Please Scroll Down to See Forums Below My wife has lupus. It's not very bad but, she does get tired very easily and can't go out in the sun. She has the normal aches and pains associated with lupus and fibromyalgia (sp?). What I wanted to know (if anyone knows anything about lupus) is if she should consider some mild weight training? She does go to a physical therapist but they treat her like glass. They're afraid she's going to break. They tell her she shouldn't clean the house and wash her car and stuff like that. They have her doing curls with soup cans and I know going through the motions is good, but I think she would benefit more with a higher weight/lower rep routine every once a while when she is able. Now I'm not trying to kill her. I mean a very mild routine but still increasing in weight every so often. I've read that people with lupus need to exercise. I just think her therapist is not challenging her enough.
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lupus question
- Thread starter tbod1
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I don't have lupus, but I DO have fibromyalgia.
As far as normal activities like car washing and housework, there's a problem with treating someone with FMS like glass. Quite honestly, I've found that I'll get those aches and pains whether I overdo it or not. So, it makes no sense for me to worry about the consequences of hard physical work. Somedays I'll feel like shit and someday's I feel like Wonder Woman - and it DOESN'T matter what I did the day before. So, worrying about it doesn't make sense. I just try to enjoy myself and get on with life. If I worry about it, I find I just miss out on a lot of fun, or in getting things done. I DON'T try to do stuff like clean my car or work out when I feel bad, but when I feel good I just try to enjoy myself. If I neglect stuff like the housework - I feel worse. It depresses me and that increases the pain.
However, if your wife DOES find that working too hard makes her feel worse the next day, then she shouldn't try to press on.
People with FMS symptoms produce too much lactic acid, and it doesn't get processed out like it does in a normal person, so they can get pretty hard hit by post work out pain. Yes - blood thinners can help, as well as systemic detoxing and circulatory agents.
The first thing she needs is a good nutritional program and one based on high protein, and infrequent carb feedings. This will reduce lethargy and any "brain fog", as well as help battle any excess weight gain. FMS patients tend to gain weight easily due to activity restriction, reduced cellular metabolism, haywire hormone levels, as well as occasional depression that leads to self-pity carb loading. (Depression is symptomatic and exacerbated by pain or weariness - don't take it personally, but don't treat it with anti-depressants unless NECESSARY. Better to treat it nutritionally and socially. AD's can be self-defeating in FMS and lead to further weight gain, further lethargy, and acceptance of the "disease mindset". This is just my personal experience, and not the advice of a doctor, but as a very active member of the internet FMS community, plus my own experience with AD's - I would be very suspicious of the use of AD's for FMS, CFS or like diseases).
People with FMS can benefit from nutritional supplementation, too. Helpful sups that I have used in the past in order of helpfulness is bromelain (reduces fibrin buildup on the cell walls in the blood vessels aiding cellular metabolism), selenium (improves glutithione production) and B complex vitamins, especially B12. Choline is also said to improve concentration. (I haven't tried that myself yet.)
The second thing she needs is a good blood workup to test her thyroid function. Not just a TSH test - but a T3/T4 workup. She may need T3 supplementation or just more iodine in her diet. I use transdermal iodine and it's great for improving body temperature, circulation and energy levels.
The third thing she needs is EFA's in the form of fish oils, to improve brain function and it's effect on the endocrine system.
The fourth thing is testing for estrogen dominance - she may benefit from transdermal progesterone supplementation. This can take a while to get used to, so do your research before diving in and spreading it on. Takes a couple of months to take effect and get used to. Think carefully and research carefully before adding progesterone and then commit to using it for at least 6 months before judging it's effectness.
Pregnenolone is said by some to improve life quality for sufferers of FMS/CFS & like diseases. It's a precursor for DHEA, progesterone and testosterone and can combat excess cortisol levels. Cortisol can cause muscle wasting and pain. The EFA's I mentioned above are good for providing insulation in the brain against stress and aggravation. The use of EFA supplementation buffers the brain against the stress reactions that cause the adrenals to create cortisol.
