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Hi. My name is Jen, I'm 33, married, 12 year old twin boys.

I'm still awaiting diagnosis. My gp is leaning toward a lupus diagnosis, based on bloodwork, symptoms, and several unexplained symptoms I've had in the past. I also have a family history of lupus. I don't get to see the rheumy till June 8th. I've been off work since April, most days I can barely walk. I went through about 2 weeks of not even being able to bend or sraighten my legs, they were so stiff. That has improved, but I still have horrible pain in my feet, and they are excrutiating when I try to walk on them. I tried to go back to work the beginning of the week. Dont know what I was thinking. Still have a lot of stiffness in my knees, and one of my ankles is swollen and red. Some of the joints in my feet are swelling as well, to the point where I had to go get a pair of shoes a size bigger and wider than what I had. Cant get up from a sitting position without using most of the strength in my arms to do so. The symptoms dont really seem to be affecting my arms or upper body at all, just my hips on down to my toes.

It feels good to find a group who understands what I am feeling. I look foward to chatting with you all.

Jen
 

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Hi Jen,

Welcome to the forum. I am across the bridge in New Jersey. I do hope your appointment goes well and you get some answers. It took some time for me to get a correct diagnosis as Lupus does not always like to come out from hiding.

Let us know how you make out and good luck. Come join us in the chat room sometime.:wink2::wink2::wink2:
 

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Hi Jen and :welcome:

I hope your appointment goes well and you get some answers to what's going on. The people here are fantastic and very caring.

Take care Mrs M x
 

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Thank you all for the well wishes. I'm kind of looking foward to the rheumy visit, so maybe I can find out what is going on. Then on the other hand, I'm a little nervous about it, I've read about some rheumies who aren't the nicest to deal with. I've been making lists of my symptoms and when they happen, even taking pictures of what I can. I'll keep you all posted. Thanks again for all the well wishes.:)

Jen
 

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Hi Jen,

:welcome: to the lupus site.

It is great that you have a GP that knows something about lupus.:) Sounds like he has run all the tests and has referred you to a rhuemy.

Sorry to read that you are in so much pain.:( Have you asked your GP if he could give you something to help you out till you go to the rhumey? Or get your appointment moved up sooner?

My rhuemy is very nice not all of them are mean. If you GP referred you he must know him.

Take care and let us know how we can help you.:)

Love,
Lyn
 

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Hello again Hopalong,

Are you going to one of the bigger university hospitals in Philadelphia to be seen by a Rheumatologist? If so they are typically very good and reputable too.

What area of PA do you live in? I hope your near center city Philadelphia as there are so many specialists there and would be able to sort things out quicker for you.

Good luck.:wink2::wink2::wink2:
 

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Hi Jen

Welcome. I am sorry that you have so much pain, I do hope you get some answers at your Rheumatology appointment. I am sure you GP would be able to help you with your pain too.

New here myself, and can concur very friendly, understanding caring people.

Take care
 

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Discussion Starter #9
Hello again everyone.

My gp has given me things for pain to help me till I get to the rheumy. I just hate taking pills. Guess maybe I'd better get used to it. Unfortunately that is the first available appointment to get into the rheumy. My gp said I was actually lucky... alot of times she said the wait is even longer. I did try like you said, Keebler, to get it moved up, and they told me that was the earliest I could get. At first I was afraid my symptoms would disappear by the time my appointment got here, but they dont seem to be going anywhere yet.

I live here in south central PA, and the gp reffered me to a local rheumy. I figure I will give it a try and see how it goes. Might be a wonderful rheumy real close to home. I didnt realize that there were a lot of specialists in Philadelphia, my research hasnt taken me that far yet. But I will be sure to keep it in mind just in case. Thanks for the info, KarolH.

