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

How To Find a New NORMAL & Change Your Game!

otherside
What you once took for granted (walking, working, taking care of family & yourself) can suddenly become difficult when faced with any chronic disease & chronic pain.  What you once did effortlessly can start to look like a mountain to climb when managing illness-so what do you do?

Well, first you examine your status honestly.  You assess your abilities. Here’s some of those questions you may be asking yourself-and some suggestions to help you find a NEW GAME to make them happen!  After all, life isn’t going to stand still-the kids still need to eat, the house still needs cleaning & stocking, and very likely-this means you MUST adapt.

FINANCIALLY SPEAKING!

Can you work, but not reliably?  You may not be able to punch a clock any longer-but you’ve got some energy and love for keeping some part of your career in your life? You HAVE OPTIONS but you must make them happen!  They aren’t going to come to you-you must prepare!

You may want to apply for social security disability.  You are entitled to the money you put into the system if you can no longer work or earn what you used to because of chronic illness.  You can apply even if you still work as long as you do not make over $1020 monthly. It’s time-consuming but do-able.  You can apply online at http://www.ssa.gov.  You don’t need a lawyer to apply-and most lawyers actually want to wait until you get your first denial to take your case-so applying is the first step.  Remember-this isn’t an easy or immediate solution.  This is thinking ahead for your future-it may take up to 3 years to get approved (no guarantees either) but stay vigilant. It’s usually a matter of WHEN, not IF that you will be awarded SSDI. So hang in there-and get started!

Now that your thinking long term-you can think short term.  What about NOW, what about the sick days, the doctor appointments, the unreliability factor in your work or job performance & attendance.  Well-I suggest take it head on.  Ask for part time and keep records of your physical health and lack of work ability.  This will be important to your SSDI case if you have applied.  

Asking for less hours is a necessary tool to keep your stress levels down and your disease symptoms minimized.  It’s a MUST.  You may end up surprised that working less hours brings you better health management.  If you can take your work home, ASK!  You never know unless you bring it to your boss’s attention-if you are working in an occupation that you can be productive from home-making your own hours can take away that issue of not being able to do a 9 to 5!  It’s always worth a try!  If possible, you may want to consider working as an independent contractor-this way you can continue your work at your own pace-and from home, where it can be much easier to manage your health, it keeps you in the career you love, and continues to bring in an income!  If there was ever a time or reason to give being independent a shot, THIS IS IT! If the company you work for or your occupation doesn’t offer a “work from home” alternative-maybe spend this time looking for one.

For immediate financial needs if you reduce your hours or find yourself out of work due to health issues is to apply for state help.  Food stamps are usually available on an emergency basis, you can apply online in most states and many cities have community services that might be able to help pay rent and utilities.  Churches and synogogues can be very helpful assets as well.  You may be able to find roomates to share expenses, caregiving opportunities or bartering options!

Once you’ve got your long term and short term financials down-it’s time to manage your home, your family and your disease.  Once again, you’ve got to change your game!

MANAGING YOUR HEALTH!

Get your doctors and specialists in order.  Make a folder for all your medical records (labs, doctors notes, etc) and keep it updated. This is two-fold. One-it will be necessary for your disability case later on, and Two-you can better coordinate your healthcare this way.  Bring your newest labs, tests, dx’s & list of meds to all your appointments.  This shows your docs you mean business and your taking your care seriously.

Ask questions!  If you need better pain control, it’s time to get that referral to a pain management specialist.  They can offer ways to manage pain that go beyond simply taking medications. There are procedures, cortisone shots, nerve blocks, and surgeries that can make your quality of life BETTER!  Now’s the time to take care of YOU!

Get all your specialist appointments caught up, see your general practitioner and get all the referrals you need to your specialists!  Now is the time.  Again, this will help you manage your chronic disease & give you the paperwork and info you need for your disability case.  Remember ASK QUESTIONS at your appointments!  If you are undertreated, or suffering, SAY SO, and ask.  It might be time to change your medications!  If your not feeling that your doctor is “on your team”-FIRE HIM/HER!  Docs are like night & day.  A good fit is very important. It can mean the difference in your attitude, your pain level, the very basis of how you feel about your disease can change with better quality control of your healthcare. Make those good choices NOW!

