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Aurelia

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Feb 23, 2017
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DX FIBRO
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Country
AUS
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?
 

diamond

Legendary member
Joined
Sep 18, 2015
Messages
1,547
Reason
DX FIBRO
Diagnosis
01/2008
Country
UK
State
anywhere
Hi Aurelia..first may i say welcome and im so sorry you have this huge array of symptoms..REally its impossible for any of us to say if all these symptoms can be atributed to fibro but its certainly possible that many of them can.

I met someone at a fibro support group and her symptoms that led to her diagnosis were all gyny and much less body pain. However you have had a diagnosis of endometriosis so there must be a specialist and scans that can determine where its come back and what the best course of action is for that part of your probelms/

The pain and skin burning could be fibro...not so sure about the bruising although i have lately started to bruise when i scratch my skin on my legs and i know that a condition where patches of skin go dark like bruising can be a symptom of fibro.

I am surprised in a country like Australia you cant get someone to help you...sorry if i missed it in your post but have you seen a rheumatologist?

A rheumy is most likely to deal with test and scan to rule out all other conditions and is probably the only person who will give you a fibro diagnosis.

Im not sure how it works in OZ but if you research your local hospitals and find a rheumy that most importantly believes in fibro..you can always ring his/her secretary and make enquiries first.

If you can afford private treatment maybe you can look further afield for the best fibro rheumy you can get to.

I wish you so much luck..whatever you have clearly you are really suffering..its affecting your mood ability to work and you have all the added financial worry on top.

Can you access a councellor to support you through this maize of issues until you find a way through to a place where you can get a diagnosis and make future plans.

Do you have a good friend or family member who can support you and go with you to appointments.

Please stay here if nothing else we are a bunch of supportive understanding people who get what you are going through..gentle hugs
 

diamond

Legendary member
Joined
Sep 18, 2015
Messages
1,547
Reason
DX FIBRO
Diagnosis
01/2008
Country
UK
State
anywhere
Hi Aurelia..first may i say welcome and im so sorry you have this huge array of symptoms..REally its impossible for any of us to say if all these symptoms can be atributed to fibro but its certainly possible that many of them can.

I met someone at a fibro support group and her symptoms that led to her diagnosis were all gyny and much less body pain. However you have had a diagnosis of endometriosis so there must be a specialist and scans that can determine where its come back and what the best course of action is for that part of your probelms/

The pain and skin burning could be fibro...not so sure about the bruising although i have lately started to bruise when i scratch my skin on my legs and i know that a condition where patches of skin go dark like bruising can be a symptom of fibro.

I am surprised in a country like Australia you cant get someone to help you...sorry if i missed it in your post but have you seen a rheumatologist?

A rheumy is most likely to deal with test and scan to rule out all other conditions and is probably the only person who will give you a fibro diagnosis.

Im not sure how it works in OZ but if you research your local hospitals and find a rheumy that most importantly believes in fibro..you can always ring his/her secretary and make enquiries first.

If you can afford private treatment maybe you can look further afield for the best fibro rheumy you can get to.

I wish you so much luck..whatever you have clearly you are really suffering..its affecting your mood ability to work and you have all the added financial worry on top.

Can you access a councellor to support you through this maize of issues until you find a way through to a place where you can get a diagnosis and make future plans.

Do you have a good friend or family member who can support you and go with you to appointments.

Please stay here if nothing else we are a bunch of supportive understanding people who get what you are going through..gentle hugs
 

Aurelia

New member
Joined
Feb 23, 2017
Messages
3
Reason
DX FIBRO
Diagnosis
00/0000
Country
AUS
State
ACT
Hi Willow,

Thanks for replying to me. I was really hoping that someone here could say they've experienced the same thing as me and it was Fibro. I've been to a lot of specialists, but once they learn that I have Endometriosis, they don't look any further. They seem to think that every symptom I have must be from that. I'm actually really shocked by the lack of response to telling (And showing) these people my bruises and the symptoms that most definitely aren't Endo.

