Lellobeetle
Member
- Joined
- Jul 16, 2014
- Messages
- 12
- Reason
- DX FIBRO
- Diagnosis
- 08/2011
- Country
- US
- State
- PA
I've already been diagnosed with Fibromyalgia, after which I promptly pissed off my Rheumatologist by saying I thought nobody believed that to be a legitimate diagnosis. He said, "Well, I do."
I've always had bad luck with doctors. They always say I have an unusual case. Nothing is ever easy with me. When I was 13 I woke up with what I thought were some nasty mosquito bites. That kicked off a terrible month long battle with very serious hives. I could not even wear clothes or go to school. I had tons of tests and after they were brought under control and started going away, they just said it was autoimmune and I was not allergic to anything. That was just the start of my life with auto-immune problems. (Edit to add: I've now passed 30 years of auto-immune hives. I should throw myself a party and try to make it fun. If I knew then it would be a life-long battle, I'm not certain I could accept it.)
I always knew my system was not like everyone else's. I had to take a fan to summer camp (five weeks in the Texas Hill Country) each year when none of the other 300 girls took one. I could not regulate my temperature like others.
When I was 17 in college I would have my window open with it snowing outside and my fan on me while my roommate shivered. She loves to tell that story with great glee - I never had the heart to tell her how much it hurts me as it's a very clear indicator that before I even hit my 20's I was clearly symptomatic with some type of endocrine dysfunction.
By 25 I was gaining tons of weight and had stopped getting my period. By thirty I had stopped sleeping properly. In 1999 also at age 30, I had been diagnosed with Hoshimoto's Thyroiditis (autoimmune) and adrenal dysfunction. I never felt any better on thyroid meds but remember telling any doctor that would listen that if I didn't take my dexamethasone each night, I felt like my system didn't do its overnight work to refresh itself - I would "sleep" but not feel refreshed. Endocrinologist never commented on that - ever. Did I mention how much I dislike endocrinologists?
I had deep depression from about 20 to now (currently 44) but never got any help for it, despite even asking my parents for help - they weren't believers in psychology as they were from the school of suck-it-up.
I ALWAYS felt like there was something I had that nobody had been able to diagnose properly. :sad:
In 2006 I started getting gradually sicker and sicker. A lot of food made me sick. I would have very irritable bowel problems (not what I would label actual IBS) and it would be followed by vomiting. Especially in the morning I would throw up almost every day. I would brush my teeth and then throw up - and that's exactly what I would tell my doctor. I went to see him (my GP) over and over and over again. He finally sent me to a GI doc who did some blood work and and upper endoscopy and said you're anemic and we have to find out where that blood is going and we must do a lower endoscopy. All I wanted was my vomiting to STOP. He never "found" anything.
For 9 months that went on until I was so sick constantly that one day I called my husband and asked if he could come home because I was just sick as a dog. He came home and said I'm taking you to the hospital. On the way there I was completely griping saying, "I don't know WHY we're wasting our time - these damned doctors never find anything wrong with me. They're so stupid." My husband told me later I was slurring my words.
I had undiagnosed pancreatitis for NINE months. My blood sugar was 495 and I was DEEP into diabetic ketoacidosis. I thought because of my weight that I had "given" myself diabetes. My very stern mother was so upset as she thought the same thing. A few years later I happened to see another endocrinologist who told me, "Dear, you have type 1 diabetes. I did a GAD65 (a test that can tell if diabetes comes from an autoimmune source) test on you and it's off the charts." Literally the test range is 1-10. An 11 would be considered "off the charts" and my autoimmunity reaction to it was 927. No joke. They retested and retested just to be certain.
So, in 2010 I had gastric bypass - that almost killed me. I told my doc that I had had what doctors told me was autoimmune pancreatitis and that had lead to my pancreas being damaged. Doctors never listen to you, you know?
When I wake up I have a tube coming out of me - I ask what's this for? The doctor gripes at me about having to spend 45 extra minutes cutting scar tissue from around my pancreas. No Duh, man. I told you that I had it bad! My damn pancreas had eaten a hole straight through itself.
Each year I would get slower, sicker, in more pain, more depressed, less well all around. But, that gastric bypass really almost did me in. I couldn't eat or drink - even water. I would throw up constantly. And once I started, it would take me hours to get it to stop. It wouldn't be one big event and then over-with. It would be like baby spit up but like just foam (because I couldn't eat!) and it would go on for two, three, four hours. I had to work with a cup near me and learn to be very very quiet about it. I was so miserable.
