I have SLE and degenerative arthritis of my neck and spine. Constant pain that requires me to take strong pain killers all day long, as well as the typical Lupus fatigue. The problem is that my husband is convinced that if I just excercise strenuously each day I will feel wonderful. Everyone knows exercise is a good thing. I’m not questioning that. It’s just that it’s SO PAINFUL, and at times it’s all I can do to walk and stay out of bed. It’s so hard for “normal” people to understand what Lupus patients go through. Ideas?
The only exercise that would be doable for you would be in a heated pool. They have these pools at the physical therapist. Thos is the best low impact exersise for arthritis. I know the feeling having chronic fatigue, just getting dressed is exhausting! Then if you do to much, it just makes the fatigue worse.
Maybe you should take your husband in with you next visit to the doctor, and let him explain to the doctor about you just needing exercise? Of course the doctor would agree, then you would be in trouble… ;0)
Also a physical therapist will give you specific exercises for your neck and back to help ease the pain when you don't have access to the pool Unfortunately your pain medications will also cause severe lethargy and fatigue it becomes a vicious cycle Maybe a consult with a physiatrist (specialist in rehab medicine) can help get you on a more even keel
I totally understand how you feel. I worked for hospice and so many family members would say to there loved one that was dying please just eat chicken soup you will get better. I feel we all are taught that food and exercise will make us feel better but at certain times in life it does not. I hear the same thing that if i just walk more I’ll feel better NOT! I feel like i cant even move . Stay strong and know your not alone . Kaye
He is a football coach, former personal trainer and martial artist. He isn’t thinking about a “heated pool” ( although, thanks for the suggestion, I will look into it). He wants me to do abdominal crunches, leg lifts, sqats, etc, plus walking/running on a treadmill, hiking, camping outside with or without a tent, driving around on rutted trails in a 4x4, and some weight lifting. God help me, he thinks he can “personal train” me into great health. Feeling overwhelmed.
He just has no clue, and is probably scared and frustrated about his wife being so ill. We get a LOT of stupid things said to us by people who mean well but just don't know our situation. Gentle exercise like yoga or swimming or stretching with a power cord are good, but not strenuous stuff.
We often think this, when getting unsolicited advice, even if we don't say it out loud.
Love the cartoon....so appropriate. I thought I could "exercise away" the pain. I have had lupus for 20plus years but it didn't jump into a major flare until about four years ago; consequently, I thought everyone with lupus should be able to exercise like I was doing...private coach, weights, etc.,etc. I am so ashamed of myself now that I am in the middle of a long, painful flare and can barely walk....to think that I felt others with lupus, etc. just weren't trying hard enough. God forgive me. I really didn't know. Don't let anyone push you into doing something that your body is telling you NO NO NO. Talk it over with your dr. and then decide what you can and cannot do. God bless all of you and may you have a peaceful, pain free Thanksgiving!
You got some great advice. Love the cartoon. I will no longer even discuss this with my family, only my husband. He goes with me to every appt…and yes, he does have a more than full time job. He does this in part because I get so “foggy” at times that I can’t get my point across. For him to be able to tell the doc what is going on is super. In your case having the doctor tell your husband could be very helpful.
I see a pm doc for a back injury that I had 14 yrs ago, and she actually suggested walking after I told her I was doing light pt and aquatherapy prescribed by my Rheumy. Having my husband flat out tell her that I can’t make a trip to the grocery store so that wasn’t an option was very helpful and did not make it seem as if I was making excuses.
I do think keeping your core strong is important, but has to be done in a way that works for you. I do bed exercises. I am actually quite happy that I can do that. Just bend knees and contract ab muscles for 10 secs x 10 times. I do this to keep myself out of a wheelchair.
You have to do what YOUR body tells you.
And know that each day will be different. Some better than others. Here’s hoping that you have more better than not.
I no longer do ANY ex…just house work and errands is enough for me! 
I also take my husband with me to help me remember and to explain things that the doctors don't "hear from me"! Why it takes my hubby at times to get it thru their heads, I still don't understand. I feel like it is the being a woman thing yet!
He is the one that told me to leave the last rheumie and validated all my feelings about her. I wish everyone here had a spouse to be there for them.
whathappensinvegas said:
You got some great advice. Love the cartoon. I will no longer even discuss this with my family, only my husband. He goes with me to every appt...and yes, he does have a more than full time job. He does this in part because I get so "foggy" at times that I can't get my point across. For him to be able to tell the doc what is going on is super. In your case having the doctor tell your husband could be very helpful.
I see a pm doc for a back injury that I had 14 yrs ago, and she actually suggested walking after I told her I was doing light pt and aquatherapy prescribed by my Rheumy. Having my husband flat out tell her that I can't make a trip to the grocery store so that wasn't an option was very helpful and did not make it seem as if I was making excuses.
I do think keeping your core strong is important, but has to be done in a way that works for you. I do bed exercises. I am actually quite happy that I can do that. Just bend knees and contract ab muscles for 10 secs x 10 times. I do this to keep myself out of a wheelchair.
