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

[justy]

Lol Angela, lets see if i can get my GP to look for an alternative diagnosis or even be interested in feeling my chronically swollen lymph nodes! He has told me more than once that M.E patients dont have any immune problems at all and when i askk him to examine my neck he says that they are "not bothered about that sort of glands" ???

So it seems i am excluded from having it AND excluded from not having it!

 

[Angela Kennedy]

Lol Angela, lets see if i can get my GP to look for an alternative diagnosis or even be interested in feeling my chronically swollen lymph nodes! He has told me more than once that M.E patients dont have any immune problems at all and when i askk him to examine my neck he says that they are "not bothered about that sort of glands" ???

So it seems i am excluded from having it AND excluded from not having it!

BINGO!!!!!!

 

[TinyT]

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.

Wow, really?!?! Tell that to the 3 Docs that have re-diagnosed me with 'CFS' in the past year (including an immunologist).

I've had almost every 'regular' blood test available in Australia looking for other diseases, infection etc.

 

[Tulip]

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?

LOL

That man needs to:

(a) learn how to use the internet and research a disease properly
(b) get it through his thick head that it's a "disease" not "chronic fatigue"
(c) come down with the most hideous case of ME in history

 

[Enid]

Yes Tulip - seems your suggestion (c) is the only way for the thickheads here. Love the use of the term "thickheads" - distinctly recall in A&E having had a Psycho "set" on me wondering seriously if he could do the Times Cosswords - not a hope.

 

[Angela Kennedy]

What this all points to is there is this terrible discrepancy between how patients are selected as having 'CFS' for research purposes, and how they are treated as clinical patients.

Also- I should say - it's Reeves et al (not Reeves on his own- sorry for not making that clearer). In fact- both Leonard Jason and Nancy Klimas are co-authors to Reeves et al 2003.

It's a mess. It means that CLINICAL patients with clear SIGNS of dysfunction, get only offered CBT/GET in the chronic fatigue clinics, while having research results (like PACE or even the Erlwein negative XMRV paper) extrapolated to them inappropriately. Looking at the reader responses to Erlwein et al, there is evidence of this happening.

 

[copi2k]

I had them too swollen 2-3 weeks prior getting sick

 

[jenny39]

I have had swollen lymph nodes for the last 12 years started under the arms, elbows wrist and ears then all in neck were painful. After many years of tests I eventually had an ear swab after a flare up of ear infections and this showed pseudomonas aeruginosa an antibiotic resistant strain so all previous antibiotics that are usually prescribed by a gp it was resistant to. I took a 10 day course and my reflexes were then normal after having hyper reflexes and swelling in lymph nodes went down. I had to get 2 more lots of antibiotics that I struggled to get on prescription and had a huge improvement.

 

[lansbergen]

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) I had many and with improvement they became less and less. Now during flares only a few swell.

(b) Started with what seemed the worst flu ever. No problems before that.

 

[Little Bluestem]

My neck lymph nodes became swollen shortly after I got ME/SEID. The armpit and groin nodes sometime itch and sting, but do not swell.

 

[Seven7]

(a) Do you have swollen lymph nodes as part of your CFS symptoms? Didn't start till year 6 or 7. Still happens not as often.
(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?
much after.

 

[Mij]

a) sore throat but no swollen lymph nodes the first 15yrs. now I have swollen lymph nodes off and on. this past year has been the worst, pretty much consistently.

b)no, they were not and I had had a sudden viral onset. appeared after 15yrs of illness.

 

[jimmy86]

this is interesting
a) sore throat, but no swollen lymph nodes. but after the onset (mono) I did have swollen lymph nodes for a while

b) I have one swollen lymph node in the neck that has always been there for the last 10 years. actually this one appeared about a year or two before CFS hit me. I am not sure what to do with it, whether I should let my doctor check it...

 

[ScottTriGuy]

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) no
b) n/a

 

[Marco]

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) No
(b) N/a

 

[Hip]

I have just added a poll to this thread, so that people with the swollen lymph node symptom can answer more easily.

 

[MeSci]

There is also this poll which asks whether people have swollen or tender lymph nodes at all.

I am not 100% sure whether my swollen lymph nodes/glands (which are those in my neck only) were present before ME/CFS, but I am currently transcribing my quite-detailed health diary from the early days and there is no mention of swelling. There is, however, a reference to pain/tightness in the area which could be the right axillary (armpit) lymph node, around the time that I consider the start of ME/CFS-proper, probably after the start as it is accompanied by many other symptoms.

 

[MeSci]

BTW I had an ultrasound scan of my neck a few years ago, many years after developing ME/CFS and swollen lymph nodes, due to the appearance of an apparent goitre. I was told that my thyroid was fine, but my submandibular glands were swollen.

 

[*GG*]

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

Udate, the specialist I see for my CFS and Fibro has been writing Adenopathy on paperwork he sends home with me for years now!

GG

Edit: 5 years later I figure this out, my brain is fine

 

[roller]

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.

and on the leg joints (hips).

what about that pus in the navel?
seems, on the net everyone finds that normal, nothing to worry about...
its said to be lymph.

if it just wouldnt look so much like the stuff, coming out of my skin... same white, same size... in the navel, some may stick together and form small platelets ... i suppose...

anyone any idea about this?