I am new here and would really welcome any advice you can give me.
I have been recently diagnosed with moderate to severe Crohn's and have recently started medication. I also have been treated for about 5 years now with Plaquenil for a "lupus like" condition. Doctor's aren't sure exactly but they do know I have a type of autoimmune illness with flares and many lupus symptoms. my ANA goes pos to neg and other tests go back and forth as well. For many years my health appeared to be "Status quo" but about two years ago I started putting on a lot of weight with major leg, ankle, arm and hands. I have seen about every doc available and noone can tell me why I have gained so much weight. My rheumatologist thinks my "cells are leaking" - has anyone ever heard of that?
To put it in perspective I have gone from a size 10 to 16 in just about 2 years. Sometimes I gain up to 3 pounds overnight and I am extremely swollen. I am 5'4 and 226 pounds. Needless to say I am fat. people say - you don't look fat you look swollen. Well that is great - but I still look big and my clothes keep getting tighter. My diet has not changed, I eat relatively healthy and when I am not in too much pain I work out. I was on lasix for a while but it didn't help at all. I have no thyroid problems, blood sugar is normal, no indication of diabetes. I even tried weight watchers for a while - 4 months and managed to lose a whopping 5 pounds!
All I know is that my health and self esteem are getting very low. I just don't know what to do anymore. So if anyone can help or give some advice I would greatly appreciate it.
LALA, Is there any chance that the drug you take for Crohn's is associated with weight gain & swelling? To check for side effects, etc., you can click the "Resources" tab above, then select MedLine Plus, then Drugs & Supplements, then find your Rx. Sincerely, Vee
I have a friend with Crohns and it seems like everything she eats - goes straight through. So she doesn't gain any weight. I lost weight before I was diagnosed with Lupus and I haven't put any of it back on. Sounds like it could be you meds. Hope you find out what is going on, Good Luck.
LaLa, I really don't have any advice for you, but I can relate to your weight gain problems. I just gain weight incredible fast. I do have a thyroid problem I have been working on for the last two years, but it is pretty much under control now. The problem is losing the weight. Like you no matter what I do as far as diet or exercise the weight does not want to drop off. Oh, I lose the first few water pounds but no actual weight.
I have had the positive ANA and it is now negative, doc can't seem to get to the lupus diagnosis. He is still circleing on that one and stays with a connective tissue disease. I am off plaquenil and on prednisone, but haven't had any weight changes with it acutually lost a few pounds when I first started prednisone.
Perhaps you have an allergy to some sort of food such as wheat or rice or some ingredient in food that creates your problem. I know it is very frustrating.
Yes it is so frustrating. I feel like nothing I do helps. I got tested for allergies and nothing showed up. My doctors all feel that it is definitely something going on they just don't know what.
Earlier today I had a meltdown because I was in so much pain. Not just from the lupus but from the Crohn's. I have these weird sharp pains in my stomach and chest, Today I am especially swollen - and the rain here doesn't help.
I feel so helpless sometimes. I am only 31 years old and my body feels about 80. It gets to me sometimes and having this extra weight just tired me out.
I am sorry about your weight gain - I know it is frustrating. I wish there was something someone could do. But for now I just try to keep my head up and do the best I can. Today is just not my day.
Thanks for the support. It helps to know that someone understands. I wish you well and good luck to you too!
Just a little thought. To me the weight gain is a vicious cycle. By this I mean, that if it isn't the medications we take that make us prone to gaining weight, then it is lack of exercise. Not because we don't want to do this but because we are in a lot of pain and moving our bits about causes us even more pain. No exercise, more weight gain. Don't attempt too much when your lupus is flaring, but gentle exercise is recommended to help with our body strength. I have often dreamed of joining a gym, but for me that would not be of any benefit, so I devised my own little regime.