And lastly- HOW TO BRING IT HOME!

Time to manage your household.  The players have changed so your game must change too!  You must try to take control of the house by managing your time and abilities!  DELEGATE CHORES!  It’s all about the organization of the household and family working as a TEAM!

Cook meals in advance if you can and freeze them for another day.  Take your time preparing meals, doing the prepwork in stages.  (Cut up the veggies, then go sit down.  Go back & do some more, etc)  Get family to help out with the everyday homecare things like washing clothes, putting them away, walking the dog, doing the dishes, straightening the house!  You can no longer do it all.  You can even arrange a meeting with family and your doctor to discuss what he/her thinks of your abilities-having a knowledgeable professional to relate your needs to your family can go a LONG WAY!  This could be your doctor, your parents, anyone other than you!

It’s all about QUALITY OF LIFE and FINDING that QUALITY!   You may still be able to do the things you love, keep the career you’ve worked so hard for and wanted but in a different way!  You won’t know until you try, and you really have no choice if your taking care of a family!  Make it easier on YOURSELF!  You deserve it!

JJ

Leave Your Ego At The Door- Join “The Lupus Channel” Community!

lupuschannelcommunity

Information is Power!  

My goal at “The Lupus Channel” Google community is to share all things Autoimmune-

Articles, Info, Blogs, Events, Videos & Vlogs, Webinars, Pinterest Boards, Support Groups, Research & Studies, etc on: Lupus Fibromyalgia Sjogrens Scleroderma MCTD (mixed connective tissue disease  & other autoimmune conditions

AND to help you connect to other people just like YOU & Me who learn from each other everyday by sharing experiences on how to most effectively manage our disease and have quality of life!  Nice to meet you & WELCOME!  JJ

A Special Note to Advocates:  Feel FREE to share your links to your groups, your posts & your contact on “The Lupus Channel”-I left my ego at the door- the objective is simply to reach the patients who need help!  TY so much!  I look forward to your posts!

Click HERE to JOIN “The Lupus Channel: Google Community


My goal is to share all things Autoimmune-Articles, Info, Blogs, Events, Videos & Vlogs, Webinars, Pinterest Boards, Support Groups, Research & Studies, etc on:

  • Lupus
  • Fibromyalgia
  • Sjogrens
  • Scleroderma
  • MCTD (mixed connective tissue disease
  •  & other autoimmune conditions

And to help you connect to other people just like YOU & Me who learn from each other everyday by sharing experiences on how to most effectively manage our disease and have quality of life!

Nice to meet you!  JJ

ps. I make lupus music videos to help spread awareness so that we can get closer everyday to a cure!  Here are my videos- HERE!

Hook up with The Lupus Channel on Twitter HERE!  And subscribe to my Blog HERE!
Also Please Join The Lupus Channel FB Group HERE!

My Personal Accounts
You can “Friend” me on FB- HERE!  And you can “Follow” me on Twitter- HERE!
Also-feel free to email me anytime HERE!

Your not alone with lupus or any autoimmune disease-there is tons of help out here!  Reach out TODAY!

The Inflammation connected to the Hamstring..The Hamstring connected to the Tendon..& that’s the way of the Lupus!

myleg

Hamstring tendonitis from lupus-inflammation

So-there it is.  Tendonitis in the hamstring.  NO, I did not fall even though YES, I am a klutz.  And NO, I did not get punched! (except by lupus)

I woke up a couple days ago and Surprise- OWWWWWWWWWWWWWWWWWWWWWWWWW!  It’s hot, swollen and yes, painful.  It’s a pulling type of pain, from around my calfs up to my lower thighs and back of my leg.  My doc is scheduling a cortisone shot which will deflate the inflammation and the pain asap.  I’m also taking steroids and anti-inflammatories.  It helps.  Alot.  Ice is indicated for inflammation as well.

I tried to get a selfie of this but ended up tangled and unbalanced like you get playing Twister!  Finally got hubbie to snap a photo-it even shocks ME & it’s on my body!

So for those who question what kind of inflammation mixed connective tissue disease causes- tendonitis is just one of em!  Lupus is a mixed connective tissue disease-and our bodies are made of this material-so it’s all up for lupus damage grabs, lol.  Two days of bedrest and a few shots isn’t so bad-

“Housebound is no worse than earthbound it’s what you make of it.”


