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Old 05-03-2005, 10:32 AM   #1
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Back pain with Lupus??

Does anyone experience either upper or lower back pain with Lupus?? Is this condition just confined to the joints?

 
Old 05-03-2005, 11:13 AM   #2
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Re: Back pain with Lupus??

back pain could mean lupus and osteoporosis. Do a bone density test.

 
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Old 05-03-2005, 12:45 PM   #3
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Re: Back pain with Lupus??

Hi, mrsb23. I had a lot of lower back pain, with muscle spasms. Also sciatica. (Had many other things going on also.) Both improved tremendously after I started Plaquenil and started sun protective measures.

I can't swear that these were related to inflammatory activitity. But for sure, they did abate a whole lot with medication, as did the better known (and evil ) joint pain & mild swelling.

For what this is worth.... Sincerely, Vee (Iwantacure sugegsts bone density test. I agree it cannot hurt, esp. if you are at risk for osteoporosis for any number of reasons. My lumbar area is lousy, so I've been on Fosamax for 5 years now. But I can't say what for sure caused the thinning, maybe just simple genetics? No way I can know for sure...)

 
Old 05-05-2005, 06:36 AM   #4
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Re: Back pain with Lupus??

Yes, yes, yes! I am only 33, but have had bad lower back pain for years. Sometimes it's just a dull ache, but often it gets to be sharp, pinching pains. This can extend around into my hips as well. Anytime I have been sitting in one position for a period of time, I seem to stiffen up and getting up can be slow and painful. You should see me getting up to leave the theatre after a movie! Ouch!

mrsb23, it sounds like we have a lot in common. I just responded to your post about itching as well!

Take care,

Larissa

 
Old 05-06-2005, 06:01 AM   #5
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Re: Back pain with Lupus??

Larissa, you sound just like me. I have been getting what I call "plyboard syndrome" for many years. That is why I stay home so much. I can get up every half hour or so and stretch or move. Long trips are agonizing when I we stop and I first get up. We joke that when I die they are going to have to use that liver temp. test to find out exactly when because rigor begins to set in on me as soon as I am still for even a little bit of time.

As to the back pain, I have had it for a very long time. These days Dr.s tell me it is all the weight I gained with the thyroid problems and menopause. Of course they just look at me with disbelief when I remind them I have complained of pain in my shoulders, back, hips, knees, and deep leg muscles for many, many years. I know it was there before the thyroid and mid life change because I have copies of my records and each Dr. visit there is a notation of the complaint. Dr.s could find no cause so they just dismissed it.

Just in case you don't know my story, I have Hashimoto's Thyroiditis, minor osteo arthritis of the knees, Scarring Discoid Lupus with Mixed Connective Tissue Disease asst. with Lupus. Isn't that last one a mouth full though. My lower back, hips, thighs and knees are painful always. My upper back, neck, shoulders, calves and ankles ache always. I know that sounds depressing but it really could be worse.

May God Bless and Keep Us All
Patience 50

 
Old 05-06-2005, 08:07 PM   #6
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Re: Back pain with Lupus??

Dear Patience,

I've been told the same thing about weight gain (and I have gained weight in the past few years), but the same as you, I have had back problems for a long time, way back to when I was in college and my weight was fine! While I know that extra pounds don't help, it still doesn't explain the awful pain in my hips and pelvic joint areas.

As well as sitting for long periods of time etc, standing for any period of time is also a pain. Standing in line for things really stinks. When I got my flu shot in the fall, I stood in line for over 2 hours and thought my lower back was just going to completely shatter right there.

Do you have anything that you do that helps with this kind of pain? When it is really hurting me, sometimes bending forward into a ball or sitting on the bed and leaning over will help relieve some of the tension (at least until I sit up again), but that's about it.

Take care,

Larissa

 
Old 05-07-2005, 05:42 AM   #7
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Re: Back pain with Lupus??

Hi Larissa,

I do the things you mentioned. The Dr.s say I need to do stretching and strengthing exercises. When it is bothering me I should sit on the edge of a chair, any chair, put my feet flat on the floor and shoulder length apart, then stretch straight out and down as far as I can. I'm to hold this position until I feel it has been stretched good. Sit back up, take some deep breaths, and do it all over again. At first they had me doing this every half hour all day. My muscles were very stiff and weak. Then it was 3 to 5 times each hour and then 6 repitions three times a day. I should begin the routine again too. I can feel that I don't have the range of motion that I had when I was being faithful to the exercises.

