I feel like I'm dying

Sounds like fibromyalgia

I have Celiac disease and some of your symptoms were similar to mine.

I also suffer from an autoimmune disease. I have IGg and IGm deficiency. My my spine is squished and that is when I started having horrible pain. I was 47. I am now 57. I was not diagnosed with my autoimmune deficiency until I was 48. I always felt tired when I woke up my whole life. I now Have Fibromyalgia, pre-colon cancer (which has been removed) two months ago, acid reflux, low vitamin D, Pain in my stomach always. In the las three years my real problems started getting really bad. Every time I eat, I feel so full and so sick. I had trouble being constipated or having diarrhea. Mostly constipated. The worst of all of this is I now get super sick from eating so I don't eat much at all, but eventually I get sick from my food sitting in my system and not going anywhere. My biggest question and fear is; when I eat my temperature plummets to 94.5. When I eat I become very cold and sweat. I can't move and I slip into what I call a coma like state. I have been to so many GI doctors. They have all tried to help but no doctor seems to even comprehend why my temperate would drop so low. I can't work and I can't have a life, so of course I am very depressed. I ma in bed almost all day everyday. My thyroid is pretty normal but all my family has thyroid disease and take meds. for it. All my doctors say I am not in a level that would need thyroid meds. My thyroid is 3.5. My hair is falling out too. Is this going to continue to just be my life? Anyone have any ideas? I would be so grateful.

Hello @hanark0068

I see that this is your first post with Mayo Connect and I'd like to welcome you. You certainly have some distressing symptoms and I can understand your concerns.

If you are comfortable sharing more, please share the following: What type of specialists have you seen? What sort of tests have you had for the digestive disorders (Endoscopy, etc.) Have any treatments been offered? Have you considered a second opinion from a large medical research center like a Mayo facility (Mayo has clinics in Minnesota, Florida and Arizona) or other medical schools?

@srodriguez Hi, my friend. So much compassion for where you're at with you Light Chain Amyloidosis. Like me, you may well have Multiple Myeloma, or Gelsolin, of plain old Amyloidosis Light Chain. We have about the same signs and symptoms. And so do 4 of my sisters, and a fifth and her daughter have died of it (sudden heart death) And some other nieces, etc. Now, if you have Gelsolin, it is perhaps one of the slowest cloning autoimmune protein dyscrasias around. It often begins to be really noticed about age 50, or thereabouts. I am now 78, and mine is really hitting heavy now, but I am still looking at the green side of the grass. So what is it? First, it is primary and autoimmune. Started with your conception with a single protein from your parent's liver into their semen or egg, not with something else. Second, it is systemic. After the single cell clones itself a couple times, it dies in 2-4 hours, then deposits itself in ANY tissue in your body. Thyroid, brain, toe, skin, whatever. Third by the time you are 50 or so, it is dumping dead fibrils (little tubes made of dead pieces of proteins and filled with water) in your thyroid, brain, heart, wherever. Four, it will kill you if you don't die of something else first. A jealous lover. Car Accident. Almost any illness you have from this point on can be traced to having some mutation of your Amyloid in your body. There are some really good signs for the doctor to spot. You have some already. IGg and IGm deficiency. spine is squished. horrible pain. diagnosed with my autoimmune deficiency. Every time I eat, I feel so full and so sick. This is called early satiety. Anyway, the rest of what you show all fits. Now, there are new meds coming in just now to help slow down the progress and extend your life perhaps. Look up the Amyloidosis Foundation amyloidosisfdn.org on the net. or look on various sites. Find a top 1-AAA clinic and go there for diagnosis. Finally, most of my record is found, free, at https://bit.Ly/1w7j4j8 "Amyloid and Old Karl" The safest format is .pdf, and almost any computer can read it. But most of all, enjoy your life. You may die suddenly this afternoon when the fibrils get into the nerve between you brain and your heart. But, and more likely, you may live another 40 years. Watch Dr. Martha Grogan's videos on Mayo, both the patient and the Dr. sides.

Thank you Karl so much. You have given me more information in just five minutes than any doctor I have ever seen and I have been going to doctors here in Boston for more than 40 years. I will look up all the information you have just given me. I'm not happy to know this could be my end but I am happy to know what is happening to my body. I use to be a very active and a very happy person and then, one day I literally just went down and never got back up. I have one daughter and she too has the IGg deficiency. We just learned this. My mother is 80 and has Leukemia and hemolytic anemia, which they claim she is now dying from. She also has IGg deficiency, So everything you have just told me seems to be right on the money. Thank you again Karl.

I have had three upper endoscopy and four colonoscopy. No treatment has been offered. I think it's time I go to a place like the Mayo Clinic for real diagnosis. Thank you for the welcome. I appreciate your help and interest in my medical problems.

Thank you Mary but my B12 has been checked and it's perfect.

I do have celiac and I am vigilant about no gluten and it's not hard because I can't eat. Karl has hit the nail on the head. My condition is serious. He says I have Amyloidosis and my husband and I feel he is 100% right. I have a confirmed diagnosis of fibromyalgia. Immune deficiency, arthritis, and so many other things that only a really severe diagnosis is going to be right at this time. I have spept at least 10 years going to doctors and they agree I am very sick. It has been documented that all my relatives have some for of autoimmune disease and some form of cancer. Thank you all for your help.

Yes, That's been an official diagnosis now for me for ten years. I get meds. for that. and my lower back pain. My disc's are degenerative and continue to degrade but that's such a tiny part of this picture. Thank you.