Okay, I know that is a silly question because it is just part of Sjogren's, right? But lately, my underams are so sore and tender that it is just ridiculous. I dread putting on anything but a sports bra, it feels as if the tenderness runs almost into the sides of my breasts, I even avoid trying to let my arms hang straight down.
The lymph nodes in my neck are just a bit puffy, but not too bad and they are not tender to the touch. The ones in my groin, same thing. A little swollen, but not too tender. I feel terribly fatigued and run down, but then, I have fibro, Sjogren's and type 2 diabetes, all of which cause fatigue, so that doesn't seem to be a new presentation. I am not running so much as a low grade temp and I am not having night sweats, so I really thing it may be the Sjogren's just progressing or flaring.
I have been on Plaquenil but had to go off it because I has terrible reflux and it was really playing it up. I don't have an appointment with my rheumy until April 3rd, but I am really hurting and feeling lousy right now. Any thoughts or suggestions? Oh one more thing, I have not had any unexplained weight loss either. Just the really swollen, achy lymph nodes, particularly under my arms.
Hi
I'm sorry you are so sore. Can I just ask. are you having any hormonal fluctuations just now, ie stopping or starting the pill or hrt? I get sore round my breast area/underarms when my hormones are out of balance.
Kathyx
No, but that would make total sense if that were possible. I have felt this way before when the Sjogren's was flaring and I suppose that is what it is again. I just feel so crummy, flu-ish, almost, but no signs of flu. Just really run down and the soreness under my arms is really getting on my nerves. I wish this would just go away.
Ladies, please make sure you have your annual mammogram and if you have any suspicious lumps see your doctor immediately. I had a suspicious lump, had extra mammos, ultrasounds etc and the lump just stayed there. Well, finally after a couple or three years i said I want it out. It was cancer. Do not trust your doctor's guess on these things. They cannot tell by feeling the lump and they cannot "see" just what is under the skin. I know some think they can, but I know they can't. I was so busy being sick with Sjogrens, the lump took second place. It could have killed me. Lucy
Hi Lurker, yes I too have a lot of issues with lymph nodes mainly in the upper body area (around the breast and my neck areas mainly), it's painful and frustrating. Hang in there my friend.
Wow Lucy, good for you for pushing the issue with the doctors!!!
Take care ladies -
Patze
I do have a concern about the left breast. I had my annual mammogram and was called back in for a more intense, compression mammogram. I was told it was checked by the radiologist and all was okay. That it was just dense tissue and with the second mammogram, it just seemed to be flowing on in with the breast tissue. I think that after your post, I may push and see about getting an ultrasound. Thank you for reminding me that I have to advocate for myself.
lurker love the name :)
yup get it checked out, thought in my researching fibro as i have it, the tender points noted on body , one point is under arms , i know under mines is tender, and i get cyclical breast pain, but just week running up to menstruating, get it checked out, but try not to worry too much, could be an exacerbation of fibro tenderness
T x
Thank you. It is a lot less touchy today and I can actually lower my arms. Hubby told me I was beginning to remind him of Frankenstein, walking around with my arms slightly out. ::)
Oh well, one good thing came out of it. I got so tired of not feeling up to messing with my too long hair that I went and had it chopped off into a cute, sassy looking little cut. I really like it, at least until I have slept on it. First thing in the morning I wake up, look into the mirror and I scare myself! It kinda reminds me of what a chicken on crack would look like! Whee! ;D :
Oh Lurker, you're so funny!!! Chicken on crack! ;D ;D
Patze
Occasionally mine do get sore, typically in my chest, but thankfully that's not that common of an occurrence for me anymore. When I first started showing symptoms, at least a few times a week, it felt like someone was throwing lightning bolts through my nodes (cervical, hilar, paraaortic, iliac, and spleen of all things)
Wow Nathan, that is certainly strange! I'm also glad that it's just a bit of annoyance instead of everyday pain in the behind.
Patze
Patze, I was gonna say I looked like a (chicken in heat) but I was afraid that might be too risque, so I self-censored. Well...I did that post, but now I've gone and said it anyway! Derrrr!
I believe I know what you mean Nathan. Sometimes I just feel as if my internal organs are drying up and conking out on me. A bit scary, isn't it? Especially when I get twinges in the area of my liver, and since I am diabetic, that does happen now and then. I am always relieved when I see my rheumy because he always does a liver and kidney function test...something my GP never does.
I suppose that since I started this thread regarding my big old lymph nodes and everyone was kind enough to respond (and many suggested I have this checked out) I really should give you all an update. I saw my rheumatologist this past Friday. The visit went pretty much as usual. After he gave me a quickie tender point exam, I asked him if this lymph node on my neck looked a bit enlarged to him.
