My tears led me here

Hi all. I am new here. I stumbled across this site last night, after I took a sleeping pill that, of course, did not work. My name is Linda R. and I live in NJ, USA. Oh my, where do I start? I have had abdominal issues for 10 years and only when someone mentioned auto-immune could be the cause did I even consider it. I was so naive and thought that if something was wrong, the doctors would have found it long ago. Silly me! It was only within the last 30 days when a nurse mentioned in passing that an auto immune, like Lupus, could be my problem did I even consider it. I am about 80% sure I have Lupus, but blood work shows nothing.

I had a gastric bypass in January 2007 at a weight of 317 pounds. That’s when all the problems started. I had multiple ulcers: 3 H-Pylori ulcers, one perforated, infections, 4 laparoscopic exploratory surgeries, gastric bypass revision (to cut out ulcer), I have GERD, an ulcer in my esophagus that will not heal. In November 2016, I had surgery to remove the T9 & T10 nerves which were strangulated within my abdominal wall. After the surgery, I was still having difficulty swallowing and I was exhausted all the time and had such inflammation that I had to go on Celebrix. I went to a podiatrist for SEVERE bone spurs on both feet. After 9 months of treatment, they are 70% better. Esophagus motility study showed a problem, but more extensive testing then said it was fine. I have difficulty swallowing, I am nauseous all the time, food gets stuck no matter what I eat. I cannot swallow any uncoated pill. In June 2016, I insisted on blood work which showed a low Hemoglobin (11.0), VERY low Ferritin Serum: 12; low MCH: 25.5, low MCHC: 29.6, high RDW: 15.5, VERY low D3; 25-Hydroxy: 5.7; B12, still within the normal range, but very low for me: 329 & B6, close to the bottom end of the range: 6.9. That was in June 2016. I had an iron infusion in August, but will need another one in 3 months (according to the latest labs).

My D3 is up to 10.3 (if you can call it that) and that is with taking 2,000 IU drops every day.

My fingernails are horrible. They have been peeling for months. On EVERY finger, I have a large white band with a dark pink small band below and above. They all have pits and ridges. I only have a lunula on my thumbs, all others are gone. My toenails constantly turn blue. In September 2016, the big toenail on my right foot split and half of it literally feel off.

I wake up with a migraine EVERY day. My bad cholesterol was never an issue, it is higher than my husband's and I eat very healthy, he eats anything and everything that is fried. My blood pressure is constantly going up and down. It is either 110/70 or 170/100. My heart constantly feels like it is going to jump out if my chest.

I am always dizzy and my vision gets really blurry by the end of the day. I work 55 miles from home and by the time I get home from work, all I have the energy for is to crawl into bed, but when I do, I cannot fall asleep. On those lucky nights when I do, I wake up after 2-3 hours and am up the rest of the night.

I had a bone density scan last week and diagnosed with osteopenia. Before my surgery, I had one compression fracture in my spine. Now I have 2.

I have thrush in my mouth which will not clear up, despite 3 rounds of Clotrimazole. I have at least 6 mouth ulcers any given day and my mouth and lips burn so bad I literally cry.

Slowly, over the past few weeks, my symptoms began improving. PCP ran auto immune testing, but got a call yesterday that everything was normal. I am thinking that since my symptoms were going away, without explanation, is why labs came back ok, but do not know for sure yet what was even tested. I will probably have to wait until April 7th to get a copy of the labs. NO rheumatologist will even set up an appointment without a doctor saying I need to see one, but since labs came back ok, the doctor refuses to do anything.

I always have a red nose and cheeks and constantly break out in an awful rash that is so itchy that I would rather die than deal with it. I have awful psoriasis on both elbows, but my right is worse than my left. I should buy oatmeal creme by the case. I use neosporin ointment 3 times a day to avoid infection from scratching.

I see a psychologist for severe depression, but I can't take it anymore. I want to live more than anything, but I no longer want to live like this.

HELP!!!!

Pretty please. I need to know it is not all in my mind and that I am not a hypochondriac. I feel so alone.

Linda R.

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9 Replies

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  • Linda, my heart is breaking for you. This isn't the site I normally visit but have found I can learn a lot just by wandering around. I'm normally at GCA/PMR...not a fun auto immune disease to deal with either. I only know a little about Lupus....it must be tough to deal with.

    I've had several exceptionally bad days so can empathize. Actually, have gone down hill health wise for the last couple of years.....some days I want to call it quits. Try to count my blessings....however dealing with constant pain and having been bedridden for the last three weeks is taking it's toll. Doesn't help that I'm just not normally a positive person.

    You definitely aren't alone. There will be better days ahead for both of us.....

    Will be praying for you, CJ

  • Linda, perhaps going to the Lupus forum would put you with people who would understand more about your situation.

    CJ

  • Thanks so much. I also posted in the lupus community as well. Just finding this site has been a godsend. I do not know if I have lupus or if psoriasis could be causing everything, but finding this forum has given me hope simply by knowing that someone understands. My prayers have finally been answered.

    Praying for you! Linda

  • Despite all your conditions you can still breath. When I cannot sleep it is because my mind is busy and my breathing is rapid. I slow my breathing down and think as I breath "In Out" In Out repeatedly and that is so boring I fall asleep. If I wake up again I just do the same trick. I hope it will work for you.

  • So sorry you're going through such a tough time. The symptoms you're describing aren't simply down the psoriasis and getting a full blood work done will probably only give a indication. Lupus was mentioned to me but the antibody tests have been negative on reading up there is no single blood test that can give a 100% diagnosis of Lupus so is there a way you can convince your dr to refer you to a specialist to look at your symptoms holistically?

    I hope you get some relief soon.

  • Hi, There would be no problem taking 10,000iu of Vitamin D to bring your levels up more quickly. Then in the summer months drop back down. Look up Vitamin D dosing,; 2000 is not a lot.

  • Has psoriatic arthritis been considered as a possibility? One of its quirks is that blood work appears normal in about 50 percent of patients.

    Many PsA patients have been made to feel like they are hypochondriacs!

  • Hello, Linda! How are things with you now? Give us a wave and a few words, won't you?

    Seenie

  • Got a positive diagnosis for psoriasis. Doctor gave me a topical ointment I use 2x a day and a shampoo 2x a week. It's helping a lot. Started blood pressure meds and am getting a stress test & echo Monday. Allergist did a diet test over passed 2 weeks. I'm waiting in his office now. He said I have intolerances but not allergies. Still looking to see if I can determine a trigger.

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