 

Here’s some more info on hamstring tendonitis & lupus connective tissue damage from Medicine Net:

Connective tissue diseases are actually a group of medical diseases. A connective tissue disease is any disease that has the connective tissues of the body as a primary target of pathology. The connective tissues are the structural portions of our body that essentially hold the cells of the body together. These tissues form a framework, or matrix, for the body. The connective tissues are composed of two major structural protein molecules, collagen and elastin. There are many different types of collagen protein that vary in amount in each of the body’s tissues. Elastin has the capability of stretching and returning to its original length — like a spring or rubber band. Elastin is the major component of ligaments (tissues that attach bone to bone) and skin. In patients with connective tissue diseases, it is common for collagen and elastin to become injured by inflammation.

Many connective tissue diseases feature abnormal immune system activity with inflammation in tissues as a result of an immune system that is directed against one’s own body tissues (autoimmunity).

Diseases in which inflammation or weakness of collagen tends to occur are also referred to as collagen diseases. Collagen vascular disease is a somewhat antiquated term used to describe diseases of the connective tissues that typically include diseases that can be (but are not necessarily) associated with blood vessel abnormalities.

 

 

 

Get the SKIN-EEEE on Scleroderma!

Image

Scleroderma=Sclera=hardening

There are two types, diffuse or skin.  My scleroderma is limited to my skin.  I’m VERY lucky! (even if I don’t look it in the middle pic, lol)  You may have to click on the pic to get a close up of it so you can really tell how thick and “pulled” the skin is.  Yes, it was painful.  It took about two weeks to go “down” and get back to normal.  I used steroid cream to heal and prednisone.  It was the worse rash of it’s kind on my face I ever had.  The pic on the right shows the hardening and peeling fingertips common in Scleroderma-called “scleroderma fingers”.

Here’s some more info on Scleroderma from Scleroderma.org:

Scleroderma, or systemic sclerosis, is a chronic connective tissue disease generally classified as one of the autoimmune rheumatic diseases.

The word “scleroderma” comes from two Greek words: “sclero” meaning hard, and “derma” meaning skin. Hardening of the skin is one of the most visible manifestations of the disease. The disease has been called “progressive systemic sclerosis,” but the use of that term has been discouraged since it has been found that scleroderma is not necessarily progressive. The disease varies from patient-to-patient.

What scleroderma is not
Scleroderma is not contagious, infectious, cancerous or malignant.

How serious is scleroderma?
Any chronic disease can be serious. The symptoms of scleroderma vary greatly for each person, and the effects of scleroderma can range from very mild to life threatening. The seriousness will depend on the parts of the body, which are affected, and the extent to which they are affected. A mild case can become more serious if not properly treated. Prompt and proper diagnosis and treatment by qualified physicians may minimize the symptoms of scleroderma and lessen the chance for irreversible damage.

How is scleroderma diagnosed?
The diagnostic process may require consultation with rheumatologists (arthritis specialists), and/or dermatologists (skin specialists) and require blood studies and numerous other specialized tests depending upon which organs are affected.

Who develops scleroderma, and when?
It’s estimated that about 300,000 Americans have scleroderma. About one third of those people have the systemic form of scleroderma. Since scleroderma presents with symptoms similar to other autoimmune diseases, diagnosis is difficult. There may be many misdiagnosed or undiagnosed cases.

Localized scleroderma is more common in children, whereas systemic scleroderma is more common in adults. Overall, female patients outnumber male patients about 4-to-1. Factors other than a person’s gender, such as race and ethnic background, may influence the risk of getting scleroderma, the age of onset, and the pattern or severity of internal organ involvement. The reasons for this are not clear. Although scleroderma is not directly inherited, some scientists feel there is a slight predisposition to it in families with a history of rheumatic diseases.

However, scleroderma can develop in every age group from infants to the elderly, but its onset is most frequent between the ages of 25 to 55. When doctors say “usually” or “for the most part,” the reader should understand that variations frequently occur. Many patients get alarmed when they read medical information that seems to contradict their own experiences, and conclude that what has happened to them is not supposed to happen. There are many exceptions to the rules in scleroderma, perhaps more so than in other diseases. Each case is different, and information should be discussed with your own doctor.

