Acupuncture!!! Just wanted to share my experience. Sort of believed in acupuncture because I had done it once before after finding multiple nodules in my thyroid. I felt the pressure on my neck go down, but couldn't afford to keep doing it. I went the other day and my body pain has been lifted for 2 days so far. I had upper back pain that would nt go away, shoulder pain, intestinal problems, gall bladder discomfort (sono showed no stones) She poked around everywhere that was bothering me. She addressed a few as she could not address everything at once. Put a needle in right near my gall bladder. No matter what I eat, I couldn't get rid of this discomfort. Discomfort is gone 2 days now. She explained that we still need to see drs for help, but eastern medicine can help with pain, movement of the body within (helped my stomach and intestines) and generally help the body to heal itself. I believe this. She said the body has an incredible ability to heal itself. Anyone interested in trying something different than medicine or possible both together..check with dr and acupuncturist... Fantastic experience. Took my herniated disc pain running down my right keg away too. Feel better everyone! Merry Christmas to all and a hopeful year ahead for better health!
Acupuncture!!!: Acupuncture!!! Just wanted to share... - LUPUS UK
Acupuncture!!!
Hi,
Pleased you have had some help and relief from your pain and discomfort. I've had some acupuncture but didn't have any dramatic results. It was on my ankle after I had broken it. I did however see a dramatic difference on my elderly dog. Sadly she's gone now. She was high stepping as the vet said due to pain in her back after a few sessions she walked much more comfortably. So for the right ailment at the right time I believe it's a valuable treatment. As you say it all should be checked out before you start by a trained medical professional, like your consultant or GP.
Happy Christmas to you and yours and good health and happiness in the new year. Xx
Friendly...thanks and Merry Christmas to you too! Hope we all have better health next year!
Hi,
It's worth asking your Acupuncturist if he/she would be prepared to teach you to self acupuncture. My local professional Acupuncturist does this for clients with long terms problems. He supplies the needles (ooh that doesn't sound right somehow !!) to enable also. He does this as he appreciates that not everyone can afford on going treatment. What a star!
X
Wow Jelly...really...that's truly amazing. I wouldn't think they would do that. I could not reach some of the places she put it. Plus I got radiating nerve pain when she put it in some places and either pulled it out a little or used a smaller needle. I will do as I can afford. My headaches are back already. I was hoping it would last a week till my next visit. My gallbladder discomfort is still gone which is great. I find that annoying. Merry Christmas to you!
I'm so glad you've been helped, natura!!! Way before my lupus diagnosis was recovered 4 years ago, I gave acupuncture a good go...here is my take:
In the '80s- '90s I conscientiously tried traditional Chinese acupuncture several times for chronic spine pain and migraine. Each time, I i got no benefit other than to feel as if I'd at least made a solid effort to suspend any skepticism and give the practitioner a good go at proving they really could help me. I only went to practitioners recommended by friends who had been treated successfully. Each practitioner got 3 months to prove they could help me. None of them helped me at all. In fact, the needle-work was excruciatingly painful (almost as painful as the chronic pain it was meant to resolve). Nearing the year 2000, I'd ended up feeling totally inadequate...I figured each failure was my fault. It never occurred to me that possibly there was something major & systemic underlying my versions of chronic pain...so major that even successful traditional acupuncturists couldn't help me. The whole thing was vvv depressing...especially because meanwhile I was conscientiously trying all sorts of other quality complimentary therapies techniques....some of which were v helpful (eg the alexander technique & mindfulness type meditation) as part of the lifestyle management package that made my life bearable and helped me at least keep my job despite living with disabling persistent severe long term pain which didn't respond to prescription NSAIDS & analgesics prescribed by my gp, neurologist & co
But, then my consultant in pain medicine began to perform the bilateral spinal facet joint denervations that have made such a positive difference to my chronic spine pain. The physio that followed each set of denervations to my cervical, lumbar & sacral spine was a special type of acupuncture....devised, as I understand it, in Canada several decades ago, and practiced by medically trained specially licensed health practitioners (in the UK, it's mainly physiotherapists, GPs and consultants in Pain Medicine who do the courses). This is called: IntraMuscular Stimulation (IMS). It is actually very mainstream, but because the training is rigorous and a post graduate "add on" to other qualifications, not that many commit to qualifying. However, the needles are so long and go in so deep that only these sort of professionals qualify to even take the IMS trying courses
If you're interested, google intramuscular stimulation. this type of acupuncture hasn't helped all my multisystem health issues, but it certainly did helped me to minimise the pain related to my spondylosis.
