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Old 06-26-2006, 11:05 AM   #1
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Concurrent Autoimmune Disorders... what are yours?

Hi Everyone,

I've been battling aches and pains and fatigue my entire adult life, just thought that was part of getting older (I'm 35). In the last six months, the pain and fatigue have become HORRIBLE!!! My doc now strongly suspects fibromyalgia and 9 of my 11 trigger points are painful to the touch (only place not painful is knees).

Anyhow, when I was 30 this is when severe fatigue caused me to seek out medical attention. I was diagnosed with ideopathic thyroiditis and I was severely hypothyroid. I've been treated with levothyroxine ever since...

Then when I was 32, I started having excruciating, debilitating pre-menstrual pain... laproscopy revealed endometriosis. Endometrial ablation (both inside and outside of the uterus) and six months worth of Lupron put the endometriosis in remission.

Around the time I turned 29 or 30, I also started having bad digestive problems. Pretty much anything I put in my mouth except water, plain coffee, or tea causes me to BLOAT. I am fairly trim, so it's really obvious and I look 7 months pregnant after lunch and dinner. I have been through many doctors on this and there have only been small hints of what might be going on... for example, one EGD duodenal biopsy shows blunted villi, indicative of sprue. A second and third EGD biopsy only show mild chronic gastritis. Blood tests for celiac sprue - IgA (or IgG, or IgH, I can't remember) was mildly elevated. Serum pancreatic enzymes are also mildly elevated -- not the really high numbers seen in cases of clinically acute or chronic pancreatitis, but still abnormally high. However, taking pancreatic enzyme supplements with meals doesn't help. I've tried probiotics, special diets, cutting out all dairy and wheat... nothing helps. I manage this by eating several very small meals a day. I'm a grazer. This helps keep the bloating at manageable levels.

Also possibly linked to my pancreas -- I am very, very sensitive to carbs. I have reactive hypoglycemia. I cannot even have complex carbs for breakfast or if I haven't eaten for several hours, because if I do, a couple hours after eating, my blood sugar will drop really low and I'll have a bad attack of hypoglycemia. I manage this by eating lots of lean protein and only eating small amounts of carbs with a protein source. (Grazing again -- it really helps.)

I don't know if this is related or not to anything, but I'll mention it. I have attacks of postural hypotension 3 - 10+ times a day. It doesn't happen when I rise from a sitting position, but it happens almost every time I rise from a squatting position and will happen about 60% of the time when I rise from a reclining or prone position. I haven't passed out from it yet, but I've come close -- in the last few months my legs have buckled underneath me and I hit the floor, although I did not lose consciousness (just grayed-out).

I also occasionally have unexplained low-grade fevers. This happens maybe once every month or two and will last for 2 - 3 days. There aren't any other symptoms (like cold or flu symptoms) except worsened fatigue to go along with it. I just get a fever of 99.5 - 101 and feel totally wiped out. Occasionally my CBCs come back with elevated neutrophils and lymphocytes. Again, not the numbers seen with acute infection, but still abnormally high.

There's more...
  • In 1998 I had my tonsils taken out because they were always getting sore and infected (viral, according to my doc).
  • In 2000, I had a very complicated pregnancy and almost lost my baby at 19 weeks. I started bleeding for no apparent reason. When that resolved, I developed severe polyhydromnios and my son had fetal chylous ascites in his abdomen, which resolved within weeks of his premature birth. My other two pregnancies were textbook normal.
  • My gallbladder (and gallstones) were taken out in January 2001. In fact, it was my gallbladder surgeon who found my thyroid problem, bless him.
  • I also had a very large Morton's Neuroma removed from my right foot in October 2001, but that was probably related to my running and really wide duck feet.

Eek, I'm only 35, I have always lead a very active and healthy lifestyle, eaten right, and tried to take good care of myself, and I feel like I have so many ISSUES!!!!

So, to sum it up, I have or had:
  • Chronic viral infection of tonsils (before tonsillectomy in '98)
  • Gallstones (gallbladder removed 2001)
  • Thyroiditis/hypothyroidism
  • Digestive problems (BLOATING) and weird mild elevation of serum pancreatic enzymes
  • Endometriosis
  • Reactive Hypoglycemia
  • Postural hypotension
  • Pregnancy problems
  • Unexplained, infrequent fevers.


What other wierdness do you have along with fibromyalgia? Please share. I would like to know that I'm not the only one!!!

