HI MAMA MARSHALL, I ALWAYS TELL MY DR,IF YOU DRAW ALINE STRAIGHT DOWN THE MIDDLE OF MY BODY,MY RIGHT SIDE FEELS PRETTY GOOD..ON THE OTHER HAND,MY LEFT SIDE KILLS ME,FROM MY TOES TO THE TOP OF MY HEAD,MY LEFT HAND,WRIST SHOULDER,AND MY LEFT HIP,KNEE AND MY FOOT,I HAVE HAD BELLS PALSEY TWICE ON THE LEFT SIDE OF MY FACE,AND I HAD HEART SURGERY AT 40YRS OLD,ALSO ON THE LEFT SIDE...SOMETIMES IT IS CRAZY,I HAVE TO WEAR A BRACE ON MY LEFT HAND TO DO THE BASIC TASKS ..WEIRD..
Update! I had a good nights sleep last night, and work and noticed I did not have as much pain and stiffness as I usually do early in the morning. Praying that Tramodal is the one that works for me.
Hello Iamwiam,
Nice to hear you slept well lastnight with no disturbance besides with also going to work...well fingers crossed for you i do hope Tramadal helps you in a large way.
Love Terri xxx
The detox bath is 1-2 cups Epson Salt, 1 cup Baking Soda and 2 tablespoons powdered Ginger. (another variation is 1 cup salt, 1/2 cup baking soda and 1/2 cup ginger) It helps pull all the toxins out of your body (Ginger usually makes people sweat)...Sit in it for about 30 minutes and then when you get out wrap yourself in a towel then a warm blanket...it will help you sweat out a bunch of toxins.
This is not medical advice, and if you have high blood pressure or don't deal with heat well I wouldn't recommend it. I am just sharing what personally works for me.
siskiyousis said:
what do you mean by detox baths...i found epsom salt bath really helps greatly for my pain in hips and mid body area...that i know is not arthritis pain...more fibro pain. I stay in for couple hours. My brother as teen ager and young adult would have to take baths all night to help with pain in his intestines as well as hips like me now. Back than they rarely give anyone strong pain meds...1980s. So taking hot baths was only thing that helped...now i get how and why they helped too.
The catchy thing is if you also have RA like i do...heat can cause those area's to inflame worse so i keep feet knees out of hot bath water. It works and i get to read! Which is great distraction from pain if the book is good!
MamaMarshall sInteresting! Thank you all for replying...
I want to respond to all of you one by one, but that would take me forever. So I am going to syplify it by saying , I can relate to the hand and leg issues the most. The medication issues, well I am just starting to get into those, right now I take 2 blood pressure meds, an RA med, and steroids-but I only take the steroids as 7 day packs as needed, I am not on it consitantly. I am beginning to wonder though if all the crap they have us on doesn't add more problems than help.
My right leg is usually the biggest problem. I get these deep pains in my hip and ankle, and because it causes me to walk wierd, my back ends up hurting too. I do a detox bath once a week that I find helps me relax before bedtime. It's my me time, because you have to be in the bath for about 45 minutes for it to do anything. It helps pull some of the inflamation out, and I sleep sooooo good the nights I take it. I can't do it too often, because unfortuantely I am starting to have skin problems too and it will dry my skin out. But if anyone wants me to share the info on the bath, I will be happy to.
I really hope all of you feel better, it really breaks my heart to see so many people struggling with this.
Hi MamaMarshall, yes i've been having pain on my left side for a long time . On Tuesday, Dec. 2012 , my doctor gave me a shot in my left hip to stop the pain , but of course the pain didn't stop - they say it suppose to stop in a couple of weeks give or take (6 to 8weeks to see any change). But make sure that you let the doctor know what is going on and get some rest as you need !!!!This pain is crazie and makes me feel helpless at times . We are here to support each other as we need ... So hang in there ... feel better and talk with you later ...Beverly L.
