Well I have had Type 1 Diabetes for over 23 years and the past few years I have had severe fatigue, stiffness, joint pain, and various other issues. The past six months I have had issues walking and a weird lump on the side of my right knee. My doctor noticed I was limping some so I decided to get it checked out. I was referred by an Orthopedic to a Neurologist and now back to Rheumatologist. I recently had some arthritis in both knees show up on an X-ray with joint space narrowing on both sides. The Neurologist tested me for motor neuropathy but that isnāt the cause. So I donāt have nerve damage in my muscles.
So what other autoimmune diseases have any of the other Type 1 diabetics encountered? I have been tested for a lot of things in the past including RA and Lupus. I have had a positive ANA speckled pattern 1:80 but no RA factor. I have an appointment with a new Rheumatologist next week. So I am not sure if they will say autoimmune arthritis or not.
There are other inflammatory arthritis types besides RA. I have been diagnosed with inflammatory spondyloarthropathyāa category that includes ankolysing spondylitis, psoriatic arthritis, and others. If you look up inflammatory polyarthritis, you will see that it is not limited to rheumatoid arthritis.
Unfortunately autoimmune and inflammatory issues often manifest in clusters and the arthritis part of this is not always easily diagnosable. Hope you get some answers with the new rheumatologist.
For what itās worth, I have a high ANA (ranging between 1:320 - 1:640, homogenous pattern, over at least a decade), with a bunch of systemic symptoms, but no other positive inflammatory/autoimmune tests and no other autoimmune diagnoses. My rheumatologist (a lupus specialist) thinks the ANA might be related to the diabetes somehow, although I feel like Iām always waiting for another autoimmune shoe to drop. I do however seem to have a genetic connective tissue disorder (likely hypermobile Ehlers Danlos Syndrome), which accounts for a lot of the symptoms we thought might be lupus and is linked to some autoimmune diseases (not necessarily T1 diabetes thought) and mast cell dysfunction, so Iām not sure if my autoimmune weirdness might actually be a feature of that.
Anyway, I agree re: checking for a broader range of inflammatory arthritisāmy close friend has psoriatic arthritis as well as celiac (more evidence of these things clustering). It took a while to diagnose, because itās not as commonly looked for as RA. She now takes embrel, which helps somewhat.
Yes, my Endocrinologist tests me for Thyroid problems every year. Iām definitely now wondering about autoimmune arthritis since they recently found a little arthritis in my knees. I went to a Rheumatologist for a few years and had a lot of symptoms but no joint damage on X-ray. I stopped going for over a year and am now going to a new one soon. My family also has RA and Lupus. I have had the positive ANA off and on for about 5 years. I know my doctor had mentioned before that sometimes people just have a positive ANA and not necessarily related autoimmune diseases.
Sorry, yes that is the type of blood test. I know some autoimmune diseases take a while to appear in blood tests. I know someone who it took over 5 years for Lupus to show on lab tests. I think I remember a doctor of mine mentioning that Type 1 diabetics can be more prone to get certain other Autoimmune disease like Thyroid, RA, or other types that attack a specific organ. So I donāt think Lupus is common in Type 1ās but Iām not sure.
Other autoimmune diseases often arise in association with type 1 diabetes, particularly multiple sclerosis. After 30 years of type 1 diabetes I developed the extremely rare autoimmune condition called Wegenerās Vasculitis. Obviously having any autoimmune disease is symptomatic of a disposition to develop other such conditions.
Autoimmune primary adrenal insufficiency/Addisonās. For future reference if anyone ever finds their ACTH elevated, insist on also testing renin & adrenal antibodies before they send you for a head/abdominal scan to check for tumors, perform a dexamethasone suppression test and then consider you ānormalā despite having elevated ACTH & normal cortisol levels. In my case, the ānormalā cortisol levels were due to fight or flight response when they tried to draw blood (my veins are deep and hidden so all the newbies they throw at me to draw blood keep poking many times despite me advising them and ignoring me ā hence the fight or flight response elevating my cortisol levels creating a false positive).
Note: despite the bad rep for cortisol, it is so critical to life to help control inflmmation, immune system, energy/strength, regulate blood pressure, regulate blood glucose levels, etc.