Thanks in advance -- the time you take to read and reply to this message is GREATLY appreciated.

 
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Old 06-26-2006, 09:18 PM   #2
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Re: Concurrent Autoimmune Disorders... what are yours?

i have fibromyalgia, also hypo thyroid, i am also anemic, i have a high rate of protien in the urine, 395 plus blood in the urine. my kidneys are failing and i have an appt with a kidney specialist on aug 1. my feet are swollen and hurting like hell, the ortho doc says that its just inflmmation and i'll be getting an MRI on them on wed. i have gained weight like crazy. i always used to weigh 122- 125, now i weigh 154 and no matter what i try, the weight wont come off. the weight started coming on like maybe 2 yrs ago. do you think i have some autoimmune disorder? or several? do you think they live off each other or is it all just one huge AUTO disorder? any answer would be appreciated, thank. plus the fibro i am constantly hurting all day long. the pain pills (lortab and soma) work only enough to take the edge off the pain. ive had a total hysterectomy donek , plus have pain everywhere in my body, any help would be appreciated. thank you,
jen

 
Old 06-27-2006, 01:22 AM   #3
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Re: Concurrent Autoimmune Disorders... what are yours?

By no means are you the only one. Not even close. But I know sometimes that's how it really feels. It helps to have friends/family who also have ongoing health problems, well, emotionally it can help in some ways.
When I was 3 days old I almost died. I was sent to another hospital about 40 miles away and kept naked, under oxygen, under a bright light and in front of a window...(my Grandpa hated to naked and in front of window part). According to my Mama, for several days everytime they took me out from the oxygen I turned blue. She isn't really sure what happened to make things better, she didn't used to ask may med. questions. I wasn't premmie in size or weight or timing, so they decided that maybe I had thrown up while lying on my back and it went back down the wrong way.
By the time I was 5 I had pretty bad intestinal problems. I started at the local hospital & dr., moved on to one in the next town and wound up and UTMB in Galveston, off and on until I was 7 or 8 All this time drs. were telling my grandparents (they raised me) they I was going to die, they just didn't know how long I might have left. When I was 11, they did a colonscopy, (And no, they don't hurt, you're knocked out, thank God) did a biopsy and decided that whatever the problem I'd had, was cured, whether it was Crohn's or Colitis. At age 13 all the gut pain and bleeding was bad again. I went in that July and except for I think 3 visits home, I stayed until the end of July the next year. I was on prednisone, 85 mg a day for 5 months, in the 5th month they started taking me off of it. The side effects I got from it were: cataracts, kidney stones, moon face, hair falling out, hair growing on face, buffalo hump, (that's where you're back and neck meet), I went from 85 lbs. to 145 in 3 months, I wasn't eating at this time, strictly IVs and some water, it also weakened my bones to the point that I had 5 fractures in my lower back, the only 1 who found that was the head bone dr. The drs. in the pedi wing couldn't see it, I was told that if I'd had 1 more fracture I'd have been paralyzed. And because of the sudden weight gain, I now have stretch marks over most of my body. Most are at least 1 inch wide, some are more, 1 on my back goes from 1 side to the other. I don't have any on my face, feet or hands, thankfully the ones on my lower legs and lower arms are small, I have a few heading towards my neck, but they only show if my shirt has like a lower like square neck. The drs. finally did an ilieostomy. I had begged them to back in Sept., they did it in 2 parts, 1 in May the other in June.
I started having arthritis pain when I was abut 7, it got back when I was 11 or 12 in my hips, luckily it was summer so no school, I had to crawl anywhere I wanted to go in the house or in our yard. After just a few weeks it was better.
Now I can say that I also have or had meningitis twice-viral, migrains,hight blood pressure, high cholesterol, ovarian cysts-1 so bad it pulled my left ovary and tube down and they had to be taken out, what they thought was endometriosis, but when ovary & tube removed no sign of it, fibrocystic breasts, allgeries, bronchitis more times than I can count, osteoporsis, -but didn't know it until I'd slipped and fracture an upper vertabra, chronic infections where they had sewn up my rectum-than was finally fixed in 2000, the infection had been sewn up in there back in 83 but no one knew it. I had 3 surgries there before it was found and fixed. Scar tissue grew and wrapped itself around my small intestines til nothing would go through, had surgry for that, broke bones around, thankfully not on, my right knee 1 year and now have problems from that. I had to have my teeth removed because they gotten so bad and weak-this was before we knew I had osteoporsis. Because of having only 1 ovary and tube and alot of scar tissue I haven't been able to get pregnant. Starting in 2002, I can move something, pick it up, shove it, or fall against something and I either crack a rib or 1 gets out of place. Then in I think it was 2004 I was finally diagnosed with fibro. I also have depression, ADD, and OCD. I have had more back and neck problems since rearended in Feb. starting more PT this week, and just this Fri. in the e.r. I was told I now have Thoracic Outlet Syndrome and I see my reg. dr. on Wed. for that, apparently he knows quite a bit about it, thank God.
I've had 12 surgeries, 2 were getting teeth cut out, some were major, some weren't so much.
And, believe it or not, since I first found this healthboard, between it and the one for pain mangement, I read other people's med. problems that make mine sound, at least to me, like I don't really have that much to complain about.
Besides this healthboard-which has been a life saver emotionally speaking, I have 2 other friends that are disabled and suffer from chronic pain with we recently found out was fibro and chronic fatigue and my Mama has fibro too. It really helps that we can moan & groan and complain and occasionally cry on each others shoulders. Others may not understand us too much, but I thiank God, we have each other.
You'll be okay, I figure that most of us with a variety of med. problems, were stronger than other people, we have our little pity parties sometimes, then we get up, do what we can, put off the rest and get on with our lives. It helps alot if we'll ask for help when we need it and actually have someone help. whether it be getting them to pick up our groceries or our meds., pick things up we can't or shouldn't, fold a few clothes or pick up take out for supper. Of course being open and communicating with spouse/loved one, about how we really feel, how we really hurt, things like that, that helps. The more we try to be brave and hide it all, the worse we'll feel. The more open we are about it all, the more support we'll get and the more help around the house too.
Sorry this is sooo long, just remember we're here, we care and we understand.
April