He took a look and said "yes, it most certainly does. Do you have anymore lymph nodes that are swollen right now? So I told him that the ones under my arms would get so puffy and tender that I actually got my hair chopped off just because holding my arms up long enough to style my hair was uncomfortable. I also told him the ones in my groin were really puffy that very day. He examined them and agreed that they were. But here is the thing I did not feel a lot of satisfaction with. He told me to get back on the Plaquenil, and if, after two months on the Plaquenil, these nodes have not reduced in size, then we may "want to investigate further." That did not sit well with me, because I am a chronic worry wart, but I guess I have no choice now.
The other worry I have is that his office has started a new policy and he seemed really ticked off about it, but told me that the DEA was really forcing the doctor's hands on this one. I had to read a bunch of literature about my prescription pain meds and muscle relaxers and sign an agreement that I understood that I was to take them only as prescribed and that I was not to sell or share them with others. Then I was asked to pee in a cup and I got so nervous that my bladder seized up and I barely got enough to fill the bottom of the cup! The nurse told me it may not be enough, but if they need more she would call and let me know.
On the way home from the rheumy's office, it dawned on me that I had been doubling up on my soma for just two days before my appt. with him. That sounds horrible, I know. But it was due to the fact that I was having such spasms in my lower back and neck that they were waking me from a sound sleep. Now I worry that my levels for the Soma are going to be unusually high and my worst nightmare would be if he dismissed me as his patient. I mean, I did sit there and practically lie (not intentionally, I truly forgot I had done this as it is out of the norm for me) when I signed the sheet saying that I took my meds only as prescribed.
So...does anyone know anything about these urine drug tests? If the med is prescribed for you by the doctor doing the checking, do they check for levels of the meds they prescribe you? I have only read of a problem when there are either meds (scheduled drugs) which are not what they prescribe themselves, or if the urine tests come back with zero levels, where they suspect a patient may be hoarding the meds and selling them. This was just Friday and I am worried that I may have really messed up here. Anyone have any input?
I'm sorry this post is so long, as I really just meant to update on the lymph node dealie. But I think right now I am more concerned about being thought of as a "pill popper" and dismissed as a patient. Have I really done such a terrible thing here? Has anyone else taken their meds a bit more than what was prescribed when in a flare, or am I just a wimp and a liar too?
Lurker, the information about signing the "pill papers" is new to me. I don't know what to say if this is the road of the future or what. As for the urine test, I doubt that was for the drugs. I always have to have blood drawn and urine sample at my rheumys. Could have been checking for regular stuff and not drug content. I wouldn't worry. Lucy
Hi Lurker,
You have to sign a paper? Wow! Got to be to cover this guy's back end, and Lucy's got a good point, could be the wave of the future, how sad for the patients.
I used to always get urine tested at the rheumys, but haven't had to for the last several appointments.
And I'm still laughing at the chicken on crack comment, too funny! ;D
Patze
I don't know Patze. The rheumy specifically said that the paperwork as well as the urine testing were all being done because the DEA is now enforcing it in any practice where scheduled meds were being prescribed. He acted very ticked about having to do it. I know he moved his practice once, due to some medical politics going on within the place where he was before.
I am not one who will take more meds than prescribed as a general rule. But when you are in a flare with both the fibro and the Sjogren's and you are only allowed two per day, you have a sick MIL and you get the news that your 31 year old cousin is having surgery for Multiple Myeloma, everything hurts worse and you just want the hurting to stop so you can at least rest when you get the chance to, ya know? Still, I am worried sick that he will drop me and that would pretty much devastate me right now. I wish I knew how these tests work, whether they just check to see if the prescribed meds are in your system, if there are "illicit street drugs" in the mix, or if there are levels of what has been prescribed that can be over a certain limit.
I have heard that some patients do not learn they have been dismissed until their next appointment. And my next appointment is not until September. That is an awfully long time to wait, wonder and worry. I have my first grandchild due in July. I do not need this clouding my happiness right now. I would even be willing to either drop the Soma or substitute it for something else, rather than have him drop me as a patient. Especially right now, with starting the Plaquenil again and after what he said about keeping an eye on these enlarged lymph nodes. I am afraid I am just going to be left out in the cold altogether now.
I'm not sure of the legalities where you live, but it seems to me that if your are being tested, you have a legal right to know what for, who has access to the results, and what, if any, actions can or will be taken based on the results. Can you ask the doctor or the office those questions?
The way he explained it to me, it was just a new thing the DEA is having doctors do (he even said it gave him a huge pain in the backside to have to deal with it) and so we would be doing it that day. I have to admit that I was so caught off guard, because of never having been drug tested for anything, that it made me feel a bit paranoid and I still feel a bit paranoid.
Even though I know, in my heart, the worst thing I could get in trouble for would be doubling my Soma for a couple of days before this appointment, and I expect that if anything were to come of it, he would either refuse to prescribe anything for me, or he'd drop me as a patient, I just feel uneasy about it all. I do not think I have done myself any favors by trying to find anything on the subject online either. Because although I have not found anything specific to help me, I have read of false negatives and false positives. Now that really makes me worry.
I wish I knew an RN who worked in a doctor's office that I could ask how the tests are read out. Also, how long it takes to get the results back, etc. I feel as if Big Brother has really gone too far this time.