I try personally to do a little bit of gentle moving of the upper body, neck and so on. These exercised help my fibro a lot too. Then a few gentle leg lifts and arm lifts if possible. I use a long piece of stuff that puts me in mind of the consistency of balloons. I forget what it is called. I will look into it. You hook it around your foot and pull upwards and towards you gently. Hey presto, your leg lifts !! You don't have to do very much, maybe about 5 of each. This will hopefully strengthen your body a little more and make it possible for you to progress onto a little more exercise.
I have a nerve and muscle wasting illness, and so find moving about extremely difficult. Hence weight gain. I use a wheelchair a lot, but I also walk as much as I possible can to keep my bits going. Then I had heart surgery and because of all of the staples and stiches and so on in my chest, it made it even more difficult to get mobile. Hey ho !! So I devised this little routine for myself.
I do hope sharing this helps you.
I am not a medical doctor, I only speak from my own experience of the illnesses I discuss here.
Last edited by goldenwings; 04-24-2006 at 06:45 AM.
Hi, lala. Have you seen an endocrinologist? I know you said you've been checked for thyroid, diabetes, etc.---but maybe there are other causes of endocrine imbalance that are harder to detect & thus better vetted by a specialist in this area?
Wish I had something smarter to offer here... Sympathetically, Vee
Last edited by VeeJ; 04-24-2006 at 07:44 AM.
Yes - I have. I have been to an endocrinologist, rheumatologist, nephrologist and many others. The endocrinologist agreed that something was wrong , but all my labs came back normal. She was thinking it could be Cushing's but those tests came back negative. She asked about my health regarding nutrition and exercise and she could not "blame" it on overeating.
I am starting to think I am crazy but I know there is a problem. My ankles swell, my arms swell and hands swell as well. Diueretics didn't even help.
It is absolutely nuts and I am slowly losing hope. I just don't know what to do anymore - but thanks for the advice and support.
Lala, Would your "lead" dr. (rheumie, or GP, or...?) consider helping you hit the RESTART button & trying another endocrinologist (or whichever of the specialities makes the most sense)? No one wants to start over, but sometimes it makes the most sense to do just that.
Years back, I worked with a young woman who'd had unexplained weight gain. After a number of teaching hospital consults, her problem turned out to be pituatary. I just remember how difficult it was for her to get answers, even in a city with loads of drs. and hospitals. I really hope you can get your current drs., or someone, to help you plan the next step. All best wishes, Vee
Thanks Vee. I was thinking that "starting over" might be the best thing to do as well. Today I have an appointment with a new Rheumie and then my Gastro to see what the next step in my Crohn's treatment will be. The gastro guy is new to me too - met him when I was in the hospital a few weeks back. He seems fantastic and wants to get some "answers". So hopefully between the two something will result. I will definitely keep you posted.
By the way - you are awesome. You give great advice and support. And you are so bright. I am so glad I found this site and have people like you and the other members helping me.
Lala, GOOD LUCK with your appt. today with your new rheumie.
And about the group here---I also wish I'd known "us" when I was running in circles. That's why I check in here so often, because I remember what that feels like---plus I keep thinking that just one tiny thing one of us writes might make a big difference to someone else. Until later, Vee
Went to the new Rheumie and she claims i have Fibromyalgia and chronic fatigue and chronic pain. She claims I have had it for years and I was most likely misdiagnosed. TYPICAL. As for my Crohn's - I have an intestinal infection which is seriously inhibiting healing. SO -- I am on a new antibiotic along with the steroid they gave me. If this doesn't help I many have to have surgery to remove the infected parts of my intestines.
Needless to say I was not happy and pretty much went inot a deep depression for the last 2 days. I am just so frustrated. Is it too much to ask to have one day of no pain? No new diseases? No bad news???
I know I know stop the poor me routine but I had to vent.
Jsut wanted to drop a line and let you know how things went.
LaLa thanks for the update. Fibro, chronic fatigue and chronic pain? That sounds a little redundant....giggle.....you can't have one without the other!!!!! I sure hope you don't have to have surgury. Hope you are having a better day.