Hi,
This is my first post. I am a carer for my husband George who is on PD.
He is suffering from very bad RLS and was wondering if acupuncture would help him. Has anyone tried it?
The Drs are very reluctant to prescribe medicine for the problem because some of the drugs will stay in his body.
Thanks
Elaine
P.S. We are in Australia.
Hi Elaine, and welcome to Home Dialysis Central.
Does your husband have any other signs of underdialysis? RLS can be a sign of this, and people who have it don’t do as well as people who don’t. Checking his PD adequacy is worth doing.
I’m not a doctor, but there is research that sleep disorders, including RLS, can shorten the lifespan in people on dialysis. I looked in the medical literature and only found two studies related to acupuncture or Traditional Chinese Medicine used as a treatment for RLS. One study was of children, so it probably isn’t relevant, and the other one (from China) didn’t have a summary on-line, so it isn’t possible to see if there was any benefit.
In most cases, drugs ARE used to treat this disorder. These include Neurontin, Mirapex, Pergolide, and others. I’m not sure what’s available in Oz, or why your husband’s doctor is reluctant to try drugs, but RLS itself can be harmful–so the question is which is worse, the condition or its treatment.
Incidentally, there is a guide for nephrologists about how drugs are handled in the bodies of people with PD. You can download it or point your doctor to it. The free PDF is at: http://www.nephrologypharmacy.com/downloads/Peritoneal_Dialysis_2006.pdf.
Thank you for your information re RLS - checked with the renal nurse his blood tests are OK so it doesn’t seem to be his dialysis.
He, my husband George, has had 5 sessions of acupuncture and he feels that is helping him.
The Drs are still reluctant to prescribe any medication, mainly because they don’t want him to lose the kidney function that he has. That is what the Nephrologist and the GP both say.
George does take one Temaze 5 mg at night before bed and that is helping him sleep most nights.
I gave the renal nurse a copy of your post and asked her to read about the drugs on the website you gave me. I found it very interesting, but too technical for me, being a non medical person. If I asked the Nephrologist to look at it I don’t really think he would, all he is interested in is the blood readings. My husband sees him every three months, and unfortunately we have more confidence in the renal nurse than him. We live in a rural are so we have no choice, there being only one Nephrologist.
Anyway George is going to keep on with the acupuncture as he is begining to feel some benefit.
Thank you
Elaine39
[QUOTE=Dori Schatell;11520]Hi Elaine, and welcome to Home Dialysis Central.
Does your husband have any other signs of underdialysis? RLS can be a sign of this, and people who have it don’t do as well as people who don’t. Checking his PD adequacy is worth doing.
I’m not a doctor, but there is research that sleep disorders, including RLS, can shorten the lifespan in people on dialysis. I looked in the medical literature and only found two studies related to acupuncture or Traditional Chinese Medicine used as a treatment for RLS. One study was of children, so it probably isn’t relevant, and the other one (from China) didn’t have a summary on-line, so it isn’t possible to see if there was any benefit.
In most cases, drugs ARE used to treat this disorder. These include Neurontin, Mirapex, Pergolide, and others. I’m not sure what’s available in Oz, or why your husband’s doctor is reluctant to try drugs, but RLS itself can be harmful–so the question is which is worse, the condition or its treatment.
Incidentally, there is a guide for nephrologists about how drugs are handled in the bodies of people with PD. You can download it or point your doctor to it. The free PDF is at: http://www.nephrologypharmacy.com/downloads/Peritoneal_Dialysis_2006.pdf.[/QUOTE]
I’ve had diabetes for 38 years and renal disease for over 12; currently on PD.
I had many joint problems, including frozen shoulders due to the renal disease and used to have RLS. After trying drugs and physical therapy, I decided to try accupuncture. I had pain relief after the very first session and all pain permanently gone after about 10 session.
Here’s the key…find a licensed accupuncturist, tell them what kind of pain you have and ask if they have experience in treating that condition. Most specialize and will tell you what they have experience with or not. They may refer you to someone else. Ask how many treatments they typically use for that condition - it varies.
When you go, be prepared to answer questions, be examined and lie on a table for about 20 minutes for each session. This is a perfect time to meditate and practice deep breathing which also helps to reduce stress and pain.