Aerobic exercise is good for improving oxygenation to the cells, but needs to be balanced with enough CO2 to dilate the blood vessels so the oxygen can be utilized. Many people with FMS have low CO2 levels. There are breathing techniques (like the Buyteko method and the BodyFlex method) that improve CO2/oxygen levels. Look it up on the net. The only way I can work out without rebound pain is to perform these breathing techniques right afterwards. Otherwise, I can often end up bedridden. It stimulates the lymph system, and helps clear the lactic acid out. VERY important.
As far as lifting weights - and you may or may NOT like this answer. People with FMS/CFS need to CAREFULLY budget their energy. It's that simple. I often find myself having to chose carefully whether I will clean house or exercise. Whether I will shop or make dinner, etc. You mind find yourself doing more of the housework than you are used to, and if you want your wife to get well, you might just have to. At this point, she only has so much energy to work with before she will need to rest. If you can afford it, have as much daily drudgery performed by others as you can. Pick up roast chickens and premade salads. Have someone come in and do the heavy cleaning. Wash and fill up her car for her. This will give her more time and energy to either rest or exercise. Both are necessary.
Massage helps as it is not only relaxing, but helps clean out toxins and wastes from the cells. If you can afford it, let her get a good professional massage once a week. Or do it yourself. Lymphatic massage is also incredibly helpful. This can be done by a pro, or she can learn to do dry skin brushing.
She may need extra sleep. People with FMS do not get enough deep level sleep, which is the sleep that is required to produce the chemicals that lessen pain senstivity.
Only your wife really knows what's too much and she's going to have to find out by experimentation. With the right nutrition, enough sleep, correct breathing, less stress and less drudgery, she will find she has more energy for more positive activity - like working out. As far as upping the weight and building muscle, the above items NEED to be addressed first. People with FMS have a hard time building muscle and overworking the muscle will only lead to pain, increased cortisol and muscle wasting and misery. Address nutrition, breathing, rest, and stress before attempting to lift heavy weights, or you're just doing more harm than good.
I admit that I'm not as familiar with lupus, or it's course. But I've found the above things help immensely with FMS.
Fawn
As far as normal activities like car washing and housework, there's a problem with treating someone with FMS like glass. Quite honestly, I've found that I'll get those aches and pains whether I overdo it or not. So, it makes no sense for me to worry about the consequences of hard physical work. Somedays I'll feel like shit and someday's I feel like Wonder Woman - and it DOESN'T matter what I did the day before. So, worrying about it doesn't make sense. I just try to enjoy myself and get on with life. If I worry about it, I find I just miss out on a lot of fun, or in getting things done. I DON'T try to do stuff like clean my car or work out when I feel bad, but when I feel good I just try to enjoy myself. If I neglect stuff like the housework - I feel worse. It depresses me and that increases the pain.
However, if your wife DOES find that working too hard makes her feel worse the next day, then she shouldn't try to press on.
People with FMS symptoms produce too much lactic acid, and it doesn't get processed out like it does in a normal person, so they can get pretty hard hit by post work out pain. Yes - blood thinners can help, as well as systemic detoxing and circulatory agents.
The first thing she needs is a good nutritional program and one based on high protein, and infrequent carb feedings. This will reduce lethargy and any "brain fog", as well as help battle any excess weight gain. FMS patients tend to gain weight easily due to activity restriction, reduced cellular metabolism, haywire hormone levels, as well as occasional depression that leads to self-pity carb loading. (Depression is symptomatic and exacerbated by pain or weariness - don't take it personally, but don't treat it with anti-depressants unless NECESSARY. Better to treat it nutritionally and socially. AD's can be self-defeating in FMS and lead to further weight gain, further lethargy, and acceptance of the "disease mindset". This is just my personal experience, and not the advice of a doctor, but as a very active member of the internet FMS community, plus my own experience with AD's - I would be very suspicious of the use of AD's for FMS, CFS or like diseases).
