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Bench
01-31-2011, 02:40 PM
I just need to vent...
I look in the mirror and I don't even recognize my legs- they are swollen and they hurt soo bad.. my knees feel like someone's pulling on the tendon and I don't fit my jeans. I've been working out as usual every single day and I am just so angry because no matter how skinny I get my legs and arms swell. We have a no salt house because my family is very heart healthy and I don't use diuretics because they don't work!!! the only thing I found mild relief in was ibuprofen, but it doesn't last long. I just graduated from nursing school and I feel like I can't even do my job because I'm constantly in pain from my swelling legs and even TED stockings can only do so much. So now I have 15 grand to pay back in student loans and I feel so hopeless...
Still waiting for this doctor to refer me to a Rheumy. I just could cry - how pathetic and now all I've done here is had myself a little self-pitty party
Ughhhh

tgal
01-31-2011, 04:15 PM
He Bench. You are welcome to vent at any time. That is what we are here for. The majority of us have come here to have pity parties at one time or another. I know sometimes it just seems like nothing is working out the way we planned it to work out. Our bodies turn against us and we can't do anything about it! I can't make it better for you but I can tell you that I understand and I am here for you whenever you need to vent.

A special {{{hug}}} to you

Hunniebun
01-31-2011, 11:38 PM
I am sorry to hear about your legs. Does you doctor know about this? Is there any other type of anti inflammatory you could take that would help?
Vent away, it's what we are here for.

Angel Oliver
02-01-2011, 12:23 AM
I so hope you get that referal soon,maybe let the doctor know again how desperate things are getting for you.I know he should be able to help you with pain,more than ibrufofen,so call him,dont suffer and yes inflammatories too,even before seeing the rheumi.

I know its such a worry when you have things to pay and hurt so much r are too fatigued to get out of bed.We all have been there.Today is a bad worry pain day.The good days do come,even if they are short lived.Just hang in there n keep venting,helps so much.Better out than in.
Sending you getle hugs
Amanda.xxxx

Bench
02-01-2011, 01:30 AM
Thank you so much guys. I managed to get an appt @ 11 am tomorrow which is unheard of for my Doctor!!! I feel so selfish for putting this post up when there are so many of you wonderful people struggling daily so tonight I'm praying for all of you.
Tomorrow I am pleading with my Doctor to send me to another city/province to see a Rheumy if need be and I'm asking for anti-inflammatories just like you guys suggested because then at least I can work... I'll check in with you after my appointment.
I can't thank you all enough- this site is just such a blessing right now.
xoxox hugs right back at all of you!

Angel Oliver
02-01-2011, 01:52 AM
You are NOT selfish thats why we all joined here,we all suffer daily and you are too.Wohoo im so glad you got the appointment so fast.Make a list of what you need from him before you go so you dont forget.He will help you.Let us know how you get on.Goodluck.
Love
Amanda.xxxx

tgal
02-01-2011, 05:44 AM
Ditto to what Amanda said (Angel oliver). Venting is not selfish. That is what we are here for and we all do it. Keep us posted!

Bench
02-01-2011, 04:08 PM
Thanks again guys!!
Sooo my doctor re-ordered blood work and says something has to show up in order to send me to a rheumy and to manage my swelling I am now on Lasix (even though I told him I didn't like diuretics) and Voltaren... a year ago he ran an ANA, but it came back negative so this may sound strange but I am praying SOMETHING shows up so I don't feel like such a hypochondriach. I just keep reminding myself that my walk-in doctor who is hailed the best female doctor where I'm from said she's positive it's Lupus and my aunts who both have it say I am them 20 years ago.
Patience is a virtue !
PS..what are your thoughts on Voltaren- I'm not a huge NSAID fan

mountaindreamer
02-01-2011, 04:30 PM
hi bench,

wow, your story is so familiar. I went 10 years with positive ANA, but not enough physical involvement for a diagnosis, so i know how frustrated that you are. I can't help with NSAIDS, because i am allergic to them. Also, I try my best to avoid steroids, cause the swelling/bloating is so very painful. Therefore, i count on Plaquenil and Methrotexate to keep the attacks, thus the swelling under control.

I am so sorry that you are not at a point where you can unequivicably make a treatment choice. I know you are desperately searching for the answers and solutions, but i can tell you that lupus is a progressive disease (i am sure you know because of your nursing training), and management of the disease requires that we know our bodies, and that we be prepared to react to the latest attack.

