Aa
LONG question - please help :(
Hi all,
I'm not sure what I'm even asking anymore - I've been to my GP on off and had a lot of different tests but still no answers so I was hoping a brief history with my current complaints might help someone shed more light on my situation.
I have always been very healthy, good diet, few illnesses etc and I was training as a classical dancer all through my teens. I got Epstein-Barr virus (mono/glandular fever) diagnosed when I was 17 and it really wiped me out. I had specialists tell me that because I had been so active physically prior to being sick it could take really a year, maybe more, to get back to my former self. I'm now 20 and I still don't feel like that - if anything I feel worse. I took months off from dance, I tried to reintroduce it slowly and go once a week, I tried doing it all again, now I just do nothing at all because its too difficult and, with my age, its been too difficult to train professionally again.
When I had mono my symptoms were mainly extreme fatigue and malaise with swollen glands. I no longer test positive for the virus and about 2 years after I was diagnosed I developed further health problems which have been ongoing for a year now.
The only way I can really describe these problems are like flare ups. At first it was clearly digestive problems - my appetite was up and down, I had a lot of nausea and problems digesting, irregular bowel movements and (sorry to be graphic) lots of blood and mucuous in my stool. This still occurs. There is a family history of reflux so it wasn't so surprising. Then I suffered from tonsilitis, chest infection, flu etc etc which were hard to shake and I had never had chest infections in my life and the cough is still pretty presisitent.
This summer and last summer, while on holiday, I have devleoped bad heat rash and inability to handle sun and heat and heavy nosebleeds due to this which ended up putting me in hospital. Whenever I feel a bit sick and run down I get little rashes mainly on my arms and chest and hands. They look like pimples but they aren't raised just red and can appear and disappear very quickly. My mouth is always filled with ulcers and sores that the dentist can't figure out and my glands swell up and down in my neck.
Finally, I suffer a great deal of pain which has made exercise difficult. I have tried pilates, physio, seeking all sorts of advice and resting but I get chronic pain in the joints of my elbows and in my neck often resulting in numbness in my hand and sleepless nights. Also, I have been told I have raynaud's phenomenon (poor circulation and discolouration in hands and feet).
I have been having blood tests that havent showed much of anything other than occasional raised white cell count and I have tried alternative food allergy testing to no avail. I take flax oil, multivitamins, rest well, don't smoke or drink but it doesn't seem to make a difference. I know eveyrone is bored oflistening to me saying I don't feel well so I haven't bothered going back to my doctor for months as my last attempt with a specialist resulted in him telling me I'm just impatient with poor health because I'm young. I just want to raise the quality of my life again and not live in fear for even going on holidays because I'm always taking sick.
I don't know how to link any of my symptoms except when I get one, I always get another one or two to go along with it so I have guessed they are no coincidence and a flare up or inflammation of some kind. Any ideas? Please? :(
I'm not sure what I'm even asking anymore - I've been to my GP on off and had a lot of different tests but still no answers so I was hoping a brief history with my current complaints might help someone shed more light on my situation.
I have always been very healthy, good diet, few illnesses etc and I was training as a classical dancer all through my teens. I got Epstein-Barr virus (mono/glandular fever) diagnosed when I was 17 and it really wiped me out. I had specialists tell me that because I had been so active physically prior to being sick it could take really a year, maybe more, to get back to my former self. I'm now 20 and I still don't feel like that - if anything I feel worse. I took months off from dance, I tried to reintroduce it slowly and go once a week, I tried doing it all again, now I just do nothing at all because its too difficult and, with my age, its been too difficult to train professionally again.
When I had mono my symptoms were mainly extreme fatigue and malaise with swollen glands. I no longer test positive for the virus and about 2 years after I was diagnosed I developed further health problems which have been ongoing for a year now.