People with FMS can benefit from nutritional supplementation, too. Helpful sups that I have used in the past in order of helpfulness is bromelain (reduces fibrin buildup on the cell walls in the blood vessels aiding cellular metabolism), selenium (improves glutithione production) and B complex vitamins, especially B12. Choline is also said to improve concentration. (I haven't tried that myself yet.)
The second thing she needs is a good blood workup to test her thyroid function. Not just a TSH test - but a T3/T4 workup. She may need T3 supplementation or just more iodine in her diet. I use transdermal iodine and it's great for improving body temperature, circulation and energy levels.
The third thing she needs is EFA's in the form of fish oils, to improve brain function and it's effect on the endocrine system.
The fourth thing is testing for estrogen dominance - she may benefit from transdermal progesterone supplementation. This can take a while to get used to, so do your research before diving in and spreading it on. Takes a couple of months to take effect and get used to. Think carefully and research carefully before adding progesterone and then commit to using it for at least 6 months before judging it's effectness.
Pregnenolone is said by some to improve life quality for sufferers of FMS/CFS & like diseases. It's a precursor for DHEA, progesterone and testosterone and can combat excess cortisol levels. Cortisol can cause muscle wasting and pain. The EFA's I mentioned above are good for providing insulation in the brain against stress and aggravation. The use of EFA supplementation buffers the brain against the stress reactions that cause the adrenals to create cortisol.
Aerobic exercise is good for improving oxygenation to the cells, but needs to be balanced with enough CO2 to dilate the blood vessels so the oxygen can be utilized. Many people with FMS have low CO2 levels. There are breathing techniques (like the Buyteko method and the BodyFlex method) that improve CO2/oxygen levels. Look it up on the net. The only way I can work out without rebound pain is to perform these breathing techniques right afterwards. Otherwise, I can often end up bedridden. It stimulates the lymph system, and helps clear the lactic acid out. VERY important.
As far as lifting weights - and you may or may NOT like this answer. People with FMS/CFS need to CAREFULLY budget their energy. It's that simple. I often find myself having to chose carefully whether I will clean house or exercise. Whether I will shop or make dinner, etc. You mind find yourself doing more of the housework than you are used to, and if you want your wife to get well, you might just have to. At this point, she only has so much energy to work with before she will need to rest. If you can afford it, have as much daily drudgery performed by others as you can. Pick up roast chickens and premade salads. Have someone come in and do the heavy cleaning. Wash and fill up her car for her. This will give her more time and energy to either rest or exercise. Both are necessary.
Massage helps as it is not only relaxing, but helps clean out toxins and wastes from the cells. If you can afford it, let her get a good professional massage once a week. Or do it yourself. Lymphatic massage is also incredibly helpful. This can be done by a pro, or she can learn to do dry skin brushing.
She may need extra sleep. People with FMS do not get enough deep level sleep, which is the sleep that is required to produce the chemicals that lessen pain senstivity.
Only your wife really knows what's too much and she's going to have to find out by experimentation. With the right nutrition, enough sleep, correct breathing, less stress and less drudgery, she will find she has more energy for more positive activity - like working out. As far as upping the weight and building muscle, the above items NEED to be addressed first. People with FMS have a hard time building muscle and overworking the muscle will only lead to pain, increased cortisol and muscle wasting and misery. Address nutrition, breathing, rest, and stress before attempting to lift heavy weights, or you're just doing more harm than good.
I admit that I'm not as familiar with lupus, or it's course. But I've found the above things help immensely with FMS.
Fawn
dnoel and fawnmarie, thanks for replying. She's not on any blood thinners, but I know she just had blood work done and her white count is lowering to a 'good' range (for her). She would like to lift weights a little but I think her doc and physical therapist is scaring her not to. I think her doc isn't doing her any good. All he does is prescribe her different stuff all the time and he doesn't sound like he knows a lot about lupus or FM. It took him 3 yrs to diagnose her problem.
