Muscle Pain, Stiff Fingers & Gastro Issues, Oh My…. WHICH Autoimmune Disease Could It Be?!!!

autoimmune-picture-treeCould This Be An Autoimmune Disease?

Someone asked the following QUESTION:

My entire life has been on pause for 3.5 years, I went from being the most active person I know to someone who even getting dressed or taking a shower is a big painful struggle. I’ve seen dozens of doctors and spent thousands and thousands of dollars and hundreds of hours researching, and so far the only thing I get is all blood tests being normal and I’m told it’s no big deal. I would so so so so grateful if you can help in any way – I literally do not have a life or a future right now and spend about half my awake time in too much pain to do anything.

Symptom summary:

– muscle pain in left flank almost 24/7

– pain in left SI joint almost 24/7

– pain in lower left ab

– gastro issues (diarrhea, bloated 24/7, gasy ALL the time, stomach aches daily)

– distended areas in stomach

– right knee and right shoulder almost unuseable

– all joints popping constantly from any movement

– very cold right hand fingers and stiff fingers

– tremours/shaking in all muscles when not in rest

– different pains in different body parts daily, seemingly random

My ANSWER

I’m not a medical pro- just someone with systemic lupus & reactive arthritis.  But here’s my best guesses & suggestions:

Have you had an MRI or cat scan during a flare-up of your si joint?  I’d get that done during a flare and see if it shows inflammation.  Your gastro symptoms and si joint (sacroillitis) could be related to reactive arthritis or ankylosing spondylitis (and yes, it can be chronic) (& painful).  You can get checked specifically for the HLA-B27 gene by a rheumatologist who knows what to look for.  Here’s some info:  How Is Ankylosing Spondylitis Diagnosed?

A diagnosis of ankylosing spondylitis is based largely on the findings of a medical history and physical exam. Radiologic tests and lab tests may be used to help confirm a diagnosis, but both have some limitations.

Medical History

The medical history involves answering questions, such as the following:

How long have you had pain?

Where specifically is the pain in your back or neck? Are other joints affected?

Is back pain better with exercise and worse after inactivity, such as when you first get up in the morning?

Do you have other problems, such as eye problems or fatigue?

Does anyone in your family have back problems or arthritis?

Have you recently suffered from a gastrointestinal illness?

Do you have any skin rashes such as psoriasis?

From your answers to these questions, your doctor can begin to get an idea of the diagnosis.

Physical Exam

During the physical exam, the doctor will look for signs and symptoms that are consistent with ankylosing spondylitis. These include pain along the spine and/or in the pelvis, sacroiliac joints, heels, and chest. Your doctor may ask you to move and bend in different directions to check the flexibility of your spine and to breathe deeply to check for any problems with chest expansion, which could be caused by inflammation in the joints where the ribs attach to the spine.

Radiologic Tests

X rays and magnetic resonance imaging (MRI) may be used in making or confirming a diagnosis of ankylosing spondylitis, but these tests have limitations. X rays may show changes in the spine and sacroiliac joints that indicate ankylosing spondylitis; however, it may take years of inflammation to cause damage that is visible on x rays. MRI may allow for earlier diagnosis, because it can show damage to soft tissues and bone before it can be seen on an x ray. Both tests may also be used to monitor the progression of ankylosing spondylitis.

Lab Tests

The main blood test for ankylosing spondylitis is one to check for the HLA-B27 gene, which is present in the majority of Caucasians with ankylosing spondylitis. However, this test also has limitations. The gene is found in much lower percentages of African Americans with ankylosing spondylitis, and in ankylosing spondylitis patients from some Mediterranean countries. Also, the gene is found in many people who do not have ankylosing spondylitis, and will never get it. Still, when the gene is found in people who have symptoms of ankylosing spondylitis and/or x-ray evidence of ankylosing spondylitis, this finding helps support the ankylosing spondylitis diagnosis.

My other guess would be Crohn’s, (or IBD) maybe.  But the joint involvement tells me it’s more systemic than Crohns or IBD.  Do you have any eye issues?  Recurring uveitis is a biggie with AS (I hate it and get it all the time). It’s inflammation in the iris.  You don’t have to have it tho to have AS (ankylosing spondylitis)

As far as Rheumatoid arthritis, I’m sure you’ve had an RA Factor and an anti-CCP antibody test for dx.  I’m assuming you’ve seen rheumatologists..

