Hi everyone, is there anything else that I can try for pain. I hate medication but if I don't take it a cannot function due to pain, I have been in pain for several days. My pain goes away for about 1 to 2 days than comes back even worse. I go to physical therapy but does not seem to help much (they make me exercise), and after I am done I cannot move very well. I don't like to be on bed either but it seems like I don't have many options. I get so deppress and just makes things worse. I feel like I am trap in a bubble full of illness and pain. I feel like I am livings someone else's life. I used to be happy, active and more. I try to be positive and smile, and when people asked me how I am doing most of the times I tell them I am okay even when I know inside of me that I am not okay. I hate every single illness I have, I try loosing weight to make things easier and I cannot lose not even a pound... :(
I know this sounds bad but I got to the point of thinking life is not worth living this way, but I am afraid of God not forgiving me. I told my doctor that sometimes I WONDER IF ALL THIS PAIN AND ILLNESSES ARE JUST IN MY HEAD but she told me they are not I have got done so many blood work and the results are always bad, now even my AC1 is back to 9. I was told by my doctor that I am very sick. My sister in law hurt my feelings when she told my husband that probably is nothing wrong with me, because is you see me I dont look like I am dying. Sorry for the long story by I just needed to talk to someone, I know is Christmas and everything should be happines but is not. Today I thought about taking my life but I couldn't do it I have my kids, husbands and my grandson who need me. I am not looking for attention I am just looking for Gods mercy.
I am so sorry your going through this. I also can relate. I’m in so much pain too. My right hip is hurting so bad I can’t put any pressure on my leg n it goes down to my knee. As far as your sister inlaw she should live life in our shoes for a day n then come back n tell u how she feels. I can’t stand people who don’t have a clue what were going through n have the nerve to put there 2 cents in. Please try to hang in there. I’m here if u need to talk. Your not alone.
Well, I have the same problems only my sister in law told my brother that I wasn't sick and started a fight where now I don't have any contact with him at all. I have a neice and nephew but can't see them and I feel like I am crazy. My brother called me that and he has no idea what kind of pain I am in and what my world is like since I was told about Lupas. I hate life most of the time and I am a baptist who believes in Christ. I know that I am having to deal with this pain for a reason and I too stop taking pain medication. I was good for about a week and now I am hurting so bad I don't know what I was thinking. I just can't go through this much pain again but I also can't take the migraines the medication was given me. So, I suck it up and bare it but it's hard. Thank God my pastor told me to get on the computer and find a site that can help me deal and with everyone's post I am realizing I am not the only person dealing with this and feeling like this. I know that I am not crazy so when I tell you this please believe it. There is a reason and hope is what we have, keep your faith and know that one day we will be in the hands of our Lord and pain free for enteranity. Hang in there girl.
I think the pain and fatigue are the worst parts. I have tried all sorts of pain meds and was on Vicodin every 4 hrs just to function but you can’t take it while you sleep so mornings were awful. About 6 months ago my doc put me on a pain patch. It runs a constant stream of meds thru me and only has to be replaced once a week. So there’s no up and down feeling. I still have ‘break thru’ pain on really bad days but I really prefer the patch to all the pills. I take enough of those as it is. Only drawback is bad constipation.
I was on Vicodin for pain for about 3 years until I went to pain management. They put me on the Fyntenel patch. Please be careful with these narcotics they r really addictive. I have been through a lot with these pain meds n trying to come off of them was a nightmare. It affects your liver n stops working after your on it for a certain amount of time. We as Lupus patents have to be careful with our organs n putting these pain meds in our body is only putting us in more danger. I know what its like to be in pain I’m in pain everyday of my life.
Have you tied Lyrica? I take it 3 times a day. It really helps. I also take Symbalta which works great for anxiety and depression as well as Fibermyalgia. I also take ketoprophen which is an anti- inflammatory pill. So all these combined really helps me be pain free sometimes.
I didn’t want to scare anyone but I don’t want anyone to have to go through what I have been through. It was a horrible experience. I had to go through withdrawal to get off the pain meds n it was the worst experience. These pain med drs don’t tell u what happens in the long run as far as to come off of the meds. I’m sorry if I scared anyone I just don’t want anyone to go through what I been through.
Different things work on different bodies. The important thing is to make sure you have a good doc who you can discuss things with. And you always have to be monitored. I go to both my pain doc and rheumy every 2 mo to monitor my meds and do blood work. I know Lyrica and Cymbalta have worked for some. I had bad side effects and no help on those. But that’s just me. I hope you can find something to help you find relief.
I know this may sound lame, but I've found that a long, hot bath or a professional massage can sometimes do what pain meds or mild exercise can't. I need to soak for a good half hour, but I read or listen to music while I'm in the tub and the time flies. In addition to SLE, I also have a genetic spine condition that causes me excruciating neck and lower back pain that comes in flares like my lupus. So in addition to pain meds, I also took the advice of another member here and found a local massage school with students who give me awesome massages at at least half the price of professionals. I also bought an orthopedic neck pillow that I use when my spine flares up: Every couple of hours I lie flat on the floor with my head resting on it for at least 20 minutes for a bit of relief that sometimes lasts a couple of hours. However, since I've been sleeping through the night with it for the last two months, it has significantly helped alleviate a lot of the inflammation that builds up in my neck from typing at the computer, which is how I make my living. I'd love to hear if any of these help you, or from anyone else with more tips on pain or fatigue management. pax & no pain, pj
I also take hot baths n it does seem to help. I haven’t tried a massage but that sounds really good. I have been having a lot of pain in the bottom of my feet. Also my right hip has been hurting really bad lately. So I will tryh anything at this point. Thanks for the advice.
I'm right there with you. I have been able to use Bengay to help with my joint pain at night. The funny feeling Bengay gives you takes my mind off the pain and lets me get some rest. Prozac has helped me with depression and anxiety associated with everything. Doesn't do much for the physical pain, but it helps with the emotional. There's also a Flector patch that can be used too. I think it's good for 8-12 hours at a time. I was also reading about how there are these parafin wax baths and it has helped people with joint pain. I've never tried it though.
I'm sorry about your sister-in-law. The whole "you don't look sick" thing drives me absolutely nuts. If only people could live a day in our shoes. I've learned to just ignore statements like that, but they still get on my nerves at times.
If you ever need to talk, don't hesitate to contact me. And remember, we're here to help you!
Hi firstflorde1,needless to say the pain is really there !! I've asked the doctor to many times to find something that will take it away , but of course he always give me more pills . Am also tired of takeing pills and staying in bed when the pain is bad , but dealing and haveing LUPUS has caused so much to change in my life also . Yes it cross my mind to end it sometimes but thinking that GOD will not 4give me is the big part that i can't do it , so i find ways of just bearing with the (PAIN ) and deal with it . Hopefully one day all of this shall pass... Beverly L.
Try mirgelief over the counter works for me. The Cymbalta and other pain meds did not work for me either.
dreamy said:
Different things work on different bodies. The important thing is to make sure you have a good doc who you can discuss things with. And you always have to be monitored. I go to both my pain doc and rheumy every 2 mo to monitor my meds and do blood work. I know Lyrica and Cymbalta have worked for some. I had bad side effects and no help on those. But that's just me. I hope you can find something to help you find relief.