Try the NSAIDS, hopefully they will help until you can get the lab results. Keep a daily journal of your symptoms,....also, read some of the posts here at whl, you may find many symptoms that you did not realize pertained to lupus. For example, when my dr. asked me about mouth sores, i responded with the negative, because i envisioned big red sores in my mouth....i did not realize that my swollen tongue and sensitive lips qualified as sores....this is one of the things that i learned from the incredible members of this forum....so, please explore around, and build your case....

you know your body, and you know something is wrong....now you just have to find the dr. who is a perfect team member.


See, venting is ok on this forum. ha ha ha

Bench
02-02-2011, 01:08 AM
hey mountaindreamer
thank-you for your encouraging words, I'm really sorry to hear you had a nasty battle waiting for a diagnosis as well. 10 years is incredible and makes me really appreciate your understanding even more.. How do you find the medications are working for your swelling?? What would you say was/is your worst symptom???

Funny you should mention the mouth sores because that's how I pictured them too and of course if you ever google images of the lupus rash or mouth sores it comes up with the worst case ever documented haha so I don't do that anymore.. I do get mouth sores, but sometimes I think theyre just canker sores- though I get them without eating candy?? Hmm I'm not sure
Good idea about the journal.. I cant remember dates, but the symptoms are all they really need right?? I guess I could mark down when it gets really bad and how long it lasts. I honestly don't know what I will do if the tests come back normal.. I will feel very defeated that's for sure!
Hahaha yes venting is okay, I am learning this. Thanks again

Angel Oliver
02-02-2011, 11:59 AM
Bench like i said,according to my blood works i should be running a marathon lol or be wonder woman lol. I know how it makes you feel like its all your head but its not.Its very real.I was diagnosed then i wasnt.Now my doctor says again i have lupus but you can guarentee when i see the rheumi he'll say its not bla bla bla.I know my body and so do you....not mine yours lol.So just know ive been there many times.Just dont let your spirit faulter,stay strong because one day they will see something.It does make me mad sometimes,as now my lungs are being effected and i wonder some days what is it going to take for them to realise it is real whats happening to me.But my doctor is now seeing with his own eyes something is very wrong.He told me its all pointing to lupus.So hang in there Bench.We will get you through all this political crap we all go through.
Lots of love
Amanda.xxxxx

tgal
02-02-2011, 12:53 PM
Thanks again guys!!
Sooo my doctor re-ordered blood work and says something has to show up in order to send me to a rheumy and to manage my swelling I am now on Lasix (even though I told him I didn't like diuretics) and Voltaren... a year ago he ran an ANA, but it came back negative so this may sound strange but I am praying SOMETHING shows up so I don't feel like such a hypochondriach. I just keep reminding myself that my walk-in doctor who is hailed the best female doctor where I'm from said she's positive it's Lupus and my aunts who both have it say I am them 20 years ago.
Patience is a virtue !
PS..what are your thoughts on Voltaren- I'm not a huge NSAID fan

This is another one of those posts that seriously TICK me off! If a doctor is worth his salt he understands that Lupus and other autoimmune diseases can be diagnosed without blood work it is just harder. I don't know if you have Lupus or not but I do know that you are not crazy and you are not lazy. You simply want answers. The comment you made about wanting "SOMETHING" to show up has been uttered by the majority of us at one time or another. We know our bodies and we know we are sick but the doctors want the easy way out and put all their marbles on the blood work. The problem is that autoimmune diseases are seldom that easy.

Keep pushing them. If your doctor won't listen to you then find another! The best information that I have received came from this site. "You hired that doctor so you can fire them as well"! It is not doctor shopping when you are trying to get someone to LISTEN to you instead of dismiss you right out of the gate. Until then (and after) we are here for you.

tortugal
02-02-2011, 02:48 PM
Hey Bench, hope you are feeling ok and that your legs aren't bothering you too much. I have been getting the "canker sores" lately, I would never have thought anything of them but I almost never got them before, and these hurt a LOT. I assume it is related, a symptom, but I do not have a diagnosis yet.

When I was last at my doctor and my lab work had come back negative, she was ready to send me to a rehabilitation doctor for my knee problems instead of a rheumy. I had to stop her and remind her that I had developed a lot of other pain in places other than my knee, and I asked "Is there no way it's an AI thing if my labs are negative?" Of course I knew the answer, because I had been doing my research here and elsewhere (!) but I sort of wanted to lead her to it instead of sounding like the "pain in the butt patient"... haha... it worked, I got the referral. Of course who knows if the rheumy is going to play ball with me or not.