The only way I can really describe these problems are like flare ups. At first it was clearly digestive problems - my appetite was up and down, I had a lot of nausea and problems digesting, irregular bowel movements and (sorry to be graphic) lots of blood and mucuous in my stool. This still occurs. There is a family history of reflux so it wasn't so surprising. Then I suffered from tonsilitis, chest infection, flu etc etc which were hard to shake and I had never had chest infections in my life and the cough is still pretty presisitent.
This summer and last summer, while on holiday, I have devleoped bad heat rash and inability to handle sun and heat and heavy nosebleeds due to this which ended up putting me in hospital. Whenever I feel a bit sick and run down I get little rashes mainly on my arms and chest and hands. They look like pimples but they aren't raised just red and can appear and disappear very quickly. My mouth is always filled with ulcers and sores that the dentist can't figure out and my glands swell up and down in my neck.
Finally, I suffer a great deal of pain which has made exercise difficult. I have tried pilates, physio, seeking all sorts of advice and resting but I get chronic pain in the joints of my elbows and in my neck often resulting in numbness in my hand and sleepless nights. Also, I have been told I have raynaud's phenomenon (poor circulation and discolouration in hands and feet).
I have been having blood tests that havent showed much of anything other than occasional raised white cell count and I have tried alternative food allergy testing to no avail. I take flax oil, multivitamins, rest well, don't smoke or drink but it doesn't seem to make a difference. I know eveyrone is bored oflistening to me saying I don't feel well so I haven't bothered going back to my doctor for months as my last attempt with a specialist resulted in him telling me I'm just impatient with poor health because I'm young. I just want to raise the quality of my life again and not live in fear for even going on holidays because I'm always taking sick.
I don't know how to link any of my symptoms except when I get one, I always get another one or two to go along with it so I have guessed they are no coincidence and a flare up or inflammation of some kind. Any ideas? Please? :(
You might want to take a look at the Paleo diet which has shown success in treating many of the neurological illness we are seeing today. Googel it and give it a try. You have nothing to lose by trying it and it might help you.
Your symptoms are very similar to mine. I have had lupus for about 17-19 yrs. My symptoms developed after a severe bout with mono and have gradually gotten worse. The main symptoms also started with digestive problems and I could no longer get in the sun without getting a rash and feeling like I had the flu. I had flare ups of fatigue and pain that could last for a month or more and I could sleep for days. It took approx 11 yrs before someone finally figured it out. I was sent to a dermatologist because of the rashes and he did some labs and they came back positive. I also developed the rashes from the flourescent lighting in the office where I worked, which also kept me flaring up with the pain and fatigue. I had strep throat for about 7 months before my tonsils were found and removed. It has been one thing after another with this disease.
You do not always have positive labs with lupus. There are lots of ppl who test positive but do not have lupus and there are ppl who do not test positive and do have it. A rheumatologist or autoimmune specialist is who you should see to get the right diagnosis. The most important thing is do not give up. Don't let the doctors tell you it's in your head. Also, Raynauds is common with lupus, along with the mouth sores, nose sores, nosebleeds, etc. Look at the symtoms for lupus and one thing that makes it so difficult to diagnose is no two ppl have the same symptoms. Most do have the joint pain and the fatigue, but then it can be entirely different or the symptoms aren't the same all the time.
I can tell you my pain feels like the bones are shattering. My joints hurt so bad, I lay in bed and can't be still and sometimes cry in anguish. I have found nothing that relieves the pain. I take a really strong narcotic for nerve damage pain and it doesn't touch the pain from lupus. The fatigue is like none other. Sometimes, I can't walk for 20 ft. Sometimes I go for days without a shower, because I can't stand up that long. I don't care how hard you try to function, you just can't. I am 55 yrs old and the last 10 years have been the hardest in my entire life. My flare ups are constant and I am on prednisone all the time now. It is the only thing that helps, but is not good to be on it this much. I have tried most all the other meds with no help at all with the symptoms.
