Lupus Support Group

Dear Gidget,
I understand you--I can relate---You are having this pretty bad right now--but a better day will come you'll see....I wrote on your other discussion about your dr. appt---I cant believe they didnt give you anything for the pain--thats crazy---have them do the blood work first if they are afraid that the test will be altered--then get a shot or something!-Tell them you need something for the pain---Once you feel better inside, it will be easier to deal with this crap! I have been were you are right now. I came on here weeks ago--just screaming because I was so fed up with my pain--I thank those who listened--they helped me so much---sometimes you dont want to keep telling your family and friends how miserable you feel--and yes husbands can be a little less compationate sometimes---So Gidget, I am here for you---First--you need to get something for the pain. call that darn Rheumy and tell him! Second--once your test are back you can get on some treatment--one that will hopefully help you---Its so unfortunate that this pain has to last and there is so much time with no answers--My days were so hard with all the pain, and yes I cried too! a whole lot!! But have faith--you will feel better just get something for the pain!! All the rest will have its time to be dealt with--In the meantime feel free to email me if you need someone to vent with or talk too. My prayers are with you---And dont feel like a baby--We have all been there....

Hello Gidget, I am so sorry that you are going through this. I am the mother of a child that is also dealing with pain and no diagnosis. We have been dealing with months of pain and more symptoms, and negative tests (or positive ones that don't make sense), without any answers. Without any doctor to tell me what is wrong with my 12yo DD.

She does have a good week after a bad one. So, it isn't as constant as it used to be. Now, we may be piecing this together a little better now that the heat seems to make her flare and only so many diseases have that as a symptom.

I am holding onto hope that we will both get some answers, and get them soon so that you and my DD can get proper treatment. Kymberli

Dear Gidget,

Please do not apologize for ranting. I want to thank you for ranting here. I really believe it is very helpful & healthy to be a part of a group of others with the same disease and issues for the most part. It is very hard to make each day the best I/we can. No doubt about it at all. A couple of days ago, I was having some homemade mint tea (my favorite) with my mom. We were sitting on the front porch watching the cars & folks. I was just fine and then all at once I just felt so empty inside. Like I was hit hard in the chest. Like you in the restaurant, I started crying and could not stop. I didn't stop crying until I fell asleep with my night time pain meds. Boy the next morning, my eyes were swollen & red as can be. To be honest, I still feel emply inside right now but I have managed to stop crying. Well, for the most part. My face burned as well from the salt in my tears. I don't like feeling like this at all of course. Who does...... lol.

I really believe in my own heart, that my mind & spirit have to do this sometimes. I try to look at it as maybe my sub "whatever is in my head lol" is releasing itself so that I can go on day to day. Oh dear, here I go with my fruit-loop ideas eh?

I seen my Rhuemy today for my 3 month check up. My head has been blaring for days now with one heck of a headache. My best friend went to the doc's with me. Afterward she begged me to go to the Red Lobster with her. She knows I adore seafood and wanted to take me there for my birthday on Sunday. I will be 50. I tried really hard to tell her I wasn't up to it, but she was so excited to take me, so I gave in. I totally appreciate her love for me, and wanting to take me to a special place. I don't take it for granted at all. But during the meal, I had to move from one table to another because the lamp above our table was actually making me sicker. The light was so hot on me, my face began to sting & felt like it was burning. By the time I got home, I was totally sick. I live about 40 miles from the city. I have asked my doc's for a long time why lupus does this kind of thing. It use to do it to my older sister as well. My doc's just say that it is the illness unfortunatly.

My heart goes out to you sweet lupie sister. If there is anything I personally can or may due for you, please, it would be my honor. Please email me @ rachelleclark@msn.com

Make sure you put lupus group on the subject so I don't delete it.

Big hugs, snuggles & prayers to you sweetheart. Rachelle

Gidget,
Honestly, I am going thru the same thing, emotionally. For the first time in my life I have felt like I literally may need to be admitted to a psyche ward to help me get thru this rough time. I have felt like Im going crazy at times (which may be a side effect of the prednisone). My stress is overwhelming and when Im flaring I get depressed, frustrated, sad, angry, and hate my body/life because of my body. I think because we are normally active people and hate to feel bad, it effects us worse. I was very depressed before I got diagnosed and actually thought about killing myself........Even after being diagnosed, when the meds stop working or Im having a bad day, I get depressed. This is normal......For me, I dont think it will ever go away even while I am on Paxil. Are you taking an anti-depressant? I know exactly how you are feeling. I am normally a stuffer and dont complain about my illness but lately my whole family knows how sick I am and what an emotional mess I am.

About the tears.....Your body could be very acidic which is why your tears were burning your skin....This HAS happened to me. Your body can become more acidic from sugar, caffeine, and not enough fluids...Your blood work should be coming back next week. Have them fax or send you a copy. Post your results. Please hang in there. Please have the APS test done....Did you ask for a pain medication???? Because there are so many narcotic drug seekers, some dr.s are much more hesitant to give them to their patients. Ask your GP or rheumy if they can give you a shot of Toradol (?) Tramadol (?) to see if it helps with the pain or ask if they can prescribe you Ultracett which is a non narcotic pain killer with narcotic benefits. That med (also known as tramadol) helped me at one time. Tracy may know if there is a shot that can help with the pain.

