Lupus... I am not alone!

  •   #1  
    skinnyjenni's Avatarskinnyjenni , 11-24-2008 11:20 PM
    I am so happy I stumbled on this forum!
    Last monday my test results came back as positive for Lupus. Doc said that he can't diagnose until we do more tests which can take as long as years! Doc says it is definitely an auto immune disease and it is most likely lupus. I guess diagnosis can take as long as years? Although Doc swore me to staying off webmd I went on and every symptom list includes underweight or unexplained weight loss. I am the opposite. I gain weight being sick in bed over the weekend eating chicken broth and crackers. I have been steadily gaining for the past 8 years, it has been slow.

    Has anyone had any success losing weight with weight watchers? I asked doc if there was any special diet I should start following and he did not have any suggestions. I eat pretty healthy, no fast food, alot of fresh fruits and veggies, low salt (supporting hubby with severe hypertension), whole grains and staying away from all the proccessed junk. I try to exercise regularly but most days after working an 8 hour shift and then getting kids homework help, dinner, dishes, ect. it is all i can do to get my body into bed before i go to sleep.

    Has anyone found any type of suppliment that helps with the fatigue or pain?

    Most importantly, anyone have success losing weight with this conditon or one like it?
    Reply
  •   #2  
    Justwant2Bhealthy's AvatarJustwant2Bhealthy , 11-26-2008 11:08 PM
    JENNI ~ you don't say where you started, but that you have gained weight slowly over the last 8 years to be where you are ... have you eaten only fruit and veggies all that time and no other foods? No chips, no pasta, no rice, no pizza, no nachos, no cookies, no cakes, no pies, no donuts, no meat, no hot dogs, no burgers, and no fries in all those years???

    I know a few people who have lupus and it did take years for a diagnosis becuz the symptoms are so close to other autoimmune diseases, it's hard to pin-point if you have it; and some doctors are hesitant to diagnose it.

    I have never heard that people with lupus cannot lose weight; I guess it's the same with anything. We have to continue to live in a healthy manner: eat well and live well (meaning get enuff exercise each day too). Have you made a journal of all you eat each day for a week or two to see if there are some areas you can improve upon?

    There are WW threads here; be sure to check them out too. Rosebud
    Reply
  •   #3  
    purpleorc's Avatarpurpleorc , 11-27-2008 06:02 AM
    Welcome to 3fc Jenni you have only had a very short time to take in what disease you have. Like yourself I have an autoimmune disease albeit not Lupus I have MS. You have had years in that horrid place called limbo land where you know something is wrong but no medical diagnosis to it. I was in that position for only a very short time compared to you.

    It will take sometime to adjust to what you have and you more than likely will go through phases in the beginning from being depressed to being angry. I am not sure if there is a website out there which there is a forum about lupus. It is nice to be able to chat to others with the condition as it can feel pretty isolating not knowing anyone else with Lupus

    Like the poster before me Justwant2Bhealthy I have never heard of anyone with Lupus not being able to lose weight. So there is light at the end of the tunnel even though it might not quite feel that way. As I have said I have an auto immune condition and I have successfully lost weight over a period of 20 or so months. So I am now 123lbs lighter than I was.

    Look at what you eat now are there meals that you can tweak and make healthier for example using ground turkey rather than ground beef. If you think that you are eating a good diet it might be a good idea to post in the weight loss support forum your daily intake. Then others can pinpoint areas that need tweaking. Sometimes we are not aware that what a portion is, if like me I tend to be heavy handed especially with pasta and breakfast cereal for that matter Writing what you eat down makes you more accountable and you stop the mindless eating that we all do at one time or another.

    I made changes slowly to my diet so what I am eating today is not what I was eating some 20 months ago. Losing weight is not a race so take things at the speed you can. Exercise maybe more limited to how you feel that day. Our needs are different so your marathon to you may be walking 1 mile never mind running 5k which is never going to happen. (this is based on what I can do physically by the way)

    I suffer from pain and fatigue. Fatigue is something that is not really understood by many people it is not the same as feeling tired as you know. I take prescribed medication for fatigue. There are several out there on the market so talk to your doctor about these. I find with fatigue to help yourself in this you must fuel your body with good food. Eating lots of processed, sugary and fatty foods does it no favours. So eating a healthy balanced diet helps a tiny bit. Rest is going to be your key to helping with fatigue. Firstly no more of burning candles at both ends so late nights and early mornings. If I do that it completely wipes me for a couple of days. Chores you have to do I find it better to do a bit and then rest. Then do a bit more and then rest again. Take a nap in the afternoon if you have to. Fighting your body is not going to help it in the slightest. I have tried not sleeping in the afternoon and fighting it. Oh boy does it come to bite you back for not listening to your bodies needs. It will be like walking a tight rope at and balancing getting enough rest plus living a little. Trust me it does get easier the more in tune you are with listening to your body.

    The more weight you are able to lose this will help with the fatigue as I have found. I am now not carrying round 123lbs plus doing every day chores and exercise have become a wee bit easier. So this can contribute to making fatigue a little easier not having the weight. Don't be under any illusions though that if you reach your goal weight fatigue will miraculously disappear as this is not going to be the case. It will just help reduce it some what has it has with mine.

    An alternative therapy that you may never have heard of but I have found an absolute godsend is hyperbaric oxygen therapy which is normally used with divers who have the bends. I do not know if in your area one is run as I go to one at an MS therapy centre. It maybe MS therapy centre but we do welcome a whole host of other diseases from CP to motor neurones disease. I have this therapy once a week and it lasts for approximately 1 1/2 hours. It helps my mobility but most of all it helps my fatigue.

    If Lupus pain is a nerve type pain then this is notorious difficult to treat. MS pain is nerve based pain so I know from experience. I have eventually found relief with a combination of medications. I am not pain free but it is surely more bearable. The medications I use are anti epileptic drugs but not for epilepsy but they are known to treat nerve pain. At night I use a low dose of antidepressant to help with the pain. It might take some trial and error at getting the right dosage for you. Try to not do too much in one day we now have to learn to live life at a different pace. I was my own worse enemy in this area I wanted to prove I could still keep up with everyone else. Though the only thing I was doing was having lots of pain.

    A TENS unit is a good type of no invasive and no drug therapy route to explore. Sticky patches (electrodes) are attached to the skin, and small electrical impulses are delivered to underlying nerve fibres. This works in two ways. The first is through endorphins. The body has its own mechanisms for suppressing pain. It releases natural chemicals called endorphins in the brain, which act as pain relieving substances. TENS units can activate this mechanism. Secondly, the electrical stimulation of the nerve fibres through the electrodes can actually block a pain signal from being carried all the way to the brain. If it is blocked, the pain is not felt. There are many different ones to be bought out there on the market just depends what your price range is.

    Lastly I have not put down the drugs I am on as they are known by different names in different countries and you and I are in different countries.

    I hope the snippets I know from my own experiences will help you in your quest to become a healthier new you. Plus be more pain free and less fatigued
    Reply
Reply