new symptoms, need some advice

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Ginny
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Date Joined Feb 2003
Total Posts : 5514
   Posted 7/31/2008 4:38 PM (GMT -7)   
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 mad
 
Any insight is appreciated, Thanks.
Ginny
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck) . Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, Cozaar, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17101
   Posted 7/31/2008 4:57 PM (GMT -7)   
Golly, Ginny, I'm not sure.  I have fibro and I have been on Prednisone, too, and have never had a loss of appetite and lost weight.  Usually you will have a weight gain with both fibro and Prednisone. What other medications are you taking?  Have you been on Prednisone long?  Are you taking anything new?  Maybe that is interacting with your other meds. If this continues, you should probably go see your doctor about this.  I do hope you start to feel better soon.
 
Sherrine 
Forum Moderator/ Fibromyalgia
***********************
Fibromyalgia, Crohn's Disease, Ostomy, Diabetes, Autoimmune Inner Ear Disease, Osteoporosis
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
God does not give us a spirit of fear, but of power and of love and of a sound mind.    2 Timothy 1:7


hhh
Regular Member


Date Joined Jul 2008
Total Posts : 64
   Posted 7/31/2008 5:14 PM (GMT -7)   
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
Forum Moderator


Date Joined Apr 2005
Total Posts : 17101
   Posted 7/31/2008 5:24 PM (GMT -7)   
Holly and Ginny, are either of you taking antidepressants?  I'm asking because my husband used to suffer greatly with depression and he would lose his appetite.  He, too, didn't care about anything and he lost a lot of weight!
 
These painful conditions can cause depression.  Actually, antidepressants can help ease the pain of fibromyalgia some.  In your case, Holly, you have all the stress at home, too, that is playing into this.  Maybe you two need to talk to your doctors about this.  You do need to eat healthy to function in your life.  If you don't, you could develop even more health problems and you certainly don't want that!
 
Sherrine
Forum Moderator/ Fibromyalgia
***********************
Fibromyalgia, Crohn's Disease, Ostomy, Diabetes, Autoimmune Inner Ear Disease, Osteoporosis
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
God does not give us a spirit of fear, but of power and of love and of a sound mind.    2 Timothy 1:7


hhh
Regular Member


Date Joined Jul 2008
Total Posts : 64
   Posted 7/31/2008 5:48 PM (GMT -7)   
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

getting by
Forum Moderator


Date Joined Sep 2007
Total Posts : 40587
   Posted 7/31/2008 6:15 PM (GMT -7)   
Maybe you should pick up some protien or granola bars to snack on. Something premade for yourself when you don't feel like making anything. If you are underweight, try some pudding or icecream. Things that I shouldn't have, sounds good.

Best wishes to you
hugs, Karen
  Moderator-Depression and fibromyalgia
 
fibromyalgia, Chronic fatigue, depression,allergies


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 7/31/2008 6:56 PM (GMT -7)   
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.
 
 
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck) . Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, Cozaar, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


Jeannie143
Veteran Member


Date Joined Apr 2004
Total Posts : 6056
   Posted 7/31/2008 10:53 PM (GMT -7)   
Ginny,
You may want to add a total B complex to your vitamin mix. Several of them are responsible for appetite. Might help, can't hurt and what your body doesn't use just passes out with the urine.
~ Jeannie, Forum Moderator/Diabetes & Fibromyalgia
I know God will not give me anything I can't handle. I just wish that He didn't trust me so much. ~Mother Teresa

"People are like stained glass windows: They sparkle and shine when the sun's out, but when the darkness sets in, their true beauty is revealed only if there is light within."- Elizabeth Kubler-Ross


GamJill
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Date Joined Jun 2008
Total Posts : 1279
   Posted 8/1/2008 9:54 AM (GMT -7)   
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
 
 
Fibromyalgia, Depression, Anxiety, TMJ, Arthritis/neck
 
Zoloft, Tylenol 4000 mg., Zanaflex


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 8/1/2008 3:43 PM (GMT -7)   
Hi GamJill,
 
Thank you for your insight on this.  I was definitely depressed this past Monday through Thursday.  NO question about it. That could definitely be part of the cause of all this.  I'm now down to 10mg of pred instead of 20. Still not feeling 100% today, but it's all that residual prednisone in my system.  I hope to feel back to normal by Sunday. We'll see if my appetite comes back too. For now, I ain't complaining about the weight loss!  Hahaha... I have loads O padding to spare! 
 
Actually, you have neck arthritis I see.  I do too.  C3, 4, 6, 7.  Isn't it lovely!  I also had TMJ surgery done when I was 16.  The cartilage in the left joint was totally deformed.  They went in, reshaped it and stitched it to my ear canal!!  Haven't had an issue since.  But it should have been a red flag that something else (Fibro, lupus) was going on.  How are you dealing with the neck arthritis?  Do your flare ups come and go? Do they flare up the same time your fibro does?  I'm starting to see a very direct correlation with that.
 
