new symptoms, need some advice

Hi there,

 

Well, I'm at a point in my life where I can't tell what the heck is flaring!  Is it my lupus, Fibro, or something else?  Usually a jump up in prednisone will tell me what it is.  Not this time.  So I'm wondering if a loss of appetite is common with Fibro?  This symptom is very new to me. I've never been on 20mg of prednisone, and not had an appetite, and actually is losing weight!  I feel like crap.  All my joints hurt too.  I can't grasp what this is.  Unfortunately, my rheumy is on vacation till mid August . 

 

Any insight is appreciated, Thanks.

Ginny

Ginny,
I was just going to ask the same thing! I was actually going to run a poll so people could answer anonymously since it is such a touchy subject as to whether they have gained weight, lost weight, or maintained. I haven't eaten in three days. Well, I had a banana earlier and a few crackers. I have no apetite and no interest in food. I used to love food and I used to love to cook. Every once in a while I make myself eat something because I think maybe I feel so crappy because I'm starving to death but nothing happens. I don't feel better. I don't feel full. I don't feel hungry. I don't care. I have always been small but now we're into the ridiculous. I can't find anything to wear that is small enough and I refuse to buy new clothes. I just started borrowing some of my niece's clothes. I have no cravings and seriously little interest in food. I have to remind myself that my child needs to eat and keep an eye on the clock to remember to offer appropriate snacks and meals at the right times. Does anyone else have no apetite?
Holly

Sherrine,
Ofcourse you're right it's just that eating has become such a chore. I'm not on an anti-depressant yet, though the dr is pushing cymbalta. The stimulant I'm on suppresses appetite but I lost my appetite before going on the stimulant. However, I'm no longer losing weight which is good. And I don't deny being depressed. In fact, I'm so depressed, I no longer care that I'm depressed. I am not going to make any changes in my meds, supplements, exercise regimen, etc. until after my "workup" at Duke hospital next Thursday. I sure hope I'm not getting my hopes up for nothing. I just know this is going to help me. Just knowing what is going on with my sleep will be a relief. In the meantime, I'll try to force down a salad or something--I just don't want to make one!
Holly

Hi guys,

 

Yeah, this defies all sense.  I've been on prednisone for 8 years.  Long time. I know what my body feels like when it's a lupus flare, and when it's a fibro flare.  I feel quite different.  This flare, is totally new.  It feels like Fibro, lupus, arthritis all mixed together.  I've never felt like this. 

 

It's the loss of appetite on so much prednisone that has me really dumbfounded. I should be eating my face off right now, but I'm not. I've actually lost 6 lbs in 2 days.  I am eating. Just want you to know that.  But my portion sizes are smaller. 

 

I'm not on any anti-d's or new medication either.  Everything is the same. I"m seeing my pcp tomorrow.  HOw much help she'll be I have no idea.

 

 

Ginny-
When this fibro first hit I got depression with it also and completely lost my appetite. I lost 8 pounds and now it has leveled out and I am not losing anymore. I do have my appetite back, but not how it used to be. When I couldn't eat- I would try to get some nourishment in me. Ensure drinks, pudding, fruit, bites of meat, lots of liquids and took a multivitamin. Hopefully it will balance itself out for you too. GamJill

I've been taking all these B vitamins trying to get some energy back and was wondering why I was eating like a horse Jeannie.

 

Depression will either take your appetite away or make you eat. Stress has the same affect also. You don't eat as much in hot weather unless your taking a handful of B vitamins.

 

If your eating and losing weight you should see your doc.

 

I went through the not eating last summer, due to mourning, and it was all I could do to get a package of cheese and crackers down a day. But that is a natural thing and I knew why.

 

Holly, I hope things start going better for you. Ginny, I hope you get this figured out.

 

luv and hugs

Marlee

Hi Ginny-

I have grinded my teeth at night since I was a young girl- and did not get help with TMJ till my 20's. With x-rays they have made sure everything has been OK with the joints- which I feel fortunate they have been. That was alot for you to go through at such a young age, but it sounds like it worked! And I'm with you on the red flags and what was to become.