The Dr.s also recommended leg lifts. I do these while lying on the bed. Point the toe as far as you can towards the knee and lift slowly. When you have gone as high as you can, hold it for 10 seconds then let it down slowly. This is to help build the muscles in legs and bums to help support the back muscles.

Another one is to lay in bed, loop a scarf or long piece of fabric around the heel of you foot. Point your toes to the ceiling and lift the leg pulling it as hard to the chest as you can without pain. You will feel this one stretching muscles all the way up your back to you shoulder blade.

Do sit-ups, again in bed. Just pull up as far as you can and hold as long as you can. It doesn't matter if your feet come off the bed but don't strain. This is to build stomach muscles that also support the back. Remember I'm heavy and I could do this.

The last one is to sit in a kitchen chair, put one foot on a chair in front of you. Again point your toe towards you knee and then reach for the toes. Hold the stretch as long as you can without straining, release the toe and slowly sit straight again. The reason to point the toe towards the knee is to stretch the ham string.

My Chiropractor, my Rheumatologist, and my Physical Therapist gave me these to do at home. There were other things in PT like using an exercise band tied around the knees and then push the knees apart to stretch the inside thigh muscles. Of couse walking when you can is always mentioned.

The Rheumy told me that people with connective tissue issues must be diligent about the stretching or the muscles will go away quickly. The stretching tones and builds the muscle in a gentle way so as not to tare the tissue and cause more damage. He sent me to his facility rather than a sports medicine facility because he said some sports medicine physical therapists and personal trainors at some gyms will push too hard and cause taring and futher damage and his people were specifically trained to treat soft muscle tissue disease and damage. Of course it is also his facility.

I can tell you without a doubt these things helped and helped quickly. Probably because I was doing them so often every day. He said the best way to regain and tone muscles is thorough stretching as often as you can, gentle repitition.

Much of my severe back pain was because my back muscles had gotten so weak that 3 discs were bulging. I sought a chiropractor because I was reluctant to have surgery. The discs caused much severe pain in back, over both hips, pelvis area, and down legs. One leg went almost numb. It was a year and a half later that I was diagnosed with Lupus and connective tissue problems. The thyroid problem also causes sore stiff muscles so the stretching helped all around in a very gentle fashion.

I hope this these instructions are complete enough for you to give them a try. I had papers with pictures from all the Dr.s. I am convinced that this is the best way to help because all the Dr.s gave me the same exercises to do and all of them said walk. Now that my legs have gotten so bad the Rheumy says to only walk 10 to 15 min at a time, 3 or 4 times a day. He has stressed how important it is to stay as mobile as I can but some days!!!

Please let me know if these help you. I did them very diligently at first and felt a difference in just a week to 10 days. Not so much strength at first as noticably less pain. The strength came later though, until I had another flare. Your post made me dig out all the exercises and start them again. Perhaps those of us with connective tissue issues need to do them all the time, not just when we have a flare or pain. Good luck.

May God Bless and Keep Us All
Patience 50

 
Old 05-07-2005, 07:24 AM   #8
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Re: Back pain with Lupus??

Hi, Larissa (& Patience, too!).

I gave up high-impact exercise 10 years ago. Hurt too much, even yoga (all those awful "down dogs"). I decided I HAD to move again: back pain & stiffness demanded it. So I--
(1) got rheumie's OK to try anything (he agreed I oughta)
(2) started with walking & built up duration. Good walking shoes a plus.
(3) then started, v. slowly, floor Pilates to build up abdominal muscles, hoping back would improve. It has a lot, but I think Plaquenil also a factor.

I think the thing with any of this is to start *slowly*, with something your dr. & you both agree will help, not harm.

Patience, I know you garden a lot. Maybe you need some gentle movements that counteract your gardening postures? I crumpled & nearly passed out one summer when I felt & actually HEARD discs crunching in my back while gardening. Screaming pain. Thought life as I knew it was OVER.

To me the next MAIN thing is, do NOT get discouraged. I couldn't do any of the exercises I now do properly at first, not even one lousy one, let alone repetitions. I had to steel myself to be bad at it for awhile & laugh at my klutziness. But, I ask, who really CARES how bad we are when we start? Will we bring the world to a grinding halt with our efforts? I think NOT...!

