This is my first time posting and wanted to introduce myself. My name is Tess and I’ve been living with RA and supposedly fibro (I don’t necessarily agree with that one) for 12 years officially. Do any of you use natural remedies for pain and inflammation? I have been researching and trying different things but yet to find something that really works. I’m unable to take nsaids d/t stomach ulcers from them and basically love on Tylenol which doesn’t help during a flare as you all know. My only hope for pain control for now is disease control which is touch and go at best. Thanks in advance for your input!😍
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Hi Tess & welcome.I guess your are in the US as we call Tylenol Paracetamol here in the Uk.?
Are you taking any meds for your RA....like Dmards...Disease Modyfying Anti Rheumatic Drugs? Or are they what you feel are hit & miss...which can be so true?
I have a friend in the US,& we were both diagnosed with RA about 20 years ago and our treatments seem to have run along pretty much similar lines. She is now very well settled on Methotrexate.....says she has minimal pain, for which she uses Tylenol.
I was on Mtx successfully for 7 years....now on RTX infusions & very rarely need pain relief.
My friend has tried & abandoned many "natural" remedies.....I have not,& we seem to have landed up about even.
However I am sure you will receive lots of suggestions from members here who have had success with natural remedies-so let's hope some of them work for you.
Thank you so much for replying!😁 I am in the states. I have been on plaquinil, arava and mtx, methotrexate being the effective treatment for me. I recently haven’t been in anything d/t rheumatologist emergently retiring for her own health issues and it is a nightmare to get a new doc!😩 So, I have been in one flare after another never knowing which major joint will join my hands and feet to take me down from one day to the next. Spend an entire day in the ER last week d/t being unable to put weight on my foot which was a new one. I have dabbled with ginger and tumuric but never found any info specifically indicating the amounts to be effective in reducing inflammation.
I don't want throw cold water on the stress you are already under, but if I were you I would spend 100% of my time finding a Rheumie. To get back on Mtx.My friend in PA also finds locating a good Rheumy hard...she presently drives 50+ miles to her doctor.
You need to protect your joints & get pain relief, & then you can try the many "natural" remedies that are suggested.
Do insurance companies have a list of local rheumatologists? Maybe you could go down that route or could you ask your local ER?.
I'm sure you have thought of these things but not being too familiar with the US medical system these days I don't know what else to suggest. Which State are you in ....we do have some US citizens ion here...maybe they could help you?
Thank you agedcrone, I am in North Carolina. There are a few rheumy docs here just difficult to get started with them. You have to jump through a lot of hoops to get that first appointment. I’ve had two rheumatologists along this journey so far, both wonderful bright women and I just hope my luck holds out for the next. You are so right about making finding a doc priority, that is no.1 on my list. It’s really good to get advice from someone who knows what it’s really like to live with this horrible disease! Thanks again!
Fraid I don't know anyone I N Carolina.....but will keep my fingers crossed you hit on one soon.
As you are diagnosed & have been under treatment, I'd go on line & just hit every Rheumy listed.....at least you get to choose your doctor. Over here unless you pay privately you pretty much see who you see.
I have been using it for three years. Don't think I can do without it. It's worth a try. It has shown to work wonders on some RA pas. For me it keeps pain down as well as stops flares ( I have only had one and that was when I was off LDN) It gives me good quality sleep as well. There are some fb pages where experiences with LDN are discussed. Perhaps an idea to look into these. Some are taking LDN with RA meds and some combining diet. Good luck.Simba
If you are looking for a more holistic view and help with your RA I am afraid you will have a hard time finding a rheumy who will help you with this.If you want to look ouside of the box as well you could look for a functional medical doctor. I have understood you have good ones in US. Simba
Very interesting, never heard of that. Thanks a lot for the info. I live also in the US, New York City and don't take any medicine for the side effects. My condition is getting worse.
Pain all day long. Stop eating dairy and meat +, did not help.
Try the aip diet, which calls for avoiding dairy, grains (particularly gluten), legumes, coffee and sugar. These foods are found to be inflammatory and thus are problematic, for those with autoimmune disorders. There are also some supplements which are beneficial, that should be incorporated into the diet.
