HELP! swollen/painful glands and many other ongoing symptoms

Allergies, blood and immune system
1

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.

2

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

3

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

4

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). 

5

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. 

6

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. 

7

Were can u feel them are they still there I've felt mine for. Bout  6months

8

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.

 

9

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.  :~(

10

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.

 

11

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

12

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.

13

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 ???

14

This does sound very similar to what my mother suffers from and that is fibromyalgia, many doctors fail to or simply do not want to diagnose it, I could be wrong but it's worth looking into 

15

Did you get an answer in the end? This sounds a lot like chronic fatigue syndrome (also known as ME) to me!

16

hey hjo my name is kevin and ive been experiencing every single one of they symptomsi have had and i have been to doctors on top of doctors went and had ANA done by my doctor that came back noram i started off late july early august with a electric shock sensation that went from the top of my head to the bottom of my feet so i thought nothing of it so the next day my neck started getting very stiff and i was like i said well this is just something that will go away its iikely some time of virus and it would go away within a few days or a week or so so i paid no attention to it and it was by far the worst mistake i ever made so then about 2 weeks later i started feeling stiffness in my arm muscles and some symptoms of carpal tunnel so i schedule an appointment with a neurologist who sent me for a cbc and then sent me to have a emg study done which is a muscle and nerve study the never study was a peice in the cake comparied to the muscle study where the needle goes way way down in your arms and it hurts bad so that came back with carpal tunnel in my right hand and then about 3 weeks to a month later tops i started having the same problems on my left hand getting to where i couldnt do alot of typing then it went up my arms then it got really bad and started working on my knees and my balance situations so i made an appointment with another dr well they did a cbc again said my ana levels were high then i scheduled an appointment with a rheumotologist and he said oh your fine nothings wrong with you in my department you should go back to pcd so i did and by that time i started having knee pain and back pain but before all this happened i was having back in 2011 i started noticing that i had a knot on my left side of my neck went to the dr he said biopsy would be the best way to do it but until it got bigger the surgeon would not do a biopsy that node has not gotten bigger well on the other side of my neck another one popped up it might be just a fridge bigger but not hardly enough to tell it so i didnt bother having this one checked this was back in 2011 and from 2011 to late july 2015 i felt fine pain free no muscle spasms no nothing so im like well as long as they are small and arent getting any bigger than i dont see nothing to worry about well now the stiffness that i was talking about earlier that started in my neck has progress all over it was to the point that i was wondering if i had als or ms so after visiting with cape fear neurology and neurosurgery and after my cbc was done and the emg i was diagnosed with carpal tunnel in 1 hand but now it his progress into both hands and then the pain started back this time all over my body i have had 2 drs tell me that my ana was positive or high whichever you call it that was back in 2011 so i went to unc rheumotology and his name was dr rober burger he came in shook my hand and said your fine i dont see anything wroing with your ana that would indicate a autoimmune disorder so i was frustrated but evertyhing leveled off for quite some time up until late july of 2015 and then thats when all hell broke lose but i have been to several different drs who cant find the root of my problem as i continue to have join pain all over myoclonic jerks in my arms and legs upton drifting off to sleep and now i have 2 lymph nodes on each side they havent gotten any bigger but now a 3rd one was popped up and its painfull very small like a buckshot and i have pain in the left side of my abdomen and im concerned that this could be my spleen enlarging i have also had some small yellow spots on my skin which is liver issues and back pain is really bad and the fatigue omg is so bad at times i cant even get up and do my daily chores around the house i have been praying to god that he finds what is wrong with me he is the great dr and no other dr can diagnose like jesus christ but i fully understand your anxiety and worry about this situation as i am to visit with my cnp tommorrow and im going to request a dna double test to check for lupus as i feel like i have 7 of the 11 requirements to be diagnosed with lupus when all you have to have is 4 out of 11 to get the diagnoses but please keep me in your prayers and i will do you the same and i hope you are feeling better by now because im a little worried about lymphoma but i know god will take good care of me and he will all of us but all i need to know is what ive got and what kind of treatment can be done right now for the stiffness i take clonazepam 0.5 mg which helps out alot in the stiffness but i dont take this every day because i refuse to get addictive to it i am also on gabapentin for the pain which seems to marvolious job in keeping my pain down even though i think my dr needs to go up on a litte bit but it certainly is a good medication and not to mention i have been hurting in my side where the spleen is and in my feet knees and legs but with gods strength i know i will be fine but if their is anybody out there that is experiencing what i am and can give me a heads up thank you so much god bless all of us who are sick!

17

I have all these symptoms and have been diagnosed with fibromyalgia, Rheumatoid arthritis, chronic fatigue syndrome, sjogrens, and after all these titles and many doctors not being able confirm anything with tests but the RA, I finally found a doctor that tested me for Lyme Disease. I tested postive and unfortunately wasnt diagnosed with Lyme for over 30 yrs! I live in a state that they say doesnt have Lyme disease but we have ticks everywhere and they ARE positive for Lyme. Lyme disease can cause all of this and much much more but the testing is horrible. A lot of people test negative but are positive others, like me, test positive but the doctors will spend an hour telling you why your test is a false positive. There are no false positives. I could go on and on. Hope you all find out what is causing your symptoms. I just hope that if they arent able to find out that you get tested for Lyme. Demand the Western Blot test. It is only about 60% able to pick up Lyme but is better than the ELISA TEST.

18

Hi Kimberly here I have been going through the same thing for the past six months I cannot figure out what is happening I have narrowed it down to possible viral or bacteria or I am also looking at the fact that when they did a CAT scan 6 months ago 3 days after I was so sick and weak I asked if they use the same chemical for the CAT scan and they said no they were using a new type of chemical for the CAT scans they're supposed to give a better picture I am trying to stay on top of this I have seen several doctors switch doctors every time I show up in the ER with so much pain the say it always looks like it's some kind of arthritis the checking me out now for arterial arthritis which is big cell and can cause the arteries to be swollen which produces a stroke or possible heart attack . I keep having all kinds of flushes where my face and body will get really red seems to be letting out heat my body aches on a constant basis but it moves around my body it's so strange six months ago I was normal on the upside eating an anti-inflammatory diet is helping as well as green tea matcha,,,next though I'm going to be trying to drink some mud that's the holistic mud to clean and clear toxic waste. I am 49

19

Hello, wowe you got a lot of stuff going on. Have you ever had thyroid hormone levels checked? Or your Cortisol? Adrenals and thyroid play a role in energy

. Now, the lymph nodes. Have you had any type of images taken or biopsies.?generally speaking normal healthy lymph nodes do not stay enlarged for extended periods of time.They also should not be bigger than 2 cm or round. If at anytime you find one that is hard and doesn't move,request a biopsy. Also,they should not feel rubbery. Your symptoms range widely.Hopefully by now they have ruled somethings out for you and not just said I don't know so lets call it an autoimmune problem and dope you up. Your Ck and lipids are regulated by the International workings of the complicated metabolic system. I wouldon't get a high contrast CT or Mr I of your lymphatic system. Also, when they check your thyroid make sure they look at your FREE T3. They will tell you that is enough and it's not. T3 shows how well your body converts T4. I hope you get this resolved. Let me know if you have any questions. I hope you are better.

20

Did you ever figure out what was wrong? I have similar symptoms.