 
Old 06-27-2006, 01:12 PM   #4
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Re: Concurrent Autoimmune Disorders... what are yours?

Thank you for your replies, April and Jen.

All told, I think I'm in pretty good shape compared to some, but it's still frustrating to have these issues and have no explanation for it, and also to not be understood by anyone.

My fiance and I have been having some relationship issues lately, mainly due to my boys being normal boys (at least I think they're normal!) and not always listening to him the way he'd like. But they are good kids with good hearts -- they are never aggressive, confrontational, or rude. Sometimes they just don't do what is asked and don't always follow the rules. Again, very normal in my opinion.

I'm also mildly OCD and sometimes this is manifests in spending too much money to acquire whatever I happen to be obsessing about at the time. So, although I haven't brought financial devastation upon my family, I've done a little damage that can be fixed in a short amount of time, although being on short-term disability for the next six weeks will make this take a little longer. My fiance is also REALLY mad about that too. I absolutely HAD to take short-term disability because the pain was JUST TOO MUCH... I couldn't focus on work and it was a struggle to get through every day. Just trying to get through eight hours at my desk was not only physical agony, but an emotional nightmare too.

I worry so much that my fiance doesn't understand my pain. I am so scared that he's going to think I am just being a wimp and choosing not to tolerate what are normal aches and pains for the average adult. Whenever I talk about my neck pain, he starts talking about how he too has stiffness and soreness in his lower back and shoulders and pretty much just minimizes my feelings and my pain. I feel like its his way of saying, "I have pain too but you don't see me whining about it, going to doctors constantly, and taking time off of work."

The pain of Fibromylagia can be a lonely thing. Your joints aren't swollen and you don't have a traditional diagnosis that everyone can understand. You don't look sick on the outside, there are no swollen joints or obvious signs of illness or injury. No one that I know, except my mom (diagnosed with Fibro two years ago), can relate or understand. A huge fear of mine is that both my fiance and my employer won't understand what I am going through and think it's all in my head, that I'm just mentally defective or a big crybaby.

Again, thanks for your replies... it helps to know that someone out there understands.

 
Old 07-01-2006, 01:12 PM   #5
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Re: Concurrent Autoimmune Disorders... what are yours?

I think once we have one autoimmune problem we have several. It is like a cascading effect. I don't know which came first but I would guess the lupus came first and then the hashimotos (hypothyroid) then the fibro. Along the way I have had plantar fasciitis and thoracic spondylosis and some buldged discs. I also have antiphospholipid syndrome which means I had difficulty with my pregnancies and I am more prone to heart attack and stroke than a normal person. Yes it seems that fibro is bad enough, but our bodys do what they want and we just have to keep going. That's ok though, because that's what I do. Hang in there you are not alone.