I have not had a good run with my various doctors/specialists and the main hospital here in Canberra is extremely unsympathetic to someone who has Endometriosis. I'm not quite sure why that is. I was even flat out rejected by several Gynaecologists, who read about my condition in my doctor's referrals, and said that my symptoms were too complex and too much trouble. Each time I see a new doctor, when the last one has given up on helping me, they're great at first, but then they speak to the previous doctor and they adopt his option. They just don't want to deal with someone who has had a chronic pain condition for more than a decade. On the times that the hospital has admitted me to the Gyne wing, very little was done to even help me. Because I was put in a Ward with pregnant women, despite my painscore, the nurses seemed to care more for the Mother's. I was often attended to last, even when curled into a ball and crying with agony. This happened on four different admissions to that Ward. I do not like hospital.

When I was in hospital back in December, I was actually FORGOTTEN. My doctor sent me to the hospital and I was put into an area for monitoring patients with severe pain. I was visited by a few doctors and then they mysteriously stopped turning up. The Gyne doctors didn't want me and said that (Baring the Endo), they couldn't find anything. They honestly didn't try. They handed me to the Gastroenterology department, who did a colonoscopy and said it wasn't an issue there. I could no longer eat anything solid without throwing up everything and resulting in increased pain and was living on milk, soup, and water. I was left hovering between departments and forgotten in my hospital bed for a week and a half, till my nurses finally got a hold of a doctor and told them I was still there. They transferred me to the Gynecology Ward for AN HOUR and then told they couldn't help me and sent me home. I left doubled over in agonising pain, in a wheelchair. 10/10 painscore. I have been sent home from the emergency department twelve times in the last two years, with excruciating pain. They do a blood test, urine test, give me some Endone which never worked, and then said they can't help me, go see your General Practitioner. It's incredibly discouraging that no one seems to want to deal with me.

I finally got into a Pain Clinic and met a doctor who wrote all of my symptoms and medical history down and then told me she'd see me in three months. She took me off of a medication that was helping me and put me onto Lyrica, which I have trouble breathing on. They won't take me off of it. My General Practitioner doctor has been left doing everything to help me, but she's running out of options.

There are probably better doctors in Sydney, but I don't know if any here in Canberra who can help me and neither does my doctor. I unfortunately don't have private insurance, due to loosing my job so often and not being able to afford the pay it. Thank you, I'll look into a Rheumatologist.

I've been to a few Psychologists and didn't find that they helped. It's very hard to explain your pain and suffering to someone who has never experienced it. I'm sure that you've all gone through that too. Talking it all out just makes me feel worse, because it focuses on everything going wrong in my life.

My boss is currently trying to find a legal way to fire me over my absences from being in hospital and surgery and days off when I just couldn't take the pain.

No, my family and friends have had it with me being sick and in pain all of the time. This has been going on for years. I can't even mention it anymore, without people getting angry at me. I've lost many friends over it and even a family member. I can't mention it at work either and they're incredibly unsympathetic. I have a teammate who has a hip injury and thinks that he knows how my pain feels. He says if he can work in pain, then I can too. My other teammate says that all my pain can be solved by eating and exercising (He's an ex fitness trainer). I DO eat and exercise well and I told him that those aren't going to stop painful ulcers from growing all over my insides from the Endo, but he's insistent. I'm pretty much alone here, getting to my appointments, and dealing with my pain. I live alone with my two cats.

I will definitely stay around the forum to talk to you all and offer support where I can. It's good to be around people who know exactly what I'm going through. *Hugs everyone*

Aurelia
 

diamond

Legendary member
Joined
Sep 18, 2015
Messages
1,547
Reason
DX FIBRO
Diagnosis
01/2008
Country
UK
State
anywhere
Oh Wow I cant believe how dismissive everyone is being...doctors family thats tragic!

Please please find if at all possible a rheumy and before you decide who to see try ringing the hospital rheumy secretary and ask for her advice as to who best to see with unexplained chronic pain and mention maybe fibro.

Try being super polite and super smoooozy as sometimes the nicer and more kind of flattering you are you might get a better response!

You could start a thread asking for good rheumys in your area on this site.

We dont have lots of Australians but you never know if one person might give you a recommendation....or have you tried a pain clinic?

