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Help. Multiple undiagnosed symptoms... I'm tired of suffering
I'm not sure if this is the right forum or not. I'm really just hoping that if I post something, someone will be able to help steer me in the right direction.
I've struggled with my health for the last 8 years, but things have gotten much worse in the last 18 months. It all started in 2001 when I came down with Mononucleosis. The test was positive, so I know I had mono. However I ended up being stuck on bedrest for an entire year. Since then I just have not been the same.
1. I've had recurring mouth ulcers since the mono. I'll get at least a dozen, sometimes 20 or 30 mouth sores on the insides of my cheeks, inside of lips, tongue, roof of mouth, gums, and throat. They start with one or two and by the next day it's a mouthful of sores. They get hot and are incredibly painful (I can't eat, can't talk without pain... sometimes I can't sleep), and they last for 2-3 weeks at a time. These episodes started during the mono, but have continued to recur over the last 8 years. This past year they have been coming every few months. I get maybe 4 or 5 weeks relief and then another round begins. My doctor recently discovered that with these outbreaks, I am even getting ulcers in my ear canals.
2. I've been given a tentative diagnosis of Fibromyalgia. But I don't exactly fit that diagnosis.... but she doesn't know what else to call it at this point. I have chronic pain -- joint pain, but also muscle pain. The joint pain is like someone holding ice onto my joints, in the larger joints it feels like sand has been poured into the sockets and being rubbed raw. The muscle aches are gnawing and burning. They come and go, sometimes flaring to the point that I struggle to get out of bed.
3. Fatigue has been a constant for the last 8 years, but definitely worse over the last 18 months. I feel worn out before I even start the day.
4. Over the last 12 months I've developed spells of severe nausea and stomach pain that can include vomiting. My diet becomes severely restricted. This comes along with an array of other GI symptoms from alternating constipation and loose stools, to bloating, to severe cramping.
5. Headaches and migraines have become commonplace for me. I will have a headache for a week, and then two days of debilitating migraines, a few more days of a headache, and then it goes away for a few weeks. The migraines are one sided, always the same side, both the headaches and migraines originating from the same spot.... the place where the skull and spine meet (the bump)...just one side. It gets hot and inflamed, my neck gets stiff, the pain goes all the way down my shoulder. This starts with the headaches and gets worse with the migraines. But then just goes away.
6. I've been having spells of dizziness, and at times vertigo. I get the ringing in my ears quite often, and every few months or so the rooms start spinning. The dizziness is more frequent. I often have to lay down quickly because I feel like I'm going to faint.
7. Frequent illnesses. I am always getting sick. I get sick when no one else does. It has gotten to the point that I had to quit work because I was getting one thing after another and they were getting more and more severe.
There are more that I"m not listing... little things. But those are the big ones, the most frequent, the most significant. I am in pain all the time. I'm not enjoying life no matter how much I try to.... My doctor has ran just about every test she can... and outside of my being anemic and having a few nutritional deficiencies, everything comes back normal. Everything. I've been referred out to specialists and after waiting months for appointments, their initial findings bring no answers. They tell me to wait 6 months or a year, come back.... and I'm tired of waiting. I'm tired of being sick and in pain.
I just don't know what to do.
Any thoughts or advice would be greatly appreciated. Thank you.
-sunflowerbreezes
I've struggled with my health for the last 8 years, but things have gotten much worse in the last 18 months. It all started in 2001 when I came down with Mononucleosis. The test was positive, so I know I had mono. However I ended up being stuck on bedrest for an entire year. Since then I just have not been the same.
1. I've had recurring mouth ulcers since the mono. I'll get at least a dozen, sometimes 20 or 30 mouth sores on the insides of my cheeks, inside of lips, tongue, roof of mouth, gums, and throat. They start with one or two and by the next day it's a mouthful of sores. They get hot and are incredibly painful (I can't eat, can't talk without pain... sometimes I can't sleep), and they last for 2-3 weeks at a time. These episodes started during the mono, but have continued to recur over the last 8 years. This past year they have been coming every few months. I get maybe 4 or 5 weeks relief and then another round begins. My doctor recently discovered that with these outbreaks, I am even getting ulcers in my ear canals.
2. I've been given a tentative diagnosis of Fibromyalgia. But I don't exactly fit that diagnosis.... but she doesn't know what else to call it at this point. I have chronic pain -- joint pain, but also muscle pain. The joint pain is like someone holding ice onto my joints, in the larger joints it feels like sand has been poured into the sockets and being rubbed raw. The muscle aches are gnawing and burning. They come and go, sometimes flaring to the point that I struggle to get out of bed.
3. Fatigue has been a constant for the last 8 years, but definitely worse over the last 18 months. I feel worn out before I even start the day.
4. Over the last 12 months I've developed spells of severe nausea and stomach pain that can include vomiting. My diet becomes severely restricted. This comes along with an array of other GI symptoms from alternating constipation and loose stools, to bloating, to severe cramping.
