Hi Kristy,
I have both type 1 diabetes and Addison’s disease.
It takes a long time for the adrenal gland to pack up so suspect you are running into trouble, if it were me I would ask to be treated as such to save you having a crisis.
Addison’s is easy to treat and live with so have no fear about that if it comes to actually having the condition
Thanks for the information. I think I do have issues with my hormones being off but from what my Endo say it’s not autoimmune hormone stuff. I have extreme fatigue and am tired all the time so maybe that is from something else. Sorry I know it must be difficult to manage 2 autoimmune diseases at once. I am actually being tested again for autoimmune arthritis. I went to a new Rheumatologist and they seem to think my issues are from inflammatory arthritis. I had knee X-rays done earlier this year and they found arthritis in both knees. So now they are doing hand and feet X-rays plus bloodwork. I was tested before for all of this several years in a row and stopped going. Nothing ever showed up on xrays until now.
When I had the X-rays of my knees done they did a steroid shot. I didn’t realize that they were doing it until he mentioned it. I definitely don’t want to have a steroid shot again. It only helped for a few weeks but my blood sugar kept going up to 400. So I had to adjust my insulin almost double the amount and it still wasn’t stable.
Have you tried ice or heat on your back and knee?
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VThanks yes I have done those for years. I have chronic pain,from injuries. Right now my knee is worse and it’s not getting better. I was supposed to get an MRI today but I couldn’t do it due to claustrophobia etc. it is standup mri but they wanted to put me further in there for the knee. I’ll have to get a ct scan instead. Don’t know what’s going on – it will feel better if I take aleve but it only lets 24 hrs. like today it was worse and then after walking around it’s actually got more fluid and more swollen but it’s not tremendously swollen. I just feel like there’s pressure in my knee and I can’t go down the stairs normally and there’s pain on and off which gets worse becomes constant with too much activity. After reading all the bad shot experiences i’ve pretty much decided I can’t do that unless I get into an emergency situation because that could end up putting me in the hospital with high blood sugar. Ps they said I have osteoarthritis now and in the knees patellar chondomalacea which means the cartilage beneath the knee cap is dissolving/ damaged.
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 (I’m not sure if the exact wording). I was also put on a new medicine and had an X-ray of my spine done.
How has everything been going? I hope you have found some relief with your issues.
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I’m glad you figured something out. What new med are you on? Is it helping? No I dont feel better really. And now I’ve injured my knee which is the worst right now. I have a torn meniscus. Really can’t do much and I have to star teaching soon. I’ve increased vitamin d a bit. I’m so sick of this. I have been taking Aleve every other day and lidocaine gel. Tens ice etc. the PT seems to make me worse.
What does that testing mean? Not ra? My grandfather had ra and I’m worried about that but my tests so far are ok.
With the positive HLA-B27, the doctor is probably looking at one the spondyloarthropathies, a grouping that contains ankolysing spondylitis, psoriatic arthritis, reactive arthritis, and others. With AS there can be characteristic fusing in the spine and that might be the reason for that x-Ray. They are seronegative because there is not a positive RA factor. The positive ANA can lead your doctor to consider Lupus, Sjoogren’s syndrome, and others.
Sounds like your doctor is taking time to consider the many alternatives.
Yes, thank you for the information. I am now on Sulfasalazine and it doesn’t seem to be helping yet. I have only been on it a little over a week though. This medicine is kicking my butt so I’m not sure if I will stay on it. I didn’t realize but it is a low level DMARD which is an antibiotic mixed with an aspirin type NSAID. I was kind of out of it at my appointment so I have a lot of questions still for my doctor. My doctor asked about psoriasis but I don’t have that. I think I have symptoms of 2 types of inflammatory arthritis but not much showing in blood work. I feel like I have stiffness throughout my body so I wouldn’t be surprised if I have arthritis in other areas not tested.
I was referred to this new Rheumatologist by an Orthopedic doctor. He initially blamed my frozen shoulder and knee stuff on the diabetes. So it wasn’t until after he ran a test and did an X-ray that I was referred to the new arthritis doctor. I would definitely be persistent with your doctor. I actually was seeing a Rheumatologist for years and they never found anything. So fast forward to 4 almost 5 years later and something finally showed on X-ray. My new Rheumatologist also ran the new test that found HLA-B27.
