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Why have my lymph nodes been tender and swollen for 8 years?

Hello, everyone.  I have had swollen, tender lymph nodes for just over 8 years now.  They are larger than they should be, are very easy to feel, and are tender to the touch (even when I don't touch them, they often have episodes of tenderness even in a relaxed state).  My primary doctor felt them and agreed they are enlarged.  He ordered a lymph node biopsy after an ultrasound.  I have the diagnosis notes, which I have listed below.  In addition to asking for suggestions on what could be causing my ailments, I would also like to know your thoughts on the diagnosis:

"...right groin lymph node shows fibrous tissue and minute fragments of lymphoid tissue with vascular congestion and rare possible follicles.  There are no definite Reed-Stenberg cells, metastatic carcinoma or granulomas identified.  The findings suggest a reactive lymph node".

I have recently run tests such as a comprehensive metabolic panel, c-reactive protein, ESR, TB, Antinuclear Antibody IFA (ANA), Thyroid, Cascade, CBC and Diff.  All of these tests have come back normal.

I would appreciate feedback on this.  

Thank you.
51 Responses
1081992 tn?1389903637
COMMUNITY LEADER
Hi, crow.

"tender"
That's probably from the vascular congestion in the nodes. IOW, a lot of blood cells packed into the blood vessels, with some possible swelling that causes the tenderness.

"swollen for 8 years"
That's likely mostly from the fibrous tissue, which can last for very many years and is more or less inert. A synonym is scar tissue. It probably occurred from an infection that got into the nodes.

"The findings suggest a reactive lymph node"
So something (that is not-cancer) is still ongoing in the nodes. The term "reactive" usually means that the immune cells in the nodes are reacting to some infection; or are reacting to some sort of imaginary infection so to speak, IOW something like autoimmunity.

If there is an active infection, it would likely be an STD, or something like a cut that happened on a leg or foot. How about cat scratches?

Are you having any joint or skin problems?


That's for starters.
1 Comments
Ken, thank you for the reply.  Sorry it took so long for me to log back in and see this.  After reading your response, I guess the question I'm remaining with then is, where do I go from here?  All of my bloodwork is normal; absolutely nothing out of range.  If this is, in fact, an infection, how do I go about knowing what infection it is?

I have read that sometimes lymph nodes can stay swollen, but they should no longer be tender.  Mine are still tender.  I have several on both sides of my groin and a few under each armpit that I can feel and are tender.

Could you point me in the right direction where to go with this now?  I am at a loss.  

I have painful knee joints, but that's about it.  The knee pain only comes when they incur an impact, i.e. running/jogging.  I can't run more than 100 feet without having to stop because they hurt.  This began immediately after the lymph nodes began to swell.

As far as skin issues, the only problem I've had is that I've gotten (3) small brown lesions on my lips.  The first two lasted a few days then disappeared, and the third one left a mark on my lower lip.  I had a dermatologist look at it, and he told me it was nothing to be concerned about.
1081992 tn?1389903637
COMMUNITY LEADER
As for disseminated gonococcal infection? I'd think the pathologist could have looked for gonorrhea in the excised node, with an appropriate stain. Since you don't mention it was found, I'd guess with your history they did look but it was not found. Correct or not?
1 Comments
Ken, thank you so much for the reply.  I appreciate the fact that, when I tell you my symptoms, you don't say something along the lines of "well, go to the doctor if you're worried about it".  You seem to genuinely care about others' well-being, and it helps that you also seem very knowledgeable in this subject.

In response to some of your remarks:  

-I am unsure whether they specifically looked for disseminated gonococcal infection in the node.  They certainly didn't mention anything.

-I'm unaware of having any CTDCascade test done...in fact, I'm certain I never had one.

-Thanks for the information on the knee pain!  It's at least a step in some direction!  I don't really notice any swelling (as far as enlargement goes), and it feels no different in the mornings than it does at any other part of the day.  As mentioned, the only time I feel pain from them is when I run/jog.  It's so intense that I can no longer run actually.  After researching the anatomy of the knee, I would definitely say that the pain is coming from the synovium.  Both knees hurt equally upon running.  While I can't be certain the EXACT day the pain started, I can definitely say that this was right around the time my lymph nodes started to swell (within a week or so).  Ibuprofen/other pain killers do absolutely nothing to numb the pain.