5. Headaches and migraines have become commonplace for me. I will have a headache for a week, and then two days of debilitating migraines, a few more days of a headache, and then it goes away for a few weeks. The migraines are one sided, always the same side, both the headaches and migraines originating from the same spot.... the place where the skull and spine meet (the bump)...just one side. It gets hot and inflamed, my neck gets stiff, the pain goes all the way down my shoulder. This starts with the headaches and gets worse with the migraines. But then just goes away.
6. I've been having spells of dizziness, and at times vertigo. I get the ringing in my ears quite often, and every few months or so the rooms start spinning. The dizziness is more frequent. I often have to lay down quickly because I feel like I'm going to faint.
7. Frequent illnesses. I am always getting sick. I get sick when no one else does. It has gotten to the point that I had to quit work because I was getting one thing after another and they were getting more and more severe.
There are more that I"m not listing... little things. But those are the big ones, the most frequent, the most significant. I am in pain all the time. I'm not enjoying life no matter how much I try to.... My doctor has ran just about every test she can... and outside of my being anemic and having a few nutritional deficiencies, everything comes back normal. Everything. I've been referred out to specialists and after waiting months for appointments, their initial findings bring no answers. They tell me to wait 6 months or a year, come back.... and I'm tired of waiting. I'm tired of being sick and in pain.
I just don't know what to do.
Any thoughts or advice would be greatly appreciated. Thank you.
-sunflowerbreezes
Oh my gosh sounds horrible...Its so frustrating when they can't figure it out. Definitley rhemi doctor is the one to stay with....Mouth sores sound like lupus to me..from my experience dont accept the fibro diagnosis I sometimes feel like they say that when they dont know what else to say. Good luck I hope you get to bottom of it...
I am so sorry to hear of your ongoing health issues. I just posted for suggestions as well. Many of the symptoms you have are very similar to what my mom has and she was diagnosed with sjogrens many years back. I will follow this conversation and hopefully get some suggestions from it. I wish you well.
Hi...you certainly are suffering quite a bit. What type of doctor have you seen and what type of tests have you had done?
I had many of the same symptoms you have and I have Sjogren's and Lupus (and Polymyositis)...not saying that is what you have...but the good news is that the right doctor and proper medication can probably help you. It just takes some time and investigation.
Sjogren's is a misunderstood disease...and underestimated disease as well.
I do hope you find some answers soon...best of health to you.
Wanna :o)
I had many of the same symptoms you have and I have Sjogren's and Lupus (and Polymyositis)...not saying that is what you have...but the good news is that the right doctor and proper medication can probably help you. It just takes some time and investigation.
Sjogren's is a misunderstood disease...and underestimated disease as well.
I do hope you find some answers soon...best of health to you.
Wanna :o)
The thing is.... I follow a very strict Gluten Free diet. I basically avoid all foods that cause inflammation. Could it still be cealiac's if I haven't eaten Gluten in about 2 years?
Definitely sounds a lot like coeliac disease to me - I've been researching it a lot lately so go for tests on that.
Make sure you are eating plenty of gluten rich products before the test to ensure you have the best chance of showing antibodies (if you have them).
Please bear in mind it can give a false negative also so if it does come back negative it may be worth trying gluten free for a couple of months after the test and see what happens.
Before you accept the Fibro diagnosis make sure you are screened well for coeliac (perhaps with the endoscopy) and also be screened for various autoimmune diseases and pay close attention to your thyroid blood results also.
Good luck.
Make sure you are eating plenty of gluten rich products before the test to ensure you have the best chance of showing antibodies (if you have them).
Please bear in mind it can give a false negative also so if it does come back negative it may be worth trying gluten free for a couple of months after the test and see what happens.
Before you accept the Fibro diagnosis make sure you are screened well for coeliac (perhaps with the endoscopy) and also be screened for various autoimmune diseases and pay close attention to your thyroid blood results also.
Good luck.
Thank you Karen, I will do some reading on those disorders/diseases and bring it up with my doctor to see what she thinks.
I appreciate this.
-sunflowerbreezes
I appreciate this.
-sunflowerbreezes
Oh dear, you must be totally miserable! It may be that you have more than one problem going on. My mind started running when I read your post. Here are my ramblings.
It appears at times, when a doctor can't find a diagnosis that fits or a test does not come up positive, you end up with fibro. You have too many other things going on to say that it is your single problem. Mouth ulcers are not on the symptom list for this diagnosis.
Since you have had mono, it is possible that you have Chronic Fatigue Immune Deficiency Syndrome. There is a lot of new, exciting research on CFIDS/CFS.
The Whittemore Peterson Institute has found a retrovirus than may be responsible for the condition. Their website is http://www.wpinstitute.org/ - if you want to look them up.