Trust me, I complain to my doc...unfortuatenly like I said before he is kinda crappy. I get the feeling he is more about the $$ than about his patients. I just made an appointment with supposedly one of the best around here, but I have to wait till April to get in :/ In the meantime I am doing my own research I have learned a LOT from this group too.
I hate it, but lately in order to function a little, I have had to live on pain killers. I try not to take them until I can't function anymore, because the last thing I want is to become addicted to anything. I hope and PRAY this new doc can help.
Beverly L. said:
Hi MamaMarshall, yes i've been having pain on my left side for a long time . On Tuesday, Dec. 2012 , my doctor gave me a shot in my left hip to stop the pain , but of course the pain didn't stop - they say it suppose to stop in a couple of weeks give or take (6 to 8weeks to see any change). But make sure that you let the doctor know what is going on and get some rest as you need !!!!This pain is crazie and makes me feel helpless at times . We are here to support each other as we need ... So hang in there ... feel better and talk with you later ...Beverly L.
Hi Beverly,
There's different forms of arthritis also that can cause hip problems with Lupus...my left hip hurts terrible and i can feel the bone rubbing at times and that's through osteoarthritis where the joints rub to gether.
I do feel for you mate and i hope that jab gives you some relief.
Hugs Terri xxx
I hope this doctor help you also !!!! Good Luck and get rest til then .... Beverly L.
MamaMarshall said:
Trust me, I complain to my doc...unfortuatenly like I said before he is kinda crappy. I get the feeling he is more about the $$ than about his patients. I just made an appointment with supposedly one of the best around here, but I have to wait till April to get in :/ In the meantime I am doing my own research I have learned a LOT from this group too.
I hate it, but lately in order to function a little, I have had to live on pain killers. I try not to take them until I can't function anymore, because the last thing I want is to become addicted to anything. I hope and PRAY this new doc can help.
Beverly L. said:Hi MamaMarshall, yes i've been having pain on my left side for a long time . On Tuesday, Dec. 2012 , my doctor gave me a shot in my left hip to stop the pain , but of course the pain didn't stop - they say it suppose to stop in a couple of weeks give or take (6 to 8weeks to see any change). But make sure that you let the doctor know what is going on and get some rest as you need !!!!This pain is crazie and makes me feel helpless at times . We are here to support each other as we need ... So hang in there ... feel better and talk with you later ...Beverly L.
Hi Tez, well i went to the doctor last Tues., and my MRI results were back - i give up !!! if it's not one thing or something with this LUPUS stuff. The test show that there is 2 things going on , 1. i have tiochanteric bursitis (which is from the LUPUS and there is nothing they can do-it's all part of the LUPUS process) and 2. i have bursitis only in the left hip .The doctor gave me a shot of sterriods in the left hip to help with the pain (that drives me TOTALLY crazie ) and said to come back within 6 to 8 weeks . Really i haven't felt a change YET but they say give it a week or to. I really don't think this will help either but of course they have to make us think that they are really trying -LOL LOL He also reordered for me to go for outpatient rehab, which am still waiting from them to contact me . I don't know what else to do , strange feelings make me want to cut my leg OFF-smile But on the other hand am a fighter and not giving up to LUPUS .make sure that you get as much rest as you possible can , talk with you later ...Beverly L.
Tez_20 said:
Hi Beverly,
There's different forms of arthritis also that can cause hip problems with Lupus...my left hip hurts terrible and i can feel the bone rubbing at times and that's through osteoarthritis where the joints rub to gether.
I do feel for you mate and i hope that jab gives you some relief.
Hugs Terri xxx
Bev,
I have been having cort shots for over 25 years now off and on. Plus, i have many family members as well as friends who also have got them. You should have felt immediately better! Not in 8 weeks! It can only work on some people for only 8 weeks.