Again, thank you for all of this information.  I have learned a great deal from you.  You may not be able to answer this, but how would I go about seeing a rheumatologist or immunologist?  Would I likely need to be referred to one by my PCP?

Thank you, Ken!  Enjoy your weekend!

1081992 tn?1389903637
COMMUNITY LEADER
You had the CTDCascade test. If that was after the biopsy, that tends to say the biopsy ruled out gonnorhea in the node because they began looking elsewhere.

ConnectiveTissueDiseases are autoimmune, like rheumatoid arthritis.
1081992 tn?1389903637
COMMUNITY LEADER
"Could you point me in the right direction where to go with this now?  I am at a loss."
"I have painful knee joints..."
It might be lucky that you have the knee problem, because that gives you reason to see a rheumatologist. I think months ago I had mentioned to you 'reactive arthritis'. That's when something elsewhere is causing generalized inflammation, which probably stirs up your immune system which can then attack your knee. - and also keep the nodes inflamed.

How much swelling is there? (That'd be easy to know if only one was bad, then you could compare one to the other.) Was there knee swelling from the very beginning day that the nodes popped up?

What happened when you tried ibuprofen? What location internally *exactly* is hurting? A rheumy would want to know e.g. if it's the synovium, or maybe something like a torn meniscus - but it'd be unusual to have two torn at the same time.

Important! Are the knees bad in the morning? For how long? (We're trying to distinguish between mechanical damage and inflammatory problems. Being bilateral tends a lot to inflammatory, being sudden onset might distinguish which kind of inflammation.)

If the knee is secondary to some inflammation, then what the rheumy does would possibly also end the node tenderness.


"I have read that sometimes lymph nodes can stay swollen, but they should no longer be tender.  Mine are still tender."
Yep, as discussed, the internal blood can cause the tenderness. You have both that and the fibrosis -- and probably inflammation also which can cause swelling which can cause tenderness.

Having the blood congestion in there is probably much less frequent than inflammation or fibrosis, so that's a noteworthy clue, I think.

1081992 tn?1389903637
COMMUNITY LEADER
"All of my bloodwork is normal; absolutely nothing out of range.  If this is, in fact, an infection, how do I go about knowing what infection it is?"
Well, it would be in tissue somewhere. An 'occult infection". It might even be in the knees. Not likely, but possible -- and anything likely for you has been ruled out.

I know somebody who had a knee replacement, all was fine. Then he cut his hand while working in the yard, that bacteria travelled to the knee. He had to have the knee redone.

1081992 tn?1389903637
COMMUNITY LEADER
What Tx does a rheumy do for a rheumatic disorder? Mostly immune suppression. The same as an immunologist might do.


"...small brown lesions on my lips...  I had a dermatologist look at it, and he told me it was nothing to be concerned about"
Right, because it's very minor and a dermatologist probably isn't  going to consider a systemic inflammatory cause. But a doc whose field is the immune system could consider that a clue to your mystery condition.
1081992 tn?1389903637
COMMUNITY LEADER
I'd also observe myself very carefully and see if anything eaten makes things worse.
1081992 tn?1389903637
COMMUNITY LEADER
Thanks for the nice compliments, crow. Right, it's ridiculous when somebody goes online looking for help/info/insights, they get told to "go see a doctor" or "go see more doctors". What could be more useless?

Before we go further: is there also no heat from the knees? Inflammation has traditionally been described as swelling, heat, redness, pain.

Is the location of the pain in the front by the kneecap, inside or outside (medial is where the knees touch, lateral is the opposite), or maybe deep inside?
1 Comments
I have never felt any heat from them.  As long as I don’t run, they’re not painful at all, or swollen or red that I can notice.  The pain when running comes from deep inside the knee (it is not surface level), and I would say it is more pronounced on the sides of the knee.  The knee cap itself is not painful, only the tissue behind it.
1081992 tn?1389903637
COMMUNITY LEADER
Well, lack of swelling or heat changes things. A rheumy is also likely to look for morning stiffness that lasts an hour or more, for the knees to be rheumatic. You don't have that, so the problem seems to instead be mechanical injury such as with torn meniscus. Yet why would that occur in both knees at the same time and to the same degree? Seems very odd, but that's a clue.