Thanks I think the AS is a possibility since I do have symptoms. I’m just really confused since I have big and small joints affected. I do have RA and Lupus in my family genes along with Type 1 diabetes. So who knows. The Rheumatologist said they don’t think Lupus though.
I’m guessing it might take longer to figure out.
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Yeah I have tried PT twice and it never seemed to help. Definitely ask to see a specialist if you haven’t or call to see what else they can do or test.
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In the past years since type one diagnosis and leading up to it I have had alot of that too including one frozen shoulder another similarly affected shoulder and elbow injury where I now have continual pain in that arm, elbow and shoulder. and continual inflammation everywhere. I can tell it is worse when my whole body is affected with rashes, more pain foucused in joints and elsewhere and worse pain and fatigue. Also feel burning and inflammation in my bladder etc too. I hope you find a med that helps you. I’d never be able to take that one. Reststasis has helped my eyes a lot at least.
The bilateral knee arthritis I have wasn’t severe on X-ray and the Orthopedic PA I went to thought it looked like Osteoarthritis at first but the head doctor referred me to Rheumatology. I think it’s hard to tell when inflammatory arthritis is in early stages. I know one of the questions my Rheumatologist asked me was about if I had rashes too. I don’t so I’m not 100% sure why they were asking. I think that could be a symptom of a certain type of inflammatory arthritis though. This new Rheumatologist asked a wide variety of questions regarding eyes, stomach, bladder, skin, and so on. They did a ton of blood work and found that I had HLA-B27. Which I think could mean Ankylosing Spondylitis, Psoriatic Arthritis, or another inflammatory arthritis.
The nurse told me that there are over 100 types of arthritis. You might want to try to talk to your Rheumatologist again or go to a new one for a second opinion. I think one of the one’s my doctor was wondering about was Psoriatic arthritis. But I have never had skin issues so I’m guessing that’s not it. I am definitely starting to wonder about the Ankylosing Spondylitis possibility if they don’t think I have RA.
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Thanks I may do that- I see the ortho Doc about my knee on the 27th. I will ask him about it too. So sick of this. I’ve forgotten what as is I will look that up. Hope you feel better. I went to the rheumy for osteoporosis and he did a gzillion tests. I had two urine tests which showed high excretion of calcium. Nothing has been done about that yet either.
The HLA-B27 is a strong marker for various spondylitis arthritis types. But it is murky because not everyone w/ spondyloarthropathy has that genetic marker andf ofthers have the marker and do not have arthritis.
When I had my initial rheumatology bloodwork, I think the doctor expected me to have a HLA-B27 positive result. But I do not have the marker and he did not waver from his diagnosis.
Yeah I think it’s hard to figure out things earlier on with Inflammatory Arthritis. I think some people just aren’t textbook definitions of these diseases. I was kind of not expecting the Spondylitis arthritis type to be a possibility but you never know. I guess I do have some symptoms of it but most of my pain is in my hands and feet. I do have nerve problems too like Carpal tunnel. Whatever this is it is effecting my whole body. I have had issues with my shoulders continuously for over 5 years when I stopped being able to sleep on my back. Hard surfaces cause me a lot of pain too and now my walking is limited. I feel like I am 90. Fun fun
I had never heard of spondylitis when I was diagnosed. I still don’t necessarily have one diagnosis but just a cluster of autoimmune inflammatory issues. Some doctors will categorize the hand and feet pain as peripheral spondylitis but my doctor always calls them osteoarthritis. NSAIDs have taken care of all my enthesitis pain and the weird joints that used to swell. I’ve had frozen shoulder several times but not really shoulder arthritis. Similarly my knees are fine although hips are occasionally painful. I find it interesting that my older sister also has Type 1 but she has no other autoimmune or inflammatory issues. She saved them all for me. 
Yes this is the first I have heard of Spondylitis. My back issues have been the least of my problems until recently. So I’m still not sure if it’s that or RA or something else. I actually found out that there are several people on my dad’s side with RA and 1 on my mom’s side. It is definitely crazy how your sister has similarities and differences with the autoimmune problems. I guess it’s a lot more than genetics that come into play.
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