Even your own doctor could refer you surely to a pain clinic...as its cruel to leave some one suffering and searching for answers for this long.

The other thing is maybe don't mention the endometriosis and concentrate on the other pain and symptoms when reporting your concerns.

Maybe start researching better help in Sydney if you think maybe different care and expertise there. I know that means travelling and im not sure if you are up to long distance or the expense.

If you want to private message me so you have someone to talk to feel free to do so.

How f
 

vickythecat

Senior member
Joined
Jan 5, 2017
Messages
364
Reason
DX FIBRO
Diagnosis
01/2013
Country
EU
State
Earth
I think most of us on this forum have been on our own rollercoaster of unsuccesful and frustrating doctor visits, this feeling and confirmation that the people who are there to listen to us, educated and trained for yearsm dismiss our complaints and always blame that one confirmed illness. Most of us have a long history of illnesses, chronic diseases, stories of injuries, emotional trauma etc.

Like it is in your case with endometriosis, after my fibro diagnosis, all my complaints have been blamed on fibro as well, without ever testing it, examining me. They heard 'fibro', they blamed everything on fibro = IBS, nerve pain, tingling, tendinitis/bursitis, a body that won't heal right after an injury etc. Before that, all my fibro symptoms were blamed on my depression/personality disorder. Sure, they are all related but doctors should also keep an open mind about things. And as a patient, we have the right to demand exactly that.

I also agree that you should look up a good rheumatologist in your region. Write down your complaints. Demand all the blood work, imaging tests etc. And demand a treatment plan.

We also have to remember that doctors are humans too and whenever we go there, prepared with our long list of complaints, injuries, back illnesses etc. they often get overwhelmed as well. Often they are learning as they go along. I am sure they have most likely never had a patient like us.

So stay adamant, plan your visit well beforehand, and stay calm during your appointment. We have to stay strong....
 

medicmurphy

Senior member
Joined
Feb 15, 2017
Messages
205
Reason
DX FIBRO
Diagnosis
00/0000
Country
Can
State
Alberta
Aurelia,

Your medical history is the saddest I've read. I truly feel for you. There is no doubt something is going on that needs to be diagnosed sooner than later. Have you been tested for Lyme disease? Or anemia? There are different types of anemia. Iron dificiency, B12 dificiency, and Pernicious anemia. (Also B12 deficiency but from a different etiology.)
Respectfully, have you undergone surgery to remove the fibroids? Or perhaps a partial or full hysterectomy to relief some of your painful symptoms? If this is too bold a question I apologize profoundly.
Please keep us informed as to the progress you make on a possible diagnosis. The bruising is particularly curious. If it ends up being from Fibro then I must say we've discovered another symptom. Some of what you're describing can be clearly stress related ie, hair loss. And you're without question have plenty of reason for stress. Another suggestion, have you had your Thyroid levels checked? Graves' disease can cause thinning hair and bruising. I can't remember if you mentioned this in one of your posts. ;)

Hang in please. Hugs
 
Last edited:

Aurelia

New member
Joined
Feb 23, 2017
Messages
3
Reason
DX FIBRO
Diagnosis
00/0000
Country
AUS
State
ACT
Hi everyone,

Thank you so much for the replies. I'll reply to you all separately tomorrow, when my pain goes down enough. I've had some very bad developments that I needed to share. I'm extremely upset and depressed right now. The pain has been agonizing for days now, due to the stress and upset.

I went to my doctor and suggested that she look harder into why I'm bruising so much and always am in pain and exhaustion. I suggested that a friend thought it might be Fibro and could it be an option, and also asked for a referral to see a Rheumatologist. She gave me a little smile and patronising look (And this was from a doctor who has been really great at supporting me, but I think she's getting sick of my problems like they always do after a few months and I don't get better) and said that she doubts it's Fibro or that I need that sort of specialist.

I had a blood test a few weeks ago and got a call from the nurse to come in for an 'unurgent appointment'. It took more than a week to get in. Monday this week I saw her and she tells me that something showed in my blood test. They are certain that I have a blood disease called Von Willebrand. I would call that urgent, wouldn't you?