She is 'tender' all the time. She has to have a lot of sleep or she doesn't feel good the next day. She used to be on pregnisone? but she swore she'd never touch it again because it made her blow up. The doc has her on soma,flexoril,darvoset,ambien, and a couple of anti-imfl. She keeps getting 'female' related infections and her gyn. has tried everything and we've tried everything with no luck. He told her yesterday to stop eating anything with white sugars in it. She gets a little depressed sometimes but all in all she's a trooper. I hope this doesn't sound bad but sometimes I forget she has lupus.
She tries to walk everyday and she does her stretches. She's almost 24 and has a great body for not ever having worked out in her life. I think she might want to lift a little because I lift all the time. Maybe she does just want to do it to spend time with me. I didn't think of that.
Anyway, thanks ladies for letting me bend your ear. Fawnmarie, I copied your post to notepad. I think her diet and supp. needs a lot of work and will help her. Thanks again.
She is 'tender' all the time. She has to have a lot of sleep or she doesn't feel good the next day. She used to be on pregnisone? but she swore she'd never touch it again because it made her blow up. The doc has her on soma,flexoril,darvoset,ambien, and a couple of anti-imfl. She keeps getting 'female' related infections and her gyn. has tried everything and we've tried everything with no luck. He told her yesterday to stop eating anything with white sugars in it. She gets a little depressed sometimes but all in all she's a trooper. I hope this doesn't sound bad but sometimes I forget she has lupus.
She tries to walk everyday and she does her stretches. She's almost 24 and has a great body for not ever having worked out in her life. I think she might want to lift a little because I lift all the time. Maybe she does just want to do it to spend time with me. I didn't think of that.
Anyway, thanks ladies for letting me bend your ear. Fawnmarie, I copied your post to notepad. I think her diet and supp. needs a lot of work and will help her. Thanks again.
Howdy TBOD1
I have lupus as well. Had it for 10 yrs now. The best thing that ever happened to me was lifting. I may have different symptoms than your wife though. I was getting extremely fatigued and ached constantly. In the beginning they thought I was having a heart attack the pain hurt so much in my chest. I now go back every year for blood work-up. Seems as though they can't get a grip on the Reynauld's Syndrome associated with lupus.
I now take Mobic, an anti-infl. and that's about it. The prednisone made me fat. I had a problem with my gall bladder, but passed. My skin as well got funky, but so far okay.
I do "the stuff" and it makes me feel wonderful. I've stepped to "the dark side" when I was 21. I've been clean to give my liver and kidneys a break. Doc said I was only "masking" the problems. If that was the case, why do they prescribe steroids to lupus patients? Anyway, I can only comment on my lupus episodes. If you want to chat more, drop me a line... Torchy
I have lupus as well. Had it for 10 yrs now. The best thing that ever happened to me was lifting. I may have different symptoms than your wife though. I was getting extremely fatigued and ached constantly. In the beginning they thought I was having a heart attack the pain hurt so much in my chest. I now go back every year for blood work-up. Seems as though they can't get a grip on the Reynauld's Syndrome associated with lupus.
I now take Mobic, an anti-infl. and that's about it. The prednisone made me fat. I had a problem with my gall bladder, but passed. My skin as well got funky, but so far okay.
I do "the stuff" and it makes me feel wonderful. I've stepped to "the dark side" when I was 21. I've been clean to give my liver and kidneys a break. Doc said I was only "masking" the problems. If that was the case, why do they prescribe steroids to lupus patients? Anyway, I can only comment on my lupus episodes. If you want to chat more, drop me a line... Torchy
N
new@gettinbig
Guest
I have a client that has lupus...when she first came she was barely doing any activity and pretty much not doing anything at all...she now does strength training 3 x a week...and usually does split cardio sessions at 15 minutes one in the AM and one in the PM...this way she does not get overly tired etc....she uses weights that are a good resistance for her...3 sets of 8-10...She actually now feels less of the aches and pains then before...I think exercise will pretty much help anything and everything...I would consult your Dr. first and run things by him.
