Hi everyone! I haven't posted here much as I'm not 'officially' diagnosed with RA - I'm symptomatic and have a family history, but since my RF is negative the doctors won't consider a diagnosis of seronegative RA (I do, however, have another rheumatology referral fixed for November - but I suspect I'll be 'fobbed off' yet again).
Anyway, my question now relates to whether anyone here knows of any possibly useful alternative treatments which I could try - eg. diet, supplements, exercise, physio, acupuncture, etc? The thing I'm struggling most with is the increased swelling and pain in my feet, hands, hips, knees and shoulders. Is there anything which you find useful in alleviating this?
Many thanks. At least this might give me some ideas of things to try ahead of my appointment in November. Getting difficult to cope with all the pain at the moment.
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CarolineC57
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Lots of us also find that changing our eating habits can help. Culprits are often meat, wheat, sugar and dairy, but it varies from person to person. It's something you have to experiment with and find out for yourself what helps. My wrists swell up within 24 hours if I eat bread and jam as I did recently on a French holiday! Eating less processed foods and more organic might also be worth experimenting with.
Fish oils are the one thing with an evidence base and worth trying.
Or perhaps seeing an alternative therapist if you can find one that's been recommended by a friend?
And gentle exercise, swimming and / or yoga are also good for health and feeling more in control of your life.
Thanks, Ali. I have dry eyes too and didn't realise that was a RA symptom. In fact, I'm going to start another thread now about symptoms as I wonder if a lot of my 'unexplained' symptoms could be explained by RA.
I'm afraid sleep is a big problem for me as I have chronic insomnia.
Do you have a juicer? I found (before I knew what was wrong with me) drinking 3 pints of fresh fruit/vegetable juice a day really helped with inflammation and pain. I included lemon juice and ginger to help balance and liven up the juices. Already a vegetarian, I cut out sugar, processed food, most dairy and all gluten.
I did think of juicing - but then I've read stuff about the acidic nature of juice being a problem. It's difficult to know what to believe and what not to believe from things you read, I've found.
I think I'm going to have to seriously look at diet again. I do tend to eat everything that's bad for me - and also go for processed 'easy options' a lot (especially as I have to cook for my husband too as he has a huge appetite and loves all kinds of processed stuff). I also seem to be hooked on dairy at the moment - which will be difficult to break!
I have read so much about suitable diets. If you exclude everything that is supposedly bad for RA, you'd end up with very little variety in your diet! Being gluten-free is the hardest thing for me. I went on an exclusion diet last September and when I reintroduced gluten in November (in the shape of half a large deep pan pizza), that night I honestly thought I was dying. It turned out to be tendonitis in my right shoulder, but it hurt to breathe so I assumed it was my lung - pleurisy at the very least.
Based on the fact that I don't have digestive issues, my GP says I am fine to eat gluten, but within minutes it increases my heart rate and makes me feel anxious. For the last couple of years, I'd just put these things down to stress and peri-menopause.
I offer my husband whatever I'm preparing, and if he doesn't want it, then he gets his own!
I did try going gluten-free for around 6 months a couple of years ago. Just couldn't manage to keep it up as it was so restricting (also difficult to juggle with my husband's food). Gluten-free bread must be the most disgusting foodstuff ever invested! I think gluten would probably be the last thing I'd try to exclude too for that very reason!
I'd give the celery and cucumber cleanse a go (a day was enough for me) and then add in veggie such as green salads and sweet potatoes with quinoa and/or brown rices... I couldn't do it permanently but am now dipping into it further/more often to try and keep things settledish!
For some people just removing one item from their diet is enough. For instance I talked to someone yesterday whose husband simply removed sugar and limited fruit and all signs of arthritis disappeared. Whereas, for myself, I had to remove gluten, diary (except goats and sheeps cheeses etc), nightshades, oils, fats into a largely whole-food plant-based diet.
Bottom line, everyone is different. So what works for you is not right for anyone else. I went through the Paddison Diet because it allowed me to prove to myself exactly what foods were good and bad for me. I now have a list of foods I am safe with - no ifs no buts.
The result is I am heading towards drug-free for the rest of my life.
Do I miss foods I used to eat? In some ways I would love to the body I inhabited just over a year ago. But perhaps this transformation to my new body was going to happen at some time - just a matter of when. Now I am in charge of my body, and with my new diet I am safe, for the rest of my life, and so working hard towards many years of retirement in full health.
So when I travel up and down the supermarket and pass by aisles of chocolates, biscuits, fizzy drinks, alcohol, dairy and the rest I say to myself, "I am healthy, and proud of it." At the checkout I look at my food bill and conclude "that is cheap" and pack my bags stuffed with a large variety of high-quality food!
That's a really inspirational post, Andy - thank you!
I know it will be difficult - for example at the moment dairy is about the only foodstuff that doesn't make me feel ill so I'd have real trouble trying to stop that! - but I'm going to psych myself up to try this.
Lots of things and diets may help but you need to find out what is best for you. AIP diet worked for me. Taking LDN and other supplements to restore deffficiencies caused by chronic inflammation, helps. Have recently started taking Boron that has been a big help for many. Lots of good results with Minocycline treatment that actually has helped thousands. You could just start with gluten-free, suger free, dairy free diet for three weeks and see if there is a decrease of inflammation. Good luck, it's really worth a try, so much better if you can control your RA without toxic drugs.
Thanks, Simba. Yes, it's the toxicity of the drugs that bothers me too. Even if I do get a diagnosis of RA then I know the only thing they'll do with me is put me on those drugs. The stories I've read about side effects, etc, really puts me off. Frankly, I'd be terrified to start taking them! So, even if I do end up with a diagnosis, I'd much rather do this as naturally as possible.
