HELP! swollen/painful glands and many other ongoing symptoms

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I am new to this group and am getting very frustrated about some weird ongoing health things that no doctor really seems to be concerned about. About a year ago (March 2013) I started to become fatigued and achy and just had no energy. I was always very active and enjoyed working out and would everyday for at least an hour - sometimes twice a day. & I never used to need much sleep - 5-6 hours was usually enough. I attributed that to the fact that it was about midpoint of second semester of my first year of college and I was just worn out. I was also constantly thirsty and nothing seemed to help so I went to the doctor and they checked for diabetes and that was ruled out, but they found that I had high cholesterol (283). I eat a fairly healthy diet so that was odd. Well, it didn't get better over the summer. I was still constantly tired, easily worn out, and achy. I also started getting headaches often which was weird because I very rarely got them - except for when I was young I can recall a couple of instances where I had terrible headaches. I have thick hair and have always shed, but it also started to get much thinner. In September, everything got much worse along with new symptoms. I would sleep 10-12 hours a night and nap anywhere from 2-6 hours during the day. I had headaches that would make me sick and extremely dizzy. I had trouble concentrating and finding words and was getting pretty forgetful of things i would have been easily able to remember before. I mix up my words so often now and have trouble getting the words out and enunciating them. I would get terrible pain/cramps in my legs to the point where I couldn't walk. Numbness and tingling sensations would shoot down my legs and arms lasting anywhere from a couple seconds to an hour. I would be standing or get up and my legs would feel so week that i would fall down. I get out of breath just walking and have chest pain. back pain and neck pain are constant - some days are worse than others. I ended up fainting one day and had an MRI and some white brain matter changes were found and a neurologist said that they were just because of migraines. I was also prescribed medicine for the migraines and nothing seemed to help - they just made me feel weird. I was sent to a rheumatologist who said I had none of her diseases but that something is definitely not right. I have been tested for mono, lymes, celiac disease.. at one point my doctor thought parathyroid tumor because PTH was 160 something (back to upper normal now) but he doesn't think so anymore now. the doctor i am seeing only gave me one physical exam - like listening to my heart, checking my lymph nodes, eyes, ears, throat, etc - when i first saw him in september. when i went to a follow up appointment a couple weeks ago, i was very adament that my neck, chest, armpit area, and groin regions were extra sore and that they had been for about two months but it seemed to be getting worse recently. so, he felt them and found that my cervical, axillary, supraclavicular, and inguinal regions were enlarged. with my body being achy all the time, i'm thinking that it is likely they have been swollen for a while and that i just hadn't noticed it until it got worse. i always felt like i had "knots" in those regions but it seemed normal to me because it's felt like that for so long. he didn't say much about it other than that he would check me for mono again (which came back negative) and i now have an appointment with an infectious disease specialist this week... i've done my fair share of looking online and the things that seem to make the most sense would be rheumatoid arthritis or lupus (but the rheumatologist ruled those out) or lymphoma or some type of cancer. my CK levels have been elevated since september - at least 200 points higher each time i've been checked. my LDH level has continuously gone up and is now at the upper limit..... still fatigued, achy, headaches aren't as often or as bad anymore, still get random bad pains in my arms and legs.. still the same concentrating and speech things as i mentioned earlier.. back pain and neck pain.. i feel like i'm going crazy because the doctors just keep dismissing everything as no big deal. does anyone have any insight or a similar experience to any of this?

sorry this is such a long post but i figured the more information i could offer the more insight someone may have.

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  • Posted

    Hello,

    What a horrible time you are having....I know how you feel because more or less every symptom you have described I get! I have just been diagnosed with Sjogren's Syndrome which is an auto immune disease. I am also having further test to see why my lymph node glands are swollen as with Sjogren's Syndrome you have a increased chance of having Lymphoma.

    I would asked to see another rheumatologist if I were you to get a 2nd opinion and perhaps ask for specific tests for Sjogren's??

    I hope you get the help you need anf find the answers soon wink

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  • Posted

    Hello!

    I was so happy to read your text, I have th exact same syptoms and I have been looking everywhere to find someone who had the same symptoms as me and you do...please tell me if you got an answer on what you have! Thank you so much for letting me know,

    Gen

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  • Posted

    Hi HJO! did you get anywhere with your diagnosis?  Your symptoms are identical to mine.  Bloods fine, chest X-ray fine.... Pushing for CT but doctor reluctant.  Glands now swollen in neck for 2 weeks (very small from what I can feel). 
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  • Posted

    Hey HJO. I've had the same symptoms and only one doctor, after 4 years of agony figured out that I had CMV virus, which causes all of those sypmtoms. 

    Did you get any diagnose? Why were your lymph nodes swollen for such a long time. Mine have been swollen for 2 weeks now out of nowhere, besides having a lupron shot for priapism. 

    Can you get back to me? I would really appreciate if you can provide an update about your situtation. It could really help me out. 

    I sympathyze with your situation. Being a personal trainer and knowing how important is staying active to you. 

    Get your CK levels checked again. Mine CK levels were 1500, to where the doctors called me and told me to go directly to the hospital. 

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  • Posted

    Hey HJO. I've had the same symptoms and only one doctor, after 4 years of agony figured out that I had CMV virus, which causes all of those sypmtoms. 

    Did you get any diagnose? Why were your lymph nodes swollen for such a long time. Mine have been swollen for 2 weeks now out of nowhere, besides having a lupron shot for priapism. 