Don’t expect results the first time thru…give it a few sessions. Many insurance plans cover accupuncture for pain management - be sure to call and ask. You may also want to look into therapeutic massage. I find this also works well for pain.
I hope you find this helpful.
[QUOTE=Unregistered;12661]I’ve had diabetes for 38 years and renal disease for over 12; currently on PD.
I had many joint problems, including frozen shoulders due to the renal disease and used to have RLS. After trying drugs and physical therapy, I decided to try accupuncture. I had pain relief after the very first session and all pain permanently gone after about 10 session.
Here’s the key…find a licensed accupuncturist, tell them what kind of pain you have and ask if they have experience in treating that condition. Most specialize and will tell you what they have experience with or not. They may refer you to someone else. Ask how many treatments they typically use for that condition - it varies.
When you go, be prepared to answer questions, be examined and lie on a table for about 20 minutes for each session. This is a perfect time to meditate and practice deep breathing which also helps to reduce stress and pain.
Don’t expect results the first time thru…give it a few sessions. Many insurance plans cover accupuncture for pain management - be sure to call and ask. You may also want to look into therapeutic massage. I find this also works well for pain.
I hope you find this helpful.[/QUOTE]
Thank you for your reply - yes we did find it helpful.
Have had about 8 sessions of acupuncture - weekly - and it is helping a lot.
The acupuncturist says he has worked on George’s liver for about 7 weeks and he has that going well - he is now going to work on his kidneys (even though he doesn’t have much function probably about 15%) He said it will get whatever he has left to work as well as they can.
It was really good to read that you had success as sometimes we wondered if it was 'mind over matter".
Yes, we are covered by private health insurance so it only costs us $10 per visit so George is prepared to go as long as it is necessary. Some nights George still does not sleep as well as other nights but it is not because of RLS it is because he is uncomfortable. He has never been a really good sleeper, but with his legs improved so much he has many more better nights than bad ones.
I am glad to learn acupuncture has helped you so much too.
Thank you
Elaine 39
If you are using Benydril or anything with Diphenhydramine hydrochloride in it belive me it can cause R.L.S if you use it for sleep try nort for a few days. tech opinon
http://www.mayoclinicproceedings.com/pdf%2F7907%2F7907crc.pdf is a good reference for RLS.
Also, http://www.rls.org.au/ has a list of doctors in Australia that patients have recommended for the treatment of RLS.
I have found that you get much better results searching for technical names rather than common names. In other words, rather than searching for restless legs, do a google search for “nocturnal myoclonus secondary to uremia.” You will get medical reference sites rather than a site by some guy named Jim Bob that decided to rant about his leg cramps.
Also, anemia has been linked to RLS.
I can’t tell from your post if it was the RLS or the frozen shoulder that the acupuncture helped. The National Institutes of Health are studying acupuncture for a number of different conditions. Several thousand years of Traditional Chinese Medicine can’t be all wrong! But I’ve had frozen shoulder myself–twice–(not due to kidney disease), and did try acupuncture. It didn’t do a thing, although it was very relaxing.
Anyone who has kidney disease and is thinking about trying alternative therapies may want to check out the Alternative Remedies module of Kidney School, at http://www.kidneyschool.org. We strongly recommend that folks not use Chinese herbs, which have, on occasion, caused kidney failure. Acupuncture or acupressure are in the “can’t hurt, might help” category, but the herbs can really harm you.
Hi Doris,
Yes the acupuncture was for RLS - and has been very successful (so far)
George has had about 14 sessions - has missed the last 3 weeks as he had to go into hospital and have the graft in his arm repaired. (It is just a back-up in case he has problems with his PD)
He is happy to go and have his acupuncture for as long as the therapist wants him to, he is going again on Thursday.
As for frozen shoulder - I had one of those a few years ago - I read in a book it would go away of its own accord in two years - I tried physiotherapy for a while but that did nothing - and would you believe it? Two years it went away - has not returned.
Hope the same happens for you.
