Restarting, and needing encouragement. Esp. from anyone familiar with Lupus and RA.

helaurin · May 2018

Last week, I was tentatively diagnosed as having both rheumatoid arthritis (RA) and systemic lupus erythematosus (SLE). The tentative diagnosis is based on physical symptoms that have been dragging on for a long time, and finally my doctor ordered blood work. The results are that I'm showing a very high inflammation level on the C-reactive protein (should be below 8, I'm above 20), positive markers for lupus and RA, etc.

My doctor suggested that a first-line approach is for me to eat better, start exercising, and lose weight. At the same time, I need to be careful not to aggravate old injuries (herniated and bulging discs in lower back, previous knee injuries, and I'm holding off surgery for a large bunion, because the surgeon said it would take a least a year to recover from the surgery).

So here I am, restarting again, and needing encouragement to work safely and smartly with my limitations.

I do have a YMCA membership and made it there last night, along with my pre-teen child. I'm really glad for her that she can do a lot more than me and in a shorter time, but I have to say it's a bit discouraging for me to be on a piece of cardio equipment (elliptical) for sixteen minutes, barely made it to a mile in distance, and for her to hop off a machine, run over to me and brag she already did 2+ miles, etc.

In total, last night I did the elliptical for 16 minutes with a distance of 1.16 miles and according to the machine, I burned 143 calories, and then went on a treadmill for another .41 miles and 43 calories. Between the two, I barely did 1.5 miles and 184 calories - and I've heard that one should really discount the calories that are claimed to be burned by cardio machines.

One study says that ellipticals over-estimate calories burned by an average of 42%. So that 143 calories I burned, I guess, was really 100 calories. Similarly, on the treadmill, what I'm reading is that if you use the handrails (which I do), to discount about 40% of the claimed calorie burn. So that 43 calories that the treadmill said I expended, was more like 26 calories. I kept my pace slow - just 2.0 mph - and I was starting to limp about 5 minutes in, but I pushed to make it to 12 minutes.

So I'm looking for encouragement, because I think it's going to be a long, slow haul, to try to get to a decent exercise level, working through the pain from inflammation, while working full-time, raising a child, etc.

mbaker566 · May 2018

it's going to be slow but worth it.
and go slow because you don't want to trigger a flare. it will build up.

also, not sure if you want to lose weight but exercise is not necessary. just a calorie deficit. so even on flare days you can do it

and do NOT compare yourself to anyone especially a child. comparison is the their of joy. you did great.

concordancia · May 2018

No matter the medical condition, we all need to start where we are, not where someone else is.

I am interested in the diet ideas. My husband is in more pain than his known medical issues indicate, so similar testing is the next step. He certainly does not need to lose weight, though.

helaurin · May 2018

Some of the diet changes are pretty basic - cut out, or limit as much as possible, processed foods, red meat, foods with salt, fried snack foods, cheese, creamy foods or foods with cream-based sauces, sugary foods, etc.

Instead, I'm to try to do more "clean" eating - fruits, vegetables, fish, yogurt, nuts.

Also, there's reason to believe there is a link to low levels of Vitamin D and lupus, and it turned up in my blood work that my Vitamin D level is deficient - so for now, I need to take supplements containing Vitamin D.

helaurin · May 2018

mbaker566 wrote: »

it's going to be slow but worth it.
and go slow because you don't want to trigger a flare. it will build up.

also, not sure if you want to lose weight but exercise is not necessary. just a calorie deficit. so even on flare days you can do it

and do NOT compare yourself to anyone especially a child. comparison is the their of joy. you did great.

Thanks! I do need to lose weight - while losing ANYTHING would be helpful, my doctor said ideally, I need to drop 60 pounds. Creating a deficit without exercise will be very difficult. I'm short and older, so with a mostly sedentary life activity level, consuming even about 1,570 calories a day is more than enough calories to keep me at my current weight (which is far too much). If I were to try to lose even a modest one pound a week strictly by calorie deficit, I'd have to keep my daily calorie intake below 1,100 calories a day.

And yes, I felt glad for my child, she did great. It's just really hard to muster the proper response to her rattling off her accomplishments on the machines while I'm still huffing, puffing, gritting my teeth from pain and trying not to fall off the machine I'm on - while still trying to smile, congratulate and encourage her to do more if she wants.