What causes scleroderma?
The exact cause or causes of scleroderma are still unknown, but scientists and medical researchers are working hard to make those determinations. It is known that scleroderma involves an overproduction of collagen.

Is scleroderma genetic?
Most patients do not have any relatives with scleroderma and their children do not get scleroderma. Research indicates that there is a susceptibility gene, which raises the likelihood of getting scleroderma, but by itself does not cause the disease.

What is the treatment for scleroderma?
Currently, there is no cure for scleroderma, but there are many treatments available to help particular symptoms. For instance, heartburn can be controlled by medications called proton pump inhibitors PPIs) or medicine to improve the motion of the bowel. Some treatments are directed at decreasing the activity of the immune system. Some people with mild disease may not need medication at all and occasionally people can go off treatment when their scleroderma is no longer active. Because there is so much variation from one person to another, there is great variation in the treatments prescribed.


Types of Scleroderma

There are two major classifications of scleroderma: localized scleroderma and systemic sclerosis (SSc). Other forms or subclassifications, each with its own characteristics and prognosis, may be identified through future research.

types of scleroderma chart

Localized Scleroderma The changes, which occur in localized scleroderma, are usually found in only a few places on the skin or muscles, and rarely spread elsewhere. Generally, localized scleroderma is relatively mild. The internal organs are usually not affected, and persons with localized scleroderma rarely develop systemic scleroderma. Some laboratory abnormalities commonly seen in systemic scleroderma are frequently absent in the localized form.

Morphea is a form of localized scleroderma characterized by waxy patches on the skin of varying sizes, shapes and color. The skin under the patches may thicken. The patches may enlarge or shrink, and often may disappear spontaneously. Morphea usually appears between the ages of 20 and 50, but is often seen in young children.

Linear scleroderma is a form of localized scleroderma which frequently starts as a streak or line of hardened, waxy skin on an arm or leg or on the forehead. Sometimes it forms a long crease on the head or neck, referred to as en coup de sabre because it resembles a saber or sword wound. Linear scleroderma tends to involve deeper layers of the skin as well as the surface layers, and sometimes affects the motion of the joints, which lie underneath. Linear scleroderma usually develops in childhood. In children, the growth of involved limbs may be affected.

Systemic scleroderma (systemic sclerosis) The changes occurring in systemic scleroderma may affect the connective tissue in many parts of the body. Systemic scleroderma can involve the skin, esophagus, gastrointestinal tract (stomach and bowels), lungs, kidneys, heart and other internal organs. It can also affect blood vessels, muscles and joints. The tissues of involved organs become hard and fibrous, causing them to function less efficiently. The term systemic sclerosis indicates that “sclerosis” (hardening) may occur in the internal systems of the body. There are two major recognized patterns that the illness can take – diffuse or limited disease. In diffuse scleroderma, skin thickening occurs more rapidly and involves more skin areas than in limited disease. In addition, people with diffuse scleroderma have a higher risk of developing “sclerosis” or fibrous hardening of the internal organs.

About 50 percent of patients have a slower and more benign illness called limited scleroderma. In limited scleroderma, skin thickening is less widespread, typically confined to the fingers, hands and face, and develops slowly over years. Although internal problems occur, they are less frequent and tend to be less severe than in diffuse scleroderma, and are usually delayed in onset for several years. However, persons with limited scleroderma, and occasionally those with diffuse scleroderma,
can develop pulmonary hypertension, a condition in which the lung’s blood vessels become narrow, leading to impaired blood flow through the lungs resulting in shortness of breath.

Limited scleroderma is sometimes called CREST syndrome. CREST stands for the initial letters of five common features:

  • Calcinosis
  • Raynaud Phenomenon
  • Esophageal dysfunction
  • Sclerodactyly
  • Telangiectasia

To further complicate the terminology, some people with diffuse disease will go on to develop calcinosis and telangiectasias so that they also have the features of CREST.

Although most patients can be classified as having diffuse or limited disease, different people may have different symptoms and different combination of symptoms of the illness.

 

11 Symptoms Used To Help Diagnose LUPUS

Music Video of the eleven symptoms used as a guide by physicians and the American College of Rheumatology to diagnose Systemic Lupus Erythematosis.

//