terrible experience with doctor

[Radha]

i had a terrible experience with a doctor who came to my home to see me today, i was so devastated by what he said and how he dismissed me, i had been waiting for weeks for him to make a house call, and i had been so excited and thankful that he was coming to my home, but i was shocked by what he said, he's a rheumatologist, and i wanted him to give me something for the painful joint pain, but after seeing me, he just kept saying over and over how skinny and weak i looked and that this wasnt an arthritis problem, that i should see a psychiatrist and he thought i had an eating disorder coz of how little i was eating, i was in shock and said that there was no possibillty i had any eating disorder, that i wanted to eat so badly but how hard it is for me to eat, how many problems it causes, but he didnt beleive me and then he went to talk to my parents alone and i was so stressed out worrying that my parents might beleive what he says and admit me somewhere without my consent, well thank God they supported me and didnt beleive what he said, but i was still so upset, why cant these doctors just say they dont know? he didnt even look at my swollen hip, just kept harping on how skinny i looked, anyway thanks for listening, i dont know what to do anymore, which direction to go, i cant tolerate any abx, and too much pain, no relief, cant eat, cant sleep,

radha

[EarthMother]

Gentle hugs to you dear.

I was once hospitalized in the throws of what I now can look back and know was a bad POTS episode and I had two "experts" attending specialists and one of them was also convinced I had an eating disorder.

They just don't get it .... I would love to eat, but I felt SO nauseous all the time and my body just could eat well. The rapid weight loss, nauseous, and weakness are always my first signs of a bad crash. After reading more on this site the pieces of the puzzle fall into place. What a relief to now understand, I am not crazy. I was never crazy. Ok, I may be crazy but it has nothing to do with my illness -- that IS real. And I am not anorexic, I am not depressed, I am SICK. And my body is trying to figure out what to do to get back on its feet. Quiet literally.

Things that worked during the bad beddridden spells:

Warm salty drinks. Compression stockings. Magnessium. Tiny bites of food throughout the day instead of any large meal. I kept a journal of what I could do -- like sit up in bed unsupported for 1 minute. Then I noted when it was 2 minutes. Then it was ... can walk to the next room etc. It helped to write down the progress because it all seemed so small at the time I may have missed it.

Good luck to you on your healing journey. Don't give up. Your body is not giving up on you. Even though it may feel like that right now.

EM

[Gena]

I am soooo sorry for your horrible experience with the doctor. Don't let it get you down. Stay persistent. Earth Mother had some great suggestions. I don't know if you are taking digestive enzymes when you eat, but that may help you. Also, like Earth Mother suggested, just try tiny meals/snacks. Can you drink a liquid meal replacement drink like Ensure? When I was really sick and couldn't eat anything I would drink ensure, but just small sips over a long period of time b/c I couldn't take all of the sugar in it. YOu might be able to find some liquid nutrition that has low sugar.

Also, there are many natural products at a health food store that could work on your arthritic type pain, such as Wobenzym. It's great for reducing inflammation in the body. There are other natural COX-2 inhibitors products at the health market as well that work similar to pharmaceutical products like Bextra but without the bad side effects.

One other note to consier, have you been tested for celiac (gluten intolerance)?

Before I was dx'd w/ celiac several years ago, I could not eat anything, I had horrible weight loss and tremendous joint pain. The joint pain was awful and brought on by malnoutrition b/c my body wasn't absorbing the vitamins and minerals it needed due to the celiac. Once I went gluten free, all of that subsided.

I will keep you in my prayers that you find relief soon. I'm glad you have your parents for support.

[yogini]

that is so disappointing and ridiculous, too. he could have at least examined you before jumping to conclusions. it is great that you have such a supportive family, though.

when i read your post i thought of calypso's story from the other day about how she went to see a psychiatrist. the psychiatrist told her she wasn't crazy and got her an appointment with an endocrinologist. maybe a psychiatrist could confirm it isn't in your head and help you to see the right kind of doctor

[Nicole's Mom]

I have a friend who is a psychiatrist herself. When she became very ill with a systemic, "mystery" illness and dragged herself from doc to doc for help, she was told that there was nothing wrong with her and that SHE should see a psychiatrist. She was really sick, fatigued, very skinny, fevers, blotto cognition, etc.

Turns out that after 5 years of perseverence and being told many times that there was nothing wrong with her, she found a surgeon that was willing to do exploratory gastro surgery and this surgeon discovered that an intestinal operation done just 5 years prior to the onset of all her problems had been botched up. Her intestine was all twisted up and "stuff" had been leaking into her system. The twisted area was unable to be detected by a CAT scan which is why nobody would believe her.

Anyway it's a good thing this friend persevered in finding a doc who would listen to what she strongly felt was the problem.

Beverly