Most people are at around 90%-100% of something in the blood and I am at 43%, so that's incredibly low. It causes severe bruising, heavy menstrual bleeding and some other symptoms. As I also have most of these from Endometriosis, I am losing a lot of blood and have a deficiency in my clotting agent. It's no wonder the blood doesn't stop for minutes after a blood test and yet the doctor and nurses never thought that was odd! It's not curable and I will have it for the rest of my life, as I will Endo. Some symptoms still do not fit however, so my doctor said that there could very well be something else wrong with me. I find out just how bad things are in a couple of days, after another blood test. I'll keep you up to date.

Now, what could be worse than finding out I have another disease? Getting fired again. Three weeks ago, months after successfully passing my probation in my new permanent position, I am suddenly put onto a second probation. I did not agree to it and I'd been there more than 6 months. I'm suddenly told that they had all these issues with my performance, that I'd had absolutely no clue about and nobody had mentioned for the last half a year.

You know how I said that my boss was trying to fire me, due to the absences I'd had for surgery and sick leave when I was in too much pain to go to work? Well, she found a legal way to do it. If you're on a probation, your boss can fire you at any time.

Monday morning, only a few hours after finding out I have a blood disease, I get called into the main office and fired. My boss is in another state, so she did it by phone. She made up a bunch of stuff that I wasn't suitable for the job and that she'd had complaints about my service to customers (Not likely, as I've been in customer service for 14 years and have won awards for how excellent I am at it). Everything she listed was due to my illness and an ongoing neck and back injury that I'd had for the last 6 months and had received while delivering computers for work. I got injured at THAT JOB. I am a Field Engineer, which means that I fix computer issues on my main site and any other they send me to. Due to the fact that I was unable to lift over 5 KG and my duties were restricted so that I didn't get worse, my boss saw me as dead weight. She kept trying to push me into lifting things too heavy and my teammates wanted me gone so they didn't allow me to take my legally required breaks. They were actively trying to make me quit through harassment and bad work conditions. I was to have a 5 minute break every hour and a half hour break every 3 hours, as mandated by my doctor and the law. I rarely got them and we were not allowed to leave our Desktop Support area unattended, so when my teammates were gone for hours fixing issues, I was trapped at my desk and unable to get up and walk around. They did it on purpose. I often got no lunch and I couldn't go to the toilet area to take my painkillers, so I was in dreadful pain all day long. I couldn't even go for toilet breaks! I want allowed to answer phone calls even from my doctor.

I was on the verge of a complete mental breakdown and had been forced to tears many times over the last month. I'd go home right to bed at the end of the work day and cry and curl into a ball till the pain went down enough around the middle of the night for me to get my dinner. Then I'd force myself to work the next morning (Sometimes literally crawling from the bed and kneeling in the shower because I had no energy to stand and the pain was too bad) and the cycle would repeat again. I was also being bullied by my male teammates, who didn't believe my pain and thought that a woman shouldn't be in IT. My complaints to my boss went ignored.

Between my injury and my illnesses, I was in the most horrible pain all day long and I had to smile and give the best service and act like I wasn't in pain. I did it because I loved my job. Absolutely loved it. I helped their business significantly also, with all of my ideas for improvement. My boss had said that she wanted me to be a Manager there some day. In my second probation review a few weeks ago, I was told that I didn't smile enough and that I was forbidden to show that I was in pain, because people were getting the impression that I didn't want to help them.

I fixed everything my boss told me was a problem, no matter how ridiculous, and she still fired me without mercy. She had no intention of keeping me and gave me only 2 weeks to fix issues. I have a neck and back injury, Endometriosis, and Vonwillebrand disease and I am now unemployed and cannot even afford to feed myself and my cats, pay rent, or buy medication. I live alone. I have barely any friends remaining and even my parents are sick of me being ill and loosing jobs and they blame me for loosing this one. They said I didn't try hard enough to get out of bed and go to work when I was in pain. I am looking into legal action, but I don't know how successful I will be, given that my boss used a legal loophole to fire me. They will cover up all the harassment and as I was not allowed to go back to work after being fired, all my email evidence is now deleted along with my network account.

