Pain meds for CFS: expert review anywhere?

[Sasha]

I have inflammatory spinal and back pain (to the left of my spine) that comes and goes and that is part of my ME/CFS. It flares up particularly badly when I am stressed, which I have been over the past few months. The pain is now enough of a problem that I need medication.

So far, I have tried mefenamic acid + paracetomol (ineffective), cocodomol + paracetomol (made me too dopey to function), naproxen + paracetomol (ditto), and ibuprofen + paracetomol (made me nauseous, indicating unsafe to continue). None of these, including the ones I stopped due to side-effects, were effective.

I'm continuing to work with my GP on finding something that works. He says it's largely trial and error and is aware of fibro pain (I don't know much about fibro and don't know if my pain is anything like it - it is only in two locations, not symmetrical, so maybe it isn't).

Is anyone aware of an expert review of inflammatory pain in ME/CFS and what works for it? I know many of us will have individually found something that works but we all have different biochemistry so rather than recommendations based on personal experience, I'm after a review written by an ME/CFS specialist with experience of treating lots of patients and who is using a rationale based on a likely viral cause for the illness to inform the order in which they try pain meds.

I'm about two months in to trying these pain meds in what seems like a pretty random order with hundreds ahead of me and so far all I've had are side-effects and no pain relief. Hoping someone can point me to a good expert review! :sofa:

 

[boomer]

My daughter finds magnesium injections help a lot but she is at the point she can't stand taking the needles. She was going to try nebulizing but i don't know if that is effective.

 

[Jenny]

Here's something from David Bell, Sasha.

http://www.prohealth.com/library/showarticle.cfm?libid=8206

Excerpt below:

Medications For Pain By Class:

1) Non-steroidal anti-inflammatory drugs (NSAIDs). This class is the standard pain relievers, many of them available over the counter. If the response is not enough, make sure you are using them effectively and at the right doses. For example, ibuprofen may be effective taken three times daily to prevent severe pain, but may appear not to work if used only at crisis times. All NSAIDs can cause upset stomach, and even ulcers.

2) Acetaminophen (Tylenol and others). This medication has no effect on inflammation, but can be useful for headache and muscle-joint pain. It is a reasonable first attempt. It can cause liver problems if used in very high doses and should never be taken excessively. If the regular dosage does not help, either add a NSAID or move to another medication. Do not push the dose.

3) New NSAIDs. For reasons I do not understand, sometimes other NSAIDs work better than ibuprofen, and can be taken regularly and less frequently during the day. It is reasonable to attempt others in this class, usually by prescription, before going to stronger medication. These would include Diclofenac (Voltaren) at 50mgs three times a day, or the long-acting Voltaren XL at 100mgs once daily, or Sulindac (Clinoril) at 100 to 200mgs twice daily. Do not exceed 400mgs daily. Naprosyn is another. Arthrotec is a brand that combines diclofenac with the drug misoprostal to protect the stomach (50mgs/200mgs up to four times daily). Do not take if pregnant or even if pregnancy is likely.

4) Tricyclics. These drugs are the old fashioned antidepressants and improve pain, but must be taken regularly to be effective. They should be used to prevent pain, and never be taken just when the pain is bad. This is one type of medication that must be taken regularly, good days and bad. ME/CFS patients are usually sensitive to them, and lower starting doses should be used.

5) Tramadol (Ultram - 50 to 100mgs three times daily). I like this medication partly because the name sounds like Kurt Vonnegut designed it. It should be used with caution in conjunction with Prozac and tricyclics. It is a cousin of the NSAIDs and has some effect on the serotonin and norepinephrine systems, as well as being a very weak opiate. While it is unlikely to cause dependence, some say it is unlikely to be of value. But it is worth a try.

6) Baclofen. This is a nifty drug its cheap, and when it works, its great. Unfortunately, it does not work very often. It is best when the muscle pain is of a cramping or spasm quality, which is why it is used in multiple sclerosis. It is related to the benzodiazepines such as clonazepam or alprazolam and should be used cautiously with these. Some sedation is likely, and the dose should not exceed 10mgs three times daily.

7) Seizure medications. These must be used with caution, as the side effects can be significant. But when they work, they are great. These are not casual medications.

Neurontin (Gabapentin 900 to 1800mgs daily). This medication was developed for seizure disorders and may cause dizziness or increase fatigue. The mechanism of pain relief is uncertain. Significant side effects are possible and it should be reviewed carefully before use.

Carbamazepine (Tegretol 100mgs twice daily to a maximum of 1200mgs a day. Tegretol XR 100 mgs twice a day.) This seizure medication can cause excitation, bone marrow problems and allergic reactions, and should not be used with erythromycin, Prozac and other drugs. It is a cousin of the tricyclics and sometimes gives good pain relief.

8) Narcotics. While these drugs always have the potential for addiction, it is said that addiction rarely occurs when these drugs are used to treat severe pain. Intermittent use is best if possible. Doctors are usually reluctant to use narcotics because of the risk of addiction; you don't need any more problems than you already have. Propoxyphene (Darvon) is my least favorite drug in this class, because it may have a high addiction potential yet offers wimpy pain relief.

