Hubby Is Ill Looks like Autoimmune Disease, Need Help!

Updated on June 09, 2011
M.U. asks from Tampa, FL
20 answers

Hi mamas,
My 28 year old hubby got sick 2 weeks ago with what looked like a stomach flu, but it is not going away and his doc suspects autoimmune disease. I am a basket case as I have little knowledge about what this means for him and for us (we have a very active 2 year old son). From the little I know, it is very debilitating disease and I'm afraid he will be disabled for life. We don't yet know for sure what it is, he is being tested for a variety of things. Does anyone have experience with any autoimmune diseases (he has joint swelling/pain and fever that comes and goes, also some GI symptoms) or living with a loved one with it?

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M.D.

answers from Minneapolis on

I have Lupus, there are some days that are bad but most days are good. There are some autoimmune diseases out there that you can take medication for the "flare-ups". Technically I am disabled (according to state and federal guidelines) but I don't feel like it most days. What has helped me out is I eat much better and I try to exercise as much as I can tolerate.

2 moms found this helpful
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L.L.

answers from Topeka on

What is he being tested for maybe others have it on here or cared for someone who has had a particular autoimmune disease.
I have Rosecea on my face it has its flare ups.My Dr. wants to look into Crohns disease & Celiac Disease I have already been tested twice for Lupus & RA.I know my depression mimincs lots of auto immune diseases.
It does no good to worry take it day by day my hubby has no worries how he lives like that i'd like to know me i'm a worry wart & have to get to the bottom of what ever is ailing me.

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S.G.

answers from Norfolk on

Please make sure he is tested for Lyme Disease. It has been called The Great Imitator because of it's ability to mimic many other conditions.

MS, lupus, and other autoimmune diseases wax and wane. You've already experienced some of that with the "come and go" nature of the joint pain and fever--so he might seem fine for days, weeks, or months. What he wants to protect against is deterioration of his health. You don't want to be in a situation where he is declining, then bouncing back, but never really bounces back all the way.

So the first thing he needs to do is reevaluate his diet and make sure it is full of real, clean, unprocessed foods. Prepackaged and fake foods are poison to the body. He also needs to have a good exercise regimen. I would recommend yoga because it can be easy on the joints and allow him to emphasize the mind-body connection.

Your job is hard. You need to be supportive and probably bear a burden you weren't prepared for. There may be days where you feel like his needs are sucking you dry. And some conditions can cause mood changes. If he lashes out at you, try to remember that he is probably taking out his anger and frustration out on you because you are his safe haven.

And finally, educate yourself. You must be your own health care advocate and not rely on any one doctor's opinion. If you believe a test must be done, or a lab run again, or a treatment attempted, stick to your guns.

Most of all, I hope everything is fine with your husband and he just has a stubborn flu.

6 moms found this helpful

R.R.

answers from Los Angeles on

Both I and my sister have autoimmune diseases, I have fibromyalgia and Irritable Bowel Syndrome, she has diverticulitis. My daughter also has diverticulitis. It can be very frustrating and scary at times, but the fact that they are trying to come up with a diagnosis after him being ill only 2 weeks is a blessing, most often it's a process that lasts for years. The earlier he is diagnosed, the sooner treatment can begin.

Autoimmune disorders do not go away, treatment is to minimize symptoms. What will be involved is learning to cope on a daily basis, since there will be good days and not-so-good and downright horrible days. (I'm sorry, I am not trying to scare you but prepare you.) He may develop clinical depression, a common symptom and quite understandable. Make sure he gets treatment for that as well. I don't know which autoimmune disorder they are suspecting so can't be specific, but do try to get him into a support system or group for his disorder, whether online or a place that has meetings. Talking to others who have the same disorder helps immensely. There are support groups for people living with those who have autoimmune disorders as well, so take advantage of them for you. Diet, exercise and reduced stress are very important to his feeling good, too.

If his problem is caught now and treatment lessens the symptoms he may be able to work for some time. In the event he eventually becomes permanently disabled he can then apply for state disability.