So i hope you call your doctor and tell him how it has not helped at all. I have had them in my hips as well as every major joint. I just got cort shot in my shoulder at end of August and it immediately felt better before I left the doctor's office. I was kind of nervous about letting this person give it since she is just a Nurse Practitioner but so far in everything she been as good as any doctor or better....her husband is my doctor. I just thought if she did not follow what I know is how it is done is ask why she was not doing that step. Such as finding first where exact spot that hurts the most than marking it. If they do not do that...might as well not get it. Rest was exactly how either my Rheum or Orthopedic doctors have done it. Like i said before the shot i could not move my arm to behind my back and she had me try but very slowly to make sure she had hit the right part of joint. I could do it....now that it is hurting again, i cannot reach at all or like rest my arm on my car window. i guess i am stuck for surgery since i cannot get another shot for months still.
Plus they always tell people to rest that joint after the shot because it feels better and it is very easy to over do it since the pain is gone! So i hope you call and ask why it has not helped. To go through the pain of those shots and than not have it help...well just not fair!
Also about your bursitis.
You must have been diagnosed with RA along with your SLE...which often go hand in hand kind . I have had both since my teens. That kind of bursitis is from RA. Wiki gives few examples what might have set it off.. Gave you link...if you like to read about it and what one can do, causes etc.
http://en.wikipedia.org/wiki/Greater_trochanteric_pain_syndrome
Osteoarthritis is the most common arthritis mainly due to wearing down of cartilage as we age. most people get it eventually at some point in their body.
Just because you feel bone on bone does not necessarily mean it is osteo. My RA now is bone on bone despite the doctors trying to score and help my cartilage to grow a bit more since i was so young when it was happening. Now they can grow some which is very hopeful for us!
Now i know we all handle drugs and Lupus/ RA etc differently. Could be this is just what is normal for you about the cortisone shot not helping. I mean what works for me may not for you and I am not doctor...just have had ton of those shots but still does not make me expert. Could be there is new variety of the drug i do not know about and it works differently than regular cort shots.
But i hope you do ask...i know how bad joint pain can be...no pain drug ever takes it away where if you touch it or try and sleep on it hurts enough to wake you up. If shot had worked like it should have...you be having some decent sleep and i hope that happens soon for you!
sincerely hope you are feeling better soon and you too mama marshall!
Hi skiyousis, yes - i did calll the doctor today and he did return my phone call , amazingly within 2 hours . I told him exactly what was going on , he really didn't know what to stay but please rest and see me Feb. 2013 , in other words 6-8 weeks is what the shot suppose to do to see the results !!LOL But hay ! i don't know anything else to do and so far this doctor has been GREAT !!!!!! since day 1., am going to do that and write down the pain level once again . Yes i do have RA along with the LUPUS , which to me is more PROBLEMS , and also as of Dec. 4, 2012 , the doctor tells me the results from the MRI was showing "Trochanteric Bursitis " in both hips due to the LUPUS which nothing can be done about , and Bursitis in my left hip ,which that's what the shot is /was for that pain. WOW!!!! this situation it's so -( i really don't have words for it). This to shall pass !!!! But hay ! Welcome to the world of LUPUS !!!! til death do us (LUPUS)apart ... LOL Well Thanks for returning the response ..... Beverly L.
P.S. take care and talk with you later ......
Beverly,
Hang in there woman That really sucks that they just have nothing to offer. I am still new to this whole lupus thing, but it's frustrating that the common response is "oh well nothing we can do, is you just have to deal with it". I really hope that you don't have to wait 6-8 weeks, that seems a bit off. Hopefully you will get some relief soon.
Much Love!
Interesting discussion... I've never thought of it before.
Right side:
Jaw and neck
hand - cannot write with a pen anymore - extreme pain in little finger
right hip
right knee
both legs affected
I heard a story once where a lady went in and told the doctor every place that was hurting in her body. To which he replied, "Does the roof of your mouth hurt?" She touched her tongue there, looked at him and said "I believe it does!" That is kinda the way I feel sometimes!