Your cold hands sound like Raynaud’s Phenomenon, common with mixed connective tissue diseases.

Also as far as mixed connective tissue disease, they often overlap, and the best test to have is a Direct ANA Panel which will separate the antibodies and give your rheumie info on where your disease is pointing.  Most people get just the one ANA test-a TITER test, but I’d like to suggest you have the PANEL done, as it’s much more specific and you can be negative on the titer but positive on the panel.  Also remember these proteins of autoimmune disease don’t always show up right away in your blood.  Sometimes it takes testing over and over to hit it at the right time.

You should also have a CRP (C-Reactive Protein) test to look for inflammation in your blood and an ESR (sedimentary rate) also to check for inflammation.  Testing your C3 and C4 complements in your blood is also helpful to show if you have something autoimmune going on.

And DON’T GIVE UP!  Lots of us wait long long times for a dx.  Hang in there.  All doctors

autoimmunemantra

“Ur In” Luck- UTI’s and Autoimmune Conditions

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With Reactive Arthritis and Systemic Lupus-UTI’s are common.  So is inflammation in your kidneys (glomerular nephritis), bladder (interstitial cystitis), and pretty much any mixed connective tissue anywhere is fair game.

After many years of being in remission from lupus nephritis (chronic kidney disease stage 3b)- I seem to be having issues again.  My doc thinks kidney infection but I’m not convinced.   With lupus it’s possible to have a crazy amount of white blood cells in your urine but no signs of infection (fever, vomiting, no nitrates or bacteria in your urine, etc) and that can mean simply destructive inflammation.

In cases like mine (and I’m certainly not alone with this issue) -further testing is indicated.  That flank pain and lower pelvic pressure can have several causes.  This coming up week I’ll have a cat scan and kidney biopsy and that will tell us more.

So if your having many UTI’s without bacteria showing up-your likely looking at inflammation!

Here’s some info on pelvic inflammatory conditions:

Interstitial Cystitis Facts:
From medicinenet.com

PBS/IC is an inflammatory disease of the bladder that can cause ulceration and bleeding of the bladder’s lining and can lead to scarring and stiffening of the bladder.The symptoms of PBS/IC are pelvic pain as well as urinary frequency and urgency.

PBS/IC has a variable clinical course, meaning that symptoms can appear and disappear over time. Moreover, the intensity of symptoms varies among individuals and even within the same individual over time.

The cause of PBS/IC is unknown, but abnormalities in the leakiness or structure of the lining of the bladder are believed to play a role in the development of PBS/IC.

The diagnosis of PBS/IC is based on the symptoms, an abnormal potassium sensitivity test (PST), and elimination of other conditions that may be responsible for the symptoms.

Treatment for PBS/IC most commonly utilizes heparinoid drugs to help restore integrity of the bladder lining along with other oral medications. Bladder distension and intravesical drug therapy are other treatments that may provide relief in PBS/IC.

Kidney Inflammation Facts:

There are different kinds of kidney inflammation.   Here are a few from Healthline.com:

Think of your kidneys as your body’s filters, a sophisticated waste removal system comprised of two bean-shaped organs. Every day, your hard working kidneys process 200 quarts of blood in a day and remove two quarts of waste products and excess water. If the kidneys suddenly become inflamed, you will develop a condition called acute nephritis. Acute nephritis has several causes and can lead to kidney

Interstitial Nephritis

In interstitial nephritis, the spaces between the renal tubules that form urine become inflamed. The kidneys swell from the inflammation.

Pyelonephritis

Pyelonephritis is an infection in the bladderthat travels up the ureters and spreads into the kidneys. Ureters are two tubes that transport urine from each kidney to the bladder, the muscular organ that holds urine until it passes out of the body through the urethra.

Glomerulonephritis

This type of acute nephritis produces inflammation in the glomeruli. Glomeruli are the tiny capillaries that transport blood and behave as filtering units. Damaged and inflamed glomeruli may not filter the blood properly.

In any case, with autoimmune disease be aware of your symptoms,  get regular urinalysis and blood work done, and see your doctor regularly.   🙂

Here’s a good video on Glomerulonephritis-

Glomerulonephritis:

Going Down the TUBES with “Reactive Arthritis”-

Fallopian tubes that is!

salpingitis

Salpingitis-Inflammation in Fallopian Tubes

Uveitis

See the red circle around the color part of my eye (the iris) . That indicates uveitis-which is inflammation of the iris. There are two types, posterior & anterior. Mine is anterior, which is the one that causes lesser damage.

