valliali Posted September 16, 2008 Report Share Posted September 16, 2008 do you guys have this?i have had swollen lymph nodes for over a year, since i got sick. had a CT scan to rule out lymphoma, and my ENT told me i should consider chronic fatigue syndrome if they didn't go away in 3 months. i don't think i have cfs, and it's been eight months since then, and they are still present. they fluctuate in size most days. sometimes i don't feel them, other days i definitely noticeably feel them. this doesn't seem to fit my pots diagnosis, but i'm wondering if anyone can relate? Quote Link to comment Share on other sites More sharing options...
flop Posted September 16, 2008 Report Share Posted September 16, 2008 My sister has these sort of lymph nodes that swell up repeatedly (she hasn't been diagnosed with POTS or CFS and doesn't have symptoms of them either). Certainly every time she gets a hint of a cold or sore throat they pop-up and become painful, they are also there other times when she doesn't feel ill. Hers appeared when she got a bad viral infection a few years ago - it was probably glandular fever (infectious mononucleosis) but she wasn't tested at the time. Our doctor says they are post-viral reactive nodes and not to worry about them. She did get sent to a surgeon to see about a biopsy to rule out cancer but on the clinic visit they were difficult to feel and the surgeon said that if they come and go it is highly unlikely to be cancer so he cancelled the biopsy.Lymph nodes like this are part of the diagnostic criteria for CFS but you need lots of other symptoms from the list as well as the lymph nodes. If you don't have the other symptoms it is probably not CFS.Flop Quote Link to comment Share on other sites More sharing options...
kitchmill Posted September 16, 2008 Report Share Posted September 16, 2008 Very interesting that you posted this! I had no idea this was related to CFS. I've had one bad swollen lymph node on my throat for YEARS. It gets better and worse, but never goes away. It's typically the worst in the mornings and then gets better over the course of a few hours. I had mentioned it to several doctors over the years, but like everything else, it got brushed off. Finally, after it being constantly swollen for 2 weeks straight, my PCP decided to send me for an ultrasound. He thought it could be my thyroid, but I knew from the placement that it was much too high on my neck to be my thyroid. Anyway, I took the rx for the ultrasound and had it done yesterday.The technician agreed that it has nothing to do with my thyroid. She even said that I have a small thyroid! And this is nowhere near it. She suspects that it's a lymph node, but I won't know for sure until the doctor reviews the report and sends it to my PCP. I'm just glad that even though she was scanning it on a "good" day, there was still plenty for her to see.Interesting that there is a link between this and CFS... I have always thought I should be classified as CFS but never knew where to start on that. Now, with a POTS diagnosis, I'm finding out that indeed many CFS people have POTS, and not the other way around. My cardiologist suggested that I see a rheumatologist for possible CFS, but only if he couldn't help me a bit more first. Is a rheumatologist even the right place to go? Quote Link to comment Share on other sites More sharing options...
valliali Posted September 17, 2008 Author Report Share Posted September 17, 2008 Hi, thank you guys for your responses.Rachel, good thing you got the lymph node checked out. I had a CT scan for mine, well more specifically because I also had a strange lump on my neck that ended up just being an enlarged carotid body. But the CT scan did show a chain of lymph nodes on both sides of my neck.They are there everyday. I haven't a cold or virus in at least six months, but they come and go daily. No triggers that I have been able to find.I too am looking into CFS. I have been diagnosed with POTS, but am feeling pretty sure that I don't have it. I was diagnosed off of a TTT that I passed until I had an episode of IST after the test. So I'm not sure how that indicated POTS, but...I think that CFS would better explain enlarged lymph nodes. The only thing is that I don't have debilitating fatigue. I often feel tired after physical exertion, but not always. I wouldn't list fatigue as one of my main symptoms. I think this likely disqualifies me??I need to see a rheumatologist too. Do you have joint problems? I have swollen finger joints, and my hips KILL me, but I can't say whether or not this is due to inflammation or arthritis. But I am only 24, with no history of arthritis, so I doubt that this isn't related to everything else going on. I definitely need to see a rheumy! Were you referred to one because CFS sufferers often have joint problems?Thanks for your insights, guys!! Quote Link to comment Share on other sites More sharing options...
scarfgirl Posted September 17, 2008 Report Share Posted September 17, 2008 My lymph nodes tend to swell whenever I relapse. It's one of the reasons I think my POTS is viral in nature. Quote Link to comment Share on other sites More sharing options...
kitchmill Posted September 17, 2008 Report Share Posted September 17, 2008 If I have CFS, it's also mild in nature (as is my POTS), but I definitely think it's there. It's not debilitating fatigue, but definitely exercise intolerance and I get ill after any kind of major exertion (taking the kids to the zoo type of activities). Even after a short vacation, I have learned to take an extra day off before going back to work so I don't overdo it by pushing myself too far. I have always required more than the typical 8 hours of sleep, and many times I wake up unrefreshed.I don't know about the rheumy... my cardio mentioned CFS and then he said that I would go see a rheumy. I have no idea if that's the right doc to see for it or not! I do get some joint pain, but that is not my predominant problem. Quote Link to comment Share on other sites More sharing options...
valliali Posted September 17, 2008 Author Report Share Posted September 17, 2008 Do your joints swell? Quote Link to comment Share on other sites More sharing options...
