As many of you know, I have been fighting with chronic, body-wide, intense pain for the last year. It’s a bunch of overlapping autoimmune conditions but I also have central pain sensitization on top of it. My body basically amplifies “real” pain and creates pain sensations where no stimulus exists. Something as light as a touch or the weight of a blanket can sometimes cause really bad pain. Other days, very few things bother me. It is completely random.
This morning I was basically told that I’m out of options to treat it with medications. We’re going to adjust some of my doses of what I’m currently on but I’m not optimistic. The traditional medicines they use for people with this condition haven’t worked. Regular pain meds no longer work. Morphine sent me into excruciating pain so the doctors don’t really want to try any other related meds unless I’m being monitored in the hospital.
I’m turning to acupuncture or some other form of “alternative” pain relief methods because, frankly, it can’t really hurt at this point.
Yes, I will ABSOLUTELY clear anything I do with my PCP and probably at least a few of my specialists. I have to anyway in order to appeal to my insurance (which as a policy does not cover these types of treatments but I think/hope we could make a case to get it covered).
In the mean time, I’m wondering if anyone has tried acupuncture or anything else for pain and whether or not it helped. What tips might you have for me?
I have a friend from high school who has had chronic pain for 25+ years (she has some congenital health issues that were the breeding ground for it) and has explored all kinds of non-traditional treatments for pain. She once spent three weeks with us, getting treatment from someone in our area (it’s not available where she lives), but it really gave her no relief. She does believe it works for some people as she had many conversations with patients before she committed to coming here, but not everyone.
She and I had a conversation recently about how ketamine infusion clinics are popping up around the country and ketamine is being used more frequently clinically in several applications. The brother of Deepak Chopra, M.D. (big into alternative medicine), Pradeep Chopra, runs one of these clinics. His credentials are quite impressive, including Harvard Medical School, and a faculty position at Brown Medical School. He and his partner have lots of articles in peer-reviewed journals. He is trained as an anesthesiologist. http://www.painri.com
They’re by far not the only people who offer this kind of treatment; I’m only providing their website as an example of what’s out there regarding ketamine.
You will hear people rail about ketamine, though. Its reputation as the date-rape drug have soiled its reputation as an under-utilized resource for appropriate clinical use. I think it’s a drug we’re going to see used a lot more in the future. And if you choose to research ketamine clinics, you definitely want to make sure the ones you’re looking at are on the up-and-up. Some of them are popping up, run by physicians that have no background in pain management (anesthesiology) or psychiatry. They typically have the most experience in administering ketamine.
I have RA but have not tried acupuncture for that. I did try it for menopausal hot flashes (I know you are decades from those) and was amazed by how quickly and well it worked. 6 sessions and no more flashes. My mom suffered for years and had to take estrogen. Years ago, my MIL, a nurse, tried acupuncture for back pain and it helped. My boss also does acupuncture for back pain and she says it helps somewhat; she had been planning surgery but has now deferred it.
Good luck to you. I hope that you find relief from your pain.
Not for pain, but my PCP is the one who suggested recently that I try acupuncture for my recurring sinus problems. It’s even covered by my insurance. I haven’t done so yet, but my niece has been dealing with sinus issues for years and it helped her. I hope you find some relief…have you looked into self-hypnosis? I used it when I had my last child and it absolutely lessened the pain for me. I had learned the technique in a massage class and thought I’d give it a try and it worked. Good luck to you.
Oh romani, this must be so frustrating for you…poor kid. I really hope you can find relief. Chronic pain is a horrible thing to experience.
My niece has a graduate degree in Oriental medicine and has worked with my husband (acupuncture and cupping) for back pain and with her mother for her RA. Both say it brings them some relief. Give it a try.
I had it horrible constant pain in my shoulders for about a year and a half. Nothing I tried (including pain meds) gave me any relief. I was very lucky that I figured out on my own that this stemmed from the statin drugs I was taking. Within 3 weeks of going off, my pain was gone. Morphine, hydrocodone, Oxy, etc all sent me into tachycardia. As I think I mentioned to you before, I am not allergic to this class of drugs, but rather genetic testing has shown that my body is very slow to metabolize them so I need about 1/2 a dose to avoid problems.
