Lupus or other Chronic Condition! Anyone???

lovebeinGIGI
lovebeinGIGI Posts: 72 Member
edited September 30 in Motivation and Support
I'm wondering if there are others here that suffer from a chronic physical condition that limits their physical activity in efforts to lose weight?? (i.e. Lupus, fibromyalgia, arthritis, MS ect...)

If so, what are you doing to help with your weight loss?

I have Lupus (and possibly fibromyalgia according to my dr) and a normal day for me is waking up even after 8 to 10 hrs of sleep feeling fatigued with joint and muslce aches. It's like waking up with flu-like symptoms every morning. Many mornings, I have to get up about 4am and take a pain pill and go back to sleep. This helps me to get up at 7am without pain. Headaches are also a major problem for me and if you've ever tried to exercise with a headache, you know what I mean!!

My weight loss over these past 2 years has been through dieting only!! NO exercise! Somehow, I've managed to maintain my lean muscle and according to my body fat calculations of 27% at 172#, I still carry 127# of lean muscle. This is the result of some weight lifting and heavy training I was able to do in my early 20's (my ex was/is a huge body builder). It wasn't until my late 20's the lupus symptoms came on. After my first child in 1994, I would walk nearly every day for nearly an hour. I remember doing this for a couple of months waiting on the "burst of energy" everyone says you get from exercise but it never came. I NEVER felt more energized from exercise...EVER!! I even went to the Dr for it. She blew it off and said I was a working mom and just wouldn't have the engergy I use to when I was younger. Uhhh...hello...I was only 24!! Little did we know what was to come in the following years!

In the past few years, I HAVE tried to exercise again, even just a walk, only to end up having to sit in a tub of warm water and epsom salt to be able to feel good enough to go to sleep or I wake up feeling worse than I felt before I tried to "exercise". Yes, I've tried to do water exercise and it was okay. As long as I sat in the hot tub afterwards before going home. And still, sometimes I would waking up limping with hip, knee and ankle pains.

My frustration right now with my weight loss, I'm at a bit of a plateau. I've gotten to a range of 171.8 to 173, but can't seem to break that lower number. I've changed up my eating, calories, times I eat my big meal...everything I can think of. I know most would say to change up exercise or add it, but I know my body and how it will react...it wouldn't be a good thing...UNFORTUNATELY!!

So I'm wondering if there are others out there with the same problem. Whether it be because they've simply hit a plateau or they also suffer from a chronic physical condition that limits physical activity.

Maybe I've hit the point my body doesn't want to lose more weight?!?

Replies

  • wanttogetskinny
    wanttogetskinny Posts: 194
    I do not have lupus, fibromyalgia, MS, or anything like that. (Though I certainly understand the limitations caused by such conditions - I have MS and fibromyalgia in my family).

    However, I have a complication of diabetes called diabetic retinopathy....essentially the small blood vessels in my retinas hemorrhage and bleed. This hemorrhaging is usually kick-started by strenuous exercise - and sometimes by nothing at all. I've been trying to avoid strenuous exercise simply because....well, I already had invasive surgery on one eye and don't want it on the other. Also, during a flare up it's extremely difficult to see.

    This means NO running (or jogging), NO lifting nothing more than 15lbs, and minimal/no 'high impact' sports/activities.

    I typically walk or swim for exercise. Occasionally I will spend some time on a bike, but that too is something I can't do long or it can cause a retinal hemorrhage.
  • IndigoVA
    IndigoVA Posts: 164 Member
    I don't have it myself, but my mother does. She actually has lupus, antiphospholipid syndome, Sjogren's syndrome, Hashimoto's, and 3 other more minor autoimmune problems. Have you been tested for antiphospholipid syndrome for the headaches? My mom had them for decades before she was diagnosed. After diagnosis, they put her on blood thinners and her headaches are now gone. Do you take prednisone? From what I can tell, that seems to be a double edged sword. It takes the pain away to allow you to exercise, but it also makes you gain weight. My mom, who luckily is naturally pretty thin, just tries to exercise as much as she can on her good days to make up for her bad ones. For her it's not about losing weight so much as just staying active to keep up with her grandkids.
  • dittiepe
    dittiepe Posts: 557 Member
    Yes Yes YES! I have rheumatoid arthritis and get severe fatigue and pain with it. Every day I am exhausted. No matter what I do, I don't get any burst of energy. The medication I take doesn't help either.
    I know exactly how you feel :)
    The best thing I can tell you is to push through the fatigue and the pain as best you can. If you can do water exercises, do those as they are better for those of us with these types of illnesses. Sadly, the fatigue won't go away unless you're in remission (something I've yet to have, personally).

