Anyone with RA?
 

Hi everyone! Is there anyone here living with Rheumatoid Arthritis? What are some of your daily challenges? Especially when it comes to dieting/exercising.

Let's talk!

~flamanette~ :coffee2:

Here there! I have RA. I am now managing it with diet alone.. I went gluten free back in March and now I am dairy free and sugar free. I'm limiting beef too. I feel great! I do have bad days but not NEAR as bad as before. I'm doing low carb and only getting carbs from veggies and some fruits. I eat lean meats. I'm basically doing the paleo diet. I've been walking. My feet are a mess so I can't walk as much as I want to. If we had an indoor pool in our town open in the evenings I would do that but we don't...it's only open during the day :(

I have had RA for 13 years. With the help of a major medication cocktail, including prednisone, I functioned well until about 6 years ago when I started developing major side effects at the same time the meds therapuetutic effects were diminishing. Since then I've only been able to take the non-steroidal anti-inflammatory med.
This has seriously impaired my ability to funtion, so that exercise is minimal, with maintaining functioning being the primary goal.
All this being said, I've been able to lose over 50 lbs with calorie counting & appetite control via the Insulin Resistance Diet "linking method". As far as diet affecting RA symptoms, I have never found any food or groups of food that have any effect, but going too low or too high on carbs seems to stress my body & cause flares. Just over eating in general can also do this, but going too high on sugar carbs seems to have the worst effect. Through trial & error, I've found that I feel best when I stick with the IRD linking with my daily net carbs falling in the range of 70 to 90 & can tolerate 60 to 120 carbs fairly well if I don't do that too often.
We're all so different in what causes the flares & need to find what works best for us. Sometimes that's difficult to pinpoint. One thing is for certain with me, that daily pain & stiffness has decreased overall with the weight loss & I am very grateful. Good Luck.

Glad I found you!
 

Hello Joyful & Leslie! So glad I found you!

I have only had RA for about 2 years. Doctor says it's not severe (ha, some days...). But man, some days I just find it so hard to function. And some days I think about how unfair it is: I am too young!

I have not tried to control RA with diet (meaning cutting out or adding certain foods). I do know deep in my heart that if I do lose the weight, it WILL ease my symptoms, especially my feet. But I also know of plenty of thin ppl who suffer the effects of this disease! And being overweight has nothing to do whatsoever with the pain in my hands from too much typing, writing, or God forbid, the pain that comes in elbows and hands just from cleaning the bathroom!

I am optimistic about the weight loss helping in some areas, for sure. And maybe some day I will get brave enough to try stuff like gluten free.

And Leslie, I don't mean to be snarky about that. I do believe that every person is different, and every person's RA is different. I am glad you've been able to control yours with dietary changes such as you have :)

Nice to meet you both.

:coffee2:

Leslie & Flamanette,

Glad to meet you guys as well. I'd like to comment on 2 or 3 things. First, in catagorizing RA as mild, moderate or severe I think the docs go basically on how many joints are involved, x-rays, blood tests & physical exam. x-rays are fairly definitive, but the rest can be misleading.

Also, pain is very subjective & nurses are taught that pain is what the patient says it is. For example, Flamanette, you have pain & inflammation in your hands & it sounds like you do alot of typing. How much pain you feel is however much you think it is. When you type it probably makes things worse, & if you type when the joints in you hands & wrists inflammed (red & swollen) you will not only experience increased pain & stiffness, but according to my Rheumatologist, exercizing any inflamed joint can add to the damage being done. What you are experiencing is significant enough to effect how you live, and that's very important when it's happening to you.

As far as diet goes in managing RA, (again according to my Rheumatologist) in only a very small percentage of patients does diet have any influence in the illness.

Lastly, you might want to check into arthritisinsight.com. I haven't been there for a long time, but they use to have a very active RA Bulletin Board.

I've been told that typing helps the hands when you have RA..that keeping them mobile is key. Doctors vary on opinions and I have seen 3 different rheumatologists in the past. Cutting out inflammatory foods is very beneficial. Many people just don't wanna try it. I know I didn't for a long time....but I got tired of taking toxic medicines and decided that I needed to do something. If someone has a leaky gut then foods can help control RA. Everybody is different and elimination diets don't work for everyone but it has helped me tremendously and I now feel human. I take no antiinflammatories and nothing for pain. I previously was on tons of meds and still couldn't function.

Life was too short for me to feel bad all the time. What works for some may not work for others. RA is a miserable disease and we just have to keep fighting :)

Originally Posted by LeslieLou:
I've been told that typing helps the hands when you have RA..that keeping them mobile is key. Doctors vary on opinions and I have seen 3 different rheumatologists in the past. Cutting out inflammatory foods is very beneficial. Many people just don't wanna try it. I know I didn't for a long time....but I got tired of taking toxic medicines and decided that I needed to do something. If someone has a leaky gut then foods can help control RA. Everybody is different and elimination diets don't work for everyone but it has helped me tremendously and I now feel human. I take no antiinflammatories and nothing for pain. I previously was on tons of meds and still couldn't function.

Life was too short for me to feel bad all the time. What works for some may not work for others. RA is a miserable disease and we just have to keep fighting :)

Sadly, typing and doing anything with my hands does make them worse! I used to love to cross-stitch, can't do that anymore either. Can't really hold the need well. I tried to keep up with it, because I too was told the keeping mobility is important.

And what are the main inflammatory foods please? I bet I don't eat most of them. Not sure I understand your comment about leaky gut.