There are many articles on the internet, which contain foods that should be avoided. Just google aip protocol or diet. I do sometimes eat oatmeal and eggs, so I don’t follow it strictly. I try to be strict about avoiding gluten and dairy.
Thanks! Unfortunately it’s quite cold and snowy where I am, which is in Indiana. I wish I was in a hot and dry place. I truly dislike the damp, cold weather especially with the ra. Sounds like a good idea for retirement spot someday!
Hi Anne, wish I can send you some sunshine from here but not today, maybe tomorrow. If you happen to be in NY, come to visit, would love to meet you. We will probably have a little chat about.... you know what of course!!
I am from Casablanca (Morocco) living in the US for many years. American and Canadian Citizen by now. My family lives in Canada and I live in NY because Canada is too cold for me. French-educated. Worked in French Corporate Banking in NYC. Now retired. (I wish I could say enjoying retirement, some other time hopefully!!) Enjoy your weekend Ann!!
There are a lot of doctors that perscribe LDN in the US but they are not rheumies, usually. The med is not new and has been used in large doses for decades and is actually an over the counter med The small dose that LDN is needs to be specially compauded by the pharmacy and this is why you need a perscription. Compared with RA meds and their side effects this is really a very safe alternative to try. Simba
Thank you so much Simba for taking the time to reply. You made a good point mentioning the side effects of RA meds comparing to LDN. For my next appointment with a rheumy, I will mention LDN and see his reaction. Will keep you informed if you don't mind and thanks again. It's always good to start the day with good info. Enjoy your day now.
Do keep me informed😊I'm also a member of a couple of fb groups where people with RA discuss their experiences and many are from US. There is also a fact sheet for doctors that you can print out from LDN Trust pages to educate your doctor. Specialists are unfortunately bound by keeping to the gold standard meds and are afraid to prescribe meds that are not listed for RA. Your GP on the other hand has more freedom. Many Rheumies are ok with LDN as long as they do not perscribe it. Good luck.Simba
Many thanks. will try to speak to my primary doctor about this "magic LDN" I am very curious to see how much he knows. Will keep you posted Simba. Regards from the US!! Hannah44
Hiya Tess, welcome. I'm sorry you find yourself in the position of being without your meds. I had a similar hiatus when I returned to the UK from living abroad but fortunately only for 3 months. MTX has also been the best med for me & I would be in a real pickle without it so can empathise for your situation. Like you I've also tried Plaquenil (hydroxychloroquine) & Arava (leflunomide) & also sulfasalazine, MTX being the longest standing at 9 years.
I'd agree with AC & it's a priority to concentrate on tracking down another Rheumy to restart your MTX, it makes complete sense to continue on what obviously works for you rather than dabbling with alternatives that may not be of any help whatsoever.
Are primary doctors able to prescribe oral steroids there? If so that would be my immediate call, ask if you could have a short course, repeated if necessary until you find a Rheumy. They will tackle inflammation & in turn the pain you're having. Or, a general steroid injection if there's a doctor in the Practice qualified to give them. Depending on dose & how you respond they can last up to 3 months.
Is your primary doctor able to help in finding you a new Rheumy at all? If they're difficult to sign up with maybe he can pull a few strings & refer you as an urgent case to one given you're off all your meds. You could always ask to be called if they have a cancellation, that is if you're able to attend at short notice.
I do hope you manage to get sorted & soon. Having been in your position having had 3 very good Rheumies I know & appreciate the loss. I can also empathise with how things can progress & quickly when we're off our meds. 😕
Thanks for your post! I have found 2 rheumys and have an appt on the 29th with one but he isn’t a very good one from what I hear so, I am also working on jumping through all the hoops to get into a practice of 3 rheumatologists🎉🎉. I ha e recently been to our emergency room and was able to get a decadron injection as well as a toradol injection was was a life saver. I was on crutches for a few days but have recovered relatively well. I can get prednisone from my primary but try my best not to take it to avoid all the side effects it brings along🤮 as I said to another member, it is so great to talk and get feedback from others who know what it is really like😍👏🏻
Hi Tess - if you’re near Winston, Wake Forest Baptist Health has some great rheumatologists... on your other question, I started eating TONS of greens, veggies and fruit first thing in the morning and before bed. I also cut out wheat, dairy and nightshades (tomatoes, potatoes and peppers cause almost instant inflammation for me - and I love them all - but not worth it to ache). It’s basically AIP plan with 7 servings of veggies & 2 servings fruit in the day with protein.