Ginny
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck) . Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, Cozaar, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


Marlee2
Veteran Member


Date Joined Aug 2007
Total Posts : 6067
   Posted 8/1/2008 5:53 PM (GMT -7)   
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. tongue
 
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


Forum Moderator Fibromyalgia
 
Fibro,Sjogrens, Anxiety, Gastroparesis, IBS, Gastritis, Allergies, High Blood Pressure, Low Blood Sodium and Osteoarthritis
 
Amitriptyline, Celexa, Xanax, Synthroid, Zyrtec, Micardis, Spironalactone, Tylenol, Reglan, Lidoderm Patches and Tramadol
 
Co Q 10, Super B Complex, Extra B12, Multi vitamin


hhh
Regular Member


Date Joined Jul 2008
Total Posts : 64
   Posted 8/1/2008 7:37 PM (GMT -7)   
Thanks Marlee,  I think I may be slowly emerging from this latest relapse.  The days aren't nearly so strenuous and the I- have- to -pull- off -the -road -right -now sleepiness is less frequent.  I lost another pound (which puts me down to 103 pounds and 115-120 is a healthy weight for me) so I am really going to try to eat something tomorrow.  Maybe I'll have the energy to take my son out for lunch.  Ginny, is your appetite back?  Are you forcing yourself to eat?  Do you imagine a food and think, hmm that would be good right about now?  I stand in front of the refridgerator forever hoping something will tempt me and I finally choose a yogurt or peanut butter on bread, something easy.

GamJill
Veteran Member


Date Joined Jun 2008
Total Posts : 1279
   Posted 8/1/2008 9:10 PM (GMT -7)   

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 

 


 
 
Fibromyalgia, Depression, Anxiety, TMJ, Arthritis/neck
 
Zoloft, Tylenol 4000 mg., Zanaflex


GamJill
Veteran Member


Date Joined Jun 2008
Total Posts : 1279
   Posted 8/1/2008 9:45 PM (GMT -7)   
Hi hhh and welcome!
Your like me, and that my ideal weight is 120 and I have also lost weight down to 103 in the past. Even if you don't want to eat- please make yourself. And foods high in calories! Depression is what takes my appetite completely away so I relate.
Hopefully you can get started on an anti-depressant soon as I think it will help your appetite and the fatigue. Let us know what happens next week. GamJill
 
 
Fibromyalgia, Depression, Anxiety, TMJ, Arthritis/neck
 
Zoloft, Tylenol 4000 mg., Zanaflex


Sera Smiles
Veteran Member


Date Joined Nov 2006
Total Posts : 671
   Posted 8/1/2008 11:51 PM (GMT -7)   
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!
"Its never too late to be who you might have been" George Eliot


hhh
Regular Member


Date Joined Jul 2008
Total Posts : 64
   Posted 8/2/2008 6:08 AM (GMT -7)   
Thanks GamJill and Sera Smiles. I am waiting for my husband to leave for work (anyone have a helicoptor or a time machine?) and then I'm making breakfast for my little boy and myself. We're having what we call in this part of the country an egg in a hat, but I've also heard it called egg in a hole and one-eyed jack. And it actually sounds kinda good to me, like I'm actually looking forward to it a little bit. We'll see how it goes down.
Holly

Sue2z
Regular Member


Date Joined Jul 2008
Total Posts : 368
   Posted 8/2/2008 6:40 PM (GMT -7)   
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.

Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17101
   Posted 8/3/2008 9:01 AM (GMT -7)   
Sue, I have never heard of that symptom.  I suggest you see a gastroenterologist to discuss this problem.  Hope you can get some help soon.
 
Sherrine
Forum Moderator/ Fibromyalgia
***********************
Fibromyalgia, Crohn's Disease, Ostomy, Diabetes, Autoimmune Inner Ear Disease, Osteoporosis
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
God does not give us a spirit of fear, but of power and of love and of a sound mind.    2 Timothy 1:7


entee
Regular Member


Date Joined Jul 2008
Total Posts : 33
   Posted 8/3/2008 9:15 AM (GMT -7)   
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
 
fibromyalgia, arthritis, mitral valve prolapse
 
Fix your thoughts on what is true, and honorable, and right, and pure, and lovely, and admirable.  Think about things that are excellent and worthy of praise.  Phil. 4:8
 


Sue2z
Regular Member


Date Joined Jul 2008
Total Posts : 368
   Posted 8/3/2008 5:56 PM (GMT -7)   
I am so glad someone else is there who can say no its not constipation, sick of telling docs there is no muscle movement.  Take tons of laxatives, hate it.   Will have to see  a gastro guy eventually, yet another specialist to add to list.   What laxative do you use.

Marlee2
Veteran Member


Date Joined Aug 2007
Total Posts : 6067
   Posted 8/3/2008 7:00 PM (GMT -7)   
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
Forum Moderator Fibromyalgia
 
Fibro,Sjogrens, Anxiety, Gastroparesis, IBS, Gastritis, Allergies, High Blood Pressure, Low Blood Sodium and Osteoarthritis
 
Amitriptyline, Celexa, Xanax, Synthroid, Zyrtec, Micardis, Spironalactone, Tylenol, Reglan, Lidoderm Patches and Tramadol
 
Co Q 10, Super B Complex, Extra B12, Multi vitamin

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