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459853 tn?1283144114

Seaching for an answer since 1997! Please HELP!

I'm going to try and make this story as short as humanly possible.... After I had my daughter in 1996 I slowly started to develop symptoms... First it started with stiffening in my fingers of both hands, then migraines. Then over the years the pain worsened in my hands and started in my knees, hips, and back. I was and still am CONSTANTLY tired, no matter how much sleep I get. Then over about the last 6 months, things have seem to have gotten worse. I am now having pains in my wrists, shoulders, hips, and knees, and when I lean my head back my chest bone feels like it pops (and you can hear it too) it's quite audible. Then when I have 'flare-ups', it seems like every joint in my body hurts, even the arches of my feet! My toes pop and my ankles hurt and burn to the touch. The I recently noticed a rash on my face over my cheeks and nose. I first thought it was from the cold weather, like wind burn, but it never went away. Some days it looks worse than others.It doesn't itch and there is no flaking skin like with dry skin....I'm including some pics to see what you think... I had an appointment with a Rheumatologist and she thinks all of this is Fibromyalgia but I think otherwise. I have a extensive history of arthritis in my family. And not to mention, it seems like I'm getting sick more often now.... I used to NEVER get sick....and with being sick comes bad flare-ups!!!!  The doc did a whole round of tests while I was there.... 6 vials of blood was taken and I had x-rays done from head to toe! I go back this Thursday for the results but the anticipation is really getting to me!!!  With the results, most of them came back on the high end of normal but my C-reactive Protein level came back almost double the normal level, and my SED rate came back also double the normal level. I have been dx'd with Sjogren's syndrome so far. Also, recently, with the rash on my face, there are days where my face looks like it's sun-burnt when I haven't even been out in the sun at all! Anyone have any ideas?
13 Responses
665125 tn?1273027524
I am not a medical expert, this is for sure....

But I think it sounds like you have Lupus, mainly because of the rash on your face.  

The other symptoms match up with some of the other autoimmune arthritis', but the rash along with the high SED rate is very typical of Lupus.

Since you have been suffering symptoms and flare ups for quite sometime, what meds are you on?  Are you on any DMARDS for the inflammation?