Again, a couple years later that bariatric surgeon said, "Oh yeah, I've had a couple adrenal dysfunction patients since you and they both had terrible nausea just like what you reported." It's like if he hasn't personally had at least a few patients similar to you, he won't believe you just based on your reports. Makes me so angry sometimes.
So, I was in my Rheumatologist's office a year or two ago and he said you have Fibromyalgia and I said, "yeah yeah, nobody ever believes in that." And, frankly, I had so many things wrong with me I just never thought it could be explained by one (or even a few) things.
Then I started having so many problems with my balance and strength - if I get down on the floor I literally can not get myself up - and with stumbling and falling that I saw a MS doctor. I thought perhaps I have that.
Long and short - I finally started reading about Fibromyalgia and my adrenal dysfunction, terrible sleep apnea and mixed up sleep stages, depression, brain fog, depression, pain, and everything else can ALL be explained by Fibromyalgia.
I was so used to not listening to doctors that when one FINALLY got it right - I didn't pay any attention.
My mother is flying to Pittsburgh from my hometown of Houston, TX today. She's 83 and still a dynamo - I, on the other hand, am on a cane now. I just had to break the news to her. She is very disapproving of my physical condition and thinks I'm always looking for an easy way out of the pain through pain meds or prednisone, etc. It didn't even occur to me to think about using a cane except my husband had one for a knee injury where he received physical therapy. This can has definitely helped me - but now I need more. I never thought I would say it, but I need resources. I need aid. I think I need a handi-capped parking permit! You know how damned sad and stigmatized that makes me feel? FFS.
I believe my father had Fibromyalgia as he was in constant pain. He had rheumatoid arthritis, but I think he probably had Fibromyalgia (from what I know now and what I know of his symptoms) years before his death. My mother and father were devoted to each other and lifetime partners but my mother harbors anger that my father always tried to find a doctor to tell him what was causing him so much pain.
She has no clue. Also coming is my sister who is also a dynamo cancer-survivor. I feel like such a leach compared to both of them. They never understand. And they just don't understand how much effort I put into just going and doing things with them and trying not to freaking complain.
I'm glad to finally get some answers and to find a supportive on-line community. Thank you guys for listening. My mother and sister leave next Saturday. Please say a prayer for me that they'll be more understanding this time. Thanks very much, my friends.
Laura
I've always had bad luck with doctors. They always say I have an unusual case. Nothing is ever easy with me. When I was 13 I woke up with what I thought were some nasty mosquito bites. That kicked off a terrible month long battle with very serious hives. I could not even wear clothes or go to school. I had tons of tests and after they were brought under control and started going away, they just said it was autoimmune and I was not allergic to anything. That was just the start of my life with auto-immune problems. (Edit to add: I've now passed 30 years of auto-immune hives. I should throw myself a party and try to make it fun. If I knew then it would be a life-long battle, I'm not certain I could accept it.)
I always knew my system was not like everyone else's. I had to take a fan to summer camp (five weeks in the Texas Hill Country) each year when none of the other 300 girls took one. I could not regulate my temperature like others.
When I was 17 in college I would have my window open with it snowing outside and my fan on me while my roommate shivered. She loves to tell that story with great glee - I never had the heart to tell her how much it hurts me as it's a very clear indicator that before I even hit my 20's I was clearly symptomatic with some type of endocrine dysfunction.
By 25 I was gaining tons of weight and had stopped getting my period. By thirty I had stopped sleeping properly. In 1999 also at age 30, I had been diagnosed with Hoshimoto's Thyroiditis (autoimmune) and adrenal dysfunction. I never felt any better on thyroid meds but remember telling any doctor that would listen that if I didn't take my dexamethasone each night, I felt like my system didn't do its overnight work to refresh itself - I would "sleep" but not feel refreshed. Endocrinologist never commented on that - ever. Did I mention how much I dislike endocrinologists?
I had deep depression from about 20 to now (currently 44) but never got any help for it, despite even asking my parents for help - they weren't believers in psychology as they were from the school of suck-it-up.
