HELP! swollen/painful glands and many other ongoing symptoms
Posted , 45 users are following.
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.
1 like, 41 replies
tonya57892 hjo
Posted
I have the same symptoms. I went to my GP 3 years ago with swollen lymph nodes in neck. After repeated labs, he referred me to endocrinologist. My cortisol levels were super high. I repeated 24 hr urine labs and 3 night saliva tests , which confirmed Cushings. Endo ordered MRI, certain I had a pituitary mass. MRI was clean. I was then sent to Mayo Clinic. My cortisol levels had returned to normal, so Cushings was ruled out. I returned home,and had a CT scan of abdomen. In short, I had masses on left adrenal, liver, left ovary and right ovary. Ovarian masses were removed, along with left ovary. My adrenal mass resolved on its own. I was told to "watch" liver mass. I constantly have blood in my urine. My lymph nodes throughout my entire body are swollen and VERY painful. I had my first mammogram( ijust turned 40) 2 weeks ago. I have to go back in morning to have a second one due to a finding in my right breast. I just want to give up and live in pain.
Rener tonya57892
Posted
pamela08824 hjo
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I'm New also and never answered one of these but as I read you post I was reading my own symptoms. Exactly! Very scary. Some days like today I think I'm dieing. There's no other explanations for this kind of pain. Fibromyalgia is got to be the worst pain in history. If you find something to ease it please share. I work with this. My pain Dr keeps giving me pain pills which barely touch the pain and steroid injections. I'm in tears right now. Can't take much more.
FLYBEE pamela08824
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I've just replied to the OP please read it as it might help you
FLYBEE hjo
Posted
Hi....
This is quite an old post I've come across in searching for painfull lymph nodes.
However, my reply is not to do with them but you initial symptoms.
I like you was very active through my work, needed a good 8 hrs a night.
First symptoms were aching hips/pelvis area, then other joints. Tired.... so tired. Slept unless at work. VERY LOW B12 and jabs given. Improved for about 6 months then started having more symptoms. Dry mouth/eyes, optical migranes/headaches at the back of the skull into the neck, tingling/numbness of feet and hands..... the list goes on and on. I didn't have things ALL the time. Flare ups.
Next.... lack of sleep. Went from sleeping hours to where I'd be lucky to get 6hrs undisturbed. Now I'm awake every couple hours.
Over the past 5 years I've had more tests and investigationsee than enough and often to be told there was nothing they could find. One Doctor had the cheek to say in his explanation "psychosomatic" thinking I wouldn't understand due to the way I sometime come across, thick/stupid, I'm any thing but and told him that. "So you think I'm imagining all this pain and like not been able to do half of what I used to, all in my head". Was really angry. Anyways...... turns out he was right but not how he thought.
I was finally given a diagnosis of Fibromyalgia and Chronic Myofascial Pain.
Fibromyalgia has hundreds of symptoms and often mimics other illnesses. It's cause is still not fully understood. It is a neurological disorder as signals get mixed up from the nerve ends to the brain. Hence things can really heart that shouldn't. I have triggers that Flare symptoms up and that can set of other symptoms. Vicious circle.
Until present I took epilepsy Meds but I'm not epileptic. They control pain levels and this helps sleep.
Please research Fibromyalgia and be careful in any social media or Web forumsite that offer support. You will find things out that can help you but I found it very depressing when coping with fibromyalgia is depressing enough.
Stay positive with fibromyalgia and learn to balance your life so you can still work have a social life and be independent. Research the fibromyalgia spoon theory.
Hope this helps you or some one else that reads it.
?
Rener FLYBEE
Posted
Not sure if this will help but recently after 5 years of one thing after another making Me so very sick well I stopped running from Specialist to Specialist and thought. When did I last feel good? I was a chronic pain sufferer who decided no to opiates and benzos! So I started the non addicting CNS med Gabapentin and trazadone for sleep. Stopped taking trazadone when my sodium got so depleted. Wow! I got sick. Went from 2 to 24 meds. 5 years of upping my dosage to a final of 3600 mg per day. Decided I'm not taking that anymore. Lol! You can't just stop it's a grueling very slow taper. Don't stop if on and talk to Doctor first! Long story short I'm slowly regaining my health! It was the gabapentin and every time I was given a new medicine for a new side effect then I got more side effects! I was very close to dying. Couldn't get my electrolytes balanced. ICU had become My home!! These skeptic meds and CNS meds are great for some but not for Me! I was put on oxicarbizapine too. I would rather take a pain pill! Yet after 5 years of excruciating pelvic pain, I don't think I will need a pain pill again!! I wore out My adrenal glands it was that bad and not one Doctor thought to mention the medicine I was on!! Good luck! Sherri
kathryn6777 hjo
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This sounds like exactly what I've been going through!!! Were your doctor's ever able to give you any information?
DinaCruiser hjo
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DinaCruiser hjo
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Have your doc check for Paget's disease.
jade13851 hjo
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Hi I know this is an old post but could you t of you got any answers at all?
I have all these symptoms but I'm most concerned about rexit rant swollen painful lymph nodes all through my body and the doctors just won't listen or do further tests , I'm out of my mind with worry as I have all the symptoms of lymphoma and it's just seems to get worse x
lorrik hjo
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