By way of introduction....my story.

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nasalady
Veteran Member


Date Joined Sep 2009
Total Posts : 1176
   Posted 9/27/2009 3:01 PM (GMT -7)   
Hi, I'm new to this forum, not really new to fibro.

Just a couple of years ago I considered myself "healthy" except for this nagging back pain when I walked long distances. Well, I knew that I had Hashimoto's thyroiditis (my immune system has pretty much killed my thyroid), and psoriasis and asthma, but none of those were life-threatening or serious. My asthma and psoriasis are both quite mild.

Then I noticed the back pain getting worse and worse. I could walk for an hour, then I could walk for only half an hour, finally I could walk for only five or ten minutes then I HAD to sit down. I was also having strange muscle cramps in my feet, ankles, toes, and fingers, plus peripheral neuropathy, vertigo, blurry vision, and SERIOUS brain fog!

I was experiencing abdominal discomfort and bloating too....went to the doctor and asked them to run blood tests. My liver enzymes were through the roof! I was dx with autoimmune hepatitis in June 2008.

But that did NOT explain a lot of my symptoms, so I saw a rheumatologist and was dx with fibro (also June '08). Of course, that explained A LOT! I ended up in a wheelchair in late August 2008.

Over the next few months I was also dx with rheumatoid arthritis and celiac disease. Two more autoimmune diseases. :(

Now my rheumy thinks I have lupus. sad

Anyway, that's where I'm at right now.....waiting to find out if I have SLE or MCTD or what??

I take Lyrica and Cymbalta for the fibro, Imuran and prednisone for the autoimmune hepatitis (those two help with most of the autoimmune diseases, of course), atenolol and cozaar for high blood pressure (exacerbated by prednisone), Prilosec and Pepsid for GERD (exacerbated by prednisone), levothyroxine because of the Hashimoto's thyroiditis. And now Plaquenil for possible SLE.
Autoimmune hepatitis, Hashimoto's thyroiditis, fibromyalgia, rheumatoid arthritis, celiac disease, asthma, psoriasis, Reynaud's syndrome. Possible lupus and/or Sjogren's Syndrome - diagnoses pending.


dianna30
Regular Member


Date Joined Mar 2009
Total Posts : 90
   Posted 9/27/2009 6:57 PM (GMT -7)   
Wow!  You have quite a plateful.  Unfortunately, it seems like the autoimmune diseases tend to gang up on some people. 
 
In the last four years I have been diagnosed with Hashimoto's Thyroiditis, Multiple Sclerosis, Degenerative Disc Disease, Asthma, IBS-D, Migraines, etc. etc. etc.  Right now I am being seen by a rheumatologist who thinks I probably have fibro...I am just waiting for all the blood work to come back and rule out other problems. 
 
It kind of stinks that my body is falling apart, but the good news is that on this forum we can find other people who are falling apart like we are. :)
 
I hope your doctor is able to rule out lupus, that is a nasty disease.  Good luck and God bless.  

Be joyful in hope, patient in affliction, faithful in prayer (Romans 12:12).

http://diannaschnabel.blogspot.com/


Jeannie143
Veteran Member


Date Joined Apr 2004
Total Posts : 6056
   Posted 9/27/2009 7:20 PM (GMT -7)   
You two are having waaaaay more fun than most of us. I really like the way you both present things and move on... Your upbeat personalities will take you far. We can't always do much about our deteriorating health, but we can still try to stay upbeat. Thanks for sharing.
~ Jeannie, Forum Moderator/Diabetes & Fibromyalgia
I know God will not give me anything I can't handle. I just wish that He didn't trust me so much. ~Mother Teresa

"People are like stained glass windows: They sparkle and shine when the sun's out, but when the darkness sets in, their true beauty is revealed only if there is light within."- Elizabeth Kubler-Ross


nasalady
Veteran Member


Date Joined Sep 2009
Total Posts : 1176
   Posted 9/27/2009 7:39 PM (GMT -7)   
Dianna, you have a lot going on too! Thanks for your reply...it helps to know that I'm not alone. Yes, it does stink though, that we're going through this!

You mention IBS-D.....just a thought, but have you been tested for celiac disease? I was told I had IBS for decades, and it ended up being celiac. The main reason I ask is that you also mentioned that you have Hashimoto's, and autoimmune thyroid diseases are very closely associated with celiac disease.

The bad thing is that untreated celiac can actually cause other autoimmune diseases (see http://www.umm.edu/news/releases/zonulin.htm). I think if I had known 30 years ago and been gluten free for all that time, I would never have developed so many other AI diseases!

In any case, I hope all comes out well with your blood work!

Take care.....God bless you too!
JoAnn
Autoimmune hepatitis, Hashimoto's thyroiditis, fibromyalgia, rheumatoid arthritis, celiac disease, asthma, psoriasis, Reynaud's syndrome. Possible lupus and/or Sjogren's Syndrome - diagnoses pending.


nasalady
Veteran Member


Date Joined Sep 2009
Total Posts : 1176
   Posted 9/27/2009 7:41 PM (GMT -7)   
Thanks, Jeannie! I love the saying by Mother Teresa....so true! :)
Autoimmune hepatitis, Hashimoto's thyroiditis, fibromyalgia, rheumatoid arthritis, celiac disease, asthma, psoriasis, Reynaud's syndrome. Possible lupus and/or Sjogren's Syndrome - diagnoses pending.


crazykitty
Veteran Member


Date Joined Jul 2009
Total Posts : 4796
   Posted 9/27/2009 8:45 PM (GMT -7)   
Hi and welcome to the forum. If you haven't already make sure you check out the fibro 101
thread at the left hand side on the top of the page.

