Letter To Friends
From talking to our members and from reading research material we can make the following observations:
- Pain can be insidious and slowly eats away increasingly impacting your mood negatively and eventually, if it is not addressed, causing major depression.
- Pain for us can cause a lack of sleep.
- Because our disease is on the inside we often look quite well. It is for this reason that many GP’s fail to appreciate just how much pain we are in.
- Many GP’s do not have much experience with moderate to severe RD or Lupus.
- Our diseases are always associated with periods of pain, sometimes very severe pain over a long period of time. Flares can be long or short in duration.
- The pain can be in a number of places such as in the feat or hands, it can rotate around the body and it can move in cycles.
- Steroids almost always relieve or significantly reduce pain. If steroids relieve pain, it’s likely tied to inflammation.
- Rheumatoid pain can, in some cases, feel like a heart attack but it is not.
- Many of our members have feared talking opioids to ease their pain. This issue needs to be discussed with your clinician.
- Trying to stoically accept the pain is a waste of time. There is no glory in suffering.
The online electronic disease reference for doctors called “UpToDate” refers to patients with rheumatoid arthritis as having a low pain threshold. We disagree with this broad and apparently untested position. Indeed, we think that many of our members have developed a higher ability than “normal people” to carry pain. The UpToDate comments lead, we believe, to GP’s under estimating the degree and severity of pain associated with our conditions.
Attached are letters from members and friends of Dragon Claw providing a very personal view about pain in an RA/Lupus world. They are personal observations and are about sharing.