2aycocks · May 2018

helaurin wrote: »

Last week, I was tentatively diagnosed as having both rheumatoid arthritis (RA) and systemic lupus erythematosus (SLE). The tentative diagnosis is based on physical symptoms that have been dragging on for a long time, and finally my doctor ordered blood work. The results are that I'm showing a very high inflammation level on the C-reactive protein (should be below 8, I'm above 20), positive markers for lupus and RA, etc.

My doctor suggested that a first-line approach is for me to eat better, start exercising, and lose weight. At the same time, I need to be careful not to aggravate old injuries (herniated and bulging discs in lower back, previous knee injuries, and I'm holding off surgery for a large bunion, because the surgeon said it would take a least a year to recover from the surgery).

So here I am, restarting again, and needing encouragement to work safely and smartly with my limitations.

I do have a YMCA membership and made it there last night, along with my pre-teen child. I'm really glad for her that she can do a lot more than me and in a shorter time, but I have to say it's a bit discouraging for me to be on a piece of cardio equipment (elliptical) for sixteen minutes, barely made it to a mile in distance, and for her to hop off a machine, run over to me and brag she already did 2+ miles, etc.

In total, last night I did the elliptical for 16 minutes with a distance of 1.16 miles and according to the machine, I burned 143 calories, and then went on a treadmill for another .41 miles and 43 calories. Between the two, I barely did 1.5 miles and 184 calories - and I've heard that one should really discount the calories that are claimed to be burned by cardio machines.

One study says that ellipticals over-estimate calories burned by an average of 42%. So that 143 calories I burned, I guess, was really 100 calories. Similarly, on the treadmill, what I'm reading is that if you use the handrails (which I do), to discount about 40% of the claimed calorie burn. So that 43 calories that the treadmill said I expended, was more like 26 calories. I kept my pace slow - just 2.0 mph - and I was starting to limp about 5 minutes in, but I pushed to make it to 12 minutes.

So I'm looking for encouragement, because I think it's going to be a long, slow haul, to try to get to a decent exercise level, working through the pain from inflammation, while working full-time, raising a child, etc.

I also have Lupus and RA. I was diagnosed about 14 years ago. Would be happy to friend you, answer questions, chat, and offer support. That's not me in the profile. Im a woman. Just send a friend request and I'll be happy to help you all I can.

MaryLabs80 · May 2018

My mother suffered from RA, i did a paper on this when i took nutrition class, eating right and learning trigger foods could be very helpful, "night shade" foods, milk.. all can induce inflammation, do some research, wishing you the best luck for this hard journey

MaggieACBDEF · November 2018

I have Lupus, RA, & OA. On prednisone for 2 years.

I'm not big on blogs and online community. I don't even have a facebook account.
Because I know first hand how my life was turned upside down, I'll try to share how I was able to getting to a normal lifestyle again.

Yes, it will affect the kids. be honest with them they are stronger than we think.

you're on the right track, watch your intake and adding exercise. Also not keeping it a secret take the load off.
see you got some good advise Mary stated, know what triggers are a must, the warning signs.

I Read all the materials, research, blah, blah.
Our bodies are different and we need to get to know IT again.
I stopped with all the special diet and try to stay with regular dieting. Basically moderation.
However if you can follow the diets, feel free to continue but do not over do it. I do know a friend that went overboard with following the Lupus dos and don'ts and went causing more internal damages.

My best investment was a fit bit. I started with 2K, then increase to 5K, now my norms is 10K DAILY.
I do gym 1-2 times per week, My routine is water aerobic for 45 min, treadmill for 30 min, machines 30 min. The pool helps with the pain and don't have to worry about injury. Sauna really helps.

try to do some lite weight, it helps the muscles, which is what Lupus attacks. when you muscles ache, it will make you disabled. this is a must do.

I'm proud of myself. I see my doctor every 6 months, just for my refills.

I changed Meds and gained about 30 pounds. I need to loose that extra weight.
here I am going on a weight loss diet.

being on steroid means I have to do double the efforts to loose a pound.

we can help each other.

Stay strong,

Restarting, and needing encouragement. Esp. from anyone familiar with Lupus and RA.

Replies

Categories