I challenged you to Ask Me Anything and I'm glad you have taken me up on my offer. So today I want to answer some questions I have recently received:
Q. How do I get pain relief for chronic myalgia? My general doctor seems useless and can't find the cause. I've been to every specialist to find the cause. Do I have to personally schedule an appointment with a pain specialist?
A. I am fortunate enough to have the type of medical insurance that allows me to self-refer to a specialist. I have taken advantage of this option numerous times during both the diagnosis and treatment phases of my chronic pain conditions. If you don't have that option, don't give up and let your managed care health insurance stand in the way of getting the care you need. I suggest calling them if your doctor won't give you a referral and ask to speak to a care manager. You might also consider changing primary care doctors to see if another physician might be better able to address your medical needs.
Personally, I have seen specialists in many different fields, including neurology, rheumatology, rehabilitative medicine and pain management. Some I see on an ongoing basis; others consult and then ask my primary care doctor to treat me and follow-up on their recommendations.
While I agree that having your primary care doctor do the referring is the ideal situation, I have come to accept that primary care doctors don't always do this.
Honestly, I think you have answered your question for yourself when you asked, "Do I have to personally schedule an appointment with a pain specialist?" One way to look at this task is that it is burdensome, time-consuming and stressful. You can also look at it as taking a step towards actively participating in your health care and being your own health advocate.
I think it is reasonable to ask for pain relief from your doctors and I hope you find the answers and treatment options you are seeking. That said, I know from my own experiences that finding pain relief is sometimes a difficult, complex, perplexing and often elusive proposition. However, I have not given up hope that science will continue to discover what causes physical pain and, more importantly, what it takes to treat it fully and successfully.
Q. How do you deal with the sadness and or guilt that comes along with missing family or other types of social occasions? I find that's when it hits me the most. It's like my condition slaps me in the face. I would love to hear how you get through that.
A. Being a very outgoing and social person, this is a consequence of chronic illness I actively confront on a ongoing basis.
I have gone from feeling very sad and inadequate in my ability to be a good friend to accepting that I live life at a much different pace now which precludes a lot of social interactions. I'd like to say that I have processed this issue and have come to a place of understanding and peace, but the truth is my feelings on this subject can vary as much as the seasons.
In the end, what helps me the most is keeping these thoughts in mind:
- Socializing is an important part of my life.
- Socializing takes a lot of energy, both physically and mentally.
- I choose to actively manage my chronic pain and fatigue, which often means limiting my social interactions.
- I can ignore my need to limit my social interactions, but then I must be willing to live with flare-ups and a lower level of functioning.
- I can choose to be unhappy about my limited social life and steep in my grief and guilt.
- I can choose to relish the social life I can participate in and allow those moments to sustain me until the next social event I am able to attend.
So yes, chronic illness still does occasionally slap me in the face, but really it's just a reminder that I need to keep reframing my perspective on my current situation and focusing on what is possible so I don't miss out on what socializing I can enjoy.