POLL: Swollen lymph nodes: Did you have these before getting ME/CFS, or did they only appear after?

For those with swollen lymph nodes, and a clearcut infectious (or other cause) onset of ME/CFS:


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Hip

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Swollen lymph nodes are linked to chronic fatigue syndrome, and are one of the characteristic symptoms of ME/CFS (tender lymph nodes, especially in the neck or armpit, are listed in the CCC and CDC Fukuda criteria for ME/CFS).

In my case, I developed some mild (but permanent) swollen lymph nodes at various locations – in the neck, under arms, chest and groin areas – long before I developed ME/CFS from a respiratory virus I caught many years later.

I had swollen lymph nodes as a permanent feature for over a decade, but only descended into ME/CFS once I'd caught a respiratory virus (that started as a nasty sore throat).

So my thoughts are that pre-existing swollen lymph nodes could be a factor that predisposes individuals to developing ME/CFS when they later catch a viral infection, or when they later are exposed to some other ME/CFS-triggering event (such as a mold exposure, a vaccination or surgery).

I'd like to hear other people's experiences regarding swollen lymph nodes.

My question is:

(a) Do you have swollen lymph nodes as part of your ME/CFS symptoms?

(b) Were these swollen lymph nodes present before the triggering event or infectious agent that you believe precipitated your ME/CFS, or did they only appear after your experienced your triggering event / infectious agent?



EDIT Jan 2016: I have just added a poll to this thread as well. So you can answer via the poll, and if you like, also answer by posting a comment in this thread.
 
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Enid

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Hello Hip - my answers to your queries are - (a) Yes very much part of ME and fluctuate. (b) Present after trigger only - as a development, locations as yours. (Trigger = unknown infection, sore throat never relieved)
 

Boule de feu

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I don't recall ever having swollen lymph nodes (maybe just a little under my left armpit - periodically - AFTER the disease was diagnosed - but maybe it's because I am more aware of what to look for). However, they are sooooo tender! At times, I can't touch them.

In November 2005, I got a really bad case of laryngitis (I use to be a Science teacher and could not teach anymore). My health never came back. I've been numbing my throat (non-stop) for five years now. It's like a strep throat that does not go away. They say it's related to the exhaustion?
 

ukxmrv

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I didn't have swollen lymph nodes at all before developing ME.

Mine was an acute viral onset and I had been a very well and healthy individual.
My onset was with very swollen lymph nodes, high temperature, badly swollen tonsils.

None of these symptoms beforehand.

XMRV+
 

Lynn

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After I had mono in college in 1979, the sore throat and swollen lymph nodes persisted for years. I think that was the beginning of ME/CFS for me but I didn't finally crash until 17 years after the original bout with mono. I just worked around the fatigue (sometimes unsuccessfuly) until I couldn't do it anymore and the cognitive problems became too severe. I don't have sore throats or swollen lymph nodes anymore.

Lynn
 

Marg

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.

My question is:
(a) Do you have swollen lymph nodes as part of your CFS symptoms?

I have never had the swollen glands or the sore throats. I have had most of the other symptoms though
 

justy

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Hi Hip, i have small, hard. tender lymph nodes in my neck (between the jaw and ear) and on the back of my neck. They have been swollen for the past 2 years continously although they fluctuate within the day. I have had swollen glands a lot in the past, since having glandualr fever as a teenager, but they only came to stay with my latest relapse a few years ago. My GP rather unhelpfully wouldnt feel where i told him they were and then claimed those ones werent importnat anyway!
 

Sing

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No, I never recall having swollen lymph nodes. Although this is in the criteria list, I think I recall Dr. Byron Hyde writing that he did not see this as one of the typical characteristics of ME. The original American definition of CFS was written by a committee who had little clinical experience except for Mono and that influenced their case definition. (Of course some people start with Mono.) I am sorry I do not remember where this was written and please correct me if I am wrong.

I did not have headaches either. I have had the sore throats and all the other symptoms.
 

Frickly

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Swollen lymph nodes in my neck were my first symptom, years before any others. Now they are almost always at least a little swollen but do fluctuate with my other symptoms. I had to go on steroids a few weeks ago because they were so swollen it was pushing on my esophogus and making it difficult to swollow. Very irritating symptom.
 
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My question is:
(a) Do you have swollen lymph nodes as part of your CFS symptoms?
(b) Were these swollen lymph nodes present before the triggering event/infectious agent (such as a virus) that you believe precipitated your CFS, or did they only appear after your experienced your triggering event/infectious agent?
For years I had bouts of swollen lymph nodes along with fatigue. I am not sure what triggered the bouts of swollen lymph nodes. Sometimes I noticed the swelling just in my neck and in other times it was all over my body (behind knees, groin area, arpits, etc.) Usually, it would last a few weeks to a few months and then it would go away---then I had a really bad episode witch included the swollen lymph nodes, alot of mucus from lungs and sinuses, fever and vomitting. During this illness I started to feel the Fibromyalgia pain. The weird thing is that as time went by, my pain increased, but the episodes of swollen lymph nodes decreased. I still go through flare ups often where I feel like I have the flu, but no swollen lymph nodes. It makes me wonder if CFS is the disease and Fibromyalgia is the result of the immune system working hard to fight off whatever is causing CFS, but not succeeding.
 