Here's a link to an article about autoimmune disorders:
http://www.nlm.nih.gov/medlineplus/ency/article/000816.htm

And here's a link to living with an autoimmune disorder, at the bottom of the article are many more links of helpful information.
http://www.everydayhealth.com/autoimmune-disorders/unders...
You can do an internet search on the specific disorder the doctor suspects, as well.

Above all your husband will need your love, support and understanding, to know you're in his corner. This doesn't mean you neglect yourself, though, because your role as caregiver will be stressful at times. I care for my elderly father who has kidney failure, so I know firsthand. Your son will grow to learn that Daddy isn't feeling well at times, but that doesn't mean they won't be able to still have lots of fun together, they will!

Please private message me if you have any specific questions, I'd be happy to help.

God bless<3

4 moms found this helpful

E.B.

answers from Seattle on

I have Celiac. It is in the autoimmune family....Before I knew what wsa going on, I had lost weight at a scary rate. I am talking almost fifty ponds in three weeks. I was sick constantly. My Doc kept telling me she thought it was my Thyroid. She never even thought to check me for anything else. My Thyroid kept coming back fine though!

Anyways, I went to a naturopathic Doctor, who tested me for Celiac...as well as many other things. Turns out I was slowly killing myself with what I was eating. Once I got replenished on my new diet I feel amazing. I can eat Whest/Gluten, Refined White sugars and any type of soy...Makes shopping scary sometimes. I have my few staples I eat regularly..and then I change up the raw stuff frequently to keep things interesting:)

My little sisters HS sweet heart had been diagnosed with Celiac as a baby. His is life or death. He can not eat anything that has been close to Wheat/Gluten. He made it into college with a soccer scholarship and is a thriving almost 21 year old.

I know you dont know what you are dealing with. The first couple of weeks with the news will be very hard. Most autoimmune issues can me dealt with well. You will have to maybe change the lifestyle, but anything to make him more comfortable is worth the change.

Make sure you are as educated on what the find. Knowledge is power with dealing with this stuff. You can know exactly what to expect...what you can do to help out in making him comfy..and he will probably appreciate you being so involved.

My husband is still trying to fully understand Celiac. He is just now learning to like the foods I can eat. For along time I had been buying, making and preparing two different meals for our house hold. It has gotten old. Very very old...I stopped buying more and more of the stuff from his list because the kids had even gotten to like what mama was eating.

Now that he is making the effort, I feel like he understand ME. So, the more you can learn about your husband issues the better off the two of you will be. Just make sure you are there every step of the way. He may go through alot of emotions with this. He is gonna need you to be his rock.

Updated:) My MIL has Fibromyalgia(spl)...She was diagnosed about six months ago. She has very very bad day and then she was times that you would never guess she is in pain. They can do wonders with natural and man made science/medicine these days. Not to mention, they can get him into some sort of PT program, so that he is staying in shape and living the best life he can.

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A.F.

answers from Fargo on

M.,
There are myriad auto immune diseases. Type 1 diabetes (which both of my children and husband have), rheumatoid athritis, lupus and celiac disease(gluten intolerence) are a few of many.
You need to ask your doctor for more information to set your mind at ease. We live in a time of advanced medicine and alternative treatments and knowledge is power.
Hang in there! I hope your husband recovers completely and that you find some answers.

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H.B.

answers from Chicago on

The beauty of the internet is that we get a lot of great information quickly, the downside is that sometimes we get TOO MUCH information. As someone who has worked in the medical field and has many medical professionals in the family, try to stay away from "self-diagnosing" by searching on the internet. Many different diagnoses have similar symptoms and randomly searching the internet can literally make a person go crazy with anxiety and worry.

I would also highly suggest getting a second or third opinion. Two years ago my daughter was incorrectly diagnosed by a highly regarded doctor in our area with something that would have changed our lives completely. After a few days of mourning and worrying I got myself going and got a second opinion from some experts in our area and found that it was a completely wrong diagnosis and was actually something VERY treatable. However, if I had just gone along with the first doctor we would have been facing some seriously implications (amputation of my daughter's leg) because we would have waited too long to treat the REAL issue.

