[rfoehl71]

Hi, and thanks - I have no support at home, and I need to let this out.

In August I started having major problems - severe nausea, vomiting, pain in the upper center quadrant of my stomach (yes, gallbladder, I thought thought that too). I can not eat solid foods or drink thick liquids; sometimes the smell of food makes me gag. I saw a ton of doctors, I was not able to complete a HIDA Scan (no cck due to no dye in the gallbladder), I also had no emptying during the gastric stomach emptying scan. A colonoscopy, endoscopy, upper Gi, and a slew of blood work were all fine aside from malnutrition. I am on short term disability from work (with 5 wks left of FMLA). I have a tentative diagnosis of gastroparesis. I'm going to lose my job and my husband is going to freak out.

This past mid-July I weighed 124/126 lbs. I was a healthy female with a muscular build (from when I could do yoga and ballroom dance). I also have Narcolepsy, REM Sleep Disorder, and arthritis (all WERE in managed control since 2005; after 9 years of misdiagnoses).

In April I was diagnosied with, and started treatment for, Fibromyalgia.

Recently (2 weeks) I learned there is damage to the nerves in my cervical spine, explaining the lack of ability with my dominant right arm.

I have started to back-off all my meds that are serotonin related (off Savella, off Nuvigil, off all GI related drugs, to see if one of them is causing this issue).

I only take my REM sleep meds because I have to or I can have a heart attack, stroke, seizure, etc.

I have lost so much weight I can't DO anything, I am too weak. I can't drive to the store. I can't take a walk. I physically cannot do anything.

I now weigh 100 lbs. (fully dressed) and am pinning up my pants (a girls size 12).

I have started to force myself to eat no matter what - but somehow I still am losing weight.

I keep getting shoved from doctor to doctor while my body is feeding on itself.

I have 0 body fat. My stomach is sunken in and all my ribs are exposed. I hurt all over. At 5'1-2" - how much weight loss is acceptable?

I am really starting to get scared about the weight loss and malnutrition. Can't the malnutrition damage major organs?

[Robert_325]

What are the drs saying to do about this? Honestly it's pretty tough making a diagnosis or tell you what to do soley based on what you've said alone. Have the drs told you to discontinue your meds or are you making that decision on your own?

You've had lots of tests by drs who I assume are internal medicine specialists? What have they said to do.? You shouldn't lose that kind of weight from Fibro. I have four autoimmune diseases myself including Fibro and I don't lose any weight from them. I fight to keep my weight down like most everyone else.

The gastro-related diagnosis sounds like what would be causing your weight-related problems, not the fibro. If you lose enough weight to cause malnutrition certainly that could cause serious problems. What are the drs doing at this point? They can feed you IV vitamins and nutrients if necessary before you suffer organ damage. God bless.

[Cats Meow]

At this point it appears you may be "grasping at straws", have you considered marijuana? It works miracles for some people, and it's side effects aren't all that unpleasant!

[rfoehl71]

Originally Posted by Robert_325

What are the drs saying to do about this? Honestly it's pretty tough making a diagnosis or tell you what to do soley based on what you've said alone. Have the drs told you to discontinue your meds or are you making that decision on your own?

You've had lots of tests by drs who I assume are internal medicine specialists? What have they said to do.? You shouldn't lose that kind of weight from Fibro. I have four autoimmune diseases myself including Fibro and I don't lose any weight from them. I fight to keep my weight down like most everyone else.

The gastro-related diagnosis sounds like what would be causing your weight-related problems, not the fibro. If you lose enough weight to cause malnutrition certainly that could cause serious problems. What are the drs doing at this point? They can feed you IV vitamins and nutrients if necessary before you suffer organ damage. God bless.

There is so much going somedays I don't know which end up.

The weight loss is from the GI issues - whatever that is. I've been referred to Temple to the Digestive Disease Center where there is significant waitig list.

I've seen multiple specialists in specific fields, (2) GI specialists, a surgeon, (2) rheumotologists, etc., I was in the hospital for 5 days Aug 27 - Sept 1; but they discharged me without the issue resolved (thanks to insurance). I've also seen, neurologists, neurosurgeons, you name it . . . I've been to Penn, Jefferson, and the best local doctors available here. When I was in the hospital my hair grew 4" and I left with a full set of nails - my hair is now falling out and breaking off, the nails are long gone.

