11 cm diameter by the time they are cut out), fibroids, enlarged uterus and dreadful daily pain in my abdomen. My stomach swells up often as if I am 6 months pregnant (I have been told by a doctor that this symptom may not be caused by Endo, but by something else). My last surgery to remove the cysts was just this last November. In addition to this, I have had some ongoing symptoms that just don't fit Endometriosis. Unfortunately I have been unable to find a doctor who is even interested in looking into what is making me so sick that I consistently loose my jobs over, due to the pain and having to take sick days. Once I mention that I have Endo, they just put it all down to that and look no further. My Gynaecologists have also not looked into another possible cause of my pain. I have just begun to go to a Pain Clinic and I am seeing a Gynaecologist, but it is just for Endometriosis. My doctors at the hospital are honestly sick of me turning up there in severe pain all over my body and they just keep sending me home. I have been labeled a hypochondriac, because I cannot prove my pain. They have done Endoscopies, Colonoscopies, and a multitude of ultrasounds, but they don't want to operate on me again. I don't either. I have told the doctors and surgeons about these symptoms below, but they are only doing standard tests that turn up nothing. I don't want to mention Fibro to them, in case they think that I'm self-diagnosing. I want them to come to a conclusion themselves. It might not even be that, but I'd be relieved to find out just what it is. I'm so sick of being put on painkillers and it's not healthy for my body. If I can get a diagnosis, then I can get proper treatment.
Now, for the symptoms that aren't to do with Endometriosis. I've been getting these every 2-3 months (Was 3-4 months but getting worse) for at least 15 years now. Although the worse flare ups show up every few months, I do have most of the symptoms every day, though to a less painful degree.
I get big bruises coming up all over my body, in particular on the legs from the waist down to the feet, and the arms from my fingers to my shoulders. Some come up at my hips and stomach, backside, and back. I am NOT hitting into things. They just show up and most don't even hurt. I don't even notice them half the time, till someone spots the bruising and asked what happened. I remember a doctor way back asking if I had an abusive boyfriend who beat me. The bruises have only begun showing up in masses for about the last 4 years.
I get these along with a dreadful exhaustion and the muscle aches and skin pain. I feel like someone beat me up. Some areas go numb for a few hours, like my toes and fingers, or leg, or my face. I get dreadful cramps from the hips to the ankles, that are there all the time and get worse at night. My joints hurt and feel stiff. I feel like I have the worse flu imaginable. All the time. The skin is sensitive as hell, like someone is holding a lighter to it, or it feels bruised but nothing is there. My migraines get worse around this time (I have them every day, all day. I have been to many Neurologists, and had dozens of different drugs to stop the pain, but never found a medication that helps me. I am currently on nothing for them. I gave up and so did my last Neurologist), including severe neck pain and back pain, and I get really pale, which I guess could be anaemia. I get dizzy, faint sometimes, and have nausea and vomiting. I get more confused and unable to think clearly and my memory is terrible. I will forget things only moments after being told something, which is really embarrassing at work when I've been told how to do something and I just draw a blank. I barely sleep anymore, due to pain, but also just not able to drop off. I'll get maybe an hour a night, or have insomnia for several days. If I do somehow get to sleep, it is very deep and when I wake I become sluggish and exhausted to the point that I can't get out of bed. My depression seems to get far worse around the time I get the bruises and it's way more severe than anyone knows. I've been hiding just how depressed I am and the bad thoughts I've been having. I get so desperate for the pain to stop. I have flares of anger and fall into crying at the slightest thing to upset me. I also gain weight like I've pigged out on a truck load of chocolate ice cream. I have bowel and bladder issues, where I have bad constipation of months, followed by bouts of diarrhoea. One of my kidneys is shrunken and scarred and down to about 12% function. My hair also tends to fall out on a regular basis. I also get sick a lot with flu and viruses. Anything illness that goes around, I will catch. It took years for some of these symptoms to show up and gain in intensity and now it's unbearable. I'm unable to function at work or in my private life from the pain. No medication that I am put on for the pain tends to help much.
I have tried healthy eating and dieting from exercise and it helps a little, but not a lot. I have no social life left to speak of, because my job and the pain take all of my energy out of me. I come home to my bed right from work and curl into a ball and try and get my pain levels down. I am rarely successful and go to work again in agony. I am just so depressed and stressed from it all to really enjoy anything anymore. I used to be an author and had a following, but I just can't seem to enjoy it anymore. It was the one thing that truly gave me any joy and now it's gone. I just can't think through the pain and the depression is just eating me up inside. I am constantly stressing about my bills, work, and my medical problems.
