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kadejc7
10-27-2013, 04:30 AM
Hello all ! Where to start... For over 10 years I have experienced hip pain in both hips that would come and go. For about that same length of time I have experienced some cramping in my hands and chronic heartburn. I have always had very intense and painful periods. During these years I have chalked the pains up to growing old and working hard. About a year and a half ago I began experiencing some new symptoms. My hands now swell and puff on a regular basis. My hands and feet are extremely sensitive to cold (they do not turn colors). I have random joint pain that does not last long but is quite painful. It also seems to appear only at night or in the very early morning hours. I have been getting sores inside my nose that do not seem to heal or when they heal they come back relatively quickly. Over the last few weeks my nose has been extremely dry on the inside. This is unusual because our home is not dry. I have also been having horrible stomach problems since May. The my gallbladder was not functioning so they removed that but I still feel awful. I have all the symptoms of IBS. Alternating constipation, diarrhea, pain, extreme nausea, gas, bloating, stomach distention. I have been scoped, poked, and scanned and Crohn's and Colitis have not been seen. I am in pain every day with my stomach problems. I eat and have stomach cramping. I have completely changed my diet but the foods I eat do not seem to matter. I feel like it is my body is just not doing what it should be when I have a BM. I have very thin, flat and soft stools. I also have a "mystifying" upper right abdominal tenderness. None of my doctors seem to have an answer to this tenderness. It is always, 24/7 tender. CT and blood work have shown no flags. I will go through a period of 2-4 days where I wake up at 4-5am with horrible upper intestinal gas pain and pressure. Scale of 1/10 pain is a 10 or higher. I have no answers to the reason for that either. I also seem to experience fatigue regardless of the amount of sleep I get. I feel as if my pain tolerance has gotten much lower of the last few years. I have frequent headaches and all of this is much worse when I have my period. I feel like everything must be connected somehow. My mom has a connective tissue disorder with symptoms of Lupus, Raynaud's, and RA. My little brother has Ulcerative Colitis. I am so tired of not having answers. It is hard to explain to people and hard for them to understand. I wish I could find answers and relief. The Rhumy put me on Plaquenil and I feel odd taking it without a diagnosis. THe gastro I have been seeing is a local one but he seems concerned about my health and wants to help me. I experience stomach trouble every day, should I get a second opinion in the city? How long will it take for a diagnosis if the bloodwork is not super supportive? Does anyone else experience what I do?

ladybud
10-27-2013, 06:53 PM
So, welcome to the boards. You have an impressive family history of autoimmune diseases, and a lot of symptoms consistent with it too. What kind of testing have you had done? As far as the abdominal pain is concerned, have you had your pancreas tested? Pancreatic enzymes in the blood are not routinely done, but should be done, as there is an autoimmune pancreatitis that can cause severe pain and nausea. Have you had ANA tests done? Sed rate, CRP levels? What does your rheum say? He obviously thinks something is going on if he put you on Plaquenil, the usual first step treatment for lupus. If you could review your labs and post any abnormals that are flagged, it would help. It is very frustrating to feel so bad and have no answers as to what is wrong. Lupus can also cause hepatitis, which can cause RUQ pain, nausea and tenderness. That would show up as elevated liver enzymes on a chemistry panel. I hope you have been getting your lab results and if not you can get them sent to you by request and a records release form signed, so you have a copy and track what has been tested, what results are, etc.

kadejc7
10-28-2013, 01:47 AM
Hello and thank you for the quick reply! My doc claims the ruq pain is unknown to him but it is not an organ. I will have to ask for my bloodwork. The officer never seem to want to give up labwork very easily! My bloodwork shows no big red flags the rhumy says. I have a low positive ana and sjogrens markers. I feel as if I am nuts. All this pain and symptoms but the blood says I should very ok. My sed rates are always normal. I do not experience these "flairs" during normal drs hours either.

ladybud
10-28-2013, 04:26 AM
A positive ANA at any level, combined with all your symptoms, is significant, IMO. The statement that there are no "big" red flags would suggest there are some, and I would absolutely get my lab results and look over them carefully, comparing your result to the reference ranges and looking for any flagged as hi or lo. There may be several clues there that are just being dismissed. The question as to seeing another Dr in the city, does that mean you are in a rural or remote area? If yes, I would certainly consider a second opinion, perhaps from your nearest university hospital clinic. I would also get reports of any xrays, MRI, CT scan, etc. so you have copies to take with you if you see a new Dr.