Pain control in CFS is a tricky subject. The first time I said to a doctor that my pain was really bad he said that he wouldn't offer me anything stronger than over the counter painkillers because it would encourage me to do more if my pain was reduced, and I needed to do less because my body clearly couldn't cope. I did understand where he was coming from but I was having sleepless nights in absolute agony and was living in constant pain. I was also trying to complete my schooling, so cutting down on activity wasn't really an option, particularly given that I was newly diagnosed so the idea of anything like a wheelchair wouldn't have been something I could accept.
I lived for many months with the belief that CFS patients shouldn't have prescription painkillers to prevent overactivity, until my first severe relapse. I had never known pain like it. I lost consciousness because of the pain and came round in the hallway of my student accommodation (I had been trying to get to the bathroom), I crawled back to my room and lay in bed, feeling close to passing out on multiple occasions (loss of vision, dizziness etc). I called my doctors surgery and a doctor eventually rang me back, she refused to do a home visit, but prescribed some antiemetics and painkillers- Codeine phosphate, which thankfully a friend agreed to collect for me. It was the first time I had had any prescription painkillers and the relief from the pain was overwhelming- I practically cried when the unbearable pain finally reduced. Pain, particularly during relapses, can be incredibly severe. It can be very debilitating and can be the cause of other symptoms. I feel very strongly that any patient, including CFS patients, who experience this level of pain MUST have access to appropriate pain relief. Yes, explain the risks of side effects etc. Yes, explain that you're reducing the symptom without altering the cause so they must still rest sufficiently. But please, don't withhold necessary relief. Pain of that sort of severity is simply not bearable and it's just not necessary to put a patient through that. Patients need to feel that they can cope with relapses to reduce their dependence on doctors and give them a sense of control, but they often need access to medicines to be able to do that.
As my condition has deteriorated, my pain has become more difficult to manage on a daily basis. I have started anticonvulsant drugs to help with nerve pain in my face, and have very recently started taking a tramadol based medication (Tramacet), in addition to an antispasmodic, to help with abdominal pains. I am making necessary lifestyle changes to manage my pain and symptoms too- I now only really walk inside, around home and Uni, and use a mobility scooter the rest of the time- so I am not relying on medication alone to manage my pain. Medication and physical activity reduction combined have reduced my pain significantly, although I am still in quite a bit of pain, and walking really hurts. I am also doing some stretches, as directed by my specialist physio, to try to improve the tone of specific muscles in my ankles and legs to try to improve my walking and stop my left leg from dragging and tripping. I am increasing these very slowly, to try to avoid payback, but feel that it is important to try to improve these muscles if possible, to avoid greater pain from using incorrect muscles in the future.
I don't think doctors always appreciate the severity of pain CFS sufferers experience, and it's affect on our lives. It's up to us to help them to understand: explain the symptoms that are being caused by your pain, explain what it is stopping you from doing, give it a score out of 10 (and please don't say 10 or higher, that makes it a completely pointless exercise, assume that at 10 you'd be unconscious). Try not to get emotional about it to your doctor, just give them the facts in a way that they will hopefully understand, and work with them to come to a decision regarding pain relief- whether it's long-term management or just needing something to take as needed when the pain is unbearable.
You need to be able to stay in control. Chronic pain patients need to be treated appropriately- pain medication should not be withheld simply because the doctor is concerned about tolerance, dependence or addiction, if there is no reason to believe the patient they are treating is at increased risk. Yes, tolerance can mean higher doses are needed over time- but the medication is necessary. Yes, patients may become dependent- but what's the harm in that? Asthma patients are dependent on inhalers, diabetes patients dependent on insulin, etc. Pain needs to be managed too. Addiction is actually rare when pain medications are being used appropriately to manage pain, so it shouldn't be a huge concern, although it's obviously something to monitor for, but please doctors- don't become overly suspicious.
There are risks associated with not treating pain. Untreated severe pain can increase blood pressure increasing risks of strokes and heart attacks. Untreated chronic pain causes changes in the brain. Chronic pain can actually cause biochemical changes that cause depression. Dealing with chronic pain can cause situational depression. Living with chronic pain may not be deemed life threatening, but it is most certainly quality-of-life threatening.