What drugs or tests are useful for pain that can be used daily?

[glutenintolerant]

My girlfriend has eds and experiences quite a bit of pain. For neuropathic pain gabapentin works pretty well. But the joint and deep muscle pain continue.

The only things that have her serious relief are butalbital and interestingly Cymbalta(but no more). When she started taking Cymbalta she was doing much much better but now after about a year and a half it seems to have stopped working and she gets no pain or mood relief from it but still has the negative side effects like weight gain so she's trying to come off it. From what she said it's almost as if she feels worse than before starting it now.

It's not easy to get benzos, plus the risks of using long term. She's tried LDN for a day but felt so bad she didn't continue. I'm wondering if there's some other kind of painkiller that could work to make things more bearable or if there's any kind of comprehensive bloodwork that I could order that includes less common things like norepinephrine so that we can get a better picture of what seems "off" in the first place.

 

[heapsreal]

My girlfriend has eds and experiences quite a bit of pain. For neuropathic pain gabapentin works pretty well. But the joint and deep muscle pain continue.

The only things that have her serious relief are butalbital and interestingly Cymbalta(but no more). When she started taking Cymbalta she was doing much much better but now after about a year and a half it seems to have stopped working and she gets no pain or mood relief from it but still has the negative side effects like weight gain so she's trying to come off it. From what she said it's almost as if she feels worse than before starting it now.

It's not easy to get benzos, plus the risks of using long term. She's tried LDN for a day but felt so bad she didn't continue. I'm wondering if there's some other kind of painkiller that could work to make things more bearable or if there's any kind of comprehensive bloodwork that I could order that includes less common things like norepinephrine so that we can get a better picture of what seems "off" in the first place.

Chronic pain is hard to treat. Mostly the things she is using like gabapentin an anticonvulsant Med and Cymbalta an antidepressant for pain is what's generally prescribed.

She could try different meds in that category of drugs, instead of gabapentin use lyrica. Same with antidepressants especially the older tricyclics are commonly used for chronic pain and can help sleep like doxepin or Amitriptyline.

Maybe she just needs a narcotic pain reliever occasionally just so she can have some respite from the pain for a few hours can help alot. If she limits her use to something her dr agrees with eg 2 days a week, it might be worth looking into.

There are also n9n benzo muscle relaxers like baclofen or tizanadine that could also be helpful.

 

[bad1080]

i had a good experience with turmeric/curcuma powder/capsules (but not just curcumin extract), i had chronic pain in my hip and i believe it was due to localized inflammation. the only side-effect i noticed were some headaches but they were few and far between (taking it with food seemed to alleviate that). i took it for about half a year and the pain hasn't returned even after stopping it.

 

[maddietod]

i had a good experience with turmeric/curcuma powder/capsules

What exactly do you take, and how much? I have organic turmeric in the cupboard....

 

[bad1080]

What exactly do you take, and how much? I have organic turmeric in the cupboard....

here is the exact product i took: https://www.ebay.de/itm/143531413279 ("bionutra bio kurkuma")
but i only took one capsule per day (750mg). there's some black pepper in there too (to aide adsorption iirc).
here is a video by jarred younger about curcmin (an extract but iirc there's a study out there that found no statistical difference with just curcumin so i think it has to be the whole thing):

 

[Blazer95]

Since cymbalta is a snri wich can be contraindicated for Adrenalin reasons she could try an SSRI, for example Citalopram, escitalopram or Sertralin ?

Gapapentin and pregabalin both have pretty Bad tolerance buildup

 

[glutenintolerant]

Since cymbalta is a snri wich can be contraindicated for Adrenalin reasons she could try an SSRI, for example Citalopram, escitalopram or Sertralin ?

Gapapentin and pregabalin both have pretty Bad tolerance buildup

She's taken SSRI's before(prozac I think) and reacted horribly worsening all symptoms so I'm afraid to suggest another. You think she'll feel more pain continuing on gabapentin?

 

[Blazer95]

If she reacted Bad to SSRI i wouldnt also try Another.

I dont think she will feel more pain on Gabapentin but she has to be careful in building a tolerance....

 

[lenora]

Hello @glutenintolerant. I don't know if I have EDS but I have plenty of other problems, including neuropathic pain from one of my neurological illnesses.

If Cymbalta is no longer working, baclofen would be a choice but, to be honest not a great one. At least I never found it that way and I was on it for a period of almost a year.

Perhaps a trial of lyrica or amitryptiline (the first drug used; an anti-depressant) would be more beneficial. To treat my muscular pain, I now use methocarbamol (robaxin) and acetamatophen. I also make a point of getting out of bed and sitting in a comfortable chair...and that varies for each of us. Putting strain on muscles can lead to even more pain (as I'm sitting here suffering from it). I'll go to bed but won't lay in the area that I'm presently sitting. Your girlfriend may find that helpful.

Also, for muscle pain (& even neuropathic), I use Ace ice compresses. You can buy them at any drugstore and they come in varying sizes. They don't freeze solid, so it's OK to just lightly wrap in a linen tea towel, or put a regular towel over them and lay on them for 15-20 minutes at a time. I know that heat sounds better, but ice does a much better job of giving pain relief. Put them back in the freezer & stay off the ice for 25 min. or so. I've used this directly on my spine, large areas of my back and shoulders, under my arms, breast area and the front of the chest. It works very well. Just have a few of the packs....but start with one, the largest you can find and see how it works out. Most people will find some relief. Usually a lot.

