View Full Version : Hello! New member here!
02-22-2013, 07:42 PM
Hello! Boy am I glad to have found this site. I could definitely use some advice on what I am enduring. I am 30 years old and after two miscarriages, my husband and I had a beautiful daughter in July -- she is 7 months old. My immune system has been plaguing me since college and as the years have went on I am becoming more and more debilitated. I am on my 2nd rhuemy who writes "probable SLE" on my med record but when I ask if it is SLE she says u have lupus or something "in the lupus family." My biggest complaint is debilitating upper back/neck pain. I suffer from extreme fatigue, anemia dry eyes, butterfly rash, photosensivity, daily headaches and just flu like all over fibromyalgia daily. I was on plaquenil for about 8 wks when I got the hives all over my body (drug reaction) and can never take that med again. I've been on prednisone, tramadol and lidoderm patches for several weeks now and my Rheum just prescribed the pill form of MTX and it is sitting at the pharmacy waiting on me to get it. I am absolutely terrified. I had a lymphoma scare in 2007, my bloodwork (leukopenia) was all out of whack and the drs hospitalized me for a week and did a bone marrow test which was negative, thank god. As a new mother to a precious baby girl I am terrified of the side effects from mtx. yes this disease is making my quality of life bad. I feel like a complainer :(. I cry because I am a stay at home mom and I struggle through the days with my baby girl. All I want to do is feel good and have energy and i feel like death every single day. My husband and I live hours from our families as well which makes it difficult as its just he, I and baby. I'm terrified of starting MTX and am debating on when to start it if I do. My rheum seemed very adamant that it will stop the progression of my disease even though she only says "probable SLE" and i dont consider probable a diagnosis. I am home mon thru fri alone with my baby so can't add horrible side effects on top of it? And I hate to ruin my husbands entire weekend with me in bed as well. Any mommies with lupus to young babies? How do u get through it? Every day I am in so much pain. He Advil and lidoderm patches do little. I try to take the tramadol sparingly and when I do at night b/c it makes me drowsy. Rheum also prescribed skelexin ( muscle relaxer) but I haven't tried hat yet either. Thank u for listening! I have an amazing husband and parents but nobody understands what it's like to feel sick all the time.
02-22-2013, 08:00 PM
Please excuse all of my typos! My husband just talked me into the new iPhone and I am learning to type on a touchscreen phone :) hope you all can understand what I wrote! And thanks again for listening!
02-22-2013, 08:10 PM
I forgot to mention my inability to concentrate or remember things. I remember asking people a question but for the life of me cannot remember there response so I have to repeat myself. My friends sometimes make fun of me and call me ADD and although I have a great marriage my hubby says I "never pay attention" to him and I "don't listen to anything he says". I feel terrible because no matter how hard I try, I just can't focus or concentrate :(. I also had a "weakly positive ANA". And whatever blood test they do for inflammation showed I had a lot. I needed 2 blood tranfusions after the birth of my daughter in July bc bloodcount (hemoglobin i guess?) was so low. Tingling in hands and very cold feet/hands often. Hmm I think that's all my symptoms.
02-22-2013, 08:21 PM
Congratulations on your new baby girl! I am so sorry you feel so sick during such a joyous time in your life. I am also a newbie who is undiagnosed. It is hard to raise a family, but when you don't feel good everyday that takes things to a different level. I have three children and my youngest has Asperger's. Everyday has new challenges. I have to listen to my body. I work full-time and when I come home how I feel tells me how much I can do. Make sure you do not overdo it. When your baby is resting, you should rest as well. Don't hold yourself to high expectations of perfection.
I know how you fell that nobody understands what it feels like to be sick all the time. I look fine. Only I know how I feel and I need to take care of myself and sometimes that means I have to say no to other obligations and over schedule myself.
The more I stay home and focus on my pain, the more I hurt. The more I move, do, and interact with others the better I feel. It's not easy and maybe it's mind over matter. It helps me. The fatigue for me never goes away. I fight that every minute of the day. But it's up to you if you want to try the new med or not. You should find lots of helpful information and support here.
02-22-2013, 09:52 PM
Welcome to WHL!
02-23-2013, 08:37 PM
Thank u for the welcome! And very good advice tupelo. I try to do mind over matter as much as I can and the entire time I am pushing through I am very aware of the pain and fatigue. It just wears on me. I decided to start the methotrexate tonight. My husband is Leary but I want to give it a try. They started me on the (6)2.5 tablets 1x per week and I go back in 4 weeks to get my dosage increased. I'm tolerating it well so far (i took it about 3 hrs ago) just very little nausea. Can anyone tell me how long it typically takes to start giving relief? Will 2.5 even help? Also I know everyone is different but how much do they typically increase you too and what other side effects should I expect. Being a mommy to a 7 month old doesnt leave me much room for being sick as I am up and down all day taking care of my baby :(
02-23-2013, 08:56 PM
Hi and Welcome to WHL!
Congratulations to you and your Husband on your new baby girl also!My baby just entered her teens but she'll always be my "baby" although she doesn't like to hear me term it that way lol.
I take my MTX on Friday night at bedtime.I have never gotten sick from it.I am just more tired the next day or so.It took me about 5 weeks to notice improvement.I take 12.5mg weekly so one pill less than you.I wish you luck with it.I know everyone is different but I have done well.
Again welcome to the site.
02-24-2013, 04:18 PM
Thank u for the welcome! And very good advice tupelo. I try to do mind over matter as much as I can and the entire time I am pushing through I am very aware of the pain and fatigue. It just wears on me. :(
J - What I was talking about was when I am in pain or the fatigue is bad, I usually have to use my mind to talk myself into doing things I would rather not do. Like get out of bed in the morning or I probably would listen to my body too much and that is not good for me. But I do need to know when not to push myself and that can be a fine line some times!
I hope the new medicine helps you, and that you will find some relief. Good Luck!