‘Muscular’ pain

[chocaddict26]

I have a variety of autoimmune related symptoms including Raynauds and tested positive for scleroderma antibodies amoung others. I was just posturing to see if anyone else has had problems with muscular pains as well as spasms and tightening. I have continuing low vitamin D levels which has caused issues with my bones I.e stress fractures but despite numerous medical sites linking low vitamin D levels to muscle pains and problems my rheumatologist doesn’t believe it’s this.... but also has no explanation for it. I did test postitive to myositis but it’s more a pain than a feeling of my muscles weakening. In the meantime no other solution or reason has been found and the pain in my legs is unbearable I’ve had to stop driving my car which is devastating!

[Cole57]

I have the same Scleroderma and other autoimmune conditions as well as Myosotis. The Myositis causes muscular weakness but also muscular pain in myself. It makes things like stretching my arms and even walking painful. It’s like a constant aching feeling. I currently have Ritiximab for the inflammation and to try and ease the Myositis. It works for maybe 2/3 months then wears off so it’s something I have every 6 months. You need to speak to your rheumatologist to see if there is more that can be done to ease your Myositis.

[Joan59]

Hi you have just discribed me except I get muscle pain in my upper arms and hips too. I am not on anything for this yet.

[Fluffy2]

I too suffer from muscle pain and muscle weakness so I sympathize. I have mixed connective tissue disease and so a variety of symptoms from the lupus family. I have found that since starting to exercise more including the use of a pool, taking it gently and pacing myself, my pain is more bearable and my body stronger. I often experience more pain overnight from exercise but this is manageable and the benefits the next day of feeling stronger and achieving more outweigh this pain. I hope this helps. Ask to be referred to a rheumatolgy physiotherapist who will advise you further. You should be able to do this via the consultants secretary if you don't have an imminent appointment.

I hope that this is helpful and best of luck.

[chocaddict26]

Thank you all for your replies so helpful, feel a lot clearer going back now and asking for some more treatment for this and its just been left compared to the other symptoms and can be so debilitating!

[beaglab]

You should find a doctor who is more helpful. Of course, Vitamin Dcand calcium will help you. Try the muscle rub in the green can, JR Watkins Menthol Camphor. It is very soothing.

[chocaddict26 in reply to beaglab]

I have been starting to think the same thing this week beaglab, his specialty and interest area isn't really scleroderma/myositis and it just doesn't feel like the pain gets taken seriously! Okay i will try that thank you for the recommendation

[beaglab]

The use of ginkgo biloba and 500 mgs Niacin twice daily will help you. Sally Beauty Supply also sells electric salon mitts. Plug them in and get warmth to your hands, so soothing. Rest and read. Be comfortable. You are special and loved by many people.

[Goldyukr]

I also have myositis and much muscle pain. In addition, I have something similar to Raynaud’s but less predictable and have terrible pain from my knees down that makes me keep my legs elevated most of the time. So yes, driving a car or walking or standing long are very painful. Still searching for help on this myself. No one seems to care much about this symptom but I keep searching.