Yes, but depends upon your numbersā¦anything over 3 with symptoms should be treated, but many Endo are still in the dark and look to the lab, which requires >4.5 TSH. The issue needs to be addressed in light of your numbers and your symptoms together and the fact that you already have auto-immune. I was initially normal with my numbers but symptomatic, my forward thinking endo provided treatment and I FELT SOOO much betterā¦
Thanks for all of the information everyone. Well I found out some of the problem and hopefully this will be all figured out soon. I had X-rays and it showed some more arthritis now in my hands and feet. I think this is hard to figure out because the arthritis showing on X-rays is not really bad but it is symmetrical in 3 areas now. My doctor tested me and nothing showed in my blood work except that I am HLA B27 positive and the ANA Positive Speckled Pattern 1:80. Something interesting the doctor said was that you can have a positive ANA with Type 1 diabetes too. My doctor said this all might be from Seronegative arthritis types (Iām not sure if the exact wording). I was also put on a new medicine and had an X-ray of my spine done.
I think that is what my new Rheumatologist told me I have a seronegative spondyloarthropathy. What all were you initial symptoms and how long did it take to diagnose? Thanks for all the information.
For many years I was dealing with joint pain, but not horrible. I was doing well on Naproxen (prescription-strength Aleve), but my endocrinologist indicated that I shouldnāt be taking NSAIDs longterm with no diagnosis. I spend my winters in Arizona and ended up having a horrible winter with enthesitis (Google it) pain in my chest and back, Also pain through sacroiliac area and butt and leg pain. I couldnāt drive 30 minutes to work without getting out of the car to stretch halfway. My MN doctor had put in a referral to Mayo Clinic in AZ but they scheduled me in Rochester, MN. So I waited until spring for my first ever rheumatologist appointment. I was lucky to get an immediate diagnosis because the sponyloarthropathies are one of the few arthritis types that affects more men than women and women often are just diagnosed as fibromyalgia. In general I have done great with NSAIDs although I have been through about 6 of them due to side effects or just not working well. This family of arthritis can be very debilitating and there are fewer effective treatments than for RA. Many people use the biological injectables such as Humira, Embrel, etc. but I have not needed them and have much less disability than many others. I struggle the most with hand and feet pain which my rheumatologist describes as osteoarthritis. I also have skin issues that tie into autoimmune inflammatory arthritis although I do not have psoriasis which would change my diagnosis to psoriatic arthritis.
There is a forum at the Spondylitis site and you might learn something reading through the posts. I used to find it helpful but lately have not.
Thanks for the information. Iām sure it has been difficult for you to manage multiple autoimmune diseases. Most of what you said sounds familiar to me. I might have that Enthesitis type thing but Iām not sure. Iāve been having difficulty walking for almost a year and have a lump by my knee. One of my old doctors said I could have Fibromyalgia too but didnāt want to give me that diagnosis since some doctors will ignore your symptoms if you have that label. I hope they are able to give a specific diagnosis soon but am glad they are at least getting closer to figuring it out. It took about 5 years for me to get an Inflammatory Arthritis type label. I have had so many weird symptoms from blurry vision to pressure in my chest that I knew it was more than the Type 1 diabetes. Also, been tested for a million of things and found out my heart is in good condition. So I am definitely happy about all of that.
Kristy13, you can still have RA without have an positive Rheumatoid Factor. I am seronegative meaning I am negative for the Rhematoid Factor but my CRP and SED rates were off the charts and still are 20+ years later.
In my case a person looking at me cannot see any visible RA damageāmy joints are not deformed, but my MRI and X-rays, and labs are horrible. I feel like I have the flu 24/7. āUncle Arthurā is with me all the time. And when heās really ornery he shows himself in my eyes with iritis (inflammation of the eyes) or plantar fasciitis (inflammation of tendons in the bottom of my feet).
Yes, once you have one autoimmune disease, more than likely you will become a collector of many moreākind of a domino affectālike turning on the lights in your house at night, one room at a time. For me it was allergies as a little girl, then Graves Disease at 14, then a severe allergy attack at 26 that led the discovery and diagnosis of my RA.
I didnāt realize I had been dealing with RA all through my teenage years, all thought all teenagers had aches and pains (āgrowing painsā), carried Tylenol and popped them like candy.
Then about five years later I was diagnosed with Fibromyalgia. Honestly, I donāt know where the RA pain ends and fibro begins.
At 43, it was confirmed that I was Type 2 diabetic, yet all the medications that they have placed me on so far do not work and/or causes extreme side effects. Now Iām on Trulicity and my BGs are all over the place (highs and lows) and Iām having upper, left abdominal pain. So we shall see.