Good Luck;  Sonflower
459853 tn?1283144114
I was on Plaquenil for about six months but it didn't seem to work. I was only on 100mg a day. Then my doc put me on Prednisone 10mg a day and that seemed to help a good bit but I gained 15 lbs QUICK!
Avatar universal
I have RA and fibromyalgia.  I have had RA for 10 years that I know of. When I first found out I had it, it was because I was in so much pain in every inch of my body, even my baby toes were ailing with pain. I get the same pain in my collarbone, chest area. Also when the RA showed up and attacked my body I was bed ridden sick for almost a year. My immune system was 0 It creashed! I had none, it was bad!! At first it was real scary we did not know what was wrong, and I was only 28. My Grandma had Skleraderma ( a rheumatic disease) and her sister has Lupus, and her 5 brothers have RA. So it is in my genes. Is there anyone in your family that has any of those 3 diseases? OK so after having RA for like 10 yrs I was getting worse real fast just as you said happened to you. My rheumatologist diagnosed me w/ the fibromyalgia. He said it is VERY common with RA, it is like a sister disease. The pain is muscles and soft tissue. So that adds to the RA pain and makes pain so much worse. Now I have liver disease so I cant use any of the RA meds. They will kill me. My RA is progressing fast. You also can get a rash during a bad RA flare up, but I do believe that is more common in lupus. Now I have a paralyzed upper stomach, and now my esophagus is paralyzing too.......So I am being tested for the skleraderma, which killed my grandma. All 3 of those illnesses have very similar traits, so you need to be tested for each one individually. When my SED rate was so high and another inflammation test, then my Dr did a rheumatic profile, which came back pos and was crazy above normal high. I am on serious narcotics because besides these painful illnesses I have been in 3 major accidents and have a lot of nerve damage, disc damage, and spinal fractures that wont heal! On all the meds I am on, I still have days where I can't walk at all! If your Dr thinks you have the fybro why don't you try the new med leverica? My Dr wanted to give that to me, but my ins won't cover it. He said it helps RA and fibromyagia. You certainly should ask your Dr to test you for all 3 of those virus's because they are all very dangerous if not being treated. My RA has caused me cardiac damage! I also know that long term steroid use is very dangerous. It can  hide other things, other infections, and it has a lot of dangerous side effects. Usually you would use them for like a 2 week tx to get the inflammation down. Did you say you were going to see a rhuematologist? Ask for all the specific tests just for rheumatic diseases. I just asked my Mother she is a nurse and pretty darn good one too. She said the rash is more of a sign of lupus. Make sure you follow thru with all those tests and start proper tx because they progress so fast, like me because I cant take the meds. My RA has nearly crippled me in the last year. I live in Fl, and it gets cold here on and off. We had a week of like 30-40 degrees and I was bed ridden. It attacks my legs so bad. BUT also the fatigue, lethargy and such all comes with them too woohoo joy joy! I get sick all of the time. I mean I am always on something for something lol. I catch every virus/flu/cold and when I get sick I am 100Xs sicker then the average healthy person would get! I know that pain, I have places I hurt I never even knew could hurt, like my collar bone, my cheek bones and my jaw. It is top of the head to the bottom of my feet kind of sickening pain! The way I was diagnosed for the fybro was Dr squeezed my hands and top of my feet. I went thru the roof screaming! lol There is no test for that yet, so they basically are making an educated guess by symptoms. BUT the Rhuematic diseases can be diagnosed thru labs, and it is very important to know which one or ones you have. It is possible to have both. My immune system is so bad I started developing the symptoms of lupus, and or Skleraderma too..........So back to the Rhuematologist for me. I wish you luck, and hope that it is not any of them!! Please let me know. I am going for labs too soon to be checked for the other 2. I am less familiar with those tests and what they are???
Don't wait or let it get out of control like mine because my pain is barely manageable anymore.........
Good Luck and Much Peace
Jenn
459853 tn?1283144114
Thanks so much for all your input! It helped a lot! I have been tested for everything under the sun and all my tests came back either in the normal ranger or on the high end of 'normal'. .... There was several times were my thyroid was tested and it came back low then tested again at a later date and came back normal. The only things that came back out of wack was my sed rate and the c-reactive protein levels. They both came back almost double. I have also been tested for Lupus and the panel came back negative but my Rheumy decided to treat me for for Lupus. She said that she was going to treat it as a mild case, which  think there is a possibility of that. But the joint pain that I experience along  with the extremely dry eyes is not in line with Lupus, to me it's more in line with RA. From what I know, there were 2 of my grandmother's sisters that had RA along with my grandmother (so 3 in total). My mother, exhibited red, swollen joints, mainly in her thumbs. I do have bouts of extreme fatigue too. Like there are days where it takes everything I have in me just to get out of bed! I have also been diagnosed recently with calcifications in the bursae of my left hip, and it's becoming increasingly difficult for me to stand or walk for long periods of time. The majority of my joint pain is in my shoulders, wrists, fingers, hips, knees, ankles, toes and the arches of my feet (as crazy as that sounds).

