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I'm feeling lost... I'm feeling lost...

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  #1  
Unread 06-29-2001, 06:52 AM
I'm feeling lost...

Dear Sisters ~

I guess I am really feeling lost these days. For those of you who listened to me whine, you may recall I was trying to get an RX from one of two internists I had been seeing since he thought an antibiotic might help with my bowel problems (overgrowth of bacteria). I have yet to get an RX or a second call back since he called when I was on my way home from work (naturally). I then called my other internist ONE WEEK AGO today and asked for some guidance as in can you help me or refer me to a specialist that could? I have heard absolutely nothing. I feel like since I asked for my records, I am forgotten, on that list of ex-patients they don't give a hoot about. I don't want to call a doctor who doesn't care about me enough to return my phone calls.

My question is where do I go from here? I am still having these symptoms (to name a few): A little shakiness, feeling hot most of the time like I have a mild fever, abdominal/pelvic pain and discomfort, headaches (5 days straight now), fatigue, arms and legs feel heavy and I ache all over, leg cramps/muscle tightness & spasms, and a feeling of weakness although I have not started dropping things a whole lot yet! I have other symptoms, but will spare you the details. I don't know where to turn. Look for a rheumy, go to my gyn, etc. or basically give up and try to live with the pain. I know climbing stairs at home just wears my legs out and I used to be in decent shape - note the "used to be" comment.

Any advice? As I have stated before, I do have Raynaud's Syndrome (sp?) and wonder about autoimmune diseases as I have a bottom line positive ANA, a positive EBV initially, high protein, high cholesteral, etc. I forgot to bring my papers with me so I can't recall it all. I did finally get my records from the other internist and that is how I found out about all of this - they never told me.

I need some advice dear Sisters - any and all is appreciated. If I don't respond right away it is because work is getting busy, but I will definitely get back with you from home this evening! Thanks again!
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  #2  
Unread 06-29-2001, 07:49 AM
An update...

Well dear Sisters, I have an update. My original internist just called (his nurse). She is a sweetheart and apologized that it has taken a week to call me back. I started to ask why, but let it go - heck, at least they still acknowledge I exist.

The internist does want to see me again - miracle! - and also had a note that he needs to refer me to a Rheumy. Maybe they are starting to see I need some help here. I am honestly really hurting. My pain goes from a chronic ache all over (with other pelvic pain, etc.) like I have the flu to shooting pain from sciatic nerve problems, etc. I just feel SICK. I wondered if I was nuts and all this could be hormonal, but could all these things be hormonal? I also wondered about the fact that they say some things like Fibro are brought on by environmental issues or tramas. I keep remembering my horrible experience with sick building syndrome. I literally thought I would lose a lung for about 6 months, eyes swelling shut, etc. My entire system was in overload. It makes me wonder.

Well, maybe writing to my dear Sisters has brought me some luck since the doctor did FINALLY call me. Maybe I'll get some answers one day.

Love, luck and loads of hugs!
  #3  
Unread 06-29-2001, 08:18 AM
I'm feeling lost...

Lisa...sending big 's your way...

I'm glad you are being referred to a rheumy. Alot of the troubles you are describing do sound like mine. Much of my pain is blamed on the Fibro, but who knows. I think a rheumy will be very good for you right now, and hopefully he/she will be able to help you.

I'll keep you in my thoughts and prayers my dear....
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  #4  
Unread 06-29-2001, 08:31 AM
I'm feeling lost...

ahh Lisa, sending you big

I can totally relate to your frustration, my gyn's office actually told me after referring me to the gastro guy that if the pain got worse NOT to call them, but my family dr.......how's that for cutting you loose?

I too have the shaky thing and am dizzy and have major pelvic pain and bowel symptoms.......I'm seeing a neurologist next week and a gastroenterologist the following......my family dr is 99% sure I have adhesions again, but won't refer me to a general surgeon until after I"ve seen the gastro........so all you do is go in circles

I think the rheumy is a great idea as alot of your symptoms sound systemic.......and I have had some of your symptoms when I've been not getting enough estrogen too, so it all gets very confusing , I know when I was getting TOO much estrogen and my BP was way up I had headaches every single day , so maybe there is a hormonal aspect to it?

Well now that I"ve totally confused you and worn out your eyeballs (sorry I can't seem to say anything in two sentances these days ) just know that we all support you and please don't give up, you deserve to feel well, we all do, we just have to hang in there
  #5  
Unread 06-29-2001, 09:08 AM
In my prayers

Hi,
Just want to let you know I keep you in my prayers. I'm glad you are going to a docotor who may be able to help you. You have suffered so much and it's time for you to find the path to healing. Vent when ever you need to. We are here for you.
Love, Light, Blessings
Druid
  #6  
Unread 06-29-2001, 04:49 PM
I'm feeling lost...

{{Lisa}},
I'm so glad your Internist called back! I also have Fibro and your symptoms sound alot like mine also. I hope seeing the Rheumatologist will help you get those answers Please keep us posted!
  #7  
Unread 06-29-2001, 05:58 PM
Thank You!

My dear sweet Sisters! Where would I be without you all? I am sincerely hoping that I am back on the right path again. So many times I have gotten my hopes up that THIS will be THE ONE who makes me better, and then I hit a brick wall again!

I really do think with the positive bloodwork, there must be more to it than STRESS. I think it is a combination of hormones, adhesions and maybe some type of systemic problem. I just hope the doc's can figure it out. Can anyone give me an idea of what to expect at a Rheumy's first visit? For some unknown reason, this really has me nervous. I guess because I am trying to prove I hurt when the wound isn't visible? I do have trigger points, etc., so I hope he/she believes me and won't think it is all in my head. If so, later doc! I'll find someone else I guess!

Thanks again so much for your never-ending love and support. I just don't think I have ever "met" a finer group of people than my dear Sisters! You are absolutely THE BEST!

Love, prayers, hugs, and happiness!
  #8  
Unread 06-29-2001, 06:32 PM
I'm feeling lost...

Lisa,
Sorry I'm late in getting here, but it's been a really hard painful day. I don't know anything about this particular kind of doctor but did want to stop by and offer my usual

One of these days you will happen upon the right who will give you some answers and get you on the road to painfree days again. can't follow you around forever

You are in my thoughts and prayers Lisa.
  #9  
Unread 06-29-2001, 07:35 PM
I'm feeling lost...

Lisa,

I can tell you that my rheumy's are my favorite dr's. I have more than one (but that's another story ) They are the least invasive...we get poked and prodded enough by the other ones right?! Don't worry, they are used to dealing with internal pain. I've found that a lot of questions are asked, so expect quite a bit of chatter. Bring in a list of your symptoms...very helpful. The exams that I have had in the past are done so quickly. Usually they examine the joints etc. Apply pressure to certain areas, and ask you if it hurts Even though you have probably had lots of blood work done in the past, they'll probably want to do more.

If you would like to talk more about rheumy's or anything else, please feel free to e-mail me anytime my friend
  #10  
Unread 06-29-2001, 11:46 PM
I'm feeling lost...

Hi,

I to have Raynaud's Syndrome(controled by medicine), and had mild fever from time to time, left sided abdominal pain, fatigue, leg cramps/muscle tightness & spasms. To name a few. I also had Endo and massive adhesions. and just had a TAH and removal or my remaining ovary and tube. By reading your note, I suspect you still have your ovaries. But I know since surgery, my symptoms have ceased. I did a lot of research into endo and found that many of the symptoms I was having was endo related, that is why I opted for surgery. You need to discuss this with your DR. Also somewhere along the line of my research, they have suspected endo is part of Autoimmune disease.

Good Luck
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