A Note in Conclusion

When people hear about the side effects of medications, they frequently become afraid and unwilling to try medications. If you were to see the side effect profile of acetaminophen (Tylenol) you would probably never take it, because it includes death. When 280 million people use a drug, side effects are bound to occur. Keep in mind that if you saw the side effects and dangers of taking a shower (e.g., slipping in the bathtub) people would not bathe. That, however, also has its side effects (loss of friends, physicians, etc). Use common sense. Any medication that does something will have side effects. Some of the safest medications are only safe because they do nothing at all. Consider medications as you would consider driving a car. They are both inherently dangerous, but are helpful if used properly.



Jenny

 

[Sasha]

Thanks, Jenny, this is great - I also had a look at the whole article, which has some interesting stuff at the beginning about general strategies in relation to timing of meds, whether to take them continually, etc.

I don't know if your daughter has tried any of these, boomer? I had Mg injections years ago - didn't do me any good but I remember they hurt!

 

[kerrilyn]

Just to throw another idea out there for pain management, is a TENS machine. I've used it for burning, intense pain which narcotics didn't have any affect on except make me nauseated, or other meds that had me too doped up to function. The pain used to keep me up all night but I'm able to sleep by wearing the TENS unit to bed.

 

[Sasha]

Just to throw another idea out there for pain management, is a TENS machine. I've used it for burning, intense pain which narcotics didn't have any affect on except make me nauseated, or other meds that had me too doped up to function. The pain used to keep me up all night but I'm able to sleep by wearing the TENS unit to bed.

Thanks, kerrilyn - I've got an appointment with a physio for the pain and I gather they will loan me a TENS machine. I'm surprised you're able to sleep with one - I thought they delivered electrical pulses that would tense your muscles or something - that's encouraging that you've got on so well with yours. I've had the same side effects with pain meds as you have so far - I'm beginning to despair of finding any I can tolerate.

 

[kerrilyn]

Thanks, kerrilyn - I've got an appointment with a physio for the pain and I gather they will loan me a TENS machine. I'm surprised you're able to sleep with one - I thought they delivered electrical pulses that would tense your muscles or something - that's encouraging that you've got on so well with yours. I've had the same side effects with pain meds as you have so far - I'm beginning to despair of finding any I can tolerate.

It does deliver electrical pulses but doesn't tense muscles, it blocks pain signals to the brain. There are different settings with different frequency patterns. High frequencies are said to activate delta-opioid receptors and temporarily closing the 'pain gate' while low frequencies help produce endorphins and activates serotonin receptors. Even when my husband uses it for the occasional back pain, he relaxes and gets sleepy.

Personally, I think using TENS for pain management is a little under-rated. I mean GP's will try every pharma solution first, but with ME/CFS we are notorious for having issues with side effects. Now that being said, I was questioning myself feeling electromagnetic sensitivity and wondered if the TENS was affecting me negatively - so nothing is perfect. And like you said, we all have our own personal experiences with any treatment.

Hopefully you can find something that will work for you or get to use a TENS during your search for a pain med that will work for you to at least get a break from the pain.

 

[Sasha]

Thanks, kerrilyn - actually a TENS machine was one of the first possibilities that I raised with my GP because I'm concerned about side-effects of long-term use of painkillers (the pain is a long-term issue, as I have explained to him). Maybe he hasn't provided it first because he can't - not sure if in the UK it requires a physio appointment to get one. I hope I'll be seeing the physio in the next very few weeks.

He did ask me if I'd tried acupuncture etc. but I'm pretty much housebound so anything that requires regularly seeing a practiioner of any kind is out.

I think you're right that non-pharma stuff is strangely far down the pile!

 

[kerrilyn]

I'm not sure how it works in the UK Sasha, but in Canada it is physio's that seem to mention the use of TENS, not GP's. I went to physio for shoulder/elbow tendinitis a few years ago and you told me where to rent an IFC machine. IFC (Interferrential Current) is slightly different than a TENS, and more expensive. IFC is suppose to help heal soft tissue injuries by promoting blood flow to the area. I liked it, it felt good and helped the tendinitis.

When I was at the end of my rope with the burning pelvic/low back pain, I went back to the store who rented/sold the machines (they also sell compression stocking and SAD lights). They didn't recommend IFC for the pelvis (endometriosis and all that), but suggested a TENS instead. They had a 3 month rent to own option so I could try out different models too. So, I didn't need to get it through a physio or GP, but if you want things to go through insurance than you probably would. Hope that helps.

I tried acupuncture years ago, for fibro pain. It made me nauseated too, and didn't do much for pain. It was too much for me overall I think. I tried it again (more localized) for pelvic pain and it was ok, (didn't make me feel ill) but wouldn't say it benefited me much pain wise. Like you, I prefer something I have 'control' over, and not have to go out to app'ts.

Good luck, don't lose hope.