I mention the other conditions because the medications for those conditions are suspect for causing some of the GI problem. My primary doctor and I have been working this problem for months, and are now tapering off meds with the thought I may have serotonin syndrome - most meds for my conditions affect serotonin levels. We are grasping at straws - we are at the end of line.

All my other diagnoses are now uncontrolled - due to not eating, weigt loss, etc., I am not sleeping and cannot drive. I am in more pain, and cannot focus or stay awake. Until we resolve my GI issue and I gain at least 10 lbs my other specialists can't help me - I am to weak to try to stabilize them right now.

I couldn't get in to see the Temple specialists until mid-November; which is why I am so concerned about the weight. I think my GI is passing the buck - handing this problem over to Temple. But can I afford to go there? If they put me in the center inpatient . . I don't even want to think about it. We just bought our first house - right before I got sick - it's terrifying for me and my husband.

I asked my doctor about IV feedings, and he said it isn't done that way unless I want to go to the ER every other day for IV, and I can't afford it financially at $250+ a visit.

But will I make it another 2 weeks with no permanent damage due to weight loss?

I'm considering calling the GI back and telling him what my status is - he referrred me to Temple, and forgot me promptly; leaving me and my doctor to hold onto the pieces until Temple steps in.

I do not want to let this tke my life away from me. I need to do something before it's too late and there is perm. damage.

So I guess my question is a hard one to answer, how much weight can I afford to lose, and how do I know if and when it is causing perm. damage?

[NikNak1]

Hi there. Years ago, due to an eating disorder I went down to 98lb...I'm 5ft 11, so I was really under weight. Thankfully I did not end up with any long term damage...well nothing that I am aware of anyway. The thing is it's very difficult to say when damage that will be long term will happen. Everyone is different. Certainly my body was under a great deal of stress. Make sure you take vitamins and that your water intake is good. I really feel for you having to go through all this. I hope you get this problem resolved soon. All the best.
Niknak

[kathleen5hockey]

If the doctors are baffled go to a holistic doctor. Yrs ago my son had stomache problems, the doctors couldn't figure out why. The holisitic dr. found that he was lactose intolerant. Easy fix. The holistic dr. work with your body and mind. I found it really interesting that she would ask about his dreams, etc. Just an idea.

[sunnidaze]

God, it's horrible!

Robert's advice and questions are on point. Very good need to know info.

My first thought was a Rheumatologist. A GOOD one. One who is active and current and dedicated.

Are you saying one thing is swallowing difficulties? I took Fosomax for a couple of years. I had 4 surgeries to open the entrance to my stomach as it had shrunk to the point of avg size pills to get 'stuck' and felt like I was going to die! It was so unusual that it really 'sneaked' up on me. I still need 2 surgeries more to stretch the opening to make the 'hole' larger by stretching and letting the scar tissue heal thus allowing the opening to be large enough to be acceptable, not normal, but a lot better than a less than dime size entrance.

For almost 2 years, I have been living off Ensure, and soup or puree' foods. I have to crush or cut almost every med I swallow. I really thought I could get by without the last 2 operations, but since it has gotten worse, I will talk to the doc about it at my next appt.

This is common NON Usual side effect of Fosomax! Boniva has some side effects too, but the majority of people don't have these problems, so even tho' I know this risk, I would have chosen to take it but be alert for issues that the side effects are listed on both meds.

You may not even be old enough to be taking this, but since your symptoms are so similar to many of mine, I thought it was worth mentioning.

I have been dealing with RA and Fibro and a litany of other issues for at least 18 years. Since my husband passed away 7 years ago, stress is so much greater. He was dependable and took it in stride and I was able to handle loads of things because he shared the load!
It is horrible to be alone facing so much. Don't give up no matter whose cage you have to rattle!

This country truly needs palliative care for ALL patients, not just Cancer victims. I'm convinced if we did our medical care would be less expensive with far faster results. UK and other coutries, even some 3rd world already have it. It should be covered under the Hypocratic Oath of "Do NO HARM". By denying treatment, harm is done.

God Bless you with wisdom and peace. I'm so very sorry you are suffering!
Sunnidaze
Disclaimer:
THIS IS MY PERSONAL OPINION ONLY. NOT MEDICAL ADVICE!