There is such a large number of AI diseases with symptoms that resemble those of RA. There are also different forms of RA of varying severity. There are transient forms that pass in time even without meds. Unfortunately the aggressive treatment protocol is offered to everyone because a differential diagnosis in the beginning is often hard to make. I wanted to see first if alternative treatments would work instead of jumping right into toxic meds. I was lucky for me it has worked. Good luck
The only problem is that celery is one of those things that I just can't stomach nowadays. I've always disliked it - could never munch on a celery stick - but I used to be able to tolerate a small amount as a flavouring in food. Now, if anything contains celery (or garlic, ginger, peppers, etc) I just can't touch it. Makes me feel really sick. So I'm going to have to be careful about what I do try if I decide to try juicing.
Acupuncture helped me when the pain got to much. A hot bath and plenty of cushions in bed to help me get comfortable . I only take paracetamol for pain as my tummy won't cope with anything else. I tried different supplements but other than omega 3 it made no difference other than the cost ! I have sero negative RA with no RF but I also have a family history, mother, grandmother. I was first diagnosed because my fingers looked like sausages and the X-rays showed damage and there were markers of swelling in my blood but not very high. The best suggestion I can give you is to take a friend with in November because I feel that support dealing with the doctors is priceless and you wait so long for an appointment but it's hard to remember everything when you finally get there.
Thanks, Ozzy. I may try acupuncture. I've had it before with mixed results - it seems to depend on who does it! One time, it was really painful - but apart from that I found it very relaxing. My pain levels were nothing like as severe at that point. It might be worth trying again.
And yes, a warm bath is great! I'm afraid I tend to feel worse afterwards though - once I get out of the warm water I seem to really ache. But it's great when I'm actually in the bath.
My situation sounds the same as yours - mother and grandmother both had RA. My RF is always negative, though my inflammation markers are always high. Recently, my finger pain and swelling has increased (along with other pain and swelling) and my fingers are very sausage-like too. I've got an appointment with my GP later this afternoon, so I'm going to see if she can bring my rheumy appointment forward.
I don't think anyone else has mentioned this yet, so I thought it worth posting - a colleague of my husband who is Indian says that in India RA sufferers are told not to eat anything that comes from the nightshade family. This includes potatoes, tomatoes, peppers, chillies etc, because they can accelerate inflammation. I haven't tried cutting them out myself because they are all things I like too much and there is already far too much I can't tolerate in my diet so can't comment if it works, but I do know there are several cookery books available on this theme.
If this appeals, and you have any success, let us know. Xxx
Hi Kariss - yes, I was reading up about anti-inflammatory and inflammatory foods, and this family of foodstuffs is one to avoid apparently. I eat few potatoes anyway, and can't eat peppers and chilies as they make me feel sick, but I have been eating a lot of tomatoes lately as I assumed they would be good for me. I've now cut them out so we'll see what happens. Thanks!
I think you've the right attitude Karris. I thought I may be unusual because I've never reacted negatively to potatoes, tomatoes, peppers (both raw & cooked though I only eat the flesh as through trial & error I found the skin repeats on me), chillies (not overly because I'm not keen on too much as it can mask other flavours). In fact I think there's little in the solanaceous family I don't eat (oh except for physalis, a shame because as my h likes them we grew them in our garden when we lived abroad!). It's one reason why I question some diets as obviously not everyone reacts to a group of foods the same, supported somewhat by info in this link arthritis.org/living-with-a...
I think it's best to discover what you can & can't eat through trial & error as it's a shame if you don't react, you could be missing out on tasty & vitamin-packed foods. Obviously if you react negatively then consider supplements of foods you're not ingesting but I prefer if possible to get what I need through fresh food.
I totally agree, I get fed up of the growing lists of foods that are good or bad for you and my attitude now is to try and stick to as healthy a diet as I can, leaving out or eating in moderation (or only as treat ) those things that I know for sure disagree with me. The medications make it difficult enough as I have nausea and taste related issues from the mtx, but I have learned to like new and different flavours instead, eg cows milk leaves a horrible after taste but I have no problems with soya milk and have completely swapped...easy!
As you say it's most definitely a try it and see for yourself game where foods are concerned. And tomatoes for one are just too yummy to not be on my list!
Yes. I do the same. Actually I eat well, always have even when younger & enjoy the Mediterranean way which includes many of the foods not recommended yet it's considered by the medical a good one for us, work that one out?! I suppose it's like meds, we try them & if they don't control us or we have intolerable side effects they're changed. I think the same can be said for foods which are so often not recommended for us & we could always adapt, we needn't feel bad, life's difficult enough. Treats too, have a smaller piece of the treat we really like & have them less often.... except for choc of course!
While I am waiting for a diagnosis, I have done some research and I have come across the Coimbra Protocol, started by doctor Coimbra in Brasil. The Coimbra Protocol is a therapeutic approach that relies on high doses of vitamin D to halt the misguided attacks of the immune system, and it has enabled thousands of patients around the world to keep their autoimmune diseases in permanent remission. This protocol was first used on MS patients with 95% success rates. It is not a cure but it can stop progression and many patients improve. It has then been used with other autoimmune conditions and it has helped many. Google it and you will find a lot of information. There are now a limited number of doctors in the world that have been trained by Coimbra but the number is growing. I hope I can post the following link, which also provides a link for a list of the doctors as this protocol requires monitoring.
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