This is absolutely the MOST FRUSTRATING place I have ever been in! It sucks! As I continue to feel sicker and confuse the people around me more and more (my husband seems to have convinced himself I get the flu on a weekly basis, oh boy), I just wait for some answers. Doctors are the gatekeepers, we all should be better advocates for ourselves and quit being so polite. Easier said than done, though... I am trying to find my inner "pain in the butt patient," and I hope you can too!

Bench
02-02-2011, 11:20 PM
I know my body and so do you....not mine yours lol.

First, thank you for making me laugh hahaha
and second.. I constantly feel up-lifted every time I come on here and read your post (the same goes to tgal). I cannot believe how similar our stories can be and even if it's not Lupus (after all it is known as the great immitator so it could be something else) I cannot feel alone because it seems like you or another member has been through the same thing.
I have to point out the very beginning of your reply regarding the blood work because this is something that has bothered me from the very start: my aunts BOTH had negative EVERYTHING as far as blood work went, but it just took a couple of years as their symptoms worsened for the doctor to understand there was something really going on- much like in your case how you said your doc is now seeing with his own eyes.
Ughh I'm so sorry to hear that you have been given a Dx and then had it take right back that irritates me! I wish you all the best too and I am here for you whenever you need to vent/talk whatever you want to call it haha.
Thanks again, I feel stronger every time I read your replies

Bench
02-02-2011, 11:29 PM
This is another one of those posts that seriously TICK me off! If a doctor is worth his salt he understands that Lupus and other autoimmune diseases can be diagnosed without blood work it is just harder. I don't know if you have Lupus or not but I do know that you are not crazy and you are not lazy. You simply want answers. The comment you made about wanting "SOMETHING" to show up has been uttered by the majority of us at one time or another. We know our bodies and we know we are sick but the doctors want the easy way out and put all their marbles on the blood work. The problem is that autoimmune diseases are seldom that easy.

Keep pushing them. If your doctor won't listen to you then find another! The best information that I have received came from this site. "You hired that doctor so you can fire them as well"! It is not doctor shopping when you are trying to get someone to LISTEN to you instead of dismiss you right out of the gate. Until then (and after) we are here for you.

AMEN to everything you just said hahaha
There is one thing I love about your posts and it's that you always know what to say! I've finally come to the time where if this gets brushed off with a prescription refill then I will move over to my walk in doctor who is a female and seems to really "get" me.. she's the one who said from the very first time she met me: this looks like Lupus!
How often do you think I should push them to do blood work? I mean it was almost a year ago that the last ANA or CRP was done (well I just had CRP, FANA, RF, ESR and HgA1c), but now how long should I wait if those come up negative- which I'm praying doesn't happen.
Ah, oh well... ive got God you and Amanda now.
I just hope I can be there for you guys sometime too

Bench
02-02-2011, 11:42 PM
Hey Bench, hope you are feeling ok and that your legs aren't bothering you too much. I have been getting the "canker sores" lately, I would never have thought anything of them but I almost never got them before, and these hurt a LOT. I assume it is related, a symptom, but I do not have a diagnosis yet.

When I was last at my doctor and my lab work had come back negative, she was ready to send me to a rehabilitation doctor for my knee problems instead of a rheumy. I had to stop her and remind her that I had developed a lot of other pain in places other than my knee, and I asked "Is there no way it's an AI thing if my labs are negative?" Of course I knew the answer, because I had been doing my research here and elsewhere (!) but I sort of wanted to lead her to it instead of sounding like the "pain in the butt patient"... haha... it worked, I got the referral. Of course who knows if the rheumy is going to play ball with me or not.

This is absolutely the MOST FRUSTRATING place I have ever been in! It sucks! As I continue to feel sicker and confuse the people around me more and more (my husband seems to have convinced himself I get the flu on a weekly basis, oh boy), I just wait for some answers. Doctors are the gatekeepers, we all should be better advocates for ourselves and quit being so polite. Easier said than done, though... I am trying to find my inner "pain in the butt patient," and I hope you can too!

Hey! Wow verrrry interesting.. funny how similar our stories can be huh?
These canker sores- I didn't really think of them either until I read a post by someone on here in the Lupus symptoms thread (i believe that's where) anyway keep track of these symptoms no matter how bizzare because you never know what might trigger the doctors! haha

What really interests me about your reply is the knee part- when my legs get really bad my knees KILL. It honestly feels like nothing I could ever explain, but like you I have negative results so far for anything in the blood. What bothers you with your knees?? Do you get swelling?