Please please calm yourself and get a second opinion. Then figure out a treatment course for your husband and adjust your life accordingly. Many families deal with different illnesses and get through. I would also suggest joining support groups and finding others that you can rely on during difficult times. BUT, first thing's first, get a definitive diagnosis and treatment plan... THEN worry about what comes next.

Hang in there!!!

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K.P.

answers from Seattle on

Auto immune diseases are so broad that looking it up on the internet can be scary, and confusing.

My father has MS (multiple sclerosis) and it damages the nerves in your body. He takes many medications to treat this.

My Grandmother has Hypothyroidism and Lupus.

I believe I have Fibromyalgia but it hasnt been completely diagnosed yet either.

What I am trying to say is there are many possibilitys here and all treatable but until the tests come back and show what it truly is theres no good in getting yourself all worked up if you dont know how to go about handling it yet.

Just try and be patient and everything will work out. Its really hard, believe me, but you have to wait it out and once you know, it will be easier to deal with because then you can start your research and how to go about it all.

Best of wishes

2 moms found this helpful

M.L.

answers from Houston on

Well, my dad had Leukemia which isn't totally an autoimmune disease, but it can be a lot and he was very disbaled the last 15 or so years of his life. He was also diagnosed when he was about 26. My mil has fibromayligia which is pretty difficult for her, but she still is able to have good days and live a very full life. So I have plenty of experience living with a loved one with a debilitating and painful disease. You just have to get through it and remain positive. And have a lot of faith and prayer.

Not sure exactly what life will be like since the diagnosis isn't known yet, but there are support groups that can help. Hospitals can offer counseling to help you guys cope and get through it. But it isn't the end.

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A.R.

answers from Minneapolis on

Well with the symptoms you listed, it sounds like Lupus. My sister has Lupus and suffers the same symptoms. But she is in no way disabled. She lives a normal life, goes out, works, and she is only 21 years old and also has kidney failure and does dialysis 3 times a week. I would take it easy til the doctors find out what is wrong and then go from there. Good Luck.

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J.S.

answers from Miami on

Autoimmune diseases are not that hard to heal from using alternative medicine approaches... I would use something like MMS (aka miracle mineral solution) to make sure any infection that was present is wiped out. Then use probiotics and immune system nourishing superfood supplements to rebalance the immune system. Aloe vera juice would be good to use also. Avoid any foods that trigger immune response/allergies - avoiding dairy foods, most grains, GMO foods, and other common triggers would be helpful at least until the disturbance goes away. You can consult with physicians who specialize in alternative medicine such as nutrition, oriental medicine, ayurveda, homeopathy, etc., to find solutions that regular allopathic M.D.'s aren't often taught about. Start researching on your own and don't assume doctors are experts at treating illness - it's great that they have a lot of tests to see what's going on but to heal/recover you need to understand the reasons why things are malfunctioning and what can be done about it to restore health.

1 mom found this helpful

P.W.

answers from Dallas on

don't panic. even arthritis is consider autoimmune. Wait and see what the doc says, then do your own research.

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N.B.

answers from Sarasota on

I would highly suggest finding a good acupuncturist. I have multiple sclerosis, and I have my husband( a licensed Chinese acupuncturist) treat me. I'm still working out 5x a week, so I am currently not disabled. Yes, my future may cause me some difficulties, but I could also get hit by a car when I am bike riding. Depending on what the diagnosis is, you can make smart decisions about your finances to ensure a secure future, but try not to worry.

2 things I would suggest for sure:

1. get him off processed foods, buy organic when you can, and when he can, take walks.
2. If he does not have a diagnosis yet, get all of your life, disability, and health insurance in order. Luckily, I had all the insurance policies in place before my diagnosis. No company will touch me now because of the MS.

It's a scary time. When I was diagnosed, it happened very fast, and from all the lesions on my brain, I thought I was dying. Our daughter wasn't even 1 yet. Remember to keep the communication open between you and your husband. Feel free to contact me if you have any other questions.

Good luck.

N.

