Alternative medicine questions | Arthritis Information

Hi there,
There have been quite a few posts recently on alternative ways to deal with PMR. I've had several friends just in the past few days giving me advice, as well! Yesterday a good friend said she saw a show on TV recommending Reishi mushroom capsules for autoimmune disease. Has anyone heard of this? The anti-inflammatory diet has been tossed around as well. I'd like to hear from Mrs. E and Mrs. UK about this one. Is there any benefit to this approach? The diet seems so limiting and I must admit, that food has been a comfort to me during these days of pain. Luckily, I haven't suffered from weight gain.
Another friend has an "incredible", expensive Naturopathic physician that she wants me to see. My insurance won't cover it.

I, in no way, want to minimize other PMR sufferer's good results with these alternative treatments. We all find what works best for us. I'm going on 2 years now with PMR and feeling kind of hopeless. Will this ever go away? Could I be doing something more? I also don't want to spend time and money on something that has not been "proven" to help us. I'm so much better on the prednisolone than without it, so I AM grateful for that. Anyway, I hope no one takes offense with my questions. I appreciate everyone here that shares what has worked for them and what hasn't.

Also, Mrs. E.: What kind of gloves do you wear when you ski to protect your fingers from the Raynaud's? I need to find something...it's getting worse!

Sorry for the long post!

Jannie Mrs. UK
I just want to thank you for your reply. For the past two years, you have been a bit of a hero to me. I so agree that many of these "cures" are also making money with their supplements. The reichi mushoom capsules are among the ones that are doing this. There's another one that I didn't mention. A chiropractor, that I am acquainted with, also does "cranial/sacral treatment" for autoimmune diseases. Whenever I see her (in our tiny town), she encourages me to come in for a treatment. I do hope that I offend no one in this post, but it is difficult enough, without all this.
I have visited your UK forum. I tried to join, but have never heard back. I read your posts there and try to learn from everything I read.
Thanks for understanding.

Two years and still hoping and trying have a positive attitude,
JannieJannie - there are some bits of alternative medicine I use and have benefited from. If it hadn't been for my osteopath and a practitioner who does something called Bowen therapy I'm sure the 5 years pre-diagnosis would have been far worse. But - the ones who are saying "I can cure you - just buy my book... book in for this megabucks treatment...etc... etc" I am seriously cynical about. I even have a problem with the slimming clubs that charge you every week to be weighed, praise you to the heavens for having lost 4lbs but never say anything when that has gone back on the following week. In the UK there are many chiropractors who flog nutritional supplements etc too and I have friends who have spent hundreds of pounds (if not more) because the line is you need regular treatments. At least the osteopath and Bowen girl said if it can't be sorted in 3 or 4 treatments - we're not the people.

Several years ago a man called Edward Ernst was appointed to a Chair of Complementary Medicine at a Uni in the south of England. The appointment was cheered by the alternative medicine crowd but now they have all turned against him. What he is doing is treating it as a science - rigorous standards are being set for comparisons and complementary medicine is failing them. Over and over again - and he is standing up and saying it. He was involved in some forms of comp medicine in Germany before his appointment but has revised his earlier opinions in the face of solid, blinded trials. The use of some of these strange chiropractic techniques is actually one of the things he has spoken up about. Some chiropractic techniques are actually downright risky for some patients.

I use arnica for bruises - as a cream and in the homeopathic form. I used it when the metalwork in my broken leg was removed and had not a single bruise and almost no pain - the physios and nurses were amazed. I will try other things - if I notice an improvement, I will use it again. But I am still very sceptical.

Most of these amazing cures claim to cure dozens of different ailments - that's when I really smell a rat. Especially with the web sites that come up separately for different things. And the massive secrecy bit irritates me too. As MrsUK says - if you've really found a cure for one of these strange diseases wouldn't you want to make it generally available? OK, that's naive. But if it really does appear to work then it is possible - though not easy - to go to medics and get it trialed properly - which makes me think it probably doesn't work.

Some of the books about anti-inflammatory cures claim to cure cancers - when you really get into some of the "trials" they talk about you find it was one or two patients who improved for a short time, but in fact they died a short time later.

In our case these diets are unlikely to harm us - except there are some that include some procedures which I have serious concerns about (coffee enemas springs to mind) because of the physical risks associated with them. There is certainly plenty of evidence from members of the UK forum MrsUK mentioned that including plenty of anti-inflammatory things (turmeric, onions and several other things) in their diet has made a difference although few are totally off steroids.

I know what you mean about offending people - but I suspect that if someone gets really antsy about anything said it is because they have a hidden agenda. They don't actually have to come and read - they are free to ignore anything any of us says. As are you free to ignore what I've said if you think I'm spouting hot air.