A working hypothesis for now: something about the infection weakened some structure in the knees (tendon or blood vessels, e.g.). Then you did something like a run and that injured both weakened knees at the same time, but maybe with a delayed effect. Maybe instead of torn meniscus, there is blood inside the knees, as in the nodes. This is a long shot; but then your entire case in unusual, so we have to look at unusual ideas.

Do you have any long time unusual medical conditions, or family does? Lupus, e.g.

Did you have a knee scan? They might start with just a plain x-ray.

I don't know but I'd guess that seeing a rheumy or immunologist depends on what insurance says and what any particular doc requires. There are also online consults, of which I know little but I think you might get a slapdash doc or a good one by chance. Immunologists are probably less common than rheumies, but could be a better choice because a rheumy might just reject you for lack of morning stiffness and swelling. I forget if you have seen an Infectious Disease doc - the spots seem to point to a virus.

An internist that advertises themselves as 'Functional Medicine' would try to tie everything together, which is what you should want. So I'd say that's choice #1 for starters. Ideally, there also are Diagnosticians; they solve mystery cases but they are rare and would require a long wait at a big hospital/medgroup.

I'd avoid orthopedists since they are likely to ignore the association with whatever infection and inflammation caused the nodes - just as the skin doc ignored the overall picture.
1 Comments
Thank you.  I think I'm going to try to go for a jog later on today to try and pinpoint exactly where the pain in the knee comes from.  I will also take note of anything else I notice while doing so.  

No known medical conditions run in the family.

I saw an Infectious Disease doctor a couple of months ago.  He took a quick glance at the dark spots on my lip but thought nothing of them.  The dermatologist I saw a little while back also thought nothing of them.  I suppose all I can do is hope and pray that this is not a virus (to my knowledge, there is no cure for a virus, and since this has been going on for 8 years now, I doubt it will just go away on its own).

No knee scans as of yet; perhaps that will be the next step once we decide on what type of doctor I should see.  I like your idea about the Internal Medicine doctor or Diagnostician.  Would one of these types of doctors be able to help me find a diagnosis for why my nodes are congested with blood?

Thank you for the replies.
1081992 tn?1389903637
COMMUNITY LEADER
Another approach is to find a DDx for why the nodes are congested with blood, and see what on the DDx can also cause systemic symptoms. I'll try to look into that some time.
1081992 tn?1389903637
COMMUNITY LEADER
"...going to try to go for a jog later on today to try and pinpoint exactly where the pain in the knee comes from.  I will also take note of anything else I notice while doing so."

Perfect! Bravo :)

Yes, intensive self observation is very valuable in mystery cases.

It also might be unusual that it takes 100 feet or so before the pain comes. I don't know about torn meniscus symptoms, but that should be easy to find out before you go.
1081992 tn?1389903637
COMMUNITY LEADER
"Would one of these types of doctors be able to help me find a diagnosis for why my nodes are congested with blood?"
The aim is to find a single cause for all: nodes, lip lesions, and knees. There is the diagnostic principle of Occam's Razor, which says that it's best to assume that everything has one cause - else there's a lot of (possible but unlikely) coincidence involved.

Unless in a big city, I'd websearch there for a functional med internist. You want one that's open minded, but not flakey nor a huckster that wants you to get a lot of needless/expensive in house Tx.

If in future any ID doc says, "don't worry about it", I'd immediately say "Yes, but... I also have the reactive nodes and the knees, so what infectious agent can do all three?"  
1 Comments
Ken, good news:  I tried running for a bit on the treadmill tonight, and my knees didn't hurt at all.  Granted, I only jogged for a couple of minutes at most, but in the past, I would have not been able to do this.  They would've started hurting almost immediately.  My theory is this:  as you know, I was diagnosed with Gonorrhea early on.  I know that this bacteria can affect joints, including the knees.  I believe that was the cause, and after taking the antibiotics back then, it must have cleared up my knee pain.  While I do not remember the exact dates, the onset of the knee joint pain came immediately after being diagnosed with Gonorrhea (within a couple of weeks).  Admittedly, I haven't ran in several years.  Once they started hurting, I gave up on running and haven't tried it since.