The symptoms that flare up every few months usually last for a few weeks at an unbearable intensity and then go down in intensity and I get my energy back and the pain goes down (It never goes, it just lessons a great deal. I have many if these symptoms all of the time, but it's more bearable), I loose the weight, and I feel more healthy and energetic until the next time. It's getting way worse and the bruising is happening more often. Doctors seem utterly disinterested in investigating my condition, after I tell them that I have Endometriosis. Emergency at the hospital also tune out when I tell them I have Endo and they say they can't help me, despite me trying to explain that so many of my symptoms just can't be that condition. As far as I'm aware, Endo doesn't cause bruising over the body, nor burning skin. Some of my symptoms match, but not all. The flare ups and bruising are starting to happen every 2 months now, so more often. I'm worried.
I used to be really healthy and thin and fit and then in 2006, I caught a rare strain of salmonella and septecemia and landed myself in ICU for a few weeks, with the CDC attending and me in isolation. I had contracted the ONLY CASE of Asian salmonella in all of Australia that year. They never did find out how I got it, because I never travelled overseas. I almost died from septic shock, because I thought that I had the flu (The symptoms were almost identical) and I lost the use of my legs for six weeks. I had barely any feeling in them and I was in a wheel chair and then crutches as I learned to walk again. The CDC took my blood tests every week for 6 months, I think to monitor how my body got rid of the salmonella. I can't help but think that this incident caused me to become unhealthy and I've just had more illnesses and symptoms every year since. Could salmonella and septecimia have made me susceptible to Fibromyalgia?
I apologise for the super long post. I just wanted to give you an idea of what's been happening in the past and now and the symptoms I'm experiencing on a daily basis. I need help so, so badly, and my pain is getting so much worse. I feel utterly defeated from trying to get doctors to take me seriously and do something. I just don't know what to do anymore. Please, could this be Fibro? And if so, where can I get diagnosis and help here in Canberra, Australia?
I'm new and from Australia. I am so glad that I just found this forum.

First of all, I was diagnosed with Endometriosis in 2010 and have had several surgeries to cut it out of me. I have most likely had it since I was a teenager, but it went undiagnosed. I am now 39. It keeps returning in my uterus and bowel and it's suspected that it might be on my bladder, along with large ovarian cysts (They are generally growing to 11 cm diameter by the time they are cut out), fibroids, enlarged uterus and dreadful daily pain in my abdomen. My stomach swells up often as if I am 6 months pregnant (I have been told by a doctor that this symptom may not be caused by Endo, but by something else). My last surgery to remove the cysts was just this last November. In addition to this, I have had some ongoing symptoms that just don't fit Endometriosis. Unfortunately I have been unable to find a doctor who is even interested in looking into what is making me so sick that I consistently loose my jobs over, due to the pain and having to take sick days. Once I mention that I have Endo, they just put it all down to that and look no further. My Gynaecologists have also not looked into another possible cause of my pain. I have just begun to go to a Pain Clinic and I am seeing a Gynaecologist, but it is just for Endometriosis. My doctors at the hospital are honestly sick of me turning up there in severe pain all over my body and they just keep sending me home. I have been labeled a hypochondriac, because I cannot prove my pain. They have done Endoscopies, Colonoscopies, and a multitude of ultrasounds, but they don't want to operate on me again. I don't either. I have told the doctors and surgeons about these symptoms below, but they are only doing standard tests that turn up nothing. I don't want to mention Fibro to them, in case they think that I'm self-diagnosing. I want them to come to a conclusion themselves. It might not even be that, but I'd be relieved to find out just what it is. I'm so sick of being put on painkillers and it's not healthy for my body. If I can get a diagnosis, then I can get proper treatment.
Now, for the symptoms that aren't to do with Endometriosis. I've been getting these every 2-3 months (Was 3-4 months but getting worse) for at least 15 years now. Although the worse flare ups show up every few months, I do have most of the symptoms every day, though to a less painful degree.
I get big bruises coming up all over my body, in particular on the legs from the waist down to the feet, and the arms from my fingers to my shoulders. Some come up at my hips and stomach, backside, and back. I am NOT hitting into things. They just show up and most don't even hurt. I don't even notice them half the time, till someone spots the bruising and asked what happened. I remember a doctor way back asking if I had an abusive boyfriend who beat me. The bruises have only begun showing up in masses for about the last 4 years.