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Conjunctivitis- Every six weeks-sometimes it’s so bad I have to rest my eyes with cold compresses for two or three days at a time. Ya never realize how valuable your sight is until something interferes with it!

julie wbc eyesjulieeyestwo

 Spondyloarthropathy.  It’s flared much more often than it used to.  Dx’d with it Dec 2012.  Positive for the HLA-B27 Antigen.  Was a matter of genetics and environment & I got LUCKY!  While on immunosuppressants an infection slipped in-and although the infection was just a matter of noticing unusual blackened stool and some unusual stomach and colon-type discomfort-what came on in the following weeks that December was horrendous.  Two full weeks of full blown sacroilliitis.  I could not sit up or get up on my own.  I could not lay on either side.  You could not touch my lower hips (si joints) without me yelping like a hurt puppy.  Walking was SO painful I could not walk at all for almost a week.  I’ve had recurrent flare ups of varying degrees of sacroilliitis since, but it has never gotten as bad as it was that December.  I get regular cortisone shots into my si joints and L5-S1 spine-and it is my saving grace!  TY Dr. Todd Turley.  Not only does he keep me mobile by giving me cortisone & glycol right into the plantar of my feet for plantar fasciitis, but he keeps the really nasty can’t walk wanna cry sacroilliitis AWAY.  TY TY TY!

I’ve got the Reiter’s Trifecta AGAIN.  With the addition of a new symptom-salpingitis.  Aka-inflammed fallopian tubes.  Hot lower insides on fire aching period-like cramping sort of pain.  Sex is very painful and there is a slight discharge that is uncomfortable.  The Reactive Arthritis Trifecta – First came sacroilliitis, then came conjunctivitis (no uveitis this time, thank goodness!) and now for the finale-salpingitis.  Yep-that’s how my spondyloarthropathy rolls.

Approximately every six weeks I get conjunctivitis.  It’s a real PITA (pain in the as_)  Dry eye drops are usually sufficient unless it’s uveitis (and I always know-you can tell the difference in the way it feels and looks).  And for uveitis I take prescription steroid eye drops.  One time my opthamologist had to give me shots in my EYES.  That was horrible.

The fallopian tube inflammation requires surgery to have the tubes out and I’m waiting for a surgery date and insurance approval now.  I hope it comes soon.  It’s very stubborn and I’ve been a bit crabby.

For all you guys out there with Lupus-I “get” YOU and identify with YOU!  Reiter’s is a man’s disease-so I know how you feel when you tell people you have systemic Lupus.

I will likely need to be on biologicals according to my rheumatologist.  I avoided them so far-I’ve been on Cellcept (plaquenil, meloxicam & prednisone) for Lupus-which up until now has worked out pretty well for me.  Definitely minimizing my photosensitivity, hives, rashes, and other lupus symptoms.  I’ll update this post when I’m on biologicals so you can see what works for me.  Ya never know when someone will say- “Eureka!  Maybe that’ll work for me too!”

Personal Note:  How the heck an infection gets into your si joints and effects your EYES, joints and fallopian tubes boggles my mind.  You’d think with systemic lupus I’d be very coherent of how the immune system can attack ITSELF.  But these “targeted” attacks are really bizarre to me., lol.

I likely haven’t said so lately, but if you made it this far down the post, I thank you for reading it.  If even one person sees it and says “Me Too” and can get to feeling that they are not alone with these strange autoimmune diseases, then it’s all worthwhile.

Sacro-Ill-Eeeeee-Itis? Reactive Arthritis? Spondylo-What?

Challenge: Day 2: Sacroilliitis Thank goodness it’s one sided! And I got a shot to help it this morning! Yay! Reiter’s Syndrome (aka Spondyloarthropathy/Reactive arthritis) flare up.

I can use this as a chance to identify with our male lupus friends- since Reiter’s is very much a male dominated disease! I “get” you guys!
Todays objective: Find exercises to help relieve pain so I can sit still and stop doing THIS: LOL!

More Info on Reiter’s (reactive arthritis) from Mayo:

Reactive arthritis is joint pain and swelling triggered by an infection in another part of your body — most often your intestines, genitals or urinary tract.

Your knees and the joints of your ankles and feet are the usual targets of reactive arthritis. Inflammation also may affect your eyes, skin and urethra when you have reactive arthritis.