Please vent to us and dont stuff these toxic emotions....I dont have anyone who really understands my feelings either. I dont think many of us do....I am always here for you. Email me anytime.
xxoxoxoxox
Meliss

Gidge....how long ago did you have lyme disease? Are you sure it was completely gotten rid of???? Have you been to the infectious disease doctor about the lyme disease you had??? It sounds like you either still have it, it triggered an auto immune disease, or you have been damadged by the lyme disease which could be causing residual problems....I would think this would be a red flag to the doctors that you HAD lyme disease and are now sick as a dog.

Thank you everyone for your love and support.
I had or still have Lymes, I got it when I was 16 and no I wasn't fully treated. The doctor I was seeing no long worked at the place when I started having side effects to the antibiotics. I went back to see him and he wasn't there. The other doctors back then didn't really believe in Lymes. So I only took meds for a week maybe 2. The Rheumy knows about the Lymes that's why she mentioned me going back up north for some testing and treatments. Fl she said the doctors here have no clue how to treat this disease.
Another thing I have noticed is that I'm sooo tired all the time. But I can't stay asleep. I just went to bed at 1 and here it is 4:30 in the am and I'm wide awake. I wake up all through the night thirsty or for no reason at all. Im having such bad hot flashes on top of everything. My estrogen isnt working. My house is 69 degrees and I feel like its a hundred..Anyways I'm gonna lay down my body hurts and I'm all swollen. Thanks again all of you..

HUGS

You have an awful lot going on in your body. It is understandible to be stressed and cry at the most inoportune times. I get a lot of that. I asked my acupuncturist (as the silent tears poured) why this kept happening. Am I clinically depressed? She told me that it was because that is how I store stress and the tears are the release. I told her that I didn't like to "release" anytime. She just smiled and told me that she does the same thing and if anyone mentions it, she just tells them that she's the member of the crybaby club. I'm like you though, I don't like it and have been taught that tears are a sign of weakness; but getting them out is helping whether or not we get embarrassed. I just had a bought of the crying when I went down at the hemo appt. They had to get me a wheelchair and I just started crying. After seeing the look on my son's face, I quickly snuffed them. Cry, it is good for you right now and be damned anyone who makes fun of you. You are very strong and will come out of this period even stronger. Sending some positive energy your way.

Gidget, I am so sorry you are going thru this...I have, and am there with you. Do you have a regular dr? I ask because when I was waiting to get into my rheumy (which took nearly 5 months) my gp gave me pain med, and on really bad days I would go in and he would give me a shot to help. Don't know if you said you had a gp or have called him. But another thought I have and have said this on here before but when I have really bad swelling, my joints are hurting soooooo bad and I can barely feel my legs I take a hot bath and put salt in it (just regular ol salt from your cubboard) for me it really helps, at least for a bit. Might be worth a shot.

I know how you feel on the sleeping, I am sooooooo tired but can't stay asleep, last night I also didn't go to bed till 1a.m. and then got back up 4a.m. to go to work. Luckily today I only had a half day. I have been down in bed for the last two days with pain and migranes.

I am like you, I just start crying so hard I can't stop. It is sooooo frustrating with this, it is sometimes to much to take. I don't have a supportive family either...just my husband and two boys. I can see sometimes though that my husband seems to be irritated. Then that just makes me feel more upset and guilty for being sick.

Anyway, my thoughts are with you. I hope you get to feeling better. Please let us know how things are going. I am sending you big hugs.

paige

Since getting sick I have cried countless numbers of times. It is too much, to think this is life long. It can feel very powerless, as if its one of those things only God has the answer for. I just wish we could get a step further in finding a cure for all autoimmune disease. It can be horrific. I know how you feel.

Gidget,

The shot Melissa was talking about is Toradol. It's a non-narcotic, injectible NSAID that works as WELL as a narcotic. Docs in the ER use it a lot. It may give you a little relief.

Sweetie, crying is entirely natural and okay. You are grieving the lost of the body/self/person you used to be. And the future is absolutely terrifying, no question about it. It's okay to cry. Cry and sleep as much as you need to. Believe it or not, when we cry, our bodies secrete a substance that calms us down.

We're all here for you. It's going to take time for you to emotionally wrap around what your body is doing. And definitely call your doc or go in and get some pain relief. You should NOT be suffering as you are. Your doc needs to give you some PAIN CONTROL. We're here for you, sweetie.

Tracy

Dear Gidget.
I wish all the pain and sadness would just leave you and everything would be perfect. (there I go being Pollyanna again).
Anyway, I hope you can get some relief soon. Isn't it great to have DS to get so much support and info.
Hope you have a great 4th. and will feel better soon.
I will say a prayer for you and your family.
Blessings and hugs,
Virginia