Is there anything you haven't tried, BC? I'm not as courageous, needles freak me out!
Haha! Yes, needles freak me out too....but by the time nhs neurosurgery referred me to my hero consultant in pain medicine I was nearly 50 and literally desperate....an emotional & physical wreck....due to the strain of coping with both chronic spine pain & what we now know was mainly untreated infant onset systemic lupus. So when I saw those needles I just thought: BRING IT ON!
But I still freak at needles....Every month when the surgery bloods nurse takes my regular myco bloods samples, I do look the other way and whistle a happy tune (in my head)
Hi Barnclown
You are so brave!. Your an inspiration with your strength of character!. Happy ChristmasX
You're so kind, misty...and merry Christmas to you too...I just can't feel as brave as you all are here on forum....I was lucky in that that surgical collars, postural training & lifestyle stuff helped me enough to be able to hold down a job longer than I might've, and I was v lucky that my bosses were v tolerant and regularly allowed me to work from home at my own pace...and I was lucky that my drs didn't urge me to take a route involving full-on morphine. But I was stubbornly determined there had to be something more to understand about the source of my health issues....even though my drs urged me to put all my multisystem symptoms down to the effects of long term chronic spine pain....and, while I pursued that "something", several of those denervation procedures + IMS rehab helped me a lot. And my hope is that my experiences could be of help to others
XO
Barnclown....very interesting....will ask next time I go. She did not do any muscular treatment. Thanks
Hope you'll let us know what she says.
You're right: my drs now "think" the reason IMS helped me so vvv much is that its deep "dry needling" was acting on both my muscles & tendons which had become denatured because of a lifetime without systemic treatment for infant onset lupus...the inflammation caused by the lupus had progressively done this denaturing, causing my tendons & muscles to tighten, which put so much pressure on my joints that the chronic pain cycle could only get worse & worse (no matter how conscientiously I exercised, meditated etc etc). The invasive action of the IMS deep dry needling basically "injured" these denatured soft tissues, which caused them to let go a bit while my body tried to repair the injury. I was just lucky that my version of lupus did finally get recognised 4+ years ago: since then systemic lupus meds have helped a lot to damp down most of my lingering chronic pain (& many of my other multi symptoms)...but, hey: I'm still meditating & gently exercising!
Hey: I think I've just talked myself in to trying traditional acupuncture again...reading what you and others have posted in this thread makes me think that, now I'm getting that systemic treatment, it'd be great if trad acupuncture could actual benefit me as much as it does others
Merry Christmas xo
Barnclown...I noticed my shoulder muscles were tight as rocks and I Couldn't figure out why. Massages would loosen, and they would tighten up immediately again. Acupuncture softened up my shoulder muscles. Of course, they are tightening again. I believe it's the kind of thing that needs to be done weekly at best. Acupuncturist told me I could do this, but she also didn't understand or know what lupus was. She is very young. That sort of concerns me and I hope that I won't have a bad reaction. I pay attention to my body closely. Healthier New Year for you!
Thank you so much for starting this fascinating thread. Yes, over the months since you joined us here, it's been clear you're v self aware. This subject means so much to me...but I've not had much chance to join in discussion about it. I'm benefitting a lot thanks to you & those who have replied to you.
My feeling is that mainly, with our sorts of challenges, we do best to be as aware self aware as poss....during those tough years in the '90s-2000s, when I was at my worst, & getting even worse, in terms of progressive soft tissue debilitation, I was trying trad Chinese acupuncture and also having regular massage as well as doing a daily yoga-pilates regime of gentle stretching + core stability exercises. I experienced very much the same pattern of tightening you describe. My instinct then was to continue all the needling + exercising + massage...I could feel my soft tissue rigidity would be even worse if I didn't conscientiously do all that stuff. The trad Chinese needling was so painful though, that I did give that up....especially once I realised the IMS was less painful and got fab results: when I had my first diagnostic spinal blocks which led into the first session of bilateral spinal facet joint denervations (in 1998), during the post-denervations rehab series of weekly IMS session I'd see clear cumulative results, which meant my exercise & massage also gave clearer benefits.
