Dealing with the Constant Hum of Pain in Myositis

The various tests that you mentioned are unfortunately not very specific. While a positive ANA and a positive PM/SCL are helpful, they are not diagnostic. A calcium deposit in the shoulder can be seen in DM, however the details of the findings determines whether it is suggestive of DM or not.

It is very critical to have a diagnosis, as you point out, and having an evaluation at a university, such as John Hopkins, where they frequently evaluate patients with myositis, can be very helpful.

If your pain is from inflammation, it is much better to take prednisone because it suppresses your immune system and can help control the myositis. However, prednisone has significant side effects, therefore, if the pain is not related to inflammation from your myositis, ibuprofen might be appropriate. Always discuss with you specialist to know the specific reason to use these medications, because all medications have risks.

Patients with pain from myositis usually have generalized pain, however in some cases—for example, a calcium deposit—a can have localized pain. Having localized pain without generalized pain may have other causes and would need to be evaluated.

It depends on the specific cause of the pain, as discussed in the introductory remarks. However, if your current pain is from active myositis, then a change in your immunosuppressive regimen is needed.

Without testing it is difficult to be certain, but your symptoms at night raise the possibly that you may have a sleep disorder that could be causing these symptoms. I would suggest that you discuss with your primary care physician and your specialist about the possibility of doing a sleep study. If you are having cramps, additional evaluation may be needed.

As I mentioned in my introductory remarks, it is important to determine the cause of the pain. However, based on the way you describe the symptoms it is possible that, because of your disease, your muscles are deconditioned and you are unable to tolerate activity as you did prior to your illness. A supervised exercise program may be helpful, and I would recommend that you speak to your specialist about this.

All medicines have risks. The cardiovascular risk associated with this type of medication is relatively small. The main question that needs to be addressed in discussion with your specialist is, is this the best medicine for what is causing your pain?

Based on the treatment that you are being prescribed, it appears that your specialist attributes at least some of your symptoms to neuropathic pain, such as seen in fibromyalgia. If the evaluation has determined that fibromyalgia is the cause of your symptoms, Cymbalta may be a reasonable drug, in addition to a supervised exercise program.

It is difficult to say with certainty, but the fact that your pain improved after a change in immunemodulatory treatment suggests the possibility that your DM was not in complete remission in spite of Cellcept, a drug that is often effective in treating myositis. The fact that your pain resolved with IVIg confirms what is widely accepted, that IVIg is also an effective medication in DM.

This a very important but difficult question to answer, because if you have multiple diagnoses, it is very unlikely that there is any specific data that addresses the risk. There is also the risk associated with medication that may be very harmful in pregnancy. I suggest that you work with your myositis specialist to make sure that it is okay for you to become pregnant, which includes a thorough evaluation and assessment that the disease is not very active. Also, an evaluation by a high risk obstetrician would be extremely helpful.

Many autoimmune diseases that affect the muscles are systemic diseases, but there are patients who have multiple autoimmune diseases present at the same time. Establishing the different diagnoses may be helpful in developing a specific treatment strategy.

I think an evaluation of the cause of the pain is needed in order to address it specifically. There are patients who have inflammation in their joints when the bowel symptoms from ulcerative colitis are quiescent, but these patient usually do not have muscle pain but do have joint pain. It is not uncommon for patients to have more than one autoimmune disease and also a family history of autoimmune disease.

It depends on the cause of the pain. If there is continued evidence that there is an active inflammatory process, then additional immunosuppressive or immune modulatory therapy would be appropriate. Rituximab may be a useful treatment in some patients with myositis, however the evidence supporting its wide use in myositis is lacking.

Unfortunately, at this time it is hard to give a definitive answer to your question, but studies that include patient-reported outcomes can help address these question in the future.

The most important way to determine whether a specific test is needed is through a close follow-up with a specialist that manages patients with myositis. History and physical exam provide critical information that helps determine what test to obtain. Regarding imaging, MRI is very helpful and can assist in the decision making process. There is no specific consensus regarding the frequency of such studies, and the best way to make the determination is based on the above. Yes, there is reasonable data that suggest that MRI can be very valuable tool in determining disease activity as a part of a complete evaluation.

It is difficult to specifically address your question since most studies explore the therapeutic effects of various regimens without specific determination of fascia inflammation as a criteria of entry into a clinical trial.

The fascia is a sheet of connective tissue, primarily collagen, that separates muscle tissue. Inflammation in the fascia can be an important part of the disease in patients with DM. We have become more aware of this since we have begun using MRI in the last decade to image the muscle and fascia. Additional studies would likely need to be made to prove that fascia inflammation is the cause of pain in DM exclusively.

Hopefully never! A majority of patients with DM have no pain.

There are certain conditions that cause more discomfort at the end of the day. However, if the pain is specifically present at night, and only at night, that raises the possibility of a sleep disorder contributing to your symptoms. As discussed in my introductory remarks, a thorough evaluation of the cause would be needed.

It depends on the cause of the muscle pain. If the pain is directly related to active disease, then more immunosuppressive medication is needed. If the pain is from another cause, then as discussed in my introductory remarks treatment will be different.

The fact that prednisone helps your symptoms raises the possibility that your DM may not be in complete remission. I would recommend that you talk to the specialist that is treating your DM to confirm that they agree with this assessment and with adding immunosuppressive medication (or modify the medication you are currently on other than prednisone) in order to control your disease better. This should facilitate tapering of the prednisone. Additionally, the symptoms of numbness and tingling suggest that you may be developing a neuropathy. This will require an additional work up to establish a diagnosis and also determine the cause.