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|Posted By : Mogaly - 4/13/2007 6:25 AM|
|Since my flare started up last month, I have noticed a significant loss in muscle and strength. My biceps, in particular, have really shrunk (my bf was the one to point this out, so it must be quite apparent!). I'm also having trouble lifting things that a couple months ago, I could do with no problem.
I do know that since my flareup, my mobilty has dramatically decreased, meaning I am using my muscles less than before. It's only natural for my muscles to atrophy, right?
My question is, how I do I prevent even more muscle and strength loss? Any form of exercise is out of the questions right now - my meds haven't fully kicked in and I'm still very immobile and stiff and sore.
What's interesting I guess, is this time last year I was working out at the gym 5 times a week with a personal trainer without any problems! I was in the best shape of my life. Now I don't even care about having good cardio or looking lean or being "in shape" - I just want to have some strength so my boyfriend doesn't have to do EVERYTHING for me.
......This is so frustrating......
|Posted By : hippimom2 - 4/13/2007 7:14 AM|
|Jen, I've lost so much muscle strength that sometimes it's hard for me to hold my coffee mug up for a while or fold laundry without taking a break. Like you, I was very active before I got sick. I ran 5-6 days a week and strength trained 2-3 days a week and was very fit. Now I'm much larger and very very out of shape which is extremely frustrating. I'm trying really hard to slowly work back into some sort of exercise, but everytime I try, I seem to flare. I have read and also found out myself that yoga or pilates works well for conditioning and strenght and isn't too hard on my body. Make sure you start out with something that's not too intense though - they have all kinds of different levels.|
I wish there was some easy answer. I feel very betrayed by my body and wish so badly that I could exercise regularly, even if it was just taking a walk most days. Hopefully some other people will be along with some more advice for you about this.
Diagnosis: UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds: Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily;
Amitriptyline 10mg; Neurontin 300mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Restasis eye drops
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|Posted By : Bitzi - 4/13/2007 8:51 AM|
I am also becoming a weakling. I am on the small side so no one expects me to have Godzilla strength but it is frustrating not to be able to lift things like the O J or the kids backpacks. I haven't mentioned this to my family members cuz I don't want to be a constant complainer so I just hide it or work around it but it is frustrating.
|Posted By : PattyLatty - 4/13/2007 9:09 AM|
|Jen and Bitzi, I share your pain. Hippi, I could have written your post. In fact it was eerie reading it because what you described about your body before and after describes me so accurately. I used to be cute, attractive, and energetic. Now I'm overweight and feel 20 years older. And I flare any time I try to exercise. It's so bad that whenever I mention starting to work out a little at the gym, my hubby begs me not to. He tells me it will start a flare, and he's right. Girls, we just have to focus on internal things and accept our bodies and our conitions. Haha, easy to say, but how hard to do.|
Sometimes I worry that my acceptance of my disease and the condition I'm in actually keeps me from fighting to get my life back to what it was. But I just don't have the energy or the strength to do so.
Bitzi, I wish you could share your declining strength with your family. Is there a way you can be very matter of fact and tell them you just want to share this with them, but that you haven't before because you don't want to be a burden. How on earth could that be complaining. It hurts me to think that you don't have your family's support, or that you feel guilty about sharing things with them. While I admire your courage, I hate that you have the double burden of having to hold everything in.
Jen, I know just what you mean about not caring any more. It's as though we don't have the energy to care because what little energy we have is going to just keeping us going.
Take care of yourselves.
Lupus, Rheumatoid Arthritis, Sjogren's, osteoarthritis, fibro, ibs, renauds, restless leg, hiatal hernia, double vision.
cellcept, neurontin, prednisone, plaquenil, synthroid, triamterene, cymbalta, tramadol, lunesta, actonel, meridia, tricor, aciphex, multivitamin, calcium w vit D, fish oil, aspirin
|Posted By : karasmommy - 4/13/2007 2:07 PM|
May I suggest very light Yoga (i.e. stretching only, no poses)? This is what I do to keep my muscles as limber as I can. I have been able to do it through most of my flares, even if it is only the stretching parts. Even if it is sitting on a chair during a flare I try to stretch a little. As I come out of the flare I work my way to poses and holding the poses longer and deeper to work out my mucles and strengthen them.
