Could 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.
– 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
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.
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.
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.
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.
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!