So...I am left with the swollen, tender lymph nodes in my groin and armpits.  There are at least a half a dozen on each side of my groin and at least a couple under each armpit.  As for the spots on my lower lip, the last time I ever had a "blister" (meaning when it first showed up and was tender for a few days) was August of 2017.  I have not had a new one since then, and the spot that one of them left on my lower lip has no sensation (doesn't hurt); it's just a very small brownish spot.

The only other thing that I suffer from is that I believe I am still suffering from a candida overgrowth.  I'm not sure if you remember when I mentioned this earlier, but immediately when all this started (21 days after the sexual encounter), this symptom came on the exact same day as my first lip lesion (maybe an hour apart from each other).  I first noticed it as an itching in my anus.  I didn't think much of it, but then I noticed my scrotum turned a reddish color and was scaly looking.  The doctor performed a scrape test and diagnosed it as candida.  This happened BEFORE any antibiotics were introduced.  I no longer have the red scrotum, but every couple of months, I will have blood in my stools (bright red, not dark).  I had a colonoscopy several years ago for it, and while I don't have the test results, I remember the doctor explaining what he found.  It was nothing serious (no polyps), but he found some redness in one area of my colon and he used a certain terminology to describe it (for the life of me, I don't remember what that terminology was), but I remember doing a Google search after he told me, and one of the causes of this condition was candida according to my research.  Well, I still have the bloody stools every couple of months and occasionally have mucus in my stools as well.  This leads me to believe I still have a candida overgrowth; I am just not sure what is causing it.  All I do know is that it started the exact same day that I had the first lip lesion and the pain in the glans of my penis (if you recall me mentioning that symptom as well), so I am certain these are all related.

I'm sorry for the long post; just wanted to let you know that at least one symptom is gone, and I am left with the swollen lymph nodes, the possible candida overgrowth, and even though I haven't experienced it in three years, the lip blisters/lesions.

With this information, what is the next step you think I should take?
1081992 tn?1389903637
COMMUNITY LEADER
"all I can do is hope and pray that this is not a virus"
I just stumbled on something. It might be vascular, an angiokeratoma or something similar. That could coincide with the vascular congestion on the lips and maybe also the lesion found via the intestinal scoping (plus the sometimes bleeding).

1 Comments
Thank you, Ken.  This gives me something I can research.  What do you suggest in regards to the possibility of a candida overgrowth?
1081992 tn?1389903637
COMMUNITY LEADER
Congratulations on your successful running experiment, crow. That probably also means though that a rheumy would say, "why did you come to me then?" But always personally remember that the knee experience is a clue.

Okay, let's focus on the candida for now. If you're feeling adventurous, you can do a simple test. Eat something heavy in sugar (sucrose), preferably thick like fudge. When candida eats sugar, it creates lots of gas. If you don't get full of gas, then we'll tend to think against candida. (Drinking soda might only mean the sugar gets absorbed before the yeast can start working on it.)

Candida is white, as seen in oral or throat thrush. Can it produce dark lip lesions? Probably not, but I don't know for sure.

What candida can do is generate lots of toxins, including aldehydes. I've even heard that people with lots of GI yeast can sometimes feel alcohol intoxication, that's what fermentation by yeast makes. Heavy overgrowth can also create 'leaky gut', which means lots of bad molecules get into blood circulation. That can create generalized immune activation, like tons of sirens going off, which can make the nodes react.

You don't have periods where you feel tiredness and malaise for days?

"With this information, what is the next step you think I should take?"
A functional medicine internist. Hopefully you can find some with ads and/or reviews, to find one that is not too straitlaced and not too flakey - being just right  :)  Not too young (inexperienced) or not too old (possibly burned out). I'd certainly mention Occam's Razor, and if the doc dismisses that, Id' think I got the wrong doc.

In the meantime, we can still be going back and forth like we are. The more than you understand going in, the better off you'll be and the less precious time with any doc gets wasted.

Tx for yeast? Trying to starve it, kill it, and/or intervene in inter-microbial warfare - i.e., promote its competitors. However, that doesn't remove the underlying problem, it just removes the trigger. Which is still very good, of course.
1 Comments
Hi, Ken.  I can already tell you that I do not tolerate sugar well which is why I stay away from it.  Yes, it only got bad once I started having these symptoms.  I don't really get gassy though; sugar gives me a headache, makes me lose my appetite, and makes me constipated.  I take a probiotic every day to help with gut problems.  I do feel tired often, but never to the point where I find it hard to function; I chalk this up to poor sleeping habits.  