Glojer

 
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Old 07-01-2006, 01:30 PM   #6
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Re: Concurrent Autoimmune Disorders... what are yours?

it really seems that way glojer. i had endometriosis for a long time, and finally had to have a total hysterectomy at age 26. ive had my tonsils out, my appendix out, breast cysts removed numerous times, i had surgery done because my scar tissue from the enometriosis, and hysterectomy done, it also had wrapped totally around my intestines and was giving me extreme problems.
i have thyroid problems (hypo), have had horrible TMJ problems, my kidneys are now failing, im having neurology problems, arthritis, and of course fibro. its like, when does it all end? when do all these doctor appts end?
are we destined to have health problems all our lives?
I try to make the best of it and take it one step at a time, sometimes tho they gang up on me all at once and its overwhelming.
my husband just tells me, remember youre strong, youve always made it thru each problem and youll make it thru these as well. He is very supportive, but it hurts to see him so tired all the time now.
he works the 3pm - 12midnight shift. yes, does housework, cooks, cleans, does laundry, and takes me for all the doctors appts, plus MRI's , testing, xrays, lab work, etc.
a few days ago had an appt, and he hadnt slept at all, he was falling asleep in the chair while we were in the room waiting for the doctor to come in. he never complains, but i could see how very physically exhausted he was.
but we also laugh alot, and i think that gets us thru the hard times, we also pray together and that bonds us even closer. i just wished he had a healthier wife, that could help him, a helpmate like a wife should be. but like i said he never complains, he truly is a gem and i thank God for him every single day. i dont know how single women who have fibro do it. i admire them so much for being able to continue fighting this thing and having to go thru it alone. that requires so much strenght.

 
Old 07-02-2006, 12:26 PM   #7
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Re: Concurrent Autoimmune Disorders... what are yours?

Jenetti, a prayer of thanks for your wonderful hubby, you are most fortunate. My hubby has always been a sweetie too, and I do admire the single women and single moms and all the moms with young children. I sometimes wonder how they do it.

I had forgotten about the hysterectomy (at age 32 for me) I am the adhesion queen so I know I probably have lots of things happening with my intestines. Nothing I need to worry about now though. Although I remember my hysterectomy took an hour longer than it should have and they had to give me blood cause I had so many adhesions from my 2 C-sections.

Doing the best we can and keeping on...keeping on is all we can do. That is what I like to do and intend to do and on those days when we feel like giving up, I think we can have a day of just relaxing and giving ourselves a break.

 
Old 05-30-2011, 12:45 PM   #8
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Re: Concurrent Autoimmune Disorders... what are yours?

I am not a doctor as you will see nor do I have any medical training at all but because my whole family is very sick, I have studied the genetics and connections with people for 19 yeas.

To begin with all of the neurological diseases are evolutionary. Science has proved that and they evolved many years ago just being passed from here to there. Each parent has a play in who you are so the amino acid sequence that cuauses one to be schizophrenic, may cause a sibling to have Anxiety or ADHD.

I can group the neurological disesase primarily Alzheimer's, Parkinson's, ADHD, Bipolar and Depression in the families of people with Fibromyalgia. I can also like Lupus and Endometriosis. This is not hard to do. Just ask 600 people with fibro to list their family tree.

In genetics, there are truly only a few genes inwhich illness occurs. The real issue is what caused it. Murine Leukemia Retroviruses are a big player I reather imagine...one day they will quit the polictical fighting over that and care what happens to us. And, the line of evolution speaks to H. Pylori bacteria, Leprocy, Syphilis, Malaria and Tuberculosis.
I know that the serum of most Fibros and CFIDS are H. Pylori positive and many of us have Micoplasm TB. Interestingly, Malaira is right in the line of these others and guess what that little creature can go to your brain. Did you know it has not been many years since Malaria was all over the USA? It is one reason the Tennessee Valley Authority was forned.

So what those do to our bodies is not about one label. Its about what the bacteria, virus or toxins DID to each cell in our body. Some will have endometriosis and fibro, others Lupus and fibro, others CFIDS and something else. and occasionally, like one nurse friend of mine, will have all of them in one big pot thrown in with a little crohn's disease, too. Depends a lot on who were Mom and Dad and what the people in their family had.

The only thing we cando, until they finally find what is happening and why... is treat the symptoms of each. I am sorry you have suffered so much. I wish you well days.

HOP

 
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