I have severe m.E. (cfs). My condition has deteriorated so I can no longer leave home. What is the best way to receive good palliative care from home?
Don't give up. Chronic illness is taxing but chronic pain especially so. Making sure you are on an effective anti-depressant and keep strong medication to a minimum. It is imperative if you want to get better. It's easy to use large dosages of medications that just mask symptoms but don't actually help. Do what it takes to get out of the house and live life. Work with your doctor and don't give up living.
Visiting physicians. There a more and more doctors that do house calls. Like myself. We also work with the visiting nurses as well as hospices and give a team approach to care . The focus is now more on quality of life instead of. 'cure " most testing and treatments that we do in the hospital can now be done at home. You may refer to the american academy of visiting physicians for further assistance let me know .
Possible testing. If you have insurance, a friend or relative, they can act as a coach. Then a physician can order certain services for you at home. However, certain labs may help show the cause: ecp, vegf, vitamin d, mmp-9 should be under 300, western blot, c4a ria, tnf-a, il-6, il-1b, cd57/8, dihydrotestosterone or Dht and many others. If these are unusual you have a possibly treatable cause. .