I ALWAYS felt like there was something I had that nobody had been able to diagnose properly. :sad:
In 2006 I started getting gradually sicker and sicker. A lot of food made me sick. I would have very irritable bowel problems (not what I would label actual IBS) and it would be followed by vomiting. Especially in the morning I would throw up almost every day. I would brush my teeth and then throw up - and that's exactly what I would tell my doctor. I went to see him (my GP) over and over and over again. He finally sent me to a GI doc who did some blood work and and upper endoscopy and said you're anemic and we have to find out where that blood is going and we must do a lower endoscopy. All I wanted was my vomiting to STOP. He never "found" anything.
For 9 months that went on until I was so sick constantly that one day I called my husband and asked if he could come home because I was just sick as a dog. He came home and said I'm taking you to the hospital. On the way there I was completely griping saying, "I don't know WHY we're wasting our time - these damned doctors never find anything wrong with me. They're so stupid." My husband told me later I was slurring my words.
I had undiagnosed pancreatitis for NINE months. My blood sugar was 495 and I was DEEP into diabetic ketoacidosis. I thought because of my weight that I had "given" myself diabetes. My very stern mother was so upset as she thought the same thing. A few years later I happened to see another endocrinologist who told me, "Dear, you have type 1 diabetes. I did a GAD65 (a test that can tell if diabetes comes from an autoimmune source) test on you and it's off the charts." Literally the test range is 1-10. An 11 would be considered "off the charts" and my autoimmunity reaction to it was 927. No joke. They retested and retested just to be certain.
So, in 2010 I had gastric bypass - that almost killed me. I told my doc that I had had what doctors told me was autoimmune pancreatitis and that had lead to my pancreas being damaged. Doctors never listen to you, you know?
When I wake up I have a tube coming out of me - I ask what's this for? The doctor gripes at me about having to spend 45 extra minutes cutting scar tissue from around my pancreas. No Duh, man. I told you that I had it bad! My damn pancreas had eaten a hole straight through itself.
Each year I would get slower, sicker, in more pain, more depressed, less well all around. But, that gastric bypass really almost did me in. I couldn't eat or drink - even water. I would throw up constantly. And once I started, it would take me hours to get it to stop. It wouldn't be one big event and then over-with. It would be like baby spit up but like just foam (because I couldn't eat!) and it would go on for two, three, four hours. I had to work with a cup near me and learn to be very very quiet about it. I was so miserable.
Again, a couple years later that bariatric surgeon said, "Oh yeah, I've had a couple adrenal dysfunction patients since you and they both had terrible nausea just like what you reported." It's like if he hasn't personally had at least a few patients similar to you, he won't believe you just based on your reports. Makes me so angry sometimes.
So, I was in my Rheumatologist's office a year or two ago and he said you have Fibromyalgia and I said, "yeah yeah, nobody ever believes in that." And, frankly, I had so many things wrong with me I just never thought it could be explained by one (or even a few) things.
Then I started having so many problems with my balance and strength - if I get down on the floor I literally can not get myself up - and with stumbling and falling that I saw a MS doctor. I thought perhaps I have that.
Long and short - I finally started reading about Fibromyalgia and my adrenal dysfunction, terrible sleep apnea and mixed up sleep stages, depression, brain fog, depression, pain, and everything else can ALL be explained by Fibromyalgia.
I was so used to not listening to doctors that when one FINALLY got it right - I didn't pay any attention.
My mother is flying to Pittsburgh from my hometown of Houston, TX today. She's 83 and still a dynamo - I, on the other hand, am on a cane now. I just had to break the news to her. She is very disapproving of my physical condition and thinks I'm always looking for an easy way out of the pain through pain meds or prednisone, etc. It didn't even occur to me to think about using a cane except my husband had one for a knee injury where he received physical therapy. This can has definitely helped me - but now I need more. I never thought I would say it, but I need resources. I need aid. I think I need a handi-capped parking permit! You know how damned sad and stigmatized that makes me feel? FFS.
I believe my father had Fibromyalgia as he was in constant pain. He had rheumatoid arthritis, but I think he probably had Fibromyalgia (from what I know now and what I know of his symptoms) years before his death. My mother and father were devoted to each other and lifetime partners but my mother harbors anger that my father always tried to find a doctor to tell him what was causing him so much pain.
She has no clue. Also coming is my sister who is also a dynamo cancer-survivor. I feel like such a leach compared to both of them. They never understand. And they just don't understand how much effort I put into just going and doing things with them and trying not to freaking complain.
I'm glad to finally get some answers and to find a supportive on-line community. Thank you guys for listening. My mother and sister leave next Saturday. Please say a prayer for me that they'll be more understanding this time. Thanks very much, my friends.
Laura
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