Muscle Tightness/Pain - Myositis

Good morning everyone. I wanted to see if anyone of you are able to add to my experiences. I have not been truly diagnosed with lupus at this point - however I do have many symptoms. My symptoms started 2 1/2 from a neuromuscular standpoint and I was initially told that it was likely multiple sclerosis. As time went on, my work ups for MS were negative. My symptoms slowly started building over time (extreme fatigue, joint pains, joint swelling, rashes with sun exposure, etc. ). I was given Plaquenil, folic acid, and prenatal vitamin starting a few months ago (I had also gotten very anemic). My extreme fatigue is so much less. The main symptom I struggle with now it extremely tight muscles in my neck and shoulders (which I have also been diagnosed with myositis. Some days this is so unbearable and the only relief I can get is from taking a warm bath in epsom salts and taking a klonipin at bedtime and applying heat. It will be worse if I have done a lot of activity during the day with lifting small items, etc. which my muscles are weak anyway.

Last year I was told that I had an area in my right breast that told was fibrocystic based on scans, etc. This area is still palpable and I have so much more pain, discomfort and stiffness in that breast and literally on that side of my upper body - all along my chest wall, shoulder, up the size of my neck and even down into my right arm (at my elbow and in my fingers) which almost seems neurological to me. Have any of you had experience with anything such as this? It can be really bothersome during the day once I put my bra on. I'm due to have a mammogram within the next month. I'm tempted to push to have the fibrocystic lump removed because I have a strong family history of breast cancer and I was told last year that my neurological symptoms could be related to a paraneoplastic syndrome and immune mediated responses.

Any opinions you all can provide would be greatly appreciated.

Have they don an MRI of the cervical spine to rule out degenerative disc disease. I have severe bone spur formation and my neck and traps are painful. The muscles are in constant spasm. I have not been able to wear a bra for 4 years. I wear a camisole under my shirts. I just started PT this week to try to reduce spasms and regain some range of motion. I have recently started together headaches from the spasms

I had a similar problem and at first Drs. thought I had MS too. Turns out I had a deformity in boh my wrists and had total wrist reconstruction. Before the surgery I had similar pains like you, neck, shoulders, shoulder blade area and wrist and elbow pain. At that time I had a positive ANA but no further testing was done and was told it was all due to the deformity. In hindsight I think the deformity was due to the lupus and not the other way around. Since then other deformities have popped up on my knees, feet, hips and coxis (spelling?)area. It’s been 13 yrs since the surgery and i still have the same pains but worse because now my wrists are fused and have limited mobility. I guess what I’m trying to say is that sometimes surgery doesn’t make it better cause then you get a bunch of other problems when instead docs should be searching for the correct diagnosis. I was finally diagnosed with lupus 2 years ago. Now I understand why I feel the way I do and know that I just have to take it easy and rest at times, stay out of the sun and take my meds. PT is great because they know anatomy and really try to help ease the pain. I hope you feel better real soon. Sending positive energy your way.

Mkas74, I have terrible neck, shoulder, arm, leg, and back pain--all due to lupus. I recently started going to a PT---he also gives me exercises to do at home. Other than the fact that he is about to kill me (ha!) I think PT is a good option. What is difficult for me is the lactic acid that builds up....VERY painful. But I am determined to try and get better. Am looking for an inexpensive gym that has a heated pool...water therapy is the very best. All the best to you, LupanCatwoman

Thanks for the replies!

Hi Dancer Mom. Some people do better with helps calm inflammation. Moist Heat is good for muscle cramps.

If you check my prior posts you will see how similar our pattern is...I had breast implants. Only thing that helped me

was to have them removed. Still not the person I once was...but doing so much better then most. Now days doctors

think I have Lupus...but it is from the foreign body reaction to the silicone that leaks into the my case for about 20 years. Interesting diagnosis you were given ...what type of doctor for neurological symptoms? Hope you keep dancing.