You may email me directly if you like. I know how hard it is to have these symptoms and it seems no one is listening. I wish I could give you a better prognosis, but if it is lupus and I believe it is, there is no cure. But, you could go into remission and go for many years and never have another flare up. It's a disease that you cannot control, but you do have to make lifestyle changes. Only do what you feel like doing. Your body requires a lot of rest. On most days, my naps are 3 - 5 hrs. Use heat for the pain, like heating pads, or soaking in a warm bath. I use a twin size electric blanket for a heating pad. My legs, knees, and ankles hurt so bad, I just wrap the blanket around them and try to get relief. You might have symptoms with one flare up and have different symptoms with the next flare up, but have a few main ones that are consistent. I used to have telltale signs it was about to flare up, now that doesn't always happen. I would get headaches about two days before hand or just be more tired and could't stay awake. Most of the time, the flare ups come very suddenly without any warning. I can feel great one minute and in the next 5, I could be deathly ill.
See a rheumatologist and I wish you the best of luck.
You do not always have positive labs with lupus. There are lots of ppl who test positive but do not have lupus and there are ppl who do not test positive and do have it. A rheumatologist or autoimmune specialist is who you should see to get the right diagnosis. The most important thing is do not give up. Don't let the doctors tell you it's in your head. Also, Raynauds is common with lupus, along with the mouth sores, nose sores, nosebleeds, etc. Look at the symtoms for lupus and one thing that makes it so difficult to diagnose is no two ppl have the same symptoms. Most do have the joint pain and the fatigue, but then it can be entirely different or the symptoms aren't the same all the time.
I can tell you my pain feels like the bones are shattering. My joints hurt so bad, I lay in bed and can't be still and sometimes cry in anguish. I have found nothing that relieves the pain. I take a really strong narcotic for nerve damage pain and it doesn't touch the pain from lupus. The fatigue is like none other. Sometimes, I can't walk for 20 ft. Sometimes I go for days without a shower, because I can't stand up that long. I don't care how hard you try to function, you just can't. I am 55 yrs old and the last 10 years have been the hardest in my entire life. My flare ups are constant and I am on prednisone all the time now. It is the only thing that helps, but is not good to be on it this much. I have tried most all the other meds with no help at all with the symptoms.
You may email me directly if you like. I know how hard it is to have these symptoms and it seems no one is listening. I wish I could give you a better prognosis, but if it is lupus and I believe it is, there is no cure. But, you could go into remission and go for many years and never have another flare up. It's a disease that you cannot control, but you do have to make lifestyle changes. Only do what you feel like doing. Your body requires a lot of rest. On most days, my naps are 3 - 5 hrs. Use heat for the pain, like heating pads, or soaking in a warm bath. I use a twin size electric blanket for a heating pad. My legs, knees, and ankles hurt so bad, I just wrap the blanket around them and try to get relief. You might have symptoms with one flare up and have different symptoms with the next flare up, but have a few main ones that are consistent. I used to have telltale signs it was about to flare up, now that doesn't always happen. I would get headaches about two days before hand or just be more tired and could't stay awake. Most of the time, the flare ups come very suddenly without any warning. I can feel great one minute and in the next 5, I could be deathly ill.
See a rheumatologist and I wish you the best of luck.
A colonoscopy is the best diagnostic tool for bowel issues. It can determine if you have polyps and remove them, take biopsies to see if you have ulcerative colitis or Crohn's, and look for other reasons for inflammation. Don't be afraid. The worse is the prep the day before. You will take a laxative and go on liquids for a day. When they do the test they give you a drug to relax you and you will have no memory of the test. I really recommend you go ahead and have that so you can get the treatment you need and some peace of mind. Plus go to a rheumatologist for your other issues.
Hi and welcome to MedHelp Lupus forum. Many of your symptoms do sound like Lupus. Which can even affect the gastrointestinal tract. Definitely cause all the mouth ulcers and Raynaud's. But some of your symptoms sound like fibromyalgia, which can cause the sleep difficulties. (try some benadryll.) A kin of fibro is chronic fatigue, which follows illnesses like mono.
