Sticky Blood-Hughes Syndrome Support
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Traveling pain to my Joints and my calf muscles

Greetings, I am a 39 year old male from the Bronx, New York. I have 3 older siblings, and tons of Nieces and Nephews as well as Great Nieces and Nephews. My mother was diagnosed with Lupus Arthritis as well as my oldest sister. Recently. my sister's daughter who is in her 20's also has Lupus. As of late, I'm starting to believe that I do too. I'm going to be tested next month.

Well since Feb of 2013, I have been working 6 days a week. Doing doubles twice a week. Then in June of 2015, I started doing 7 days a week with one double shift. Once August came around, I became drained. I started to request time off and was ignored. Tried to take sick days and was denied. So, September strolled in and I decided it was time to quit. I was constantly tired and working on fumes. All of this month (October 2015) I decided to take a rest. That wasn't my body's plan.

During the first week of October, I awaken to what I believed to be lock jaw. I could barely open my mouth. One day it was the right side, then 2-3 days later it was the left side. The pain would last a day and then clear up. Some times, it would give a problem swallowing with a sore throat. Went to the doctor and they thought it was just a cold coming on and gave me antibiotics.

Then days later, my elbow of my right side, was tender and swollen. Hadn't any clue how or why this was happening but, I was in total discomfort. I couldn't tolerate any pressure on it at all. Barely could bend it. 2 days later it disappeared like nothing happened. I thought maybe I leaned on it too long in my computer chair or bumped it against something and didn't really notice it.

About two to three days later, I woke up to a disturbing tightness in both of my thighs. Hadn't felt this type of tightness since running track in high school many years ago. It was located in the front part of my thighs. Made it very difficult to walk normally or stand very long. Calf muscles were so stiff. It was as if the muscle was locked in my thighs. Days later, it too cleared up but, I felt a tingling sensation going up towards my hips on both legs. It was as if it was telling me where it was going next.

2 days later, like I predicted, it was in my hips. The Joints where tender like my elbow. It almost felt like the hip was out of place and wanted to be popped back in place. I tried icyhot but, got no relief. So I took some muscle relaxers. That didn't help at all. So back to the doctor I went. He basically chalked it up to the damp weather and pointed out how I wasn't being as mobile as I was before. He claimed that, I needed to get out more and walk. So I did. That made it worse after 30 mins.

3 days after the pain in my hips disappeared, it went to my right elbow. I was in worse pain than ever. Especially since I am right handed, I rely on this hand for everything. I couldn't go to sleep, I couldn't cook, couldn't dress myself properly or bathe the way I wanted too. Then I started noticing something. Every pain lasted for 2-3 days. It was like a cycle. Sure enough, 2 days after the elbow cleared up, it went to my right shoulder blade. (where it is currently kicking my but as I type) I was left all confused. But one thing was clear, I was in pain.

I got so fed up, that I stormed into my doctors office and demanded to be tested for Lupus. I had mentioned it to him on several occasions that I show the same symptoms as my Mother, Sister and Niece. This doctor refused. He claimed that the pain was only escalating in my head, because I wasn't used to it. He then went on to say how Lupus in men is very uncommon. So, I demanded to speak to the Director of the hospital. That's how I finally got my appointment to be tested.

My question now is, to all of you that are dealing with this, does my symptoms match yours? Inflammation in the joints with tenderness, random flare ups, muscle pain, slight depression from the pain, random cycle of events, warm muscles? I also notice that, every time it flares up, it's always when I wake up. Never throughout my day.

Any input is greatly appreciated.

4 Replies

Hallo there,

I have been on this site for several years and i am diagnosed Primary APS with all the antibodies positive. That means that I have no other autoimmun illnesses known so far like Lupus or Sjogrens etc.

Your pain moving within 2 - 3 days around different parts of your body is nothing I have experienced.

You say that your family have Lupus. Perhaps try on the special site for Lupus if you do not get enough answers from this APS-site. This is a site for APS (Hughes Syndrome).

Best wishes from Kerstin in Stockholm


Hi with the autoimmune diseases perhaps in your family, you can do these blood tests to rule Hughes Syndrome.APS in or out? Do them at a lab or hospital where the test will be conducted fairly swiftly so that the samples don't lie around for collection as they are a bit time sensitive. If you get any positive results, we have many members from the USA on here, plus there is this useful site.

Do check, also your B12, D and Ferritin (iron) levels, plus get them to also run a Thyroid panel. This forum is specifically for Hughes Syndrome/APS so some back to us and let us know of any results. MaryF

1 like

We in NYS arefortunate to near one of the best Rheumatology Research Centers in the US a short subway ride for you Hospital For Special Surgery/Rheumatology/Autoimmune DIosorders

don't settle for routine medical care....go to the best


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