I hope 2017 is better year for the romani family. Hugs
@teriwtt thank you for those! I’ve bookmarked them.
@techmom99 I’m glad you managed to find some relief! Maybe I’ll have to bring that up to my mom as she’s still having hot flashes even though she’s supposedly post-menopause. I’ll let you know if I end up finding anything that helps my RA symptoms.
@sseamom no! I’ve never even heard of self-hypnosis. Would you be able to share any helpful sites or books either on here or in PM?
@kajon I actually bought a cupping kit a few months ago and completely forgot about it until just now. It was bought during a hectic time and I think it got stuck somewhere out of sight and out of mind. I will dig it out tomorrow!
did you get chest pains, too or just the rapid heart rate? My resting heart rate is already tachy (~100-110) but the morphine sent my chest pains through the roof. I’ve had hydrocodone before (and I think Oxy) but not before I got sick. Other than some nausea, no reaction. I’m not in a hurry to try any other narcotics anytime soon though…
Thank you for the hugs :).
@basil1 thanks! I’d love a massage but touching my back muscles, even lightly, hurts. I miss massages. Maybe there’s someone around here that specializes in people with super sensitive bodies… It’s good to know though that you find acupuncture more relaxing.
I have a very good friend with TMJ. I’ll pass on to her that acupuncture has helped at least one person with it
acupuncture can be very helpful for muscular pain. I have had a number of treatments over the years.
Bursitis and tennis elbow were helped. H tried for his IBS type symptoms with no real results.
Self hypnosis is a real and good tool.
Medical marijuana for sleep could be good.
I would be looking into hypnosis first. Do some research on that. There are also some simple relaxation and meditation techniques that can help you reduce stress which may help ease some pain. These techniques are so very useful in everyday life everyone should master them anyway.
My d tried acupuncture for her PCOS and felt it helped some.
I once dated someone who had (may still have…?) fibromyalgia. She kept trying stronger and stronger meds until finally it had to be at least Percocet for her pain (she preferred a Fentanyl patch or Dilauded, but those were harder to get – hospitals knew her well and they don’t just hand them out. It seemed like some nurses on her ER trips thought she was faking it. But then how do you prove you have fibro?). Dilauded would just about knock her out.
It was painful for her and frustrating for those close to her – wanting to help and being unable. You can’t head down to Walgreen’s and pick up any medication that will make a dent. So she would make the rounds with the hospitals, trying to get the stronger stuff.
I’m so sorry! I did acupuncture for 5 years…it was a godsend. Osteoarthritis in my lower back, degenerate disc disease in my neck and one horrendous muscle knot.
I first did 2 months of physical therapy, was on Celebrex, had a portable traction machine paid by insurance. Nothing really alleviated the pain or discomfort more than a few days and I knew taking Celebrex long term was not good. After a year, I finally went to an acupuncturist. I had money left I my FSA, so thought why not. I was very skeptical, as I really didn’t believe in all that hocus pocus.
Well, let me tell you…after 3 treatments I felt much better, after 7 the pain was completely gone. She told me upfront it was temporary, she couldn’t cure me, but could make it manageable. I went about every 2 or 3 months after that for a session or two, to get me through. Like another poster said, it’s so relaxing. I would fall asleep during sessions. My elderly aunt went to her and she unlocked one of her frozen shoulders! The other one didn’t do as well.
There are things it works on and things it doesn’t, and they should be upfront with you about that.
I also have a friend who went to a hypnotist for smoking years ago and stopped smoking. So, I think that works too.
I don’t know whether you’d be able to tolerate it, but if you try it, be sure to get their roller, which is soft, and nothing like standard foam rollers. You might be able to locate a teacher in your area, who could help you get started.
I should add that MELT is very gentle, and should not cause pain. You would not be rolling around, like people do with the foam rollers. It’s not one of those “hurts so good” approaches.