    Also, I have learned to eat a lot of green veggies as they are helpful with inflammation.
  • bjshooter
    bjshooter Posts: 1,174 Member
    I have ME and possible POTS, just waiting to be diagnosed with that one. I exercise everyday, eve if I feel rubbish. i find it wakes me up, makes me ache less and gives me more energy. Eating right is also helping loads.
  • Getnailedbymel
    Getnailedbymel Posts: 7 Member
    Hi there, So I have lupus as well I have discoid but they say it can also mimick some of the systemic. Im assuming you have systemic? I have cronic lack of energy and im extremly tired all the time. My body aches more and more but nowhere near as much as a person with systemic. I to fight with the weigght loss. I just got up this morning and hit the scale and gained a lb could be water I did eat BBq with the family last night. I do the elipt everyday at 3:45 am b4 work for 30 min sometimes I do HIIT on it then I might add 20 min of hula hooping later in the day. Do what works for you, if it means getting up a few min early like myself then do it. It will also help with the mental aspect of the lupus and so forth it will also aid in the pain you feel. It is not an easy road I to was diagnosed after the birth of my third child. I was told not to have any more kids then an ooppsss and I was blessed with number 4. Sometimes I to wonder if it is the reason I am not loosing weight. I loose when im extremly stressed but I dont loose when I eat healty and work out, I dont get it. I hope things turn out for you =). Keep me posted and stay in touch Id like someone to motivate me and share my trials with. Take care.
  • Getnailedbymel
    Getnailedbymel Posts: 7 Member
    I might add ive been at this for like three weeks straight and have not lost a pound. UUGGGG
  • Tlco
    Tlco Posts: 1
    I have RA
  • dhwatts
    dhwatts Posts: 32
    I don't have lupus, but I do have Sarcoidosis,Diabetes, and fibromyalgia. I understand how you feel. I went to the doctor because I started having lumps all over my arms (Sarcoid Granulomas) and just like you, I could sleep all night and was still totally exhausted during the day. I would go to work and come home and crash on the couch! Right now I am on Methotrexate, Plaquenil, and 20mg of prednisone a day. It is so hard to lose weight especially with all that prednisone! I am also diabetic, so it is really good for me to try to eat healthy to keep my sugars down. I don't exercise a lot, but I try to do a little each day. I am working with a Health Coach from my insurance company (it is a program offered thru my husband's work) It forces me to stay committed to this weight loss program because it gives us a discount on our insurance. The health coach (who is a nurse) told me to do at least 30 minutes of exercise ,three times a week. She also said if I had trouble doing that, to break it up into two fifteen minutes sessions or even three ten minute sessions. The goal is to gain more stamina and eventually be able to do a little more each time. Sarcoidosis also affects my lungs, so after ten or fifteen minutes, I am very short of breath. All I can do is keep on trying! Good luck to you, hope you continue to improve.
  • missionmanshane
    missionmanshane Posts: 21 Member
    I have septic (caused by infection) arthritis from toxic mold after Hurricane Katrina. I had to do what you are doing at first.

    First, I got my symptoms managed to some degree by anti-mold treatments for my lungs and joints. Once my pain was no longer requiring me to be on 14 prescriptions, use a walker, or park handicapped, I began noticing how fat I had gotten over the years and wanted to do something about it.

    Second, I lost some weight, which took a little pressure off my joints. (283 to 266) I did this by counting calories and hardly any exercise at first. I began to feel (a bit) better and hurt (a little) less when I exercised.

    Then I began "no to low" impact exercises. Water exercises, gazelle (that wierd machine from Tony Little), and eventually pushups and sit-ups. I even did the girl push-ups for a while. (A tough choice for a former football player! haha) Hot salt baths, extra rest, foot baths, then at it again. Don't quit!!

    After a while, I began recovering more quickly and achieving more results. Remember, pain is not the same as injury. Don't injur yourself, but don't fear aches and pains.

    I have not achieved success here, but I am getting closer. I now work out at a gym, walk with my family, sometimes jump on the trampoline with my kids, occasionally do the Jillian DVD with my wife, never use my handicap parking decal, and never ever ever ride the electric scooter at Target anymore!

    Keep pushing!
  • daffysbird
    daffysbird Posts: 42
    I have a heart condition called Epsteins Anomly, this is a Congenital Heart Disease, it is also complicated by an ASD (Hole in the heart) I need to lose weight so that I can have an operation.

    But I feel your pain and frustration. Due to my condition my blood does not circulate around my body properly. This then causes me to have a lot of pain in my joints and legs and lower back especially. Some days even getting out of bed is difficult.

    I lost 35lb by doing small amounts of exercise and eating healthy. I seem to of reached a plateau now where I have been hovering around the same weight for nearly two months now.

    Unfortunately, in the past few months my condition has deteriorated and my pain has increased. So I am stuck on this viscous circle of, I need to lose weight to have the operation that will help my condition and lessen my pain, but I am in so much pain that I struggle to exercise and therefore struggle even more to lose the weight.