I hope this helps... Maybe you can shed some light on this, or maybe your mom can for me! I have seen many different doctors and have received diagnosis from Fibromyalgia to RA to depression. I have been put on everything from Prednisone, to Lyrica, to Plaquenil, to Cymbalta! The only and closest thing that seems to help is the predisone but then I gained 15lbs in like 2 weeks from it so I stopped taking it and the pains came back with avengeance!
Avatar universal
I am putting everything in here because I do not know what is related.  It starts when I was 19 and became pregnant. I carried almost a month overdue and even with inducement never dialated. My cervix would not turn. At 20 my right ankle was so messed up from constant breakage and sprains I had to have it reconstructed and was suppose to do me left but never did. At 21 I had pneumonia for 6 months and kept bronchial infections for years. Arthritis also became a problem at 21 in my ankles, wrist, and fingers. Over the years I have fractured multiple bones and up until 2 years ago broke something 2 to 3 times a year. I have had breathing issues and chestpains so bad I thought I was having heart attacks. I have been sent to a pulmonologist who said my breathing was fine but I had arthritis in my breatbone. My breast still produce a clear liquid that comes out even though my son is now almost 11. I have had diareah since dec 2004 and not had a normal bowel since that date. I can go to the restroom up to 15 times a day. I pass mucus from my vagina as well as in my stool. I have had my gall bladder removed last year hoping that was the issue and it wasn't. My pancreas has shutdown but now working fine. I have chronic liver disease but the doctors do not know what caused it. Last year, my gyno did a laproscopy and found I have adenmyosis, hemmoraging cyst on both ovaries, fybrois cysts throughout the uterus, and a second working spleen. The second spleen is fully functioning but does not show up on a ct scan. She will not do a hysterectomy because of the second spleen. I have also had abnormal cells show up on my paps. We freeze the uterus for that. Most current problem is that in september I started hurting when I would have bowel movement. So bad I would scream, doctors thought maybe herpes, not that, so I went to an anal rectal surgon. She did her thing and found only yeast (candida) in my rectum. No bacteria, no bowel, no nothing and said it is a sign of leukimia. She admitted me because my potassium had dropped to 2.3. They got my potassium up and sent me to an infectius disease specialist. He could not figure out the problem either. Then the yeast went out of control and had yeast infection in my rectum, vagina, mouth, and skin. Oh also before that about 6 months I kept getting thrush. Back to recent, I then was not able to urinate so had to have a cathater. Then I started going numb from the waist down and unbelievable pain in my lower back (hips). They did a spinal tap and found excess protein and white blood cells in my spinal fluid. They are not positive but said maybe viral menangitis. I still have some numbness and horrid back pain. Always tired and potassium dropped again. All doctors say I have an autoimmune or immune defficiency but can't figure out which one. Most doctors state I need a "house doctor" one who will get creative and not stop until I have answers. I am only 30 and feel 60. I now keep breaking out in this hive looking rash all over, but no new meds or soaps.  I am tired and angry and just want answers.  We have tested for RA, Lupus, thyroid, pots disease, etc....  I need some new suggestions......PLEASE!
Avatar universal
Hi. Can you please tell me if you have any neurologic symtoms such as pins and needles in hands, feet or anywhere else and any other neuro symtoms?
Thanks
Lori
Avatar universal
i was diagnosed with RA. and hypothyroid in1993 my dr started me on plaqunel it didnt help the only other thing that worked was prednisone. yeah the dreaded p word. i gained lots of weight. and having a bad thyroid that they cant seem to get under control doesnt help. i was a new mom my son was only seven months old when i was diagnosed. they told me that the way my disease was progressing i would be in a wheelchair by the time i was 30. i wasnt wheelchair bound until i turned 33. i had total bi-lateral knee replacements 5 yrs ago at the age of 35. they usually dont do that on people that young but my knees were locked in a 45 degree couldnt bend them or staighten them out. i walked bent over when i was able to walk. then they started me on methotrexate which in turned slowed down the disease but now i have severe fibrosis of the liver. they have taken me off the methotrexate and put me on enbrel and back on prednisone. i still need large amounts of narcotic pain meds to function if what we do you call function everyday. if anyone would like to talk answer me back i would like to be able to talk to someone that is going through what i do everyday
459853 tn?1283144114
Seems like i will be in your shoes before long. No doctor that I've seen can pinpoint exactly what it is that I have, all they know is that I have 'something'. The main problem areas are my shoulders, wrists, hands, hips, knees, ankles and toes. All of these places hurt and swell up to a degree but with no redness which is I guess what the doctors are looking for. There are days were I can barely walk, let alone stand up. I have lost so much strength in my hands and arms over the years it's unreal! I too was on the Plaquenil for about 6 months with no relief. Then the doc changed me over to Prednisone, 10mg a day.... I gained 15-20 IMMEDIATELY! I did help to an extent. But now I am back on the Plaquenil because I haven't been able to see a Rheumatologist since last year. Since I am on Medicaid, all the available doctors are booked up till Oct - Dec of 2009!
500238 tn?1255134814
Swatts:   You can test negative for Lupus and still have Lupus because it sometimes takes years for your ANA to change, and you can have false negatives even after you've had positives.  Another autoimmune disorder which can cause many of those symptoms is Hashimoto's thyroiditis.  I have it and it has caused me a great deal of pain, fatigue, foggy brain, depression blah blah blah.  Your thyroid controls your hormones and your hormones control, well, everything.  Hashimoto's can take years to surface medically because your TSH levels can remain normal for quite some time.  Be sure your doctor tests your thyroid peroxidase antibodies as this is a pretty good predictor that you have Hashimoto's even if your TSH levels have not yet dropped.

Bethrodriguez, your situation sounds pretty serious and there are some autoimmune disorders that can cause that, Hashimoto's Thyroiditis being one.   Pituitary adenomas can cause your problem as well because it also messes up the hormones in your body.

As far as the bones breaking, you really sound like you could have a type of connective tissue disorder like Ehler's Danlos.  Ehlers-Danlos can cause your joints to dislocate easily which means you are going to be more prone to breaks and sprains as well.  Ehlers-Danlos is a disease where the body does not produce the normal amount of connective tissue, and connective tissue is the framework of your body so it has the ability to affect virtually everything and type IV will particularly effect the vascular system and digestive system.
The fact that you have had so many breaks doesn't sound right.  If you have dislocations, are clumsy, break bones easily, your skin is stretchy, you are double jointed, you scar easily and don't heal easily, you may have something like Ehler's Danlos.

There are some cancers that are very slow, such as chronic myelogenous leukemia and chronic lymphocytic leukemia.  Have they tested you for those?  