Although reactive arthritis is sometimes called Reiter’s syndrome, Reiter’s is actually a specific type of reactive arthritis. In Reiter’s, inflammation typically affects the eyes and urethra, as well as your joints.

Reactive arthritis isn’t common. For most people, signs and symptoms of reactive arthritis come and go, eventually disappearing within 12 months.

The signs and symptoms of reactive arthritis generally start one to three weeks after exposure to a triggering infection. They may include:

  • Pain and stiffness. The joint pain associated with reactive arthritis most commonly occurs in your knees, ankles and feet. You also might experience pain in your heels, low back or buttocks.
  • Eye inflammation. Many people who have reactive arthritis also develop eye inflammation (conjunctivitis).
  • Urinary problems. Increased frequency and discomfort during urination may occur, as can inflammation of the prostate gland or cervix.
  • Swollen toes or fingers. In some cases, your toes or fingers might become so swollen that they resemble sausages.

The goal of treatment is to manage your symptoms and treat any underlying infections that may still be present.

Medications

If your reactive arthritis was triggered by a bacterial infection, your doctor might prescribe an antibiotic. Which antibiotic you take depends on the bacteria that are present.

For your arthritis signs and symptoms, your doctor may recommend:

  • Nonsteroidal anti-inflammatory drugs (NSAIDs). Prescription NSAIDs, such as indomethacin (Indocin), can relieve the inflammation and pain of reactive arthritis.
  • Corticosteroids. Injection of a corticosteroid into affected joints can reduce inflammation and allow you to return to your normal activity level.
  • Rheumatoid arthritis drugs. Limited evidence suggests that medications such as sulfasalazine (Azulfidine), methotrexate (Trexall) or etanercept (Enbrel) can relieve pain and stiffness for some people with reactive arthritis.

Physical therapy

Exercise can help people with arthritis improve joint function. A physical therapist can provide you with specific exercises for your joints and muscles. Strengthening exercises are valuable for developing the muscles around your affected joints, which increase the joint’s support. Performing range-of-motion exercises can increase your joints’ flexibility and reduce stiffness.

During the physical exam, your doctor may examine your joints for signs of inflammation such as swelling, warmth and tenderness. Your spine and affected joints may be assessed for range of motion. Your doctor might also check your eyes for inflammation and your skin for rashes.

Blood tests

Your doctor might recommend that a sample of your blood be tested for:

  • Evidence of past or present infections
  • Signs of inflammation
  • Antibodies associated with other types of arthritis
  • A genetic marker linked to reactive arthritis

Joint fluid tests

Your doctor may use a needle to withdraw a sample of fluid from within an affected joint. This fluid will be tested for:

  • White blood cell count. If the joint fluid has an increased number of white blood cells, it may indicate inflammation or an infection.
  • Infections. If your joint fluid contains bacteria, you may have septic arthritis, which can result in severe joint damage.
  • Crystals. If uric acid crystals are found in your joint fluid, you may have gout. This very painful type of arthritis often affects the big toe.

Imaging tests

X-rays of your low back, pelvis and joints can indicate whether you have any of the characteristic signs of reactive arthritis. X-rays can also rule out other types of arthritis.

More at:  http://www.mayoclinic.org/diseases-conditions/reactive-arthritis/basics/tests-diagnosis/con-20020872

Reactive Arthritis-WHAT? “React THIS-Arthritis”!

Aka Spondyloarthropathy, enteropathic arthritis, possible ankylosing spondylitis

For me it took 3 bouts of sacroillitis (one was VERY bad-oy vay- couldn’t walk, sleep, lay) that comes accompanied with it’s pal uveitis and pinkeye.

My rheumatologist calls with the results of my genetic testing-the gene HLA-B27 locked up the dx after the MRI of lower lumbar and si joint showed inflammation only and no bone fusing-had there been bone fusing a diagnosis of anklylosing spondylitis would have been appropriate.  Thank goodness it wasn’t that-well isn’t so far-  My grandmother had AS and she was in great pain and hunched over.  She also had undiagnosed lupus, which attacked her nerves, blood and skin the most-just like ME.