    I am joining slimming world on Tuesday and hoping that this helps me break out of my slump but we'll see.

    To add to all this I am getting married in March and want to look my best for the day ahead.

    So i definitely sense your frustration and I regularly feel like screaming AAAAAAAAAARRRRRRRRGGGGGGGGGGHHHHHHH!

    Good Luck
  • jetsec
    jetsec Posts: 79
    I have mixed connective tissue disease, I take a wonderful mix of tablets every day including steroids and have just been diagnosed with high blood pressure too. I'm another who struggles with lack of energy and joint pain but I've found swimming really good and this time the steroids are stopping me from losing weight, albeit I'm doing it slowly.

    Keep at it hun, you will get there and (((hugs))) for the painful journey.

    Jayne
  • dragonfly1120
    dragonfly1120 Posts: 29 Member
    I have fibromyalgia, myofascial pain syndrome, mitral valve prolapse, and asthma on top. My energy levels most of the time are low. I have found my stamina has been horrible lately and the heat/ humidity do me in every time. For several years I was on the pain meds, antiinflammatory, and antidepressants along with birth control. I felt puffy and yucky is the only way I can describe it. I was sick and tired of being sick and tired. I decided to go off all my meds, gradually of course. (I'm not suggesting anyone go off their meds without consulting their doctor first. That was something I felt I needed to do to cleanse myself) I listen to my body. When I feel I need 12 hours of sleep, that's what I do. If I need a nap during the day, I nap. I don't push it. If I don't rest when my body says to rest I get into a "fibrofog' and can't think straight. During my energetic days, I do what I can and exercise "when the spirit moves me".

    I've only been with MFP for a little over 2 weeks now, but have noticed my energy level is a little more. I've lost 5 pounds by counting calories and trying to do at least 60 minutes of exercise a week (which is a lot more than I did before). I hope to increase as my body gets stronger and healthier. For now, that's what I can do. I have more good days than bad. I've been trying to exercise...using the Wii Fit and Wii Sports. Going outside in this heat will just give me migraines. Water exercise is really good too. You have less strain and fatigue. Just using the noodles and pressing up and down in the water is very effective.

    I totally feel for you. Don't give up. Do what you can, listen to your body and keep at it. Sounds like a lot of us are in the same boat. I'm so thankful to be able to read the posts on here. It's really encouraging.
  • themommie
    themommie Posts: 5,033 Member
    I can so relate. I have fibromyalgia, chronic fatigue syndrome and hypothyroidism. I try to do water exercise, and walking. I started out just doing 10 mins at a time a couple times a day and have worked up to be able to do more. But it depends on the day. I know if I push myself too much I will end up in bed for a few days. it is hard but i find I feel alot better since I have lost weight, started eating healthy and exercising. Just do what you can and dont give up, We will get there it just may take us longer......
  • lovebeinGIGI
    lovebeinGIGI Posts: 72 Member
    Thank all so much for the input!! I truly appreciate it!
    God Bless you all and I will remember you in my prayers!!

    Hugs,
    Paula
  • MrsAbbott18
    MrsAbbott18 Posts: 12
    I am 21 years old and have Pre-Systemic Lupus & RA. I have the same issues as most with this problem. I am tired ALOT and sore all over most of the time. Sometimes I can wake up in the morning and hit the floor at running speed, but other times it takes me 20 minutes to get out of bed. I wake up several times in the night.. tossing and turning is normal for me. Most of the time when I go to the gym I take an Aleve to help with the soreness. If I'm hurting too bad I can't make myself go.. I just try to eat extra healthy during the day. I'm praying for you all with autoimmune issues!! God Bless!
  • michelledusik
    michelledusik Posts: 63 Member
    I was diagnosed with Systemic Lupus and Sjogren's Syndrome 2 years ago and since I began taking medication daily it has really helped with the pain and inflammation. HOWEVER, I still am very tired all the time. I swear I could sleep 12 hours a day and still not feel rested. I find that some days it's easier than others to workout. I don't want to use this diagnosis as an excuse. How do you guys get over the feeling of exhaustion and fatigue??
  • 1213shell
    1213shell Posts: 37 Member
    I was diagnosed with Rheumatoid Arthritis almost 2 years ago. The first year was spent diagnosing and getting my meds correct to control the symptoms -- it was also spent feeling sorry for myself and in constant fatigue. This second year has been spent changing my diet and exercise. I recently had my quarterly check up; my rheumi said my labs came back in excellent shape -- inflammation levels are down to 12 and my blood count looked so good she reduced my meds dosage. I do still wake up with stiffness but no where near the shape I was in. I have started running but I realize too much strenuous running is not helpful to my joints so, training for an Ironman is out of the question : )

    Watch your diet and exercise -- you may have to push yourself on some days but pushing through it helps you see the light at the end....
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