I and Trudie recommend that your dr. follow up with an ANA. Be sure and spend time in the sun prior to the test. If you have lupus, it will cause the levels to rise...if not, it won't affect the levels.
Something is going on cause your sed rate is up. Don't let a dr. tell you nothing is wrong. Healthy people don't have elevated levels and swollen lymph glands.
Praying for you, Kara
I and Trudie recommend that your dr. follow up with an ANA. Be sure and spend time in the sun prior to the test. If you have lupus, it will cause the levels to rise...if not, it won't affect the levels.
Something is going on cause your sed rate is up. Don't let a dr. tell you nothing is wrong. Healthy people don't have elevated levels and swollen lymph glands.
Praying for you, Kara
thanks for your positivity, Trudie. I did actually see a gastroenterologist - he told me I was just impatient! I have never seen a rheumatologist however which is something I would be keen to try. The last time my blood was checked for anything was almost a year ago as I just gave up but I'm feeling a little renewed to tryagain and get on with things.
My doctor did mention the colonoscopy but I was terrified and he didn't push it what sort of things would it show?
My doctor did mention the colonoscopy but I was terrified and he didn't push it what sort of things would it show?
When you had your bowel issues did you see a gastroenterologist and have a colonoscopy? It sounds very much like ulcerative colitis or Crohn's. You also need to see a rheumatologist and have a complete blood work up and testing for arthritis and Lupus. Often times emotional or physical stress can trigger an auto-immune disease. I hope you can get some relief. Insist on seeing the right doctors. And for some of these your blood may not reveal the truth for some time so it is very important that you keep on going back to the rheumatologist for regular tests.
Hi,
Thanks so much for your reply. I do actually take the 'biotics haha I love them and find they do help address the gut issues at least. I had accupressure before which advised me to cut out sugar and dairy and wheat. It was difficult but elements of it definitley made sense. I have so much more faith in alternate ways of healing than doctors, its really just the pain thats hard to manage.
Sorry to sound stupid but what exactly did you mean by systemic?
Thanks so much for your reply. I do actually take the 'biotics haha I love them and find they do help address the gut issues at least. I had accupressure before which advised me to cut out sugar and dairy and wheat. It was difficult but elements of it definitley made sense. I have so much more faith in alternate ways of healing than doctors, its really just the pain thats hard to manage.
Sorry to sound stupid but what exactly did you mean by systemic?
HI,
Sorry to hear about all your troubles. They do sound pretty systemic, and probably needs to be approached that way. If nothing shows on tests, the health system will abandon you as "healthy", and just stressed blame / anxious / depressed, or whatever. Specialists are often worse than general MD's, as they completely ignore the whole picture, and just will look at whatever organ they specialize in. You say you have a lot of gut issues, this is a great place to start your "healing". Watching your diet may not be enough, you probably need a good "detox" and take supplements, to make sure you get enough nutrients. You may have leaky gut problems, which very often manifest into other problems in the body, if so, it's important to address it. Do you take probiotics and prebiotics? There are also many herbal remedies to address gut issues. Have you tried any specific diets, like the blood type diet, or ph diets, dropped the usual "bad" allergens, like sugar, yeast, wheat, all dairy...etc.
ktp.
Sorry to hear about all your troubles. They do sound pretty systemic, and probably needs to be approached that way. If nothing shows on tests, the health system will abandon you as "healthy", and just stressed blame / anxious / depressed, or whatever. Specialists are often worse than general MD's, as they completely ignore the whole picture, and just will look at whatever organ they specialize in. You say you have a lot of gut issues, this is a great place to start your "healing". Watching your diet may not be enough, you probably need a good "detox" and take supplements, to make sure you get enough nutrients. You may have leaky gut problems, which very often manifest into other problems in the body, if so, it's important to address it. Do you take probiotics and prebiotics? There are also many herbal remedies to address gut issues. Have you tried any specific diets, like the blood type diet, or ph diets, dropped the usual "bad" allergens, like sugar, yeast, wheat, all dairy...etc.
ktp.
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