Faye
Hi mama, tis the first time ever that my doctor has scheduled me this far out , besides this is the first time i've ever gotten a cord shot also . I was taking pain pills for the start of this LUPUS stuff , and the pills were not giving me any relief after a while , but it's okay he called back on Tues. and rescheduled the appointment for Feb.2013 which is much better than April.... Beverly L.
MamaMarshall said:
Beverly,
Hang in there woman That really sucks that they just have nothing to offer. I am still new to this whole lupus thing, but it's frustrating that the common response is "oh well nothing we can do, is you just have to deal with it". I really hope that you don't have to wait 6-8 weeks, that seems a bit off. Hopefully you will get some relief soon.
Much Love!
Tell me about it Faye , that's really funny- yes we do hurt all over .... and we sometimes run out of things to say to keep us from going CRAZIE from the pain, take care and keep laughing ..... Beverly L.
Faye said:
Interesting discussion... I've never thought of it before.
Right side:
Jaw and neck
hand - cannot write with a pen anymore - extreme pain in little finger
right hip
right knee
both legs affected
I heard a story once where a lady went in and told the doctor every place that was hurting in her body. To which he replied, "Does the roof of your mouth hurt?" She touched her tongue there, looked at him and said "I believe it does!" That is kinda the way I feel sometimes!
Faye
Well, I got my first real lesson in not being stubborn tonight. Again I am having pain in my right leg, and have been hardly able to walk. Well, i doped up kinda heavy on pain killers and limped my way through Disneyland tonight for my Nieces first ever trip. My husband offered to rent a wheelchair for me, but I told him no (because i don't see any sense in spending money on something like that). Well, i pushed myself and pushed myself...and ended up in a wheelchair. But because a nurse had to be called and I was escorted out of the park by security since I couldn't walk anymore. I was so frickin embarrassed because I was surrounded by DL employees.
I should have just went along with my husbands plan.
Hi MamaMarshall, The pain that we have is hard to deal with at times !!! So just think about yourself and what you are feeling at that moment . People don't realize our pain or the affect that LUPUS has on us . Maybe the wheelchair would be a good ideal for so moments. Remember that is never to late to change your mind about his plan, take care and talk with you later...Beverly L.
Hi MamaM,
Though I do not have a full Lupus diagnosis, I do have 3 autoimmune diseases, the Primary is Psoriatic Arthritis, the type is Spondylitis, meaning it targets the spine. That does not mean it leaves the rest of my body alone.
My left knee, ankle and foot are also very bad, sometimes my foot is the size of a basketball! And there is joint damage and bone spurs. Sometimes I limp too, especially after grocery shopping or doing something and not sitting down or laying down for a while.
So sorry that you are going through this at such a young age. I hope that you are on a disease modifier. I know the Enbrel has helped me, though I wish it could do even more.
I hope you get some relief, keep on your Dr,
SK
I have the same kind of issue… My right side is worse than my left. My right hip locks up or is so stiff I cant move the pain is unbearable. My hands are the same. I wish you well. Sometimes our pride gets ahold of us so very tight we cant see our own pain needs addressed…even if it means a “crutch” to keep us mobile… Wheelchair are still mobile… 
Hope you have a great day…
Patches
Hay MamaMarshall, join the group , i've had LUPUS since Feb. 7,2010, and yes i've cut my hair off because to rais my arms to comb y hair was TOTALLY OUT the question . To manage what is good for yu just do what you can to satify you ...smile I also limp sometimes , but hay! i refuse to give up on me , so i walk it out and keep walking (fighting with me body in public is the part i don't like -LOL), i don't stop anymore to sit , my son always say , " mom it's okay rest for a moment " , i want to break down in tears everytime that is said to me , BUT i don't me and LUPUS fight in PUBLIC cause i KEEP Walking . AND when i get home , behind closed doors i pass out -LOL but i won and you can do the same , JUST MAKE YOURSELF stay as normal as you can and your body (hopefully ) won't let you down- eventhough LUPUS is strong at times .... Beverly L.