Hey,
Everyone on this forum is really helpful and gives great advice. So I wondered if anyone can help me.
Due to side effects and other problems I'm currently not on any controlling medication for RA. Just painkillers (also allergic to NSAIDs). Has anyone had any success with alternative medicines (herbs etc) or healing methods or anything other than medication from RA Dr?
It looks like I'm going to be off medication for quite a while longer yet.
Thank you in advance for any help!
When I had to come off all meds I existed on Depomedrone injections which were really good for me. For me they lasted up to 3 months & gave me a breathing space. But I don't have any other health problems that might contra indicate that route. (I can't take oral steroids)
I didn't actually try any herbal meds, as I felt unless I trusted whoever sold them to me I'd be playing with fire, I never found that person. I stupidly did try Echinacea which of course was completely the wrong thing to do.
I did sprinkle grated chopped ginger on everything in sight...but don't I think it helped.
I did try Reiki......only because a friend had studied it ......& in fact it did give me some relief when I had a flare. I'm not a great believer in all this listening to recordings of the tide etc,& I don't understand how someone waving their hands over me- not touching me- could have any effect - but I drifted off to sleep & when I woke up the pain was considerably better. Worth a try ?
It's all a case of trial & error to find your way round this horrid RA. I really do hope you get some help very soon.
AC
I've fought RA for almost 40 years and mostly, until fairly recently, without the help of drugs, instead using complementary therapies, yoga, Pilates and diet. Unfortunately I have now needed to go onto Humira, but am still keeping as fit and active as possible.
I started having acupuncture regularly in 1986 when I was pregnant with my first child and have used it ever since. There are 2 different types, 5 element and TCM, traditional Chinese medicine. I find that TCM works much better for me....so worth trying more than one practitioner if the first one doesn't seem to help. And always try to go to someone who has been recommended by someone you trust.
I also see a McTimoney chiropractor regularly. It's a very gentle type of chiropractic.
Do you have high CRP and ESR? They might well respond to diet changes. There was an interesting 'food hospital' programme a few years back on Channel 4 which looked at this and lots of us have found that changing our eating habits can help. Culprits are often meat, wheat, sugar and dairy, but it varies from person to person. Eating less processed foods and more organic is also worth trying.
It's something you have to experiment with and find out for yourself what helps. It's helped me which is why I suggest it. The first thing I dropped was meat...only meant to do it for 2 weeks to see if it made any difference, and never ate it again and that was in 1982! Sugar also is a problem for me...I vary in how strict I am depending on how my joints are. My wrists swell up within 24 hours if I eat bread and jam as I did recently on a French holiday!
Are you able to swim? It's a gentle way to keep joints mobile. Have you tried yoga ever? Good for calming the nerves and helps with relaxation....
And fish oils are the one thing with an evidence base for helping with RA and worth trying. Hope some of this helps!
I tried acupuncture which helped me cope mentally with pain and with side effects of meds
The one thing that you need to be careful about is not being conned! There is so much stuff out there recommended by this person and that and they all sound as if they are the only thing that would work. Always look things up in several different places and, if possible, find at least one, preferably more, reputable scientific article(s) where the treatment has been tested.
Trying an exclusion diet yourself won't break the bank, but it is sensible to only change one thing at a time or you won't know what really made a difference. For example, for me, excluding meat made a difference, but I haven't found cutting out citrus, or lactose, or gluten etc, have made any difference.
If you look at past posts on here, there is a lot of discussion, sometimes a bit heated(!) of various ways we might help ourselves. But don't get carried away by other people's enthusiasm without evaluating it yourself carefully.
For me diet change made a big difference. No night shade vegetables (potatoes except sweet potatoes, all peppers, eggplant, cayanne), no gluten, no dairy, and no red meat. I think the biggest change was from going gluten free and low carb. Good luch and if you Google RA diets or foods to a oid you will find alot of information. Good luck!!
As others have said, try adopting an anti-inflammatory diet with lots of vegetables and fruit. I've been vegetarian for nearly 30 years, but giving up gluten has helped me. I have little dairy, sugar or alcohol, but eat potatoes and citrus fruits most days. I have reintroduced a little fish back into my diet, but can't say whether it makes any difference. I take a lot of supplements, including probiotics, milk thistle, krill oil and turmeric. Still experimenting to see what is useful and what isn't.
The main thing I would recommend to anyone is to look into LDN (low dose naltrexone). It can help with a lot of aspects of RA - pain, fatigue, insomnia, depression and can reduce measurable things like rheumatoid factor. It is a prescription drug, but one which comes without the dangerous side effects of most (if not all) RA drugs.
LDN is a compound and relatively inexpensive. Amazon has a book about plus you can google LDN and get lots of info. I take fish oil, turmeric , CBD oil, Mary Jane pot salve, Capzasin HP, which does burn but really helps my ankle pain. I use Salonpas for my shoulders and elbows. Do not use Capzasin and Salonpas on the same area. I am currently not on any RA drugs.
Clean eating
Rest
Gentle exercise
Are my three staples that I repeatedly return to when things are getting a bit off kilter (I'm on MTX as well)
Ali
When I was first diagnosed my rheumy told me that the most important things you could do to help yourself where 1) stop smoking 2) maintain a healthy weight 3) take daily exercise of some sort and 4) get proper sleep and 5) eat a balanced diet high in fruit & veg and low in sugars and fats.
I had already stopped smoking by then, but did find that the other things helped me, particularly exercise even tho' that sound like the last thing you want to do when in pain it makes a huge difference. As for diet, you have to choose an approach that suits your budget and lifestyle, but you can make a lot of difference without spending more money.
I warmly recommend a book that just came out and that I ordered through amazon. The Autoimmune Fix by Tom O'Bryan. This is how Dr. Pillay, MD, assistant professor, Harvard Medical School sums up the book:" As a doctor and brain scientist, I understand that autoimmune diseases pose one of the greatest threats to our bodies and our minds. Not only do they damage our organs, but they erode self-esteem and can be difficult to identify and treat. In this book Tom O' Bryan offers a sensitive and comprahensive account of autoimmune disease, all at once engageing us in both the reasons they occur and what we can do about them. With the vast amount of information available, it is important to know where to look...With the combination of the highest scientific integrity and the ease of understanding, this book is a gem, worth getting and guarding, for it is bound to be regarded as a classic of its time."
I would be bed-ridden without MTX but I do a number of other things to keep my weekly dose down.
1 - aqua aerobics 3 times a week
2 - swimming - gently - 3 times a week + use the sauna every now and then
3 - turmeric in hot milk just before bed - must be in full fat milk as this releases the active ingredient (curcumin) from the turmeric which is said to have an anti inflammatory response - I don't exceed half a tsp of turmeric - and I don't use a pill version just the real deal
4 - omega 3 - really helps me with fatigue
5 - acupuncture - really works for me - have a session once a month - started with a session once a week for 6 weeks
I am a food scientist so do tonnes of research before I will try anything. Be VERY careful what you take/do. Just because something is a herb etc does not mean it is safe to use. Folk get confused that 'hey this is natural' well just because it is natural does not mean it can also be toxic.
I have also tried yoga and a few folk I know say Tai Chi works for them.
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