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View Full Version : I am getting tried of this BS



lizbond36
08-24-2011, 08:45 AM
Went to my doctor Tuesday, Good news my blood and urine is fine. Doctor is giving me other pain killer that should work better then the one I am on now. Down side Doctor said I have fibromyalgia along with Lupus what the hell. How much more can my body take before it quit working. When she push my points OMG I wanted to hit her. That hurts, I thought if I have just Lupus I be ok but now she tell me, I can have more then one Dieases. I am getting tried guys :-(

Hugs
Liz

rob
08-24-2011, 09:03 AM
I know how you feel Liz,


I have both Lupus, and MS. I also have had some serious problems with Trigeminal Neuralgia, which thankfully, has been dormant for many months now.

I got my SLE diagnosis back in 2004. Then, two years ago, after a bunch of extensive and sometimes painful tests, my neuro tells me I have MS as well as Lupus. I literally said you've gotta be sh**ting me! WTF? To say I was fed up, and pissed off, would be an understatement. It's as if Lupus wasn't enough to deal with already.

I still get an attitude about it, and I still ask "why me" sometimes, but for the most part, I've accepted it. It's unfair, and it sucks, but at the end of the day, I find that living with two or more autoimmune disorders isn't much different than living with just one.

Rob

tgal
08-24-2011, 10:26 AM
Let me raise my hand as a member of this club. I am currently diagnosed with Fibro, Lupus and Trigeminal Neuralgia (TN). Now, with all of those I have secondary issues like Raynauds, Vasculitis and Seizures (several other small ones but I they don't really matter behind the others). Like both of you have said I hit the "Why me" times on occasion. These past couple of weeks have been hard on me but I seem to be coming out of the serious part of this flare. I know it sucks Liz but. except for MS and TN things are basically treated the same and it seems like you have a doctor that understand that people with Lupus and Fibro tend to have a more serious form of both diseases (They hurt a lot more) so the idea of upping the pain meds was a good one.

Sorry that you are going through this but, once again, you are not alone

debbie-b
08-24-2011, 03:48 PM
Unfortunatly I know what you are talking about and what you are going through.
I was dx with Lupus, RA, Fibro, Raynauds, I also have Asthma, Mitral Valve Prolapse and Sicca.
My daughter the commedian in the family, always said, " Mom you just need to stop yelling ME, when they hand out illnesses".lol
Like Rob, some days, when I am in alot of pain, I say why me?
But most of the time, I just live with it, because there is nothing I can do about it.
I was in a good place, pain wise, with the MTX shots, but now that my liver is missbehaving, I have no idea what's next. All I know is, that I don't want the pain back.
I hope your doctor will find the right pain meds for you.

Debbie

lovedbyHim
08-24-2011, 04:11 PM
Liz I have lupusand about 4 months ago was diagnosed with fibromyalgia. I was really upset at first but she put me on cymbalta and I am doing better with managing the pain and spasms. I stretch 3 x a day and started light weights. I read a story about how a woman was in a wheel chair from fibromyalgia and now is a gymnastics instructor. I exercise every day now and I was able to go backpacking again. I thought I would never be able tidings that again. Pleas don't lose hope at least now it can be treated and maybe managed. I blamed the lupus for all the spasms and nerve pain.

lizbond36
08-24-2011, 06:32 PM
Thankful I am not alone, Rob the doctor think I have MS but I refuse more testing I know that might be hard to understand but I am a human not some test rat :-). I am taken Meloxicam have anyone heard of this pill?

Hugs
Liz

magistramarla
08-24-2011, 09:11 PM
Liz,
Unfortunately, it seems that all autoimmune diseases like to invite their friends to join the party.
Mine are Lupus, Sjogren's, RA and Psoriasis, with some Raynaud's, Meniere's and Spasmodic Dysphonia thrown in for more fun.

I was also tested for MS, but it was all negative. Sjogren's can mimic MS, so that might be something for you to check out.
Luckily, most of the AI diseases are treated with similar meds, so it doesn't wind up being too complicated.
Hugs,
Marla

Gizmo
08-24-2011, 10:45 PM
Liz, I hate the fibro diagnosis more than the lupus label - and I often don't even tell new doctors about it. It's the stigma that goes along with it that I can't stand. I guess the "good news" about fibro is that it supposedly isn't progressive and that it doesn't damage organs like lupus does. I figure that lupus is my big enemy and fibro just tags along for the ride. The hardest part for me is trying to figure out if my muscle pain is because my lupus is more active (I have myositis) or that the fibro got riled up. The only difference is whether I need to kick up my prednisone or not.

I'm sorry that you have a dual diagnosis, but you are in good company here. I think most of the folks with an actual "lupus" diagnosis have at least one other debilitating diagnosis. I'm not downplaying your situation - just letting you know that there are others who have walked this path and can help you along the way.

lizbond36
08-26-2011, 06:57 AM
Thank you everyone, The lupus meds are still not working. I been taken those May 2nd or the 3rd can' t remember. Do I really have to wait till Oct or Nov to feel somewhat alive. One thing is for sure LUPUS SUCKS
Hugs
Liz

Gizmo
08-26-2011, 10:07 AM
Thank you everyone, The lupus meds are still not working. I been taken those May 2nd or the 3rd can' t remember. Do I really have to wait till Oct or Nov to feel somewhat alive. One thing is for sure LUPUS SUCKS

Have you and your doctor talked about prednisone at all? That can give the lupus a quick kick in the pants and maybe calm things down until the other stuff starts to work. Even a small dose (like 5mg) can help without a lot of side effects. I am assuming you are waiting for plaquinil to kick in? If lupus is affecting your ability to work and do your daily stuff, you might want to ask the doctor about a trial of prednisone.

Saysusie
08-26-2011, 11:46 AM
Well, I have to say that I, too, am a member of the Lupus/Fibromyalgia club. In fact, it is a very common occurence that persons with Lupus will develop Fibromyalgia (not so much the other way around). I remember when the pressure point test was performed on me and I wanted to slap the doctor. After the excrutiating pain of one pont, she did not give me time to recover before she moved on to the other point. I finally screamed "Wait a minute..just give me a d@#ned minute!!" I have to give her credit, however, for warning me before she started that I was going to hate her by the time that she was finished.
In the past several years (and especially the past 4-5 months) the Fibromyalgia has been causing me extreme and insidious pain. It has been relentless and has pretty much made me unable to leave my house. But, I cannot say that the FM is worse than the Lupus because when Mr. SLE decides to act up, I am either bedridden or hospitalized.
I am sorry that you have to deal with both of these issues, but please know that you are not alone and that we are here for you.

Peace and Blessings
Namaste
Saysusie

lizbond36
08-27-2011, 06:09 PM
I am on Plaquinil, He told me that med predisone will mess up my tummy, which is already in bad shape. My shoulder is killing me, and pain killer isn't working. However she told me I have to give it 30 days to work. I am drain, tried and in pain all the time. I am sorry I am crying like a baby, but my flairs last 3 days to a week now its been months with this flair and I am getting tried. I feel like giving up, and stay in bed. I am sleep in dark room due to the morning sun, not dealing with this.
OOOPS here i go again on my box. Thanks for letting me spill my guts to you all :-(
Hugs
Liz

tgal
08-27-2011, 06:54 PM
I am so sorry and feel free to vent and cry all you want. We have all done it. Susie is correct. Sometimes the fibro pain can bring you to tears. sometimes it feels like you just can't take anymore. Sometimes you think you cannot make it one more minute. Then the next minute comes and you did survive. You did make it and you are one moment closer to getting out o the flair. Until that time just come here and cry on our shoulders. We understand