Severe vitamin deficiencies can also cause the problems you are having.  You need to have your vitamin levels checked and while you are waiting for results I would take a multivitamin or prenatal vitamin daily.  If you have had diarrhea for as long as you say you have then you cannot be absorbing the necessary vitamins you need.  You may have a malabsorption syndrome.  Another thing you should add immediately to your diet is a probiotic.  Probiotics will help the diarrhea as well as the yeast.  Yogurt has probiotics but you probably need a pill that has much more.  The best one I have used is called VSL #3 by Questcor but it is expensive.  I liked it because it is live.  They mail it to you in a pack of dry ice.  The fact that it is live and contains so many good bacteria means it is more effective than the over the counter pills and it doesn't contain some of the extra ingredients that can actually bother your stomach.  If you get an over the counter, look for one with the least amount of ingredients.  Any extra unnecessary ingredient can often bother your stomach.

There is also a syndrome called Haaba syndrome which has to do with a dysfunction of the gallbladder.  Even if you have it removed, the syndrome can still persist and is due to some type of bile issue.  The main symptom is chronic diarrhea and it is pretty easily treated once other causes are ruled out.  It's a relatively new syndrome discovered in just the last five years, but it's a possibility as well.  If you aren't absorbing anything because of the diarrhea, you would be more prone to yeast infections and various other problems because your body cannot function without the proper nutrition.

I hate to mention this one, but AIDS does cause thrush and yeast infections as well as diarrhea among other things.  You may want to have them test you for that just for your own peace of mind.  It will eventually have to be ruled out if it hasn't already been.
776614 tn?1265826354
I have some, not all of the symptoms on the first post and some seem very similar.
In 1999 I was 19 and pregnant w/ my only child. At 7 months I went into premature labor that they were alble to stop, but I was in the hospital for 3 days with a viral infection - Never told what kind of infection though... Anyways later, about 3 months after my son was born 2 weeks early by being induced (I was dialated some already due to the premature labor scare) I started to have ankle swelling and pain like I had twisted my ankle. And that is all I thought it was "at first" due to carrying carseat, baby, etc. Then what I now know were FLARE-UPS the pain and swelling would move on to na different joint in my body. I have had a flare everywhere from 1 toe to my jaw and everywhere inbetween literally. The pain and swelling are horrible, but for years I was able to cope with the flare-ups because I would have 2-3 weeks inbetween them and it would kind of give me a chance to recoup.
To make matters worse in 2002 I was in an auto accident that caused a burst fracture in my lower back and needed surgery/spinal fusion.
Anyways, now over almost the last 10 years I have been DX'd with multiple different conditions by different Dr's but no one seems to know.
Possibly serum-negative rheumatoid arthritis, palindromic rheumatism, polyarthritis or polyarthralgia, MS, and now my rheumatologist just wants to consider fibro. I'm in constant pain, sometimes completely immobile, and losing my mind. My flare-ups are constant now - only move from 1 area to another with no break inbetween and now I have even started to flare in more than 1 joint @ a time. My Dr has taken me off work and I just don't know what to do. I know this probly isn't really a comment and sorry for the rambling, just not sure where to go from here...
Thanks all.......
776614 tn?1265826354
Just got a supposed definate DX this Thursday. It's MS. Had to have a repeat MRI, last 1 was in 2002 and was abnormal then to but neuro dismissed it. Then I had to have a lumbar puncture b/c my MRI had more lesions than before. I get to see the Dr tomorrow so hopefully I'll know more then... My rheumy had also gave me a def DX of fibromyalgia/polyarthralgia at my last appt a few weeks before all the new testing started. I guess from what I get of it all they both agree I have all of the above. CRAZY! Thanks for everybody on here in different groups that I've found...
Live, Laugh, Love
Avatar universal
Are any of your interested in reversal? Understanding what's happening to you?  Please read other threads I've posted here it may give you some direction.  You DO NOT have to be suffering.  Can everyone have a complete reversal, I have no idea, but there are some key components that you're all missing.  Please read the chapters on AUTOIMMUNE disease in The China Study and Fasting and Eating for Health( By Dr. Joel Fuhrman. M.D.)..two great books I came across this summer that explains what's happening to all of us.  Things you won't hear from your doctor who is only trained to help you with symptoms, not get at the root cause.  So now you have a diagnosis..what's next?  
434278 tn?1324709825
Hi girl, I know when a dx comes down it's bitter/sweet.  Bless your heart, it must have been difficult for the dr. since you had two things going on.  But now you can go forward from here.  Swatt also got a dx...it was RA.  So your polyarthralgia is close to RA in the way of joint pain.  How were you dx w/ polyarthralgia?

Thanks for letting us know.  Praying for you.  Praying for God to lead and guide you in the path you should go.

God bless, Kara
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