Yes I get a lump too ---- in my thigh.... it's been sitting there for years. Rheumy says it's okay as long as it's "mobile" (able to move it around a little).
Just recently I found something that really reduces the swelling... It's as simple as a cup of tea. Green tea that is! I drink about 5 - 10 cups per day and it's working miracles ;D !
Hmmm, green tea, eh? I could definitely handle that! Thanks for the suggestion!
Hi all,
Just a quick update on my last rheumy appointment. If you all recall, I was feeling a wee bit uneasy that I was "drug-screened" for pete's sake, after having been a patient of this doctor's for about seventeen years now. I understand that when the DEA says a doctor has to do something, they have no choice. So I took the test and no probs there. I got my little paper in the mail about two weeks later and he had just written across the page, "drug screen o.k."
Now I have been back on the Plaquenil for exactly one week. I seem to be tolerating it much better this time around. I think it was the GERD causing me so much N&V with it in the past. As for the lymph nodes, they seem to be less touchy and swollen, so that seems to be resolving itself for the present. I hope everyone here had a pleasant Easter and if we can just hold on, we will soon be needing to crank up the good old AC!
Hi Lurker
Thanks for the update. It's good to hear the good news about the Plaquenil. Are you starting it gradually? Pooh always advised taking it with food, especially yogurt, and I found that helped a lot.
Good news too about the lymph nodes. Must be a relief! The drug screen 'ok' must have been too. What a time you've had!
Bet you can't wait for the summer and the arrival of your first grandchild in July. We'll be thinking of you.
Take care - Chickpea
Thank you Chickpea! It surely has been a wild few months. But hopefully I will be regulated and adjusted to the Plaquenil and feeling more energy, have more moisture and less brain fog. Gosh, that sounds like a really tall order from just one med, but I remain optimistic. And then...in just a little while, we will be welcoming little Ava Grace into the world. Yay!
Lurkernomore,
Glad you got resolve on the worry of the ua test.
Very excited for you, about your 1st grandchild. Wonderful experience! congratulations.
blessings kimbo
QuoteThe way he explained it to me, it was just a new thing the DEA is having doctors do (he even said it gave him a huge pain in the backside to have to deal with it) and so we would be doing it that day. I have to admit that I was so caught off guard, because of never having been drug tested for anything, that it made me feel a bit paranoid and I still feel a bit paranoid.
Doctors are as bad as we patients.. They are whining about what the DEA or AMA makes them do, plus insurance companies. Blah, blah, I think they holler and whine more than we do.
Lurker, I wouldn't worry about this dr testing you. Also, if he is going to kick you out, he'll find a way to do so and you are probably worried for nothing. (Quit borrowing trouble. :-)..)
Also, I urge all women to not pay attention to "it's nothing" when you have a lump in your breast, or underarm area close to the breast. My lump was movable and it was also cancer. My second opinion surgeon said most cancers are attached and not movable, well mine was movable. This is not worth trusting a brush off or it's "nothing." I had a breast cancer dx just six months after Sjs diagnosis. I was so busy being sick with Sjs, that I neglected the lump. My bad and my drs bad. Sjs won't kill you, but cancer can. Lucy
BTW, I do NOT get lymph node enlargement or swelling.
Hi there,
Well, it's all good on the med screen. I got a letter from my rheumy's office and for the first time in a couple of decades-I passed one of his tests, LOL! Yay for me, huh?
So you don't get swollen or enlarged lymph nodes? Wow! That is what made my rheumy decide to test me for Sjogren's, as I was seeing him for Fibro only at the time. And that was a test I could not study for-like a pop quiz...and so I flunked it! ;D
Thank you Kimbo. How very sweet you are. Yep, it's been a time, but it's much better now. Now we can just relax and count the time until that bebee gets here! We had two sons, never had any girls, so I am going pink crazy and to beat it all, Carter's is having a big sale!
Lurkernomore, I have a good friend that has hereditary pancreatitis. On too many meds to count. When she went to a new pain management center in Cincinnati, OH they not only drug tested her but sent her to a shrink as part of their program. She now gets drug tested during every appt but only had to go the the shrink the one time.
Grandchildren are great! Everyone says that but until it is experienced you don't know how different it is going to be. Love being able to buy little people clothes again. Let us know when she gets here. Pics are great too.
Roxanne
Thank you KYMOM. I am wondering if, by your screen name, you are from Kentucky?
Yes, I knew that pain management clinics did the contract, drug screen test. I was just caught unaware because in the 17 years I have been seeing my rheumy, I'd never had to do that before. But it was all good, so that is a good thing.
I would LOVE to post pics, if only I knew how. Also, my dear DIL is being so mysterious about the due date that it makes it sketchy for me to know exactly when to expect little Ava. All I know is that I am as excited as can be about the whole thing! After having two sons, I cannot wait for this little girly to come along and give me a reason to go all pink! (Now watch, with my luck she will be a big tomboy and not want to do any girly stuff.) Ha, but I'm going to love her to bits, however she turns out.