Tommyhoney Posted September 17, 2008 Report Share Posted September 17, 2008 its funny,val- seems we have alot in common......my lymph nodes mainly in armpits, are either swollen and painful, or feel like they're about to be, this has been going on since last Nov.....when I was younger had alot of node issues whenever infection coming on....but now it's all the time. Dry brushing seems to help if I'm not very symptomatic.Joint pain. Crazy joint pain, comes & goes.....lately won't go. Quote Link to comment Share on other sites More sharing options...
valliali Posted September 17, 2008 Author Report Share Posted September 17, 2008 Haha yes, very much alike!What is your diagnosis, if you don't mind me asking?It seems to me that swollen lymph nodes is not very common with POTS. Have you ruled out all possible infections/viruses? How many swollen lymph nodes do you have - like one or a chain?Also, are your joints swollen too? My finger joints get really puffy, and the fingers on my right hand are curled inward. Over the winter, I had developed these red nodules under the skin on a couple fingers that was intensely painful. They haven't come back since, but I can't shake what a seemingly unusual response this was. I am also not sure if joints that actually swell and curl are common with dysautonomia. I do not have any hypermobility, do you?I'm trying to figure out if these swollen issues are somewhat common with POTS because that is my diagnosis of now, and I would like to be able to accept it and move on, but I did get sick right after returning from living in rural Africa for a year, so I can't shake the possibility that something was caught there. I just don't know how worth it it would be for me to run to more and more doctors for more and more tests when I could just focus on understanding my given diagnosis. Quote Link to comment Share on other sites More sharing options...
flop Posted September 17, 2008 Report Share Posted September 17, 2008 For swollen joints and skin nodules I think that a rheumatologist would be a good option.Lymph nodes are relevant to several specialities but haematology and infectious diseases would probably be worth investigating.CFS doesn't really have a speciality of its own. My flat mate developed CFS after a viral infection (the same viral infection that probably started my asymptomatic POTS before the other virus that made me ill with POTS). She was treated by an infectious diseases consultant with a graded exercise program. I think that neurology and rheumatology probably see CFS patients too.It is so difficult to say what bits of any one person's illness are due to POTS as we are all so different. Perhaps discussing your concerns with your PCP would be a good place to start. Flop Quote Link to comment Share on other sites More sharing options...
daisy Posted September 17, 2008 Report Share Posted September 17, 2008 I thought that normal lymph nodes were pea-sized and could be palpable. My understanding is that they are always in chains along the neck - am I wrong about this? I have several that feel about the size of peas that I have been able to feel for years but never considered them swollen. I had one swell up like a golf ball in my groin when I was bitten by a tick so to me that was swollen. When you say swollen, do you mean that you can just feel them rolling around or are they really large? I had been told that it is not unusual to feel lymph nodes in various parts of our bodies around the size of a pea (sometimes elongated)..... Quote Link to comment Share on other sites More sharing options...
valliali Posted September 17, 2008 Author Report Share Posted September 17, 2008 no, they definitely get larger than peas. when they are not swollen, they are about the size of peas. when they swell, they are larger. the ones beside my trachea under my jaw are quite enlarged. they fluctuate in size pretty much daily, which is how i know they are actually swelling. my doctors have all agreed they are swollen, and i was sent in for a CT scan to make sure they did not appear irregular in form. my ENT agreed that they are enlarged, but not cancerous... Quote Link to comment Share on other sites More sharing options...
firewatcher Posted September 17, 2008 Report Share Posted September 17, 2008 At the moment, my lymph nodes are so swollen that my husband asked, "what's wrong with your neck?" You can see them lumping out from under my jaw, but I am also sick with some unknown virus he brought home and shared with all of us. I feel like I've been hit by a truck and then it backed up and parked on me and I sound like a frog.Croak... Quote Link to comment Share on other sites More sharing options...
kitchmill Posted September 17, 2008 Report Share Posted September 17, 2008 no, they definitely get larger than peas. when they are not swollen, they are about the size of peas. when they swell, they are larger. the ones beside my trachea under my jaw are quite enlarged. they fluctuate in size pretty much daily, which is how i know they are actually swelling. my doctors have all agreed they are swollen, and i was sent in for a CT scan to make sure they did not appear irregular in form. my ENT agreed that they are enlarged, but not cancerous...Val... that's exactly how (and where) mine is, except it's only on the left side and it NEVER gets smaller than about the size of a quarter. Just blows up to about the size of an egg when it's swollen (worse). I'm glad to hear that yours is nothing of concern, although mine is somewhat painful on a regular basis (probably since it is constantly swollen) and quite annoying. Quote Link to comment Share on other sites More sharing options...
gertie Posted September 17, 2008 Report Share Posted September 17, 2008 Mine on each side of my neck are usually swollen. They fluctuate from about the size of an egg to a little smaller. One side looks almost like I have the mumps. Quote Link to comment Share on other sites More sharing options...
valliali Posted September 17, 2008 Author Report Share Posted September 17, 2008 kitchmill and alicia - do you guys know that your swollen lymph nodes are from pots? have you ruled out viruses, infections, autoimmune diseases, etc???? Quote Link to comment Share on other sites More sharing options...
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