So, from what you've described, I'd suggest you continue what you're doing: the needling, the massage. I'm no expert, but seems to me you are seeing clear benefits. My impression is that the main thing to be ultra vigilant about with acupuncture is cleanliness (sterile needles etc). You'll know if that's a prob! In my experience, younger, less experienced practitioners can sometimes be excellent because they can tend to be paying extra close attention to what they're doing....and if you do decide to get regular treatments, your characteristic self awareness will mean you spot any cause for concern promptly. Meanwhile, maybe download a lupus UK leaflet about lupus & give it to your acupuncturist at your next session?
Wishing you the vvvv best of luck
Hope you'll let us know how you get on
XO
Thanks Barnclown..good idea giving leaflet to acupuncturist. She was sort of surprised when I told her I couldn't feel my feet and they were cold. Wonder about peripheral neuropathy. I may be looking to deep into all of this which is what I do. I feel like I am on my own because no one knows how you truly feel except yourself. This site has brought invaluable support to this disease. Thanks for your kind words and support.
your vvv welcome.
i'm not totally confident i recall all your diagnoses, but here you've mentioned some typically 'Raynauds' symptoms... am wondering if you &/or your drs have considered you re CREST (wiki has good info on CREST this: clear & concise). apologies if this isn't relevant
wishing you a happy new year. xo
Barnclown...I was positive in ANA but low back in February this yr. Got blood workin August. Didn't show ANA positive. Rheumy says I have nothing. Wanted to prescribe me sleeping pills. Said if I got a good nights sleep I would feel great. Dr is like 75 yrs old. I have always had problems with cold toes and fingers hurting in the cold. But again, not enough for a dr to see and test. No one takes your word anymore for describing symptoms. My gp said recently that the report from kidney dr finding calcification I think they called it in both kidneys, may indicate scarring is a maybe and doesn't mean I have scarred kidneys. Ok..reason I don't wish to go back to drs. Feel crazy...
I worry a lot though..I can deal with pain,but not organs getting damaged. I do have trouble breathing and they have done breathing tests indicating nothing. I just stay on here for support and to learn. Invaluable.
Happy New Year to you too..
Hello Everyone. Like most of the folk who have contributed already I reached that point where I would give anything a go if it may help so I tried acupuncture. I wouldn't go so far as to say that it changed my life but it certainly helps for about a week after a session. I see an acupuncturist who is also trained in a form of Chinese medicine called Tui Na. It's really all about gentle massage, concentrating on the pressure points that are supposed to relate to different body functions. The massage is followed by acupuncture and each session lasts about an hour. As always of course cost is an issue and although it helps I can't really afford to have the number of sessions close enough together to make a significant long-term difference. Still, I'm happy with the few days respite I do get after seeing her. Where I think I'm really lucky though is that my GP gives acupuncture! I think his partners in the practice are a bit sceptical because he is very limited in the number of appointments he can give over to treating people this way. He is also a great believer in meditation, or mindfulness, as a means of managing pain. I am able to get an appointment once a month with him and as he is doing it as an add-on I make an occasional donation to charity as my way of saying thank you. It really is amazing to have such an enlightened and forward thinking doc and I owe him a great deal as he originally suggested that I try "the needles".
Best Wishes to everyone and Happy Christmas.
Stephen.
Thanks for sharing Stephen. I think you r right about the limits. I noticed I am good so far, but it has only been a couple of days. Haven't gone a week yet. Shoulders starting to tighten up. Found a pretty affordable acupuncturist. Probably can't do weekly. But, I will try anything natural to see if it helps. Like I said, the acupuncturist believes the body has an incredible ability to heal itself. I believe in that. I have also been doing deep breathing to see if it helps my headaches. It seems to. Like a kind of mediation. I think I am holding my breathe because I am so stressed. Or my autonomic system isn't working so well anymore. So I have to be mindful of my breathing. Merry Christmas to all!
Hi Natura
Merry Christmas to you . Great to read you've had benefit from acupuncture. Some years ago I had some and found it a great pain reliever , unfortunately it flared the Lupus so I had to give it up. Hope the New year is a healthier one for you.X
Sorry misty...I am a little curious if that will happen. Acupuncturist told me it will help my body to heal itself. Will see. I am going to continue and stop if it hurts me like I do with all my natural treatments. Healthier New Year for you too.
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