1 mom found this helpful

P.M.

answers from Tampa on

My Mother has Lupus and Multiple Sclerosis, my sister has Lupus. It can react differently with everyone, but most of the time both my Mother and Sister can function quite normally but fatigue easily.

I'd not get super stressed, worried and anxious YET - wait for the diagnosis before you loose your head - but hopefully by that time, you'll have had time to process everything and can handle it better.

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C.K.

answers from Orlando on

Dear M.,

My heart goes out to you. But, might I suggest a solution?

A healthy immune system protects the body, and good nutrition is important for a healthy immune system (the integrated body system of organs, tissues, cells and cell products that protects the body from potentially harmful organisms, cells or substances).

I am a wellness educator for a whole food nutraceutical called Juice Plus+, have you heard of us?

Juice Plus+ provides whole food based nutrition from 17 different fruits, vegetables, and grains in convenient and inexpensive capsule and soft chewable form. Published clinical research indicates that Juice Plus+ supports several measures of immune function.

Please view the 11 minute video on my website www.vineripejuiceplus.com - a picture is worth a thousand words.

After you've watched the video .... let's talk.

My very best,
C.

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N.W.

answers from Miami on

Autoimmune diseases are not fun at all. I live with them. One thing that they are finding is that many autoimmune diseases are eased with Vitamin D. Apparently, people with autoimmune diseases tend to lack vitamin D. It's something genetic. Talk to his doctor about having his vitamin D levels checked.

When my doctor had checked mine initially, it was so low the lab wouldn't give an actual value. They just put <4. The doctor put me on a high dosage of vitamin D3. Afterwards, alot of my symptoms were relieved. Whereas prior to the vitamin D3, even though I had been on the proper medicines for years, I was still symptomatic.

There is a really great forum that deals with "invisible" illnesses. Thats an illness where you look completely healthy to other people, but in actuality you are really sick.

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S.S.

answers from Miami on

Get him on a good probiotic and build the immune systen with Juice Plus and other supplements.

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L.C.

answers from Orlando on

I have a fibromyalagia but I have been in remission for over a year and a half now (no meds) which is rare. I am in no pain now but when I was I had joint swelling and joint pain and now having some GI symptoms. With the autoimmune diseases when you have one you are proned to get the others like rheumatoid arthritis, lupus, celiac disease and more. Fibromyalgia doesn't cause the joints to swell but arthritis does and the rheumatologist was looking for me to develop rheumatoid arthritis so since the causes of fibromyalagia is unknown it is seen as an autoimmune disease because other symptoms develop like arthritis and ibs....it reminds me of when I read about people with HIV...they don't die from HIV but they die from other ailments because of a weaken immune system. I have been tested for EVERYTHING lately but negative and I am still suffering with extreme GI symptoms that I have to chalk up to another fibromyalagia issue. I guess since I have no pain and on no meds, it was going to get me one way or the other....LOL...but in all seriousness be supportive as he goes thru...symptoms do improve but flare ups do occur and most times the flare ups are worst then you ever seen. Good luck to you both. I wish you the best. God Bless!

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T.M.

answers from Philadelphia on

I have an autoimmune disease called IGA nephropathy. I will most likely need a kidney transplant. I take meds like diuretics and blood pressure meds to control the side effects of the disease. Somedays i feel ok and somedays not so much.

I am sorry for your husband and your family. I hope that it is something that can be kept under control. Please know that you are not alone. You guys are in my thoughts and prayers.

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S.W.

answers from Minneapolis on

There are MANY and varied diseases under the autoimmune disease label. If you google "autoimmune disease site:mayoclinic.com" you get a long list of diseases from the Mayo clinic site. You won't know what the effect on your husband's health could be until your doctor(s) complete their testing and come to a diagnosis.

Your husband has joint swelling/pain, fever, and GI symptoms, and your doctor suspects an autoimmune disease. And, I have a friend who's 9 year-old daughter had a severe rash over most of her body and that was ruled an autoimmune disease. She recovered within a week.

I would wait until your doctors finish their testing and you can research the specifics of what they conclude. Otherwise, this is just too big and scary.

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