Another resource for CFS: Dr Jacob Teitelbaum has written a book on CFS/Fibro, From Fatigued to Fantastic. Supposedly he had CFS and has overcome it. He also has a website, www.vitality101.com. There are many other resources on the internet if you just “Google it”.
Another thought I had was maybe Behcet's Disease. I know ulcers of the mouth and genitalia are common with Behcet’s. It’s an autoimmune disease and doctors do not readily diagnosis it. From stories that I have heard, many suffer for years before they finally get the diagnosis.
Last idea, what about Celiac Disease? It would definitely explain number four on your list. From http://www.webmd.com/digestive-disorders/celiac-disease/celiac-disease: Symptoms of celiac disease vary among sufferers and include: Digestive problems (abdominal bloating, pain, gas, diarrhea, pale stools, and weight loss), a severe skin rash called dermatitis herpetiformis, iron deficiency anemia (low blood count), musculoskeletal problems (muscle cramps, joint and bone pain), seizures, tingling sensation in the legs (caused by nerve damage and low calcium), aphthous ulcers (sores in the mouth), and missed menstrual periods.
Hope something I wrote helps.
Best of luck to you,
Karen
It appears at times, when a doctor can't find a diagnosis that fits or a test does not come up positive, you end up with fibro. You have too many other things going on to say that it is your single problem. Mouth ulcers are not on the symptom list for this diagnosis.
Since you have had mono, it is possible that you have Chronic Fatigue Immune Deficiency Syndrome. There is a lot of new, exciting research on CFIDS/CFS.
The Whittemore Peterson Institute has found a retrovirus than may be responsible for the condition. Their website is http://www.wpinstitute.org/ - if you want to look them up.
Another resource for CFS: Dr Jacob Teitelbaum has written a book on CFS/Fibro, From Fatigued to Fantastic. Supposedly he had CFS and has overcome it. He also has a website, www.vitality101.com. There are many other resources on the internet if you just “Google it”.
Another thought I had was maybe Behcet's Disease. I know ulcers of the mouth and genitalia are common with Behcet’s. It’s an autoimmune disease and doctors do not readily diagnosis it. From stories that I have heard, many suffer for years before they finally get the diagnosis.
Last idea, what about Celiac Disease? It would definitely explain number four on your list. From http://www.webmd.com/digestive-disorders/celiac-disease/celiac-disease: Symptoms of celiac disease vary among sufferers and include: Digestive problems (abdominal bloating, pain, gas, diarrhea, pale stools, and weight loss), a severe skin rash called dermatitis herpetiformis, iron deficiency anemia (low blood count), musculoskeletal problems (muscle cramps, joint and bone pain), seizures, tingling sensation in the legs (caused by nerve damage and low calcium), aphthous ulcers (sores in the mouth), and missed menstrual periods.
Hope something I wrote helps.
Best of luck to you,
Karen
Hi,
Thank you for your response.
I do not have mercury fillings.
My doctor has tested me for heavy metals, and everything came back okay.
My primary doctor is naturopathic, so diet and environmental factors were one of her first theories. For the last two years I've been very careful about what I bring into my home (cleaning products, soaps, hygiene products, even my dog's products) and have made sure they are are things made from natural sources without chemicals and pesticides. My diet has been very healthy. I follow a gluten free vegetarian diet and use only organic foods. I do not eat any processed food. And my doctor keeps me on a very good regime of supplements.
Thank you again for your time.
-sunflowerbreezes
Thank you for your response.
I do not have mercury fillings.
My doctor has tested me for heavy metals, and everything came back okay.
My primary doctor is naturopathic, so diet and environmental factors were one of her first theories. For the last two years I've been very careful about what I bring into my home (cleaning products, soaps, hygiene products, even my dog's products) and have made sure they are are things made from natural sources without chemicals and pesticides. My diet has been very healthy. I follow a gluten free vegetarian diet and use only organic foods. I do not eat any processed food. And my doctor keeps me on a very good regime of supplements.
Thank you again for your time.
-sunflowerbreezes
You mentioned problems in the mouth area. If you have amalgam (mercury) fillings you might suspect that as a problem. You can see a mercury free dentist and have it checked out. Mercruy is a poison and some people have trouble dealing with it. Check out this paper by Bernard Windham "flcv.com/ms.htlm". Tom McQuire has a program which gives a list of supplements you can take to help your body get rid of the mercury. Check out the "paleo diet" and it will give you the type of foods you should be eating to help with your illness. I have the book "Prescription for Nutritional Healing. If you have viruses or bacteria in your body you can take natural substances to figth this. Things I take are vitamin C, garlic, olive leaf extract, Cayenne fruit, and Cinnamon. There are other things you can take so if you are interested get the book. Hippocrates the father of western medicine said many years ago, "Let your food be your medicine and let your medicine be your food". Healing is done by the body and if you give the body what it needs you have a chance of getting better. Check out your enviroment and make sure you are not getting poisons which you are not aware of. They are everywhere. Good Luck.
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