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If you've had lymph involvement, please answer!

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Fibromyalgia
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Posted 4/12/2012 3:31 AM (GMT 0)
I was looking at excerpts from a book called Fibromyalgia: The Essential Clinician's Guide, and it has a list of symptoms and the percentage of fibro sufferers who experience them.

My fibro experience began with swollen lymph nodes, which this list says is found in 20% of fibromites.  Anyone else have this?  I can't seem to find anyone here who has had that symptom, and would really appreciate hearing from anyone who has/had that as part of their fibro experience.

Posted 4/12/2012 5:36 AM (GMT 0)
I do! But I haven't been diagnosed with Fibro, so I can't promise it's a symptom. lol But I have two swollen nodes at the moment, both in my neck, that have been that way for over 2 weeks now.
Posted 4/12/2012 5:58 AM (GMT 0)
I do, and I am a fibromite
Posted 4/12/2012 7:54 PM (GMT 0)
I have had swollen glands in my neck for 3 days now. My family Dr. doesn't know the cause. I have no fever or any other symptoms. No I'm thinking it might be the Fibro?
Posted 4/13/2012 2:05 AM (GMT 0)
Yes my symptoms started with a fever swollen lymph nodes and nausea I thought for sure it was the flu or strep. They tested for everything in the ER but found nothing. I was back in the ER 3 days later with pain in my neck and shoulders. They tested for meningites and RA. Still nothing. This pain continued for another 4 months. The swollen lymph nodes would come and go. I started seeing a family doctor and he diagnosed me with Fibro.
Posted 4/13/2012 3:37 AM (GMT 0)
My lymph nodes seem perpetually swollen. It’s been over 15 years since they were “normal.”
(Diagnosed with CFS 17 years ago, Fibro 12 years ago.)

I find that when I’m in healthy periods they go down… But the second Fibro or CFS begins to even slightly flare, BOOM, swollen. They ARE good for monitoring exactly where I’m at in a flair, I haven’t been to achy the last few days, but I’ve been excessively tired. But the lymph nodes are down, so I know that after another day to sleep it off I should be able to start climbing back on up to “normal.”

I also find that when I get a virus, or an infection, my spleen swells up. I had a mild does of the flu last year. It was that mild I only took 2 days off work… but I got to go back to work and explain that I couldn’t do any lifting because my spleen was swollen. “I’m fine, really, but my spleen is swollen so I can’t life anything,” is a sure fire way to freak your boss out.

Honestly, I don’t really mind the lymph swelling as a symptom. It’s the one physically observable symptom I get. When I inevitably land a doctor that doesn’t believe I’m sick, it’s something to point to and ask them to explain how they think I’m faking THAT.
As uncomfortable as a swollen spleen is, it gave me a fabulous “I told you so,” moment at work.

One of the older women at work, who works directly under me, making me her boss and this story even more ridiculous, took issue at the fact that I took two days off work last year. (A week after she’d had 2 weeks off sick I might add.)
She actually went to my boss and had a sook about how it wasn’t fair that I stayed home, because she was tired and wanted to go home early, but instead she had to cover for me.
I came in the next day with a Drs letter saying I had a swollen spleen, and the only way I was cleared to work was if I stayed on light very light duties, and was forbidden to reach for items stored above my reach, climb to reach said items, or lift anything over 3 kilos. (Seriously, it’s like this Dr watched me at work one day and specifically banned me from doing the stupid things I’m known for doing.)
The look on the other woman’s face (and my bosses face as he related the story latter) was priceless.
Posted 4/14/2012 3:20 AM (GMT 0)
Thanks for the responses--now I don't feel so alone! 

Another exerpt from the book I mentioned in my initial post on this thread said that some fibromites initially "present" with swollen lymph nodes, but eventually the nodes return to normal, although they continue to feel swollen to the sufferer.

I don't know if that's what's going on with me or not...I not only feel the swelling sitting here, but I can palpate the worst area (my left axial/armpit area), and it feels swollen that way, too.

I saw my rheumy yesterday, and she gave a half-hearted feel, and said that my axial nodes didn't feel swollen to her.  I finally asked her directly if she now thought I was dealing with fibromyalgia, and she said "It could be."  I don't think that diagnosis would have ever come up if I hadn't mentioned it.  rolleyes

She told me that I'm dealing with something systemic (which I knew--the pain can happen anywhere!), and it's something that doesn't show up on the monthly blood tests she's ordered (CBC and CMP).  At my last visit, she told me that if my swelling was still going on by this appointment, she would send me for a CT scan, but yesterday, she said she didn't see the point in exposing me to more radiation when whatever it was didn't seem to be getting worse.

She also offered me a prescription to Gabapentin, just as she did at my last visit, but I declined once again.  (I want to try some natural therapies first, but I was waiting for this appointment in the hopes of getting an "official" diagnosis, but that didn't really happen.)  I'm very frustrated, and I feel like she thinks I'm some kind of nut case, or that I'm making this up for attention or something.

My husband and I don't have the greatest medical insurance, and we have a huge deductible, which I've almost met.  Why would I spend my own money on pursuing a diagnosis for non-existant symptoms?  AARRGGHH!!!  I'm so frustrated, and I don't feel validated at all.  shakehead

Well, I just needed to vent...thanks again for sharing your stories!  (madisun, I don't want any measurable symptom like your swollen spleen, but it must've been so nice to have proof of your illness!)

 

Posted 4/14/2012 6:20 PM (GMT 0)
Hi. I woke up with a swollen lymph node behind left ear. Only one. Anyone have any like this?
Posted 5/15/2012 3:08 PM (GMT 0)
Oh yes, from time to time it can be kind of bad with no other symptoms (other than the usual FMS stuff)
My tonsils have been removed, which could be why. I am of the age that they pretty much snipped the tonsils out whenever a kid had a cough. I heard somewhere that they probably have a big pile of tonsils out in Roswell NM or something. lol
Posted 5/16/2012 2:58 PM (GMT 0)
Applevenus, I lived in that era, too--my tonsils were taken out simply because my brother was having problems with his and "we may as well get hers out at the same time"--can you imagine that happening today?!

So, maybe you're right, and that a lack to tonsils plays a part.  Thanks for sharing your story, and I got a chuckle thinking of a pile of tonsils at Roswell!!  tongue

Posted 5/16/2012 5:12 PM (GMT 0)
my glands go up and down all the time.when i,m in a flare ,they are huge when i,m not you can se them but just looks like a fat neck ! lol
have a good day all
kathy
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