I see my dad & now his younger brother going down, in very old age, to Parkinson's. I just know I'll be furious if I don't move about NOW, while I can. I've lost too many days to health problems already. It's a precious gift, just being able to try, no matter how basic &/or how briefly I manage each day.

Maybe all this rain will help Patience's garden? With my best-est wishes, Vee

 
Old 05-07-2005, 10:18 AM   #9
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Re: Back pain with Lupus??

Hi VeeJ,

I saw on the weather we are to get some rain tomorrow. Today it is gloriously sunny and breezy. A perfect day. The 4 little girls are planting the hanging baskets now. I did some in the flower beds earlier and I'll do more in a while. As with everything, I am only able to work 15 to 20 minutes before my legs just won't hold me anymore. If we keep at it most of the afternoon we should get most, if not all in the ground in time for a good soaking.

As I said, all of me seems pretty OK except for the legs. It seems no amount of any kind of exercise is bringing them back. I walk almost every morning and evening around the neighborhood, actually hobble and limp are more like it. When the weather is bad I use the treadmill. I'm getting a work out just getting up and down for meals, snacks, and drinks last night and this morning. I have put the 12 and 10 year olds in charge of the basket and urn planting. When they are finished I will go out and hang them all up. For now I'm taking a deep breath and checking e-mail.

They are such good children it is such a joy to have them. I just wish I could do more. We used to take ours kids hiking and camping. Legs just won't allow that stuff anymore. Of course, pain anywhere makes activity difficult. I should not complain so much; I could have things much worse.

I am looking forward to the rain for the new plantings but not for my legs. I can take it easy tomorrow. All the children go home at 2PM. I'm sure the soreness will be worth the effort in memories for the kids if nothing else. I know I have many memories of being in my Grandma's garden. I hope they will have the same when they are grown.

Have a good weekend VeeJ. Hope the rain doesn't have you hurting too much.

May God Bless and Keep Us All
Patience 50

 
Old 05-10-2005, 11:11 AM   #10
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Re: Back pain with Lupus??

GO GET A BONE SCAN!!!!! I just got diagnosed with osteoporosis and i am twenty and have only been on steroids for a year!!! Only 10mg too- didn't know they could do damage so quickly. Get checked!!

 
Old 05-10-2005, 11:58 AM   #11
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Re: Back pain with Lupus??

Great idea for most who haven't had one done. I had one just 7 months ago and have very dense bones. My bone density was higher than the line for 18 to 25 year olds. I have bone density scans done every two years because I have been on synthroid for many years and that can cause bone loss over time. My pain is from degeneration of the connective muscle tissue that holds the joints together. MRI and scans have confirmed this.

For those who have bone and joint pain that is undiagnosed and you have not had a bone scan, oeee is correct, you should get one.

May God Bless and Keep Us All
Patience 50

 
Old 05-10-2005, 01:00 PM   #12
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Re: Back pain with Lupus??

Is anyone on Fosomax to built bones back? I am - supposed to take 1 day per week, immediately on rising, with p0lenty of water, then stay vertical for an hour before eating.

Using I wake up and need to eat immediately to have the energy to stay up, so this is a bit of a problem for me.

Joint pain is such fun.......(not)
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Old 05-10-2005, 02:14 PM   #13
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Re: Back pain with Lupus??

Dear Lupus-n-Sjogren,

I've taken Fosamax for 2-3 years now (I think, can't quite remember). It has improved 2 of 3 of the areas they test during density tests.

I shower, wash & blow-dry my hair, do a facial moisturizing mask, do laundry, etc. after taking my weekly dose---all standing activities.

And I time the coffee to be ready just as my wait period is up.

Take good care! from Vee

 
Old 05-11-2005, 11:18 AM   #14
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Re: Back pain with Lupus??

I've already told people who have lupus that prednisone will make you osteoporosis.

 
Old 05-12-2005, 07:05 AM   #15
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Re: Back pain with Lupus??

Vee -
Thanks, you've provided that extra little bit of motivation, that means, at least for today, that I will take that silly pill. It's a bit under 70 degrees here, sunny, and still feels like early morning, so I will take a short walk while letting the pill dissolve.
Thanks again!
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