The pain radiating on one side above my butt and under lower back-now known as the si joint is warm to the touch, swollen looking and varies in intensity when it acts up and is painful.  At it’s worst I would not hesitate to clobber ya for getting in touching distance, lol.  Sometimes it’s one side, sometimes its both and last December, the worst flare I ever had with it, it was both, it also included the pelvic area and I could not MOVE without pain.  Its horrendous.  It comes with uveitis and/or pinkeye.  And what the two have to do with each other, BEATS ME!  But here’s the idea the doctors have:

Fast facts

  • Reactive arthritis can affect the heels, toes, fingers, low back, and joints, especially of the knees or ankles.
  • The infection that causes reactive arthritis usually presents (shows up) as diarrhea or as a sexually transmitted disease. But, it can have no symptoms (called asymptomatic).
  • Though it often goes away on its own, reactive arthritis can be prolonged and severe enough to require seeing a specialist.
ReactiveArthritis2This figure shows the areas of the body that reactive arthritis might affect.

What is reactive arthritis?

Reactive arthritis is a painful form of inflammatory arthritis (joint disease due to inflammation). It occurs in reaction to an infection by certain bacteria. Most often, these bacteria are in the genitals (Chlamydia trachomatis) or the bowel (Campylobacter, Salmonella, Shigella and Yersinia). Chlamydia most often transmits by sex. It often has no symptoms, but can cause a pus-like or watery discharge from the genitals. The bowel bacteria can cause diarrhea.

Reactive arthritis can have any or all of these features:

  • Pain and swelling of certain joints, often the knees and/or ankles
  • Swelling and pain at the heels
  • Extensive swelling of the toes or fingers
  • Persistent low back pain, which tends to be worse at night or in the morning

Some patients with this type of arthritis also have eye redness and irritation. Still other signs and symptoms include burning with urination and a rash on the palms or the soles of the feet.

What causes reactive arthritis?

The bacteria induce (cause) arthritis by distorting your body’s defense against infections, as well as your genetic environment.

How exactly each of these factors plays a role in the disease likely varies from patient to patient. This is a focus of research.

Who gets reactive arthritis?

The bacteria that cause reactive arthritis are very common. In theory, anyone who becomes infected with these germs might develop reactive arthritis. Yet very few people with bacterial diarrhea actually go on to have serious reactive arthritis.

Musculoskeletal
Signs and symptoms that affect your bones and muscles may include:

  • Joint pain, usually in your knees, ankles and feet
  • Heel pain
  • Pain and swelling at the back of your ankle
  • Swollen toes or fingers, which may look like sausages
  • Pain in your low back or buttocks

Reproductive and urinary
Possible signs and symptoms of your reproductive and urinary systems include:

  • Pain or burning during urination
  • Increased frequency of urination
  • Inflammation of the prostate gland (prostatitis)
  • Inflammation of the cervix (cervicitis)

Eyes, mouth and skin
Signs and symptoms that affect your eyes, mouth and skin may include:

  • Eye inflammation (conjunctivitis)
  • Inflammation of your inner eye (uveitis)
  • Mouth ulcers
  • Skin rashes

Reactive arthritis develops in reaction to an infection in another part of your body, often in your intestines, genitals or urinary tract. You may not be aware of the triggering infection because it may cause only mild symptoms or none at all.

Numerous bacteria can cause reactive arthritis. The most common ones include:

  • Chlamydia
  • Salmonella
  • Shigella
  • Yersinia
  • Campylobacter

Reactive arthritis isn’t contagious. However, the bacteria that cause it can be transmitted sexually or in contaminated food. But only a few of the people who are exposed to these bacteria develop reactive arthritis.

How is enteropathic arthritis treated?

Like the other spondyloarthropathies, the patient needs physical therapy and exercise. Treatment of the bowel disease may help the peripheral joints but not the spine. Removing the colon (colectomy) in ulcerative colitis may “cure” the arthritis. One can use non-steroidal anti-inflammatory drugs (NSAIDs), but there is a need to be aware of the bowel effects. Local injection of steroids into joint(s) can be very helpful. Oral steroids can be used in more severe cases. In resistant cases, medications normally used to treat rheumatoid arthritis, such as methotrexate, azathioprine (Imuran®) or sulfasalazine can be tried for the joints. Anti-TNF-a drugs, like adalimumab (Humira®) and infliximab (Remicade®) have shown benefit with joint and bowel disease.

Also called Reiter’s Syndrome-here is more info:

https://www.mayoclinic.com/health/reactive-arthritis/DS00486

http://www.rheumatology.org/Practice/Clinical/Patients/Diseases_And_Conditions/Reactive_Arthritis/