My gp is wonderful, she does whatever she can to help me, but she admits that this is beyond her expertise. But she has also told me anytime I need to be seen quickly and cant get in with the rheumy to give her a call.:)

This is very frustrating to me. Up until now, I was very independent. Now I feel that I have to depend on everyone. My job is a physical one, and I thought I felt well enough to try to go back, made it one day, and now I feel worse than I did before. I don't think my husband fully understands whats going on. I think he is getting very frustrated as well, because now everything falls on him. Makes me feel terrible, as there isn't anything much that I can do about it. :( My kids seem to be the most understanding of all, stopping their outside playtime to come by the window I'm lounging beside, and offer any assistance I might need.

Thank you all for you well wishes. I've met some wonderful people on here already and I've only been on a few days.

Hugs,
Jen
 

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Hi Jen - I was just recently diagnosed as well after two years of my rheumy thinking I had undiagnosed RA - nothing was showing up in my bloodwork - everything was normal - until I had a flare up in February and he took blood again where a few test came back postitive for Lupus. He said it was a mild case and right now Im on predisonne - actually weining myself off of it.

He wants me to take either methatraxate or Imuran - both of which have not so good side effects - I am so afraid to start taking either of them. I am hoping that I can get off the predisone, oh and Im also on Plaquinel, and can handle a little discomfort w/o taking the heavy duty drugs. I was fine for a year - just on the plaquinel. Then just like that aches and pains all over.

I live in NJ, not too far from you - hopefully things will go well for you when you see your rheumy. Keep us posted.

Linda
 

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Hi Linda,

I too am afraid of the side effects. I was always so healthy, besides the fact that I have asthma. I've never been one to take a lot of pills for anything... I have a tendency to be stubborn and try to stick it out. Somedays it seems no matter what I do or what I take, the pain just doesnt go away. I've taken more pills in the last month than I ever have. I was on prednisone, but was weaned off it. Gave me heartburn and made it so I couldn't sleep, but other than that, I didnt have much trouble with that. But now that I'm weaned off, pain is back good and strong. Over the counter nsaids and such dont seem to be helping the last couple of days again. I have an appointment with my gp again tomorrow, so I'll mention it to her and see what she has to offer me to help. I had 2 blood test that were of concern to her. One was for the ANA and I forget the other one, but she said something about inflammation markers. I want to get copies of my blood work when I go tomorrow (something I neglected to do). Thanks for listening to my endless babbling. It's just so nice to get on here and talk with people who understand. Thank you all!!!:):):)

Jen:wavesmile:
 

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Welcome Jen

I just wanted to say welcome and glad you found us also.I am sure this group on the sight will be huge help to you as they have been to me for four years now.I know what you mean about not wanting to take meds but unfortunatly this disease you do need to take some to help you to feel better.I have had two rhumies since being diagnosed with Lupus.I have to say they both been very sensitve to everything.I did change rhumies at one point after being diagnosed because the first one was not doing anything for the pain or the fatigue.The second has been great overall but once in awhile i have to point out or get her to listen to me as she seems t be ignoring what i am saying like i am just making up but she always does appoligize for not listening to me.

I do hope your appointment is a good one with your rhumie in june.Please keep us in touch and always remember you are the patient and you are the one going through so much so make sure they are listening to you before you leave if you know what i mean.

Take care of yourself and rest when you can.i have a feeling that is hard to do some days with twin boys wow ((((hugs))).One thing that has worked for me that everyone in here told me try when i cant sleep but feel overwhelmed is to close your eyes and jsut escape kind of from the world and for me it helps most of the time.Thikning about you and hoping things get better real soon for you(((hugs))).

Tammy
 

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Hi Jen,

I always take along my husband to my rhumey appointments. That way he can help me if I forget to mention something. He remembers things that I don't.

Could you take your husband along with you? It might make it easier for him to hear it from a doctor.

Love,
Lyn
 

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Jen,
Hi and welcome to the site. That is something twin boys WOW that keeps you busy. There are a lot of areas on here that can help you with information and support. The chat room can give you instant support, answers to questions, and a way to make some really good friends along the way.

I do hope you feel better soon.
 
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