@heapsreal gave you good advice, but bear in mind that we aren't doctors, just patients. Also, don't quit the Cymbalta suddenly or, for that matter, the gabapentin. Slow withdrawal is always called for with any drug. Contact your doctor about the requests you have. You shouldn't have trouble going on lyrica....I've been on it for probably 10 years now(?). Opioids never worked for me and you run the risk of true addiction. All medications should be discussed with your Dr. before quitting them. It's important. I wish you both well. Yours, Lenora

 

[kangaSue]

Drugs that boost nitric oxide such as nitrates are underappreciated for their significant analgesic properties and I get good pain relief from one of these (the partial nitrate nicorandil) for chronic pain in both the GI tract (gastroparesis) and pelvis (Pelvic Congestion Syndrome).
Another one I'll leave you to draw your own conclusions on is tadalafil which a web search of the term 'tadalafil chronic pain syndromes' will reveal can be another little known 'chronic pain medication' which I can also vouch for as being effective for the above pain symptoms at low dose (5mg daily).

 

[lenora]

Hello @kangaSue I'm very pleased that these drugs are working for you. Something that a lot of people do is give up on the drug before at least a month. Yes, stop immediately if you have symptoms of an allergy, but wait the other side effects out. Personally, it seems that I'm always waiting for some symptom to end, but it's often worth it.

I assume that most people know their own bodies best, so I should say that I'll leave it up to them. It's just not uncommon for drugs to be used for many purposes today....especially older ones.

Thanks for letting us know. I'm sure some people will be helped. If a supplement could work, trust me, I'd use it. Best of luck. Yours, Lenora

 

[kangaSue]

If a supplement could work, trust me, I'd use it.

I tried the supplement route first (arginine, citrulline) thinking using these to promote nitric oxide production would be much more gentle on my sensitive GI system but they proved to be far from the case.

 

[maddietod]

Take a look at this:

Dennis Younger, green light therapy for pain.

He also pinned this article by Cort: https://www.healthrising.org/blog/2023/08/25/green-light-therapy-fibromyalgia-chronic-fatigue-syndrome/

 

[lenora]

Thanks @Maddie. Interesting, but the presenter is right, more research, a lot more has to be done on this therapy. I found it interesting that green light is similar to plain old sunlight....so maybe someone like Howard is on the right track.

I'm on the opposite end of the spectrum though. Very pale skin, form skin cancers early and just can't be in sunlight. However, it may be a good use for green light therapy for people with my coloring. Interesting and I hope that it turns out to help many people. Personally, if given OK, I'd use it. Thanks again. Yours, Lenora

 

[glutenintolerant]

Hello @glutenintolerant. I don't know if I have EDS but I have plenty of other problems, including neuropathic pain from one of my neurological illnesses.

If Cymbalta is no longer working, baclofen would be a choice but, to be honest not a great one. At least I never found it that way and I was on it for a period of almost a year.

Perhaps a trial of lyrica or amitryptiline (the first drug used; an anti-depressant) would be more beneficial. To treat my muscular pain, I now use methocarbamol (robaxin) and acetamatophen. I also make a point of getting out of bed and sitting in a comfortable chair...and that varies for each of us. Putting strain on muscles can lead to even more pain (as I'm sitting here suffering from it). I'll go to bed but won't lay in the area that I'm presently sitting. Your girlfriend may find that helpful.

Also, for muscle pain (& even neuropathic), I use Ace ice compresses. You can buy them at any drugstore and they come in varying sizes. They don't freeze solid, so it's OK to just lightly wrap in a linen tea towel, or put a regular towel over them and lay on them for 15-20 minutes at a time. I know that heat sounds better, but ice does a much better job of giving pain relief. Put them back in the freezer & stay off the ice for 25 min. or so. I've used this directly on my spine, large areas of my back and shoulders, under my arms, breast area and the front of the chest. It works very well. Just have a few of the packs....but start with one, the largest you can find and see how it works out. Most people will find some relief. Usually a lot.

@heapsreal gave you good advice, but bear in mind that we aren't doctors, just patients. Also, don't quit the Cymbalta suddenly or, for that matter, the gabapentin. Slow withdrawal is always called for with any drug. Contact your doctor about the requests you have. You shouldn't have trouble going on lyrica....I've been on it for probably 10 years now(?). Opioids never worked for me and you run the risk of true addiction. All medications should be discussed with your Dr. before quitting them. It's important. I wish you both well. Yours, Lenora

Thank you, she's tried Lyrica but got too drowsy off of it and it doesn't feel much better than the gabapentin. She gets a lot of muscle and joint pain so maybe something like robaxin is a good option.

So in your case muscle training only makes things worse? She's told me she felt better after lifting weights for a few weeks(it was very painful before that point) but she soon stopped and now it's very hard to start.

 

[keenly]

i had a good experience with turmeric/curcuma powder/capsules (but not just curcumin extract), i had chronic pain in my hip and i believe it was due to localized inflammation. the only side-effect i noticed were some headaches but they were few and far between (taking it with food seemed to alleviate that). i took it for about half a year and the pain hasn't returned even after stopping it.

Tumeric increases EZ aka 4th phase water around your mitochondria.