You have to do what YOUR body tells you.
And know that each day will be different. Some better than others. Here's hoping that you have more better than not.
Yes, it is hard for normal people to understand ! My husband left me a year after diagnosis and I can tell you I was and still am emotional devastated. Which as you know effects my health. However , I started doing Pilates and it has changed my life! Yes sometimes I just get on there and slowly stretch and do exercises and tears run out of my eyes, burning sensations and sometimes neuropothy set in. I push thru no matter what! Sometimes it’s 45 min my minimum but it took my 8 months to build up to that! 5 times a week no exceptions. I stopped almost all medication, plaquenil, presiding, etc etc and in 10 months I lost 80 pounds, no pills no drugs, listen I am also a strong believer in mental health. I see a psychiatrist and I probably always will. You see if you tell your mind you are sick you will be " more sick" if that makes sense to you, however if you tell your mind that I’m fine just a lil under the weather im gonna push thru it, you would be surprised at your bodies psychodynamic response. I am not a normal person I am a lupus SLE patient. Personally I am convinced that common sense, exercise, and lack of all the additional medications ( poisions) make me sicker because the darn sure don’t make me better, I had no response to the medications I was given. Now not all of us are the same of course I’m not suggestion people stop their medications just do your own research , the side effects alone are ridiculous, pain management, everyone’s is different! Just try, that’s the thing put it in your head their is nothing wrong and try and you will be surprised at your results because what is the alternative? Saying I’m sick gonna be sick, I can’t this and I can’t that ! Yes sometimes we cannot do something but that doesn’t mean tomorrow won’t be a better day. Also food is Very important! If you have Netfix watch Food. Inc or. Forks over knives. I have also cut out meat all processed foods, comes and believe me knowledge will blow your mind. If you put bad gas in your car it’s gonna run bad correct? Well same with our fuel believe me what we think and is advertised that is good for us usually is not. Just a lilttle positive advice to my lupus friends hang in there because we all have a purpose and Fight ! We have to stick together and Fight! Expand our knowledge!
Thanks. Good advice.
Response for Mountain mama doing workouts and on strong pain medication is s no no! Number one dehydration already happens from the medication, foggy headness will surly cause you to pass out! You will need a spotter Always, I know it’s hard but try to cut back when you can on some pain Meds, alternate different lower dosages and always no matter what drink Gatorade or have some electro lights no matter what working out or not, the medication dehydrates so badly I don’t know about you but 8 glasses of water does cut it, I’m thirsty all the time my skin feels like a crocodile all the time and my lips are always chapped. A suggestion tell your husband he has to be your spotter due to this info and let’s see if you can alternate workouts it may give him a different perspective on you trying and his commitment to his wonderful advice! Good luck and God Bless
A strenuous workout why you are having disease activity is a really really bad idea. He clearly doesn’t understand the disease process. Now a gentle work out – that’s another story. Especially something that comes to mind and the body like stretching or gentle yoga. Strenuous exercise makes a healthy person feel better. But it can actually land us in the emergency room if we’re having disease activity
I meant to say calms the mind and body. Not comes
By the way I’ve been using pain medications pretty steadily for the last six years. I have recently started a nutrition program that has allowed me to get completely off of the narcotics. Once or twice a week I take an Advil , but that’s it. So nice not to be constipated anymore.
Message me if you’d like to talk about The plan.
Although exercise does increase “feel good” chemicals in the brain, it’s something to discuss seriously with your doctor (preferably with hubby present ) because the doc will almost certainly recommend light, light exercise.
Diet does help for many things. Healthier eating has actually caused me to lose weight, however the meds can affect your bones and we are talking about injuries to your joints and bones.
Alternative therapy such as the Fisher Wallace neuro stimulator can induce those same chemical reactions in the brain and has been used for years to treat chronic pain. Very good success with overlapping auto-immune diseases.
There are other options to traditional treatment, however I have found in the last two years a mix of both Eastern and Western meds work well for me.
Research is your friend and don’t be afraid to mention these treatment to your doc and hubby.
Best start, t r y to get him to go with, it could be very helpful and you can use an ally.
Happy Holidays.
I am glad to hear that exercise works well for some people. It is as individualized as is our disease. However, when I exercise it makes me much worse. I walk my dogs, clean the house and do light yoga. Most of us have related illnesses that can take a greater toll on the body. Each of us has to decide what will work for us. Good luck!
Has anyone on here tried cold laser therapy for the pain and other issues? I am going to look into it. My son has had it used on his shoulder and hips and it worked great for him after just a few treatments. It isn't a cure but it does help him when he over works himself. I have read good results for people with our issues and my son has asked about it for me and one of his brothers. It supposedly can help with weight loss also.
I felt the same way you did. To much pain to exercise. One day when I felt good and two weeks after physical therapy on my lower back. I joined a gym that had arthritis water exercise classes in a heated pool and a large whirlpool to sit in after the exercise class. I should go three times a week. I usually go one to two times a week. It does help!!!! Helps me be able to be more mobile and less pain than before I went to the class.
Good luck with whatever you decide