When I was 10 my sister accidently pushed me out of a tree (I tease her about that, saying she did it on purpose) and I broke my right collarbone badly. Because of the severe pain in the collarbone they missed my neck injury. Just before I turned 30 I was having severe neck pain and trouble swallowing, they x-rayed and found arthritis/spurs. My neck will flare up on and off. Humidity, and cold, cold weather I've noticed will do it and (pre-fibro) if I did too much housework in one day like scrubbing floors, vacuuming, etc. I would have to space my work out over the week. I have chronic pain in my neck, but I have just learned to live with it. :(

When I got hit 4 months ago with fibro Ginny I was having all these goofy symptoms- and before the pain hit all over my body, the pain hit my neck and it was like nothing I had felt before it was SO bad!!!! There was no pain chart for what I was feeling- I was sobbing from the pain. I went in to my Dr. and she put me on Prednisone for 1 week and that took care of the pain. They also x-rayed my neck and it showed moderate arthritis. I'm thankful it is not severe arthritis because this is bad enough! I don't have an answer re; does it flare up when the fibro does because I haven't had it long enough to see if there is a pattern yet. But I do know it did flare up just before the all over body pain hit. So we will see, and I will let you know if I notice if it is at the same time. 

Hang in there, and I hope you start to feel better soon. I have had bad pain most of this week "all over" but is has been a VERY trying week emotionally (Won't get into that now) and I am hoping things will calm down myself. GamJill 

Hey you guys who are not eating, I understand totally, I think we all do. My fibro takes away my appetite, then I don't eat enough- then I get nauseated, then I become dehydrated, my blood sugar is out of control and I find myself in a health "perfect storm" and I am DONE. So after talking with the great folks on this forum and getting some great [and life saving advice, I assure you], I have learned to keep these things in a special place in a kitchen cabinet: chicken and beef broth; gatoraid, diet sprite and regular ginger ale; breakfast bars; sugar free jello; saltines; instant mashed potatoes. ALso yogurt in the fridge along with some mild soft cheese. Once I feel that I am about to crash [which happens SO fast I can not believe it] I begin on the gatoraid immediately, then I have a small but significant [for me] variety of things that are quick, that I know I will eat and will not make me feel worse and are easy, simple and quick. Try something, anything, that you will feel ok about eating or drinking. Getting some sugar and salt into you before you dehydrate is so important. We do understand the ick about the eat when we feel bad. But try and head it off with something neutral and begin to stabilize, then as you feel better you will find that you ease out of the flare's resulting ick and into a better day. I hope you feel better soon and don't feel preached to :) I care- let us know how you guys are doing!
Peace!

I hope not to unpleasant complaint, symptom but I use to have what I thought constant urine infections only to find out I didnt , it was the fibro causing burning sensation through the vagina area, learnt to live with it now but I now have like my bowel goes to sleep, cant stress enough that its not constipation but no movement whatsoever through bowels even with masses of laxative barely anything. the muscles dont push.  Just wondered if anyone else has trouble and what they use.

Hi Sue2z,
I have a very similar problem with bowel movements. My muscles have quit working in that area and I have to take a laxative every day. It's not something that is easy to talk about with anyone so I've often wondered if I was alone in having this problem. The dr. told me that it is O.K. to take a laxative every day so I guess I'll have to keep doing that. As far as I can tell, the only alternative is to have a colostomy and I certainly am not anxious to explore that option. I don't have a clue as to what causes this problem - wonder if it has anything to do with FM? All I know is that it is an embarrassing problem to have!! I hope you find a way to get some relief.

Nancy

Sue and Nancy I have gastroparesis, the stomach muscles do not work right to digest food. My doc says it has nothing to do with fibro, but who knows. Actually, my whole digestive system is messed up from throat on out.

 

luv and hugs

Marlee