I did this before starting MTX and was amazed at how much the inflammation went down - and much more energy. With the MTX, we’re hoping to halt joint erosion that started (and may supplement with Planquinal). My kids have some autoimmune issues too, so we view all the veggies as fueling our health rather than depriving ourselves. I found a meal plan that helps with planning. That’s been really helpful to me - so hope you find relief!
Mamacita (do u know the song??) I have inflammation in all my body, that's why I have so much pain, so if I find a way to stop this inflamm..., I will have less pain, which is the real goal. And also what do u take for protein ? I don't eat nighshades and no dairy or meat since RA. My other question if you don't mind is : do you eat bread, is it ok for the inflam.. and for RA??
Sorry - just seeing this! I’m eating fish and meat - pork and chicken mostly, but some beef occasionally- I don’t feel as good after beef. I also do black eyed peas. There’s a lot of talk about lectins in beans - so I’ve avoided those until my swelling is gone (I think my knuckles look so sexy without the swelling! Literally haven’t seen the joints in my thumbs in years!)
I also do egg whites in the morning with spinach/asparagus/salmon/zucchini/chicken sausage. On grains, I’ve tried sprouted grain toast with avocado and didn’t have any ill effects. I’ve heard sprouted grains are easier to digest but overall, not to do grains more than twice a week. I’m amazed at how little fresh veggies I was eating compared to now - and while I’d much rather eat Mexican food and burgers for the taste, my body literally can’t do it any more. I think I was fueling my inflammation with too much sugar and dairy. And now that I read labels, amazed at how many products like bread have high fructose corn syrup. I have my next bloodwork for the dr in a few weeks & am hopeful CRP markers will be way down (my weight already is
I hope you get sorted soon Tess. I feel for you. I'm pleased the steroid injections helped some. We ordinarily aren't given Decadron (dexamethazone) or Toradol (ketorolac) here. We usually have Depomedrone (methylprednisolone) or Kenalog (triamcinolone), interesting to hear of different steroids.
A short course of steroids shouldn't be too problematic unless you respond badly to them but I do agree, longer term they can be so & so's. I've been on low dose prednisolone a good while now & really am looking forward to tapering off them completely, I think! Been there before & it wasn't pretty!
I hope you enjoy being here. It is great that there are others who know just what it's like for us able to help & share experiences. I've learnt lots in the years I've been here, not knowing anyone else with active RD it's a really helpful resource & I've made some good friends too! 😊
I unfortunately am about 2 hours from Winston Salem but, I guess if the ones I found fall through I will definitely check them out. I LOVE tomatoes! I would be so lost without them to cook with but, as you said I would rather not have the pain that comes along with the inflammation. I really feel like our food plays a big role in our health. It is such a huge subject and I am just on the tip of the iceberg for sure. Thanks so much for the info!🙏👏🏻😍
Hi Tess, yes I do reiki. I turned to it many years ago and I find it helps with the pain. It is so relaxing and that a!one helps. I learned to do it myself as it was always on hand when I needed it, unlike going for treatments which can be like going to the drs, and certainly can't be had in the middle of the night. Try a treatment. I would offer to give you one but don't know where you live. I love Milnrow near rochdale. If I'm not near to you try to find someone with a good reputation and go to them. Hope this helps.
Are you in Rochdale, NC Rahelp? If so, I am 2 hrs away in Moore county. I have thought maybe yoga would be beneficial. I will research reiki. Thanks for the suggestion. Everyone has been so great with advice here. I’m so pleased I found this group!😍😍🙏😘
I am Rochdale England. I havent heard of Moore county. Unless its a pet name for yorkshire i think you may be in the U S of A. If you are in the UK once you have researched it come back and we will try and sort out a visit so i can give you a treatment. F o c of course.
Oh how I wish I was in England! No, I am in America in North Carolina. If I could I would definitely take you up on your offer! Thanks for offering anyway.🤗
Hi Tess! Welcome to the group! I would be interested to hear how you get on! I'm always thinking about natural remedies to treat RA, trying to limit harmful drugs as much as possible.
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