Sorry you are dealing with so many medical issues. You probably found out that you are a
stronger person than you ever realized.

I have fibro along with MCTD( scleroderma, lupus and RA). I am taking Savella and Flexeril
for my Fibro and Methotrexate for the MCTD. These meds have helped me but I am not
pain-free, I have learned to live a" new normal" life. Exercise is a must for me, if I don't my
musles become stiff and sore. Keeping active with family and friends helps me alot. I still
enjoy life and I try to take only one day at a time. I try not to worry about the things I can't
control. When I do become stressed I enjoy long relaxing hot baths. I do deep breathing
excercises too.

Wishing you the best of luck!

Robin
MCTD, Fibromyalgia, Raynauds, Osteoarthritis, Osteoporosis, Degenerative 
 Disc Disease, Hypertension, Migraines and Pseudothrombocytopenia MEDS: Methotrexate, Savella,Flexeril,Diltiazem, Boniva, Vitamins 


nasalady
Veteran Member


Date Joined Sep 2009
Total Posts : 1176
   Posted 9/27/2009 9:02 PM (GMT -7)   
Thanks for your reply, Robin. I've been wondering about MCTD myself, but we'll see. I'm glad you've found ways to cope with everything that's going on with you medically! :)

Take care, and good luck to you too!
JoAnn
Autoimmune hepatitis, Hashimoto's thyroiditis, fibromyalgia, rheumatoid arthritis, celiac disease, asthma, psoriasis, Reynaud's syndrome. Possible lupus and/or Sjogren's Syndrome - diagnoses pending.


Marlee2
Veteran Member


Date Joined Aug 2007
Total Posts : 6067
   Posted 9/28/2009 7:16 AM (GMT -7)   
Hi JoAnn and welcome. I was recently dxd with celiac after years of being told I had IBS, I guess you could have both. I've just been off glutens since the end of July and oh what a difference it has made. I also have sjogren's. It's a waiting game to see what the next auto-immune disorder will be. It seems many on here have auto-immune disorders along with fibro.
 
If you haven't read the fibro 101 thread, first on the first page, it contains lots of great info.
 
You will learn a lot on here.
 
luv and hugs
Marlee
 
 
Forum Moderator Fibromyalgia
 
Fibro,Sjogrens, Anxiety, Gastroparesis, IBS, Gastritis, Allergies, High Blood Pressure, Low Blood Sodium, Osteoarthritis and Celiac
 
Amitriptyline, Celexa, Xanax, Synthroid, Zyrtec, Micardis, Spironalactone, Tylenol, Reglan, Lidoderm Patches, Carafate and Prilosec
 
Vit D/calcium


dianna30
Regular Member


Date Joined Mar 2009
Total Posts : 90
   Posted 9/28/2009 7:48 AM (GMT -7)   
I love how active this forum is!  I am considering celiac disease as a possibility.  I kind of thought I would keep an eye on my diet for a while and see if I can find a trend that indicates celiac's.  I have read on other posts that people use Immodium AD to treat the IBS-D.  I think I will try that out and see if it helps.

Be joyful in hope, patient in affliction, faithful in prayer (Romans 12:12).

http://diannaschnabel.blogspot.com/


nasalady
Veteran Member


Date Joined Sep 2009
Total Posts : 1176
   Posted 9/28/2009 8:43 AM (GMT -7)   
Hi Marlee,

Thanks for your kind welcome...I'm looking forward to learning from everyone here!

I'm so glad the gluten free diet is helping you! It made a huge difference to me too.....my gastro symptoms and a lot of my neuro symptoms improved almost immediately. Hopefully you won't develop any more AI diseases!

I've been a member of the forum at celiac DOT com for quite a while, and a number of people there say that they ended up feeling even better when they went completely grain free. I'm just now starting that diet.....I do want my fibro and other conditions to go into remission and lots of people on the grain free diets (such as the Specific Carbohydrate Diet, Paleo Diet, etc) say that this is possible. There are very helpful blogs such as Elana's Pantry and NoMoreCrohns which have great recipes for cooking with almond flour and coconut flour.

Take care,
(((hugs)))
JoAnn
Autoimmune hepatitis, Hashimoto's thyroiditis, fibromyalgia, rheumatoid arthritis, celiac disease, asthma, psoriasis, Reynaud's syndrome. Possible lupus and/or Sjogren's Syndrome - diagnoses pending.


nasalady
Veteran Member


Date Joined Sep 2009
Total Posts : 1176
   Posted 9/28/2009 8:51 AM (GMT -7)   
Hi Dianna,

Yes, this is a great forum! :)

Regarding the possible celiac disease, I carried Imodium everywhere I went for twenty years, but all it does is mask the symptoms a bit. You might consider going gluten free for a week or so just to see how you feel...that's the best way to tell if you have a gluten problem!

Just a cautionary comment: it's non-trivial to make sure you're completely gluten free, just because gluten is a sticky protein which remains in porous materials like plastic and wood and hides in scratches in pots and pans. It's also hiding in foods and other products that you would never think of, such as soy sauce, seasonings, soups, even shampoo! There's a great blog post on "How to go gluten-free" at this link:

http://glutenfreegoddess.blogspot.com/2006/01/morning-after-diagnosis-that-is.html

Best wishes,
JoAnn
Autoimmune hepatitis, Hashimoto's thyroiditis, fibromyalgia, rheumatoid arthritis, celiac disease, asthma, psoriasis, Reynaud's syndrome. Possible lupus and/or Sjogren's Syndrome - diagnoses pending.


beanley
Regular Member


Date Joined Sep 2009
Total Posts : 124
   Posted 9/28/2009 2:48 PM (GMT -7)   
joann, welcome to the forum. thanks for sharing your story.
fibro, migraines, ibs

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