I appreciate the suggestion to see the functional medicine internist.  Is this the same as a Diagnostician?  If so, I found one locally that has great reviews.  To my knowledge, I don't think they would have a sample of my old tissue still frozen, so that would require me to have another biopsy done.  It was extremely difficult to get my PCP to agree to the first one.  

1081992 tn?1389903637
COMMUNITY LEADER
Your biopsy pathology seems mostly done only to rule it a cancer. I'd want a doc to have your frozen samples stained and tested for whatever active infection might be present. AFAIK, that would look for microbes, or for whatever immune cells are thronging inside the node. E.g. lots of T-cells can mean a virus is being fought.
1 Comments
That's great news that it is standard practice to keep and refrigerate tissues.  Do you recommend that I make an appointment with the Diagnostician, or do you think I should try to seek out a Functional Medicine Internist?  

I do try my best to stay away from sugar, but I suppose you could be right; maybe I do have some on occasion.  However, can we both agree that, regardless of whether I have sugar, I should not be bleeding in my GI tract?
1081992 tn?1389903637
COMMUNITY LEADER
"rule out"*
1081992 tn?1389903637
COMMUNITY LEADER
"...functional medicine internist.  Is this the same as a Diagnostician?"
Nope. I'm curious about the waiting time for the diagnostician. Let me know.

"I don't think they would have a sample of my old tissue still frozen"
Doing that is standard.

1081992 tn?1389903637
COMMUNITY LEADER
"It was extremely difficult to get my PCP to agree to the first one."
Probably because the ultrasound said the nodes were benign. Plus the behavior (not growing) is benign.

It's actually a very good plus for you that someone can examine the biopsy samples to try to see what infectious agent(s) might be present.

------------

I took some time to look into "vascular congestion" in nodes. There is very little info. In 10 years on this forum, I have never seen that before you. So since it is rare, that should be a tremendous clue for a diagnostician.
1081992 tn?1389903637
COMMUNITY LEADER
It might be that the times you have GI bleeding is because you slip and have sugar. But yeast can also live on starch.

There are some bacteria that mimic yeast. Klebsiella is suspect in spondyloarthopathies, which can cause knee problems.
1081992 tn?1389903637
COMMUNITY LEADER
"Do you recommend that I make an appointment with the Diagnostician, or do you think I should try to seek out a Functional Medicine Internist?"
The diagnostician is probably better, but the wait might be half a year or more.

"I should not be bleeding in my GI tract?"
Correct, there is some pathology. But if it's transient, it might not be that noteworthy.
1 Comments
Ken, I have made an appointment with a doctor who specializes in internal medicine for this Friday.  With all the things you know of my case, can you recommend a few things I should mention/ask the doctor so I don't leave anything important out?  I am going to take my report for my lymph node biopsy to him so he can read it; I will also mention the vascular congestion and see what he has to say about it.  Do you think I should take my other tests to him as well such as the CBC/differential; metabolic panel; etc?  Remember, all of these test results came back completely normal.

Any advice on certain things to mention to give the doctor a better understanding would be helpful.  Thanks!
1081992 tn?1389903637
COMMUNITY LEADER
You didn't select an internist that says they are "functional medicine"?

I'd be determined that all your symptoms be seen as related to one underlying cause (the Occam's Razor approach). Each Sx (symptom) is a clue to all the other Sx's. Else each individual Sx could be dismissed as not very threatening and not able to be Dx'ed individually anyway. Most docs (excepting diagnosticians) don't like cases they can't solve right away, so they might dismiss.

Yes, definitely stress the node's vascular congestion - because it's rare. Let's say you want to narrow down an animal. I say it is large. It has hoofs. It runs fast. Then when I say "striped", then BAM that zeroes it in to zebra.

"Do you think I should take my other tests to him as well such as the CBC/differential; metabolic panel; etc?"
If it's not a lot of trouble, yes. Because that doc doesn't know yet that you are smart and capable, and what you say can be relied on. So they might want to see for themselves. Some practices will want to redo all tests anyway, like Mayo.