I get these along with a dreadful exhaustion and the muscle aches and skin pain. I feel like someone beat me up. Some areas go numb for a few hours, like my toes and fingers, or leg, or my face. I get dreadful cramps from the hips to the ankles, that are there all the time and get worse at night. My joints hurt and feel stiff. I feel like I have the worse flu imaginable. All the time. The skin is sensitive as hell, like someone is holding a lighter to it, or it feels bruised but nothing is there. My migraines get worse around this time (I have them every day, all day. I have been to many Neurologists, and had dozens of different drugs to stop the pain, but never found a medication that helps me. I am currently on nothing for them. I gave up and so did my last Neurologist), including severe neck pain and back pain, and I get really pale, which I guess could be anaemia. I get dizzy, faint sometimes, and have nausea and vomiting. I get more confused and unable to think clearly and my memory is terrible. I will forget things only moments after being told something, which is really embarrassing at work when I've been told how to do something and I just draw a blank. I barely sleep anymore, due to pain, but also just not able to drop off. I'll get maybe an hour a night, or have insomnia for several days. If I do somehow get to sleep, it is very deep and when I wake I become sluggish and exhausted to the point that I can't get out of bed. My depression seems to get far worse around the time I get the bruises and it's way more severe than anyone knows. I've been hiding just how depressed I am and the bad thoughts I've been having. I get so desperate for the pain to stop. I have flares of anger and fall into crying at the slightest thing to upset me. I also gain weight like I've pigged out on a truck load of chocolate ice cream. I have bowel and bladder issues, where I have bad constipation of months, followed by bouts of diarrhoea. One of my kidneys is shrunken and scarred and down to about 12% function. My hair also tends to fall out on a regular basis. I also get sick a lot with flu and viruses. Anything illness that goes around, I will catch. It took years for some of these symptoms to show up and gain in intensity and now it's unbearable. I'm unable to function at work or in my private life from the pain. No medication that I am put on for the pain tends to help much.
I have tried healthy eating and dieting from exercise and it helps a little, but not a lot. I have no social life left to speak of, because my job and the pain take all of my energy out of me. I come home to my bed right from work and curl into a ball and try and get my pain levels down. I am rarely successful and go to work again in agony. I am just so depressed and stressed from it all to really enjoy anything anymore. I used to be an author and had a following, but I just can't seem to enjoy it anymore. It was the one thing that truly gave me any joy and now it's gone. I just can't think through the pain and the depression is just eating me up inside. I am constantly stressing about my bills, work, and my medical problems.
The symptoms that flare up every few months usually last for a few weeks at an unbearable intensity and then go down in intensity and I get my energy back and the pain goes down (It never goes, it just lessons a great deal. I have many if these symptoms all of the time, but it's more bearable), I loose the weight, and I feel more healthy and energetic until the next time. It's getting way worse and the bruising is happening more often. Doctors seem utterly disinterested in investigating my condition, after I tell them that I have Endometriosis. Emergency at the hospital also tune out when I tell them I have Endo and they say they can't help me, despite me trying to explain that so many of my symptoms just can't be that condition. As far as I'm aware, Endo doesn't cause bruising over the body, nor burning skin. Some of my symptoms match, but not all. The flare ups and bruising are starting to happen every 2 months now, so more often. I'm worried.
I used to be really healthy and thin and fit and then in 2006, I caught a rare strain of salmonella and septecemia and landed myself in ICU for a few weeks, with the CDC attending and me in isolation. I had contracted the ONLY CASE of Asian salmonella in all of Australia that year. They never did find out how I got it, because I never travelled overseas. I almost died from septic shock, because I thought that I had the flu (The symptoms were almost identical) and I lost the use of my legs for six weeks. I had barely any feeling in them and I was in a wheel chair and then crutches as I learned to walk again. The CDC took my blood tests every week for 6 months, I think to monitor how my body got rid of the salmonella. I can't help but think that this incident caused me to become unhealthy and I've just had more illnesses and symptoms every year since. Could salmonella and septecimia have made me susceptible to Fibromyalgia?
I apologise for the super long post. I just wanted to give you an idea of what's been happening in the past and now and the symptoms I'm experiencing on a daily basis. I need help so, so badly, and my pain is getting so much worse. I feel utterly defeated from trying to get doctors to take me seriously and do something. I just don't know what to do anymore. Please, could this be Fibro? And if so, where can I get diagnosis and help here in Canberra, Australia?