• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Opioids in the treatment of ME/CFS patients

Kati

Patient in training
Messages
5,497
Rebooting this thread as I'm looking for advice on how to actually get a doctor to write a script for pain meds?

I've been eating anywhere from 3-9 ibuprofen daily for pain, for several months now. For 27/30 days of each month, this is fine. I still have pain everyday but it's mostly minimal and I can tolerate it.

Unfortunately, the other 3 days of the month (they're random, not consecutive) my pain is so severe that I can't even move without screaming. My GP refuses to prescribe opioids for anyone (thanks to the scare tactics of the DEA and CDC), so anyone needing more than ibuprofen for pain, he refers to a pain management clinic.

I'm ready to ask for a referral but because I have a diagnosis of fibro and depression (in addition to CFS), I know they're going to want me to take tricyclics, cymbalta, gabapentin, or lyrica before giving me anything else (IF they even offer anything else).

All of this would be fine except that I've already tried literaly every one of the above drugs with a different doctor and they didn't help me. The side effects were horrible and all of them made me worse. Plus, I really only need the extra pain relief a few days each month.

I don't know how to express all this to the pain doctor and have them listen to me, especially as a new patient. Maybe I'm just thinking it'll be worse than it is but my mom has been in pain management for years (in this same geographic area) and has been treated horribly. She has multiple, severe back problems and suffers in pain constantly. Opioids are the only thing that provide even a small bit of relief for her and the doctors are trying to take her off them. She's scared and suffering. It's really awful. :(

I've been holding off on pain management because of all this nonsense but it's getting harder and harder for me to manage my pain. I really do not want to go through all those drugs again just to "prove" to the doctor that they don't work. But with the current crackdown on opioids, I don't see another way.

Does anyone have advice on this? Has anyone actually been able to get a script using the diagnosis of ME/CFS or fibro and not another disorder/injury?
Hi @bspg i just wanted to say that I have read your post and i am very sorry you are going through this.

I will not bore you with 'have you tried x,y,z alternative?' I am very sure you tried everything. It is a tough situation, especially with the crack down and supposed evidence against opioid drugs.

In the eventuality you meet a new doctor for your pain, i would suggest you write a description of your pain, what kind of pain and where, when does it start, for how long, what you have tried (list everything you tried for that particular entry) what works, and what doesn't. It may be helpful to hold a daily pain journal with level of pain (0-10 scale) and the impact on your life so the doctor can have a clear overview of what is happening. Your current GP would also benefit from your pain journal and write up.

I would not mention ME/CFS as a reason to get pain medicine. I do not know about fibro but i would not think it would be favorable either, unfortunately.

Best wishes
 

CFS_for_19_years

Hoarder of biscuits
Messages
2,396
Location
USA
It sounds like your doctor is protecting himself by not prescribing opioids.

I take opioids on a daily basis for conditions other than fibro. I take pregabalin for fibro.

IMHO, I don't think it's safe to be taking that much ibuprofen on a daily basis forever. Ibuprofen, like other non-steroidal anti-inflammatory drugs (NSAIDs), has several potential side effects. The two most frequently affected organ systems are the renal (kidneys) and gastrointestinal (GI) systems. In the case of the former, kidney damage, usually reversible, can result from chronic ingestion of NSAIDs.

Once you get the referral, ask the pain specialist's office if they have an intake form that you can fill out at home, rather than right before your appointment. This will allow you enough time to provide accurate information. It may helpful to add one or two pages of your own separate summary.

If your main type of pain is the aching burning type of fibro pain, it may be tough to get them to put you on opioids, especially since your pain is only severe a few days a month. Your documentation that you've tried a lot of other things and the fact that they've only made you worse will be important, so I would list those on a separate page, and include the adverse side effects that you experienced.

Do you lose sleep on the days that your pain is severe? Let them know that your pain keeps you awake until...(what time?). I would also document the amount of pain medication you are taking right now, on a one-page medication chart like the one here.

med chart.jpg


That way, they can see exactly how much ibuprofen you are taking and when. I've never used a pain diary, but I've used calculated the percentage of nights that pain interfered with sleep, which has sometimes been in the range of 70-80%.

I've taken everything you've mentioned (tricyclics, cymbalta, gabapentin, or lyrica) with varying success. I wonder if a pain specialist will suggest Ultram (tramadol). It worked great for fibro pain but was really hard on my stomach, so I couldn't take it.