    Can you get back to me? I would really appreciate if you can provide an update about your situtation. It could really help me out. 

    I sympathyze with your situation. Being a personal trainer and knowing how important is staying active to you. 

    Get your CK levels checked again. Mine CK levels were 1500, to where the doctors called me and told me to go directly to the hospital. 

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  • Posted

    Hi there.

    Firstly, I am sorry to hear that you have been suffering so much and for so long, yet still have not had a diagnosis of any description. You must feel really fed up by now.

    Secondly, I, too, experienced all the symptoms you described and spent months undergoing various tests and nothing showed up. A blood test did show that I had ana present but I was told that it was of no concern. I was even referred to a psychologist, which was hugely embarrassing as I thought I was being dismissed and that they were suggesting it was all in my mind. Admittedly, the psychologist was very kind and sympathetic.

    However, 6 months ago, I started experiencing dry eyes and went to visit my optician, mentioning to him that I also had dry mouth. He promptly wrote to my doctor and suggested a lip biopsy which confirmed that I had Sjogren's, which does, apart from dry eyes, dry mouth, cause inflammation and pain in the joints, memory impairment (often referred to as, "brain fog" I found, like yourself, I was unable to string a sentence together, would forget things within seconds and suffered terrible mood swings. Unfortunately, because I don't produce tears, I couldn't even have a good cry, which was really frustrating.

    I have been prescribed Hydroxychloroquine, a disease modifying drug that suppresses the immune system so hopefully things will calm down. I also am aware that there is a rare risk of lymphoma in patients with Sjogren's, however, the disease itself can cause the lymph nodes to swell and this should settle once the medication kicks in and I hope that to be the case.

    No apology needed in regards to length of post. I have been in your situation, with so many symptoms going on at once and sometimes not even having the energy to get out of bed. It's awful. My legs felt like I had lead strapped to my ankles, my arms felt heavy and the fatigue was unbelievable.

    Keep a diary, write everything down, no matter how minor. Change doctors if need be.

    Good luck and do let me know how you get on.

    Hang in there.

    Angela.

     

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  • Posted

    Hello, I was relieved to see your original post because I felt like I was not alone. However by the time I got to the bottom the the following of this I realized you have never followed up. Please give an update so I have some idea where to help my physician go with my symptoms. I have had a CT scan, X-ray, Blood work, ultra sound of the viens in my legs, and ECHO. Still no diagnosis. When I go in to see someone based on my symptoms, sometimes she can see there is obvious issues, however when there is no test to confirm anything I am sent home with another comment of "I don't see any reason for your discomfort so feel free to come in and see me when something is bothering you and try to eleminate some stress in your life". These symptoms are popping up out of the blue and disappear just as random as they come. When I think it's over I wake up to another 'crazy' random symptom that will last weeks to months or just never go away. I do have an appiontment next week for my latest symptom of swollen glands that won't go away. So we will see if that gets a result.  :~(
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    • Posted

      Hi there.

      i haven't posted anything for a while as the Hydroxychloroquine has kicked in and I have had flu-like symptoms for 2 weeks and it's draining. After 3 months, I finally feel the benefit of the new medication and my joints are less painful. I still have to deal with eye, nose and throat problems and also swollen glands, although I have been told they are fine and it is not unusual in Sjogren's. I suggest you change your doctor or say to your current physician that you suspect you have Sjogren's as it is rare and some doctors have not seen many or any patients with the condition. I too suffered the same symptoms and it was thanks to my optician, rhuematologist and orthodontist that I was given the lip biopsy that confirmed the diagnosis. My heart goes out to you as I was in a similar situation but don't give up. I know that is easy to say but you know your own body and it's not normal to experience so many issues and there not be anything wrong. You need to push for answers because if you have Sjogren's, and I suspect you do, it's going to be a long, hard road to getting people to listen. Give the gp a list of your symptoms, tell them how often you experience them and for how long. You can ask for a second opinion, have another gp at your surgery to look at you and listen and perhaps someone assessing your case without prejudice or any knowledge of your past health issues, may suddenly make them sit up and take notice.

      I wish you the best of luck in your endeavours. Don't give up.

      Keep in touch and let me know what happens.

      Angela.

       

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  • Posted

    Hi, did you find out what was wrong eventually? I am in similar situation with swollen lymph glands and other symptoms!
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    • Posted

      Hi Jess. Not had scans yet and have waited months after being constantly told it was related to my Sjogrens condition. It was

      eventually thanks to my rheumatologist who put in scan

      request. I have also suffered from excessive sweating, despite being on hrt. Unfortunately there is a slight risk of developing

      Lymphoma in Sjogrens patients but I am keeping an open mind and trying not to panic, which is easier said than done. Will

      definitely keep you posted when I find out what is going on.

      Angela.

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  • Posted

    I dont know if i am the same or not. But i have a swollen inguinal lymph node. Its been there for ages. But today and yesterday its been hurting alot and causing me.pain. i had gone to the drs beforw and got an ultrasound done and she told me not to worry and if it doesnt go in 6 months we will discuss more blahblah.. but ive noticed ive beeen tired all the time, i can literalllyyy get 10hours sleep at night and wakeup and still be tired. I sometimes get leg cramps out of no where and headaches and night sweats! I have no idea whata going on with my body!! I have thalassemia minor and when i was younger has horrible iron problems but im now 19 and having this.. the dr tels me not to worry and keep watching it for 6 months but its been so painful the past 2 days and my legs/thighs are cramping... my bones crack all the time.. do you think its the same symptoms as you ???
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