@romanigypsyeyes - don’t know what specifically is causing your pain (and if you told me I probably wouldn’t understand) but look into Myofascial release therapy. You mentioned cupping made me think of this. It is NOT massage therapy, it’s releasing muscular tightness all over your body - even places you didn’t realize were tight. Also supposed to help lymphatic system (don’t know how much data there is for that though). They don’t massage to do it, simply push (mostly very lightly) on trigger points in your body. Funny how releasing a muscle in my shoulder helped my hip - that kind of thing. I’m a mess all over my body from compensating for physical issues (appendage and organ damage) and this has helped. Do not get someone who does “Rolfing” - run fast and far, it’s not what you want and tremendously painful to boot. Someone who has studied under John Barnes would be good. My PT recommended this and sees a huge difference. Here you’re looking at $80-90/session and prob not covered by insurance. May be worth at least a consult for you. I feel for you - hope you find something that works!!!
2 years ago I discovered Yin Yoga (it is NOT gymnastics!) - and found an instructor who teaches it as yoga therapy for many maladies - ptsd, physical/emotional trauma, depression, rheumatoid arthritis and more. She has entire client base of children and adults from all walks of life. My impetus was stress and the onset of RA as well as recovery from 2 bouts of frozen shoulder.
Yin Yoga is completely different from the “flow” style - which is basically continual movements, flowing from one to the next, through a series of movements - yin yoga is holding poses (most are on the floor) for an elongated period of time, which requires more deep breathing (relaxation - meditation) and concentration (relaxation - meditation) - in addition to shape shifting (yeah! a positive) yin yoga has provided a meditative exercise program which reduces my stress level, and unfurls my kinks within minutes of starting. Yin yoga, to quote my teacher, is not “contortion or gymnastics” - it’s slow and intentional, it lowers blood pressure, it is calming, provides restorative stretching and increased flexibility and reduces stress by providing a different focal point, very much the way bio-feedback does.
This video is not my teacher but this young woman does a beautiful job of teaching. If you watch, you’ll see she doesn’t even begin moving until nearly 9 minutes in (which by the way is a form of “self hypnosis” as mentioned above), and her first “pose” is almost 5 minutes. In yin yoga you start by getting in touch with your body and your breath. https://www.youtube.com/watch?v=MOFnH1bVWmQ
@JustGraduate, I’ve also benefited from myofascial release (trigger point) therapy. When I am in Michigan I go to an incredible massage therapist. A few years ago, I had a problem that I thought was in my hip joint. I’d lost range of motion and when I sat cross-legged, one knee was quite high because my hip wouldn’t open. I did not think the problem was muscular, but for some reason I mentioned it. She asked about it and watched me walk. During the massage, the therapist released 2 trigger points, not even in the area where I thought the problem was. When she was finished, she told me to try sitting cross-legged. My knee went right down. The problem was fixed as if by magic. @romanigypsyeyes, for some reason I think you might be in Michigan? If you are, PM me and I’ll send you the name of the massage therapist. If you do PM me and I don’t respond, it’s because I didn’t see the PM. I’ve been having problems with PM notifications, but no message when I go into my inbox.
I love Yin yoga, but if the OP has pain when touched and doesn’t think massage would help, I think holding the Yin poses, where one is mostly on the floor, would be extremely painful.
In my non-expert opinion an alternative therapy like myofacial release or Reiki where there is little to no contact might provide the OP with more relief.
I take 2000 mg daily of NOW Curcumin Phytosome Bio-Enhanced Tumeric Extract to reduce inflammation and chronic pain, no side effects. A fair amount of clinical research supports this.
I’ve also gotten a lot of acupuncture. It makes a huge difference who the acupuncturist is. The ones I’ve found best have been MDs in China and have spent a lot of time in hospitals in China treating a huge variety of conditions. I’ve tried others (my naturopath is also an acupuncturist), but really you want to keep trying until you find one that makes you feel better. It is very likely that it will help with chronic pain. The times acupuncture has worked for me, I felt better immediately as I got off the table. Eventually, the symptoms return, but after a few treatments, you can get in a good place.
It took a while to find the right balance of supplements, herbs and acupuncture to get me feeling good, but I’m there, and I suspect if you went at it, you will find a balance too.
I’ve had myofacial pain in my neck and shoulders for years. I tried pain pills, nerve block injections etc, acupuncture, massages… nothing really gave me lasting relief.
You can try acupuncture and if a few treatments don’t offer relief, go to another acupuncturist. Lots of acupuncturists with varied skill levels out there. I went to someone from China who taught at an Eastern Medicine college and even he could not provide me with much relief.