*GG*

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Swollen lymph nodes are linked to chronic fatigue syndrome, and are in fact one of the typical characteristic symptoms of CFS.

I'd like to hear other people's experiences regarding swollen lymph nodes.

My question is:
(a) Do you have swollen lymph nodes as part of your CFS symptoms?
(b) Were these swollen lymph nodes present before the triggering event/infectious agent (such as a virus) that you believe precipitated your CFS, or did they only appear after your experienced your triggering event/infectious agent?
A) Not sure, but I don't think so, have had a few visits with specialists where they check you out all over, never heard it mentioned or seen it written in Drs notes.

B) Yes, Mono onset of ME/CFS. My PCP initially thought I had a blood infection and sent me to the hospital after I was sick for a couple of weeks or so. Went to the hospital and the told me I had Mono and they sent me home at 10pm! I had an HMO for insurance at the time, so I couldn't afford to stay the night, although I asked, since I lived about an hour from this hospital.

GG
 

Sing

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Well, it looks as though some people get swollen lymph nodes and others don't. I've been more of the sore throat, etc. type. Don't have enough of a scientific background to speculate on these characteristics.
 

Hip

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Well, it looks as though some people get swollen lymph nodes and others don't. I've been more of the sore throat, etc. type. Don't have enough of a scientific background to speculate on these characteristics.
Yes, it seems that way. Swollen lymph nodes or lymph pain seems predominant (I counted 7 out of the 9 people that replied above as having this), but is not universal (like most clinical symptoms in CFS!).

The reason for this interest in lymph nodes is because I read that it is within the lymph nodes that dendritic cells are activated into either Th1 or Th2 mode, and that perhaps this is linked to the Th1/Th2 imbalance in CFS.

Here is some info on how dendritic cells work:

Dendritic cells roam the body, checking each particle they come across for a self or invader "label." Upon encountering an invader, a dendritic cell will "swallow it," cut it up, and carry the pieces to the nearest lymph node. Once there, proteins inside the dendritic cell "present" protein fragments of the virus on the cell's surface for consideration by T cells gathered there. Once activated by high enough levels of target protein fragment, T cells become capable of destroying the virus (ref: 1).
 
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My triggering event was glandular fever, for which my first symptom was a huge lymph node on the right side of the front of my neck. Ever since then this lymph node has fluctuated up and down, but definitely seems a major part of my ME/CFS. Just this week it swelled up hugely, and my right tonsil swelled up as well and had a lot of pus on it (sorry for gross details). I have actually been wondering if this latest incident was a reactivation of my orginal EBV.

take care, ness
 

TinyT

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Yes I get swollen lymph nodes, mostly just my neck/under my jaw. They go up and down but are usually swollen to some degree. Many a Dr has commented on my lymphadenopathy but nothing has come if it.

My triggering event was also EBV. Increased swelling in my glands is also part of a flare up/PEM for me
 
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Didn't have them before. But they started a few months after I got sick with a very nasty mystery virus and haven't stopped. My tonsils swell up to and my throat is always red.
 

taniaaust1

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Swollen lymph nodes are linked to chronic fatigue syndrome, and are in fact one of the typical characteristic symptoms of CFS.

My question is:
(a) Do you have swollen lymph nodes as part of your CFS symptoms?
(b) Were these swollen lymph nodes present before the triggering event/infectious agent (such as a virus) that you believe precipitated your CFS, or did they only appear after your experienced your triggering event/infectious agent?
Yes I get swollen lymph nodes .. for me its in my neck and when that happens I get a sore throat (sometimes inflammed looking) too. It was a constant symptom for most of my early CFS/ME years. Nowdays it just can come back if Im crashing a lot, so dont happen much at all as I avoid doing things which would make me crash.

I noticed that a lot who have this symptom mention they had mono too. I too had bad mono (EBV) in my past and wonder if its reactiving when I get this symptom.

Studies have shown that painful or swelling lymph nodes happen in 50-80% of those with CFS/ME
 
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Well - you should all know, people, that, if any of you had/have ACTUAL SWOLLEN lymph nodes (i.e. palpable), or inflamed throat/tonsils, or other clinical SIGNS, according to Reeves 2003 (used in the PACE trial to select patients) "alternative diagnoses' should be sought, meaning you are excluded from a 'CFS' diagnosis!

Seriously.

Tania, I'd be interested in citations for the studies you mention?