I wish you the best of luck, but you feel your doctor is not listening or not giving you the proper care, feel free to move on to another rheumy. Finding the right combination of meds to treat your medication conditions is not an exact science, and most importantly itās a team effort.
I have been chasing widespread pain issues, especially a stabbing pain problem in the left side muscles of my mid back when I stand back straight after bending over, and other symptoms for about 2 years now, with no diagnosis at all yet. About the only thing that has been found was some small amount of degeneration in some disks in my mid back, but supposedly not enough to cause any issues. I have been to several Orthopedic doctors, tried physical therapy and exercise, tried all kinds of pain meds (which either do nothing, cause bad side effects and sickness, or both), tried trigger point injections, epidural injections, had x rays and MRIs with and without contrast, and I have been to a neurologist. I have been to a rheumatologist who found absolutely nothing, other than to tell me my feet were flat (they arenāt). I really donāt trust any doctors I have been to as it seems like they are only looking for easy money. They immediately discount any symptoms because I am not very old and donāt show any blatant symptoms to things on their easy check list.
Lately I have been experiencing more and more issues with muscular pain, and also weakening muscles that also tire very quickly and are very stiff. My hands will also kind of freeze up after doing repetitive tasks or something intricate, and if i am using a hammer in a very short period of time my forearm will be burning and tired and the muscle will be rock hard. My forearms and hands especially just feel like there is some restlessness in them. I read that it could be some sort of muscular dystrophy, but I am not counting on any diagnosis. I also have near constant neck pain and it is starting to feel weak sometimes just holding my head up, and I have strange dizziness that happens when I think about something hard, or especially something that irritates me. It is almost like I halfway black out for a second.
Even though my numbers have been pretty good (a1c in the 5-6 range) I feel like other issues have been getting worse too, like I have had some mild hair loss on my lower legs for many years now, but recently it has escalated and it is almost completely gone and the skin is kinda sore and slightly itchy, and I have had some swelling that doesnāt seem to go away. My lower leg has also been very sensitive since many years ago, and my whole legs seem to acheā¦but I mean my whole body aches so that might not be an individual issue with my legs. Oddly enough, my feet are doing quite better than my lower legs. They have been aching more than usual, but not constantly, and circulation in them seems OK. I have even been getting more exercise than I used to.
I am going to my regular doctor later this month in hopes he will refer me to a different neurologist (since they just HAVE to have a referralā¦) and maybe they can find something. Some of my symptoms seem to point to other autoimmune diseases, and honestly even if I do have some other serious issue it would give me peace of mind just knowing what is actually wrong.
Displayname, I have kind of similar muscular pains you are talking about. I have different muscular pains in the middle part of the body and there is some strange painful stiffness developed (or still developing?) around the shoulders. There is no help from the doctors, but I have discovered that pains in the middle part are affected by the food I eat. In short - any processed food courses pain. Its location, strength and time it takes to develop is different for every food item. Moving to a diet of simple self cooked meals helped a lot. And the second thing that seems to help is movement, the more I move the better I feel myself.
Thanks for all your replies. I definitely think itās good to seek a second opinion if you arenāt sure what could be causing your issues. Display name I have a lot of the same symptoms as you. My Rheumatologist has found out some more information and says I have some form of Seronegative Spondyloarthropathy and possibly Ankylosing Spondylitis. I am negative for Rheumatoid factor but have had a positive ANA for a while. My doctor thinks the ANA could be from the Type 1 (I have never heard of that before). This past summer my new doctor found out that I am HLA-B27 positive. I think my original Rheumatologist thought I had Fibromyalgia since nothing was showing up on X-rays and the blood work. This past year they found arthritis in both knees, hands, and feet. They still donāt think RA. I think it was confusing because I have other family members with RA. I also have a sister with Lupus but the doctor doesnāt think I have that. I do have Type 1 Diabetes so they kept looking at the autoimmune arthritis. Iām glad my new doctor was able to narrow it down finally.
AS can mimic RA and vice versa. As a person with both it is difficult for me to separate them. If you wish to get some additional information about AS here are two sites I belong too.
and here are two sites that might be helpful for RA
In my case, the ānormalā cortisol levels were due to fight or flight response when they tried to draw blood (my veins are deep and hidden so all the newbies they throw at me to draw blood keep poking many times despite me advising them and ignoring me ā hence the fight or flight response elevating my cortisol levels creating a false positive).