You're so right - PMR is difficult enough with the restrictions it places on us and the way it affects our families indirectly without the confusion of being told "no cure at present, management only" by the medics and then all these people saying "pay me money - I'll cure you".

You asked about gloves and skiing - I think it is the exercise that gets the circulation going and helps with the Reynauds. I have 3 pairs of gloves to use depending on the weather conditions, ranging from winter to spring! The Goretex ones are usually the best for cold but today I took them and it was warm so my hands got sweaty and the gloves damp! However - it is possible to buy electrically heated gloves and boots for use in Reynauds! I know that as my husband used to provide specialist diagnostics for it so knows about the other sides too. I also know the drugs are often worse than the Reynauds!

Don't know if any of this helps or if it just even more confusing. I think we have to be accepting and learn to live with the PMR but still try some of the less outrageous things. I couldn't deal with some of the diets - Jill in Australia does amazing things with her diet and seems to do very well with pain that she is able to live with. I, on the other hand, couldn't even start to think about spending the time she does preparing vegetables. The main problem I had pre-steroids was with joint pain in my hands, stabbing pains in several finger joints any time I moved them, never mind used them, and they would get stuck and I'd have to bend them back into position. If all the steroids are doing is dealing with that bursitis/tendonitis that is enough - it was truly awful, affecting everything I did. I also had bursitis in my hip joints which stopped me sleeping and made sitting or walking agonising at time - that has also gone.

I look forward to hearing what you think or anything you decide to try. It would be so good to be able to sit down together round a table and discuss it face to face. All the best

Eileen

Eileen,
Yes, wouldn't it be great to be able to meet face to (chubby) face and have good discussion sometime! As it is, there are no support groups in our remote part of Montana, so I thank you so much for the time you take to read and respond to me. If it weren't for this forum, I would feel so alone and have so many unanswered questions.

I eat a good diet, mostly organic. I'm also into arnica for my prednisone-related bruising. I've been able to keep up with my daily yoga routine. I used to go twice a month for massage therapy, which was wonderful. My massage therapist passed away due to cancer right around the time when I was diagnosed with PMR. She was also a good friend and I miss her still. Thinking of her helps me to keep PMR in perspective. It could be so much worse.

I know my friends mean well when they make suggestions. I'm sure they are frustrated with how long this has been going on. I can't take the long hikes into the mountains with them or go on cross country ski trips with them. Water-skiing is definitely out!

I ordered 2 pairs of gloves yesterday. One has a pair of gloves inside mittens that was recommended on a Raynaud's site. Can't wait to get them!

Have a great weekend. Take a couple runs for me! My husband says we should go to Italy...It's been pretty gloomy in Montana lately. I'm looking forward to being in Arizona next month!
Janniemontanawomen/ Jannie

I just thought you might like to read this experience. Quite a few Silver Foxes have taken this up and as you can see our UK organisation for over 60's promoted this exercise.

You never know, it might help you to get back to walking/trekking with your friends - starting small and getting longer.

My Nordic Walking Experience

I embarked on the first session of my Nordic Walking programme, free 8 week programme run by Age Concern, and no I didn't poke the pole anywhere other than in the ground, before any of you ask!

Felt somewhat apprehensive as the day of my first lesson drew near (especially following my recent unsuccessful trip to the hydrotherapy pool!) but the sun was shining, the expert instructors were lovely and, miracle of miracles, I managed to put the left leg and the right pole forward at the same time!

The class started with warm-up exercises and ended with cool-down exercises. Stomach toning and back strengthening exercises were included and we were told about one lady who had increased her bone density following the take-up of Nordic Walking. To sum up, a fantastic experience, can't wait for next week's class by which time I hope to have received my new Gor-tex shoes, the only downside being wet feet as we were walking on the early morning grass.

For anyone who is at a comfortable enough stage of PMR to be able to walk for at least half an hour, I thoroughly recommend this sport. Your legs are helped by the support of the poles and the story of the increase in bone density speaks for itself.

The free 8-week programmes are run by Age UK (was Age Concern and Help the Aged) through a fitness scheme called 'Fit as a Fiddle' (information can be found on http://www.ageuk.org.uk/health-wellbeing/fit-as-a-fiddle/ and the instructors on my course are very qualified people who remind you to stop if anything hurts.

Maybe there is something in your town or maybe you could start one up.

Jannie - I spend most of the year in northern Italy not in the UK so I, too, have no access to a support group. What I do have is a GP here who immediately asked "Has anyone suggested PMR?" when I went to her to ask if she would monitor me and described the symptoms! Given it is supposed to be less common here I was impressed!

We do have Nordic walking courses here but I haven't investigated yet - but today the fog of the last few days seems to be disappearing. It was like descending intoa fjord yesterday coming down off the mountain, thick fog lying at 1000m! We'll just have to keep our virtual meeting going though for now!

Eileen