I would begin by saying, "It all started with the STD, and then I reacted in ways that are not the usual. I think I maybe possibly perhaps have a persistent infection AND unusual immune reactions". Trust your own instincts. You are  somewhat lobbying as to which direction you'd like the doc's investigation to go. You don't want to get merely dismissed like with the skin doc.

Write down questions beforehand. It's common for something to come completely out of left field, then you forget your prepared speeches. Good luck. Let me know.
2 Comments
The provider I had selected is an internist; not a functional medicine internist.  I can keep looking around for a doctor that specializes in functional medicine that comes with high reviews.  This doctor that I have made an appointment with came with extremely high ratings so I figured I'd give him a try.  There is also one other doctor that I found that specializes in internal medicine that a couple of his patients describe him as an "excellent Diagnostician" (although it does not specify that he is, in fact, a Diagnostician in his information).  The reason I did not look for an appointment with him is that, I believe you told me to try to find someone not too young and not too old.  This doctor is 67 years old; the one I made an appointment with is 49.  I suppose if I don't get any answers from my visit, I can visit the older doctor as well.

Unfortunately, the doctor's office called me yesterday, and I had to reschedule my appointment.  Instead of this coming Friday, I will have to wait until Oct. 16.  I hate the waiting game, and it looks like I need to wait 3 more weeks now.  Do you think I should look for another appointment with someone else in the meantime?  Perhaps with the Diagnostician?  Or keep looking for a functional medicine doctor?

Thank you for the advice on how to prepare and what questions to ask/what to focus on.  I am going to take note of all your suggestions and go in prepared.  
I also wanted to note that, on my lymph node biopsy report, it states that there is "vascular congestion and rare possible follicles".  I just wanted to clarify that the "rare" adjective was specific to the "possible follicles", not the "vascular congestion".  Would this change anything in your assessment?
1081992 tn?1389903637
COMMUNITY LEADER
'it states that there is "vascular congestion and rare possible follicles".  I just wanted to clarify that the "rare" adjective was specific to the "possible follicles", not the "vascular congestion".  Would this change anything in your assessment?'
Nope, I believe the pathologist is talking about quantity of follicles, not the rarity among the population of patients, of that finding. The follicles are like tiny factories where immune cells (the B-cells) would be made when a node is reactive. That node had only a few follicles.

But I do think that the vascular congestion is rare in the population. That's why it's probably a good clue.

Btw, your detailed analytical thinking on all of this is great. I think that's your best shot at getting a Dx, rather than just being a passive patient bouncing from one doctor to another.
1081992 tn?1389903637
COMMUNITY LEADER
Okay, if the good diagnostician-internist is available, I'd go there. I think that outweighs the age considerations, *especially* if his good reviews are recent.

In your mystery case. I'd disregard any good reviews for any doc that are based just on bedside manner. But the trait of "good listener" is valuable for your case.

"Do you think I should look for another appointment with someone else in the meantime?"
Absolutely.  
"Perhaps with the Diagnostician?
Yes, if there's not a very long wait.


Once again, your thinking is good on all this.

1081992 tn?1389903637
COMMUNITY LEADER
Let's roughly review some terms. Internist (internal medicine doctor) is a "board certified specialty". They have to study that and pass exams for it.

But 'Diagostician" is merely informal. It is meant to indicate that this doc believes they are good at mystery cases.

Also, "functional medicine doctor" is also informal, and is meant to indicate that this doc looks for reasons *why* the patient has particular symptoms. So that's also good for mystery cases. (The ordinary approach, which is standard, is just to 'pattern match' symptoms and get the patient out the door.)

An internist is an ordinary doctor, like a General Practitioner. Except that an internist is for adults only, not children.


Surprisingly, what we commonly think of as specialists (such as cardiologists and rheumatologists) are really a sub-specialty of internist.

Too much info, I know :)  But I'm on a roll :)

As always, let me know what happens.
1 Comments
Great, Ken.  All of this is helpful.  And both doctors that I mentioned came with very high reviews on "listened and answered questions".  Most recent reviews are from 2017.  I'm unsure how recently the site was updated so I hope he hasn't retired yet.  It says he's accepting new patients so we'll see.  I'm going to give his office a call tomorrow and see when he can work me in.

I will definitely let you know what happens.  Thank you.
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