I hear you on "leading" the doctor because nothing turns them off more than being told by a patient what all the signs are pointing to. I try this, but if the blood results dont show anything he won't send a referral... errrr so annoying!!!

Thanks for replying and you're more than welcome to message me anytime about your frustration because it seems like we're both in limbo right now huh? I'm so sorry for you to be feeling pain and having to live life while the unknown brings you down... I'll be here to lift you up though and you gotta keep me posted on what the outcome is.

Onnnne last question haha: how is your hubby taking you being sick frequently? I understand you said he thinks you have the flu every week, but does he seem to be understanding??

tortugal
02-03-2011, 03:28 AM
Hi again!
re: the knees... I get throbbing, aching pain and swelling. I had knee surgery in June, which was supposed to solve my problems (ha ha) but I only felt better for about a month (which is why my orthopedic surgeon started to suspect AI.) My scars are still really purple instead of white, I think because my knee is always so puffed up. My "bad" knee tends to swell more than my "good" one, but they both get to aching pretty badly, especially when it is cold or the barometric pressure drops. It hurts a lot to use ice packs (which used to be my savior during physical therapy) so I use heating pads like they're going out of style. Probably doesn't help the swelling, but it feels better!

My hubby... well that is sort of a mixed bag. I get the impression that he's trying to make this go away by not acknowledging it (the "flu" thing) which seems like a very guy thing to do. He is supportive and extremely helpful when I am not feeling well, but I don't think he's necessarily onboard with the fact that I am clearly not healthy. Once I have some answers/dx I feel like that should make everything easier for him to understand too.

Sorry you are also in this boat, but I'm glad we can have a little moan together! I hope you are feeling OK today. Have a great day and also feel free to message me! Gotta be a light at the end of this tunnel somewhere, right?

Bench
02-04-2011, 01:04 AM
hey! wow that's awful that you even had surgery!!! I'm sorry to hear it didn't do anything for you in the long run.. that's quite something to undergo just to have the pain come back shortly after. What an awful experience you've had- sending you a biiiiig hug

I have to agree with you about the guy thing haha. I'm glad your hubby is supportive when you feel sick... I have come to the conclusion as well that when I have a Dx then I will tell him, but anytime I bring it up right now he doesn't really acknowledge me (that sounds kind of mean)

I think it will be nice having someone on this journey with me to gripe to about things only someone going through this could understand! I look forward to our future messaging
Talk to you soon I hope!! xoxo

tortugal
02-04-2011, 04:30 AM
I meant to ask you before if you were taking anything for pain. I'm not right now, because my orthopedic surgeon had me on relafen but it wasn't working. At this point, I have taken so much motrin 800 and tylenol, I am worried about my guts and liver so I am trying to avoid taking anything. I swear by arnica cream, it doesn't touch my swelling but it does take some of the edge off pain-wise.

If I knew I would feel like this 8 months after surgery, I probably wouldn't have done it... physical therapy was definitely a style-cramper! I will say that my pain is not as acute as it used to be. There were days when I felt like my leg was being ripped off... I still have constant pain, but nothing like that... so it did help, in some ways. Gotta look for the bright side somewhere!

happy Friday!

Bench
02-05-2011, 02:20 AM
Yeah, I used to be on naproxen, but it made me feel strange.. partly because I don't usually take anything for pain and I guess it just didn't "agree" with me.
Then my pain and swelling got so bad again I couldn't take it anymore and took 1200mg of ibuprofen which relieved the swelling and pain moderately, but only lasted an hour or two max. so my new prescriptions right now are Lasix and Voltaren (just a stronger Motrin) and I think I'm on day four now... so far so good. I still have a bit of swelling, but SO much better and I'm only on day four of my treatment so I'll give it another week and see how it goes.
One thing I'm worried about is I got my pesky rash on my face again and I'm not sure if it's just part of whatever I have (as I have gotten it before), because I'm getting sick, or a reaction to the Lasix as it is sulpha based and it's not uncommon to have a reaction to it... so yeah I am just keeping an eye on that one!

That being said, I am NOT a fan of NSAIDs and I detest diuretics, but my doctor gave me the prescription because I asked for his help so how could I refuse it. This will hopefully not have to be something I take long-term, but if this is the only way I can work then I don't know what I'm going to do.

I'm glad you found some relief.. however little it may be haha. Yeah thats the thing with surgery- its not always guarenteed I supposed (excuse the spelling its 1:30am here).
How are you feeling today?
Yes HAPPY FRIDAY!!!!