Elaine
[QUOTE=Dori Schatell;13191]I can’t tell from your post if it was the RLS or the frozen shoulder that the acupuncture helped. The National Institutes of Health are studying acupuncture for a number of different conditions. Several thousand years of Traditional Chinese Medicine can’t be all wrong! But I’ve had frozen shoulder myself–twice–(not due to kidney disease), and did try acupuncture. It didn’t do a thing, although it was very relaxing.
Anyone who has kidney disease and is thinking about trying alternative therapies may want to check out the Alternative Remedies module of Kidney School, at http://www.kidneyschool.org. We strongly recommend that folks not use Chinese herbs, which have, on occasion, caused kidney failure. Acupuncture or acupressure are in the “can’t hurt, might help” category, but the herbs can really harm you.[/QUOTE]
I too have been having monthly acupuncture treatments since last Dec 06 & have had a huge improvement in kidney function. I firmly believe improvement is from complementary therapy renal Dr chooses to ignore this & says he doesn’t know why my GFR has gone from 11% to almost 20% since last Oct. I noticed within 2 wks of my first acupuncture that my urine output had increased & has continued to increase over the past months. My daily urine output has gone from 765ml last year to over 1.5Lt currently. Dr has said he wants me to stop dialysis next week & see how I go without it. I was admitted to hospital in May 2005 with acute renal failure & pulmonary bleeding due to a “vasculitis” which was eventually diagnosed as Microscopic Polyangiitis (only 8 cases a year in Australia!!). I have also had Type 1 diabetes since 1983 (24 yrs this yr) but my kidney failure wasn’t from diabetes but from MPA. How lucky am I! I have been on dialysis since 2005 having done HD for the first 7 mths & then going on to PD. I was doing 4 daily exchanges in the beginning & earlier this year because my bloods were so good Dr suggested 3 bags per day since Feb. One extraneal overnight & 2 x 1.5% x 2Lt during the day. Two weeks ago Dr ordered Pet & Adequest collection test to recheck the great results from Feb collections. Result even improved from Feb so Dr dropped me to 2 exchanges per day. 1 x Extraneal all day dwell & 1 x 2.5% x 2Lt overnight. I will have bloods done on Mon 16 Jul & expect to be ceasing dialysis on Tues 17 Jul. Still on transplant list & waiting 6-12 mths for combined kidney / pancreas. So happy things are looking up for me! Aussie Angie.
Wow, what great news Aussie Angie. What State do you live in in Australia?
The Dr who is giving George his acupuncture is working on his kidneys too and is trying to improve their function. George feels he has a better urine output but he doesn’t have a 24hr urine collection until September. He has his monthly blood test this next week so that may tell him something.
Thanks for your reply and good luck. Elaine
Pretty much. I had it one shoulder and had PT (which was extremely painful). The goal for the physical therapist was to restore range of motion, mainly by pulling on it. (Did I mention painful?!). MY goal was to be rid of the pain–I truly didn’t give a rip if the range of motion ever fully returned. It took 2 years to go away. Then I had it in the other shoulder, and skipped the PT because I knew that A.) It was awful, and B.) It didn’t help. Guess what–it went away in 2 years. I have perfect range of motion in both shoulders. So, IMHO, PT for frozen shoulder is not worth the pain and cost, though it certainly has benefit for other problems.
Incidentally, my frozen shoulder(s) were a repetitive stress injury due to using a laptop computer without a desk that was the right height. After the second frozen shoulder, mine were both freezing at the same time. My doctor gave me 6 weeks of NSAIDs and said to always keep my arms dependent (down at my sides) at work. With a pull-out rolling desk for the laptop, the problem went away and never came back!
Hi Elaine, How did George go with his blood tests? I have had further tests this week too (last lot were nearly 4 weeks ago), I have been told unoficially that results were even better than 4wks ago. It is the weekend now & I will have to wait until Monday to talk to my renal Doctor. I went into hospital yesterday to have a review of my fistula, apparently narrowing in one spot so the vascular Dr operated & I was kept in overnight. I spoke to my acupuncturist about George’s story with RLS & she said that if George’s acupuncturist has had success with RLS then they will definitely be aware of the kidney points to needle to improve function. I have also told a couple of PD friends of mine in Brisbane about my success with acupuncture & they are keen to try it too! Good luck with George’s continued improvement & great talking to you. Cheers Aussie Angie.