I am utterly crushed by the world right now. I really feel like there is no hope anymore and that I will just keep being trapped in a cycle of pain and suffering and getting fired from jobs that I love. I hate that this keeps happening because of malignant things growing in my body and being in so much pain and exhaustion that I just can't even get out of bed most days. There has to be more to life than this.

Thank you for listening to me again. I really needed to get this off of my chest before I break down again.

Aurelia
 

diamond

Legendary member
Joined
Sep 18, 2015
Messages
1,547
Reason
DX FIBRO
Diagnosis
01/2008
Country
UK
State
anywhere
Poor hair quality and thinning is another fibro symptom....mine started to break and get very brittle and not grow past a certain length the same time as my fibro started. Luckily i have very thick hair but it still falls out if i brush it and run my fingers throug hmy hair loads of strands come out..and in the shower its literally a handful and all over my shoulders.

I know from previous threads many of us suffer from this.

medicmurphy is right though there could be many other explanations for your array of symptoms..i hope you soon make some progress finding doctors that will help you.
 

KatarinaB

New member
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Mar 10, 2017
Messages
6
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Other
Diagnosis
00/0000
Country
US
State
NY
I'm really sorry to hear about all that you have been through, Aurelia, and I hope that you are able to receive the care and treatment that you deserve soon. On the topic of the symptom of hair loss, I agree with willow and medicmurphy. I personally have experienced a bit of hair loss which I suspected was mostly stress related. This was because I was working a lot while dealing with many of the other symptoms, and after a while it becomes a very heavy burden that begins to wear you down. My hair loss could have very easily been the breaking point for me, but a friend advised me to invest in some short wigs that fit my natural hair style.

It might not seem like much, but this really came in handy with my fibro and it helped me switch focus away from my hair loss to more pressing issues and that really began to help me
 

Hope4all

Active member
Joined
Oct 31, 2016
Messages
52
Reason
DX FIBRO
Diagnosis
01/2006
Country
US
State
Michigan
Hi! I see it's been a while since your post. Sorry to respond so late, but I wanted to reach out to you and tell you that you have my sympathy. So sorry others are not responding compassionately to your severe illness. I wanted to tell you that endometriosis was one of the earliest diagnoses I got, and also interstitial cystitis (bladder disease) and migraines. I had the surgeries to remove the extremely painful endometriosis, but I also used enbrel, which is not standard, but I believe it put me into remission for the endometriosis. Birth control is a common treatment for endometriosis, but you have to be careful it doesn't make other conditions worse (like migraines). You have to find the right one for you. Some of your symptoms definitely sound like they could be fibromyalgia, but you really need a good doctor. I think the rheumatologist suggested by someone else is a good idea, if you call and make sure they treat fibromyalgia. I live in the U.S., so I'm not sure how your medical system works, but I would persist if I were you, because you really need better treatment. There are so many things they can try. I suffered for five years in severe pain without much help because I didn't understand how doctors communicate and because I was distressed because of the pain and exhaustion, some of them thought it was emotional. I also didn't understand that emergency rooms and urgent cares sometimes only screen for emergencies and cannot diagnose chronic problems like endometriosis and fibromyalgia. If your family won't help, is there a support group nearby? The bruising does not sound familiar though. I wish you the best.
 

Hope4all

Active member
Joined
Oct 31, 2016
Messages
52
Reason
DX FIBRO
Diagnosis
01/2006
Country
US
State
Michigan
Oh, also my irritable bowel syndrome went away when I stopped eating gluten. Wheat showed up on an allergy test for me and gave me runny nose, hives and diarrhea. And I have the throwing up problem, and for me it is gastroparesis, which can be treated with reglan. Hope this helps!
 

Hope4all

Active member
Joined
Oct 31, 2016
Messages
52
Reason
DX FIBRO
Diagnosis
01/2006
Country
US
State
Michigan
Taking biotin helped my hair loss. Maybe that would help you?
 

Hope4all

Active member
Joined
Oct 31, 2016
Messages
52
Reason
DX FIBRO
Diagnosis
01/2006
Country
US
State
Michigan
Sorry to keep adding. I also had a rare infection and sepsis. Don't know if it leads to this or not.
 
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