Even when I am out of a flare, I can't work out intensly, it absolutely exhausts me, I stick to Yoga and walking and some "bouncing" on my mini trampoline.
Just some thoughts!
Diagnosed with Lupus - April 2002
Diagnosed with Crohn's Disease - January 2003 (problems since early 1990)
Meds: Lunesta 2mg, Flexeril 10mg as needed, Immuran 100mg, Plaquenil 200mg, Probiotics, Multi-vitamin, fish oil
|Posted By : Bsime - 4/14/2007 8:48 AM|
Have you been diagnosed? What meds are you on? Weakness can come from meds or it can be a symptom of lupus, myositis, or an overlapping connective tissue disease. Of course, there are others than can cause weakness but I am only listing some from the AI family of diseases.
I have mctd which is lupus, scleroderma and polymyositis. PM hit me like a freight train and I lost 40 lbs of muscle mass and was a quadriplegic only 15 months ago. Fully independent today and recovering slowly.
If you have not seen a rheumy you should and list all your symptoms. The earlier you can get a diagnosis and effective treatment the better the outcome. Early diagnosis is not always possible.
Muscle atrophy can happen in a very short time. You can address that by doing mild exercise. Anything you can do will help and light resistance training (weights or weight machines) can help to restore your strength. Yoga or Tai Chi are good all around and gentle regimens that can help cardio, flexibility and strength. Enroll in a class or buy a cd from amazon. I started tai chi over a year ago when I could barely stand. Could only do the basics but it helped. Today I am actually helping disabled people learn tai chi.
If you don't want to tackle yoga or tai chi then just walk and use some light weights. You can also do simple exercises like Hindu squats for lower body and core strength...no equipment needed. Do a google search for instructions....they are easy and address strength, cardio and some flexibility issues.
Mixed connective tissue disease (systemic lupus, scleroderma, polymyositis), Raynauds phenomena, Hypertension, Barrett's syndrome.
Meds: prednisone (9mg & tapering), 150mg imuran, lisinopril 40mg, maxide 37.5/25mg, norvasc 5 mg, folic acid, potassium, aciphex 20mg, multi vitamins.
Maintain your optimism and you can beat the odds.
"Although the world is full of suffering, it is also full of the overcoming of it." Helen Keller
|Posted By : CityGirl - 4/14/2007 11:03 PM|
|I am sorry you are frustrated, I can understand completely. I love yoga - not just for the physical benefits but it really makes me feel relaxed and centered. I know that sounds a bit cliche but it really is true. I go to a yoga studio that has a class just for people with inflammation disorders. Maybe see if you have a local studio that offers such a class. It may all be in my mind but I really think it has helped me a great deal. Another thing to try is stretching while in a pool. The water makes movement much easier IMO. I also love to walk. When it is warm out I can walk for miles and miles. It really clears my head. |
I broke my knee last summer and was immobilized for 6 weeks. I was amazed at how weak I became in my leg in such a short time. The good news is you can quickly build strength back up. Just take it slow and it will return!
|Posted By : Mogaly - 4/14/2007 11:57 PM|
|Thank you for all the suggestions.
Because I am backpacking abroad at the moment, I think probably light stretching and walking are about as much exercise as I can muster (and lifting my backpack on "good days"). A few years back I took a Tai Chi course, but that's when my Lupus was doing much better and I had more mobility. Now if I try to do Tai Chi (or certain yoga poses) - I just hurt.
I was also wondering, do you think increasing my protein intake a bit would help?
25, currently backpacking SE Asia
Diagnosed with Lupus: 1999
Daily meds: 400mg Plaquenil, 150mg Voltaren