Neck and head

[bertreeed]

Hi all,

I am experiencing problems holding my head up. It's hard to explain, but I believe it's my neck and back. Has anyone had to deal with that and if so, what did you do?

[dianekjs]

Hi, if you could provide some context it would be helpful - i.e., do you have confirmed scleroderma and if so is it diffuse or limited? What are your other SSc symptoms, and what is your antibody type? Any other muscle or movement challenges? Has anyone checked your CPK (CK) level? Myositis can be associated with systemic sclerosis and can cause symptoms such as you describe, but so can certain neurological conditions. What do your doctors say?

[bertreeed in reply to dianekjs]

I haven't spoken to a doctor abou this. My diagnosis are scleoderma, pulmonary hypertension. This is something new. I'm having trouble holding my head up. I have to look sideways at people and to use my walker. I have made an appt at a head and spine specialist.

[dianekjs in reply to bertreeed]

I think you need to speak to a scleroderma specialist about it, and ask about the possibility of myositis. When SSc is in the mix, more often than not it is the underlying cause for secondary conditions and complications. If the head and spine specialist isn't knowledgeable about systemic sclerosis/scleroderma and all of its complexities, he/she may not be able to identify a possible relationship. Difficulty holding the head up is a specific symptom of polymyositis, and polymyositis is known to sometimes overlap with scleroderma. Your issue may be unrelated, but with your existing diagnoses myositis should be ruled out. I really hope that you get some answers - and the care you need soon. Please keep us posted and best of luck to you.

[Goldyukr]

I experience trouble with this from time to time, but it is from my myositis and secondary neuromuscular junction dysfunction (similar to myasthenia gravis). When I am experiencing a flare with the secondary condition, then I have trouble sitting up, standing, walking, need two hands to pick up a glass to drink. I do not have scleroderma though so I don't know if that would also cause that type of symptom. Hope you can figure it out and get some relief quickly.

[bertreeed in reply to Goldyukr]

Thanks Goldyukr

[Suzyannayoung]

Hi there ,I have scleroderma, when I was diagnosed 5 years ago and had sudden onset of your conditions but it was all over my body, I could Hardly hold myself up. My specialist picked up straight away from a blood test, crazy high ck reading, I had polymytosis . I would ask for an earlier appointment with your doctor as if it is this the sooner you get treatment the less damage will be done.

[bertreeed in reply to Suzyannayoung]

Ok, will do.

Thank you!