New member, tumbleweed.

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Veteran Member

Date Joined May 2005
Total Posts : 7725
   Posted 9/9/2014 7:13 AM (GMT -6)   
From tumbleweed.

Just joined, I'll be 43 this month, I was diagnosed with Lupus 11/13, so not quite a year ago, ana was 1:640. I likely had it several years before dx, but was unable to get the doc to test for it. I guess I just bugged him long enough, he gave in to shut me up lol. Anyway, my problem is not only the low sex drive, (low is an exaggeration, more like non-existent!), but the pain. There are days when my skin feels (and looks) like it has been scaled with hot water, or the muscles in my arms and/or legs hurt so bad I can hardly stand to be touched. I take Plaqenil, Zoloft, flexaril, atenolol, Norco 10/325 round the clock, and diclofenac. I also want to be able to be intimate with my hubby of 25 years, and I don't want him thinking it is him. I don't know what to do. Does anyone have any suggestions on how to lessen the pain? Does anyone have the muscle pain like that, not able to be touched? It feels like some one punched my arm/leg and the area gets really warm compared to the surrounding areas. I can't even lay on the affected side when it is real bad.

Regular Member

Date Joined Jul 2012
Total Posts : 73
   Posted 9/17/2014 11:32 PM (GMT -6)   
yes i have that kind of muscle pain that if touched i promise i will go mad.
The offer still stands- John 3:16

Barbara Lee
Veteran Member

Date Joined Sep 2003
Total Posts : 2889
   Posted 9/18/2014 7:56 PM (GMT -6)   
Hi Tumbleweed:

Welcome to the lupus forum, so sorry that you needed to join. I understand the muscle pain you're describing, I suffer with it all the time. I do not believe it's related to my lupus though. I was first DX'd with Fibro and with Fibro you muscles can feel as if they are on fire. My muscles at times feel like there a little person inside me with lighter burning my muscles.

It's painful to touch them and at times my muscles hurt so bad that I think death would be a better option. I also have RA and my lupus on top of the Fibro. I learned two years ago that I also have LGL leukemia, which is a leukemia that happens with RA and auto immune diseases.

For me to control my chronic pain I do take oral pain medication. I have both a long acting medication and a short acting or break through medication. I also, use lidoderm patches, TENS unit, heat, ice, massage, PT, stretching, meditation, and biofeedback to try to help control my pain. I also see a therapist who deals with pain patients.

I'm also on tons of medications to treat my various illnesses, I can say that I take 24 oral medications daily. Then I take break through pain medication as needed, as well as anti nausea medication. Plus I take 2 shots daily in my stomach and MTX shot weekly.

For me I'm never pain free and don't expect to be. I'm always tired and never feel well, but I forge ahead everyday and try to make it the best that I can. When my pain is sky high, I'm suicidal and want to die period, I work through that with a lot of help from friends and Doctors. I'd suggest that you talk with your Doctor and ask them to send you to a pain management doctor and see if they can help you out with something.

Now, not everyone agrees with taking pain medication. I can tell you my hubby isn't big on it, nor is his sister who IS a Doctor. They like to call me an addict, which I'm not, but that's a whole other issue. If you're against pain medication then possibly trying some of the other stuff I listed may help.

Lupus is the disease of 1,000 faces and we all react differently to it. Some are lucky and get sick bad once and go into remission and do great. Then there are folks like me who do not respond to treatment and we are sick as all get out. I've taken every medication to treat lupus except gold injections and my Doctor's feel that would be a waste. So, I've had to accept this is as good as it's gonna get and go on with my life. I know that I've been told I will get sicker until die. I'm just along for the ride right now, if I can offer you any advice or additional information let me know.

I hope that you get some pain relief soon, and that you're able to start feeling better really soon. As the the sex part. I've been married 29 years now going on 30, communication between you and your spouse is important. It's important that they understand it's not THEM, but your DISEASE that is keeping the fire from burning to hot. I know my spouse would never consider asking me to do something if it's going to cause me any pain. He's say that would take the fun out of it, him knowing that he's making me feel pain or worse.

Good luck and let us know how you're doing and if your pain gets better. This is a great place to come and vent and talk about how you feel. We've all at some point felt the same way. Take care of yourself and rest when you're tired.

DX- RA, Lupus, Fibro, LGL Leukemia, Obstructive & Central Sleep Apnea, Pulmonary Hypertension, Bells Palsy, Gastroparsis, Blood Clots, Glaucoma, Chronic Pericarditis & Pleurisy, Severe Anemia. Way to many medications to list.
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