I am glad for you that found dietary changes that worked for you! But as you said, everyone is different. I mostly function rather well; I MUST, since I am the breadwinner for my family. I am not on tons of medications, but the ones I do take keep me functioning. I know what to expect though when I over-do things.

~flamanette~ :coffee2:

I have been on Atkins for 2 weeks and have lost weight but my joints are quite painful. This is the second time a low carb diet has done this to me. I was told years ago I have osteoarthritis but have numerous disfigured joints. 1)Could this actually be RA? 2)What is a better diet than such high protein? I can't stand being hungry that low calorie causes.

Originally Posted by Amarillo19:
I have been on Atkins for 2 weeks and have lost weight but my joints are quite painful. This is the second time a low carb diet has done this to me. I was told years ago I have osteoarthritis but have numerous disfigured joints. 1)Could this actually be RA? 2)What is a better diet than such high protein? I can't stand being hungry that low calorie causes.

I am not following any of the "famous" low carb diets (I have in the past, but that was before RA). I am following and exchange system based on the ADA lists. I found what I am following a site called HillyBillyHouseWife. There are a few "plans" she lists -- one of them happens to be a higher protein one. I personally have not found my joints to be any more aggravated since following this plan, and I am most definitely NOT hungry. I am eating ~1400 calories a day; but I choose things that I know will carry me the longest.

As for your condition being RA v. OA....only your doctor can tell you for sure. The biggest difference in the two, from what I know is that RA is symetrical: it affects BOTH sides. Both of my hands are affected; both of my feet; both shoulders; both knees....you get the picture. From what I understand, OA is a joint by joint thing: you may have OA in one knee for example (and of course you may have it in both too). I hope what I am trying to say is coming across clear.

~flamanette~ :coffee2:

Thanks for the information. I'm going to ask my doc to test me again. The first was many years ago. I have a cousin who has RA and OA. I just know I hurt - some days more than others.:(

FYI-A good source of information about RA on the Net is the Merck Manual. If you google it, go to 'sections' on left of the page, click on Musculoskeletal & Connective Tissue Disorders & then Rheumatoid Arthritis, you'll find a wealth of info.

Yes, joint involvement is characteristically symetrical.

Amarillo, let us know what your doc says.

Originally Posted by joyful retiree:
FYI-A good source of information about RA on the Net is the Merck Manual. If you google it, go to 'sections' on left of the page, click on Musculoskeletal & Connective Tissue Disorders & then Rheumatoid Arthritis, you'll find a wealth of info.

Yes, joint involvement is characteristically symetrical.

Amarillo, let us know what your doc says.

Hiya Joyful! Nice to see you again! Oohhh, I must go check out the Merck Manual information.....even though I have been dealing with RA for 2 years now, I still don't always fully understand my own disease; seems no matter what website I get pointed to, I learn something new every time.

~ :coffee2: ~

Flamanette and Joyful Retiree - Thanks for helping me. I don't see my doc until next month, but I'll let you know what the tests show.
Also, to you both: I got the book Insulin Resistance Diet yesterday. It really looks interesting and doable. I have at least 75% of the symptoms of insulin resistance. It seems pretty certain that's my problem. I'm anxious to start the diet. Any suggestions for me?

Hello Everyone,

Flamanette - Please do check out the Merck Manual. It's a reference often used by docs and nurses, & is considered very reliable.

Amarillo - The Insulin Resistance linking has worked very well for me, but I had to also keep myself honest by counting calories. According to their formula, if you have the max carbs of 30 gms at a meal, you only need 14 protein gms to link with that. I found that eating like that just didn't satisfy me, so I followed their instructions & ate more protein if I was still hungry. I finally just started eating around 20-25 protein gms at each meal & thankfully feel satisfied with that usually for at least 4 hours. I still go ahead & eat more protein if I'm feeling more physical hunger. That doesn't happen very often. My only advise is don't go hungry. Experiment with the diet, & if you are still hungry at 15 to 20 mins after the end of the meal, remember to eat more protein and, if desired more veggies (not corn or potatoes).

Good luck to you both.

My sister has RA. She is only 22 years old, but already in need of a double knee replacement.

However, I am SO proud of her! She has lost 40 pounds without exercise, simply by eating healthy. I will let her know about this group :)

I was diagnosed with RA almost six years ago. I can not seem to lose the weight! I want to write more but I have a clogged sink and the timer just went off to check out the drano is working.. grrrrr.....

Will check in later but wanted to say "hi" and I'm with you all!!

Hi all,
I just joined the 3FC and found this thread. It is sure comforting to know I'm not alone, as at the time you get your diagnosis it sure fills like you are.
I'm not big by any means, but I know that when I was at one point only 128 pounds my knees did not hurt, I was happier. My goal is to loose all the 20 pounds I have put on in the past year. I was diagnosed with RA just 4 weeks ago and it was like a blow to the face the only thing what changed is that I could put a name to my pain. All the pains I had, I was interpreting as the aging factor. I am not a complainer and I will work through the pain. To take a pill for my pain is the last thing on my mind. I have never suspected that I would have an autoimune disorder as there is no family history of any.
Well, here I am, 48 years old and my hands are sometimes so much in pain that it fills like my digits are going to fell off. I have to stop and massage them to be able to touch something again. I am trying to ease the inflamation with ginger tea and turmeric suplement, but how long is this going to be able to help me, who knows. I did not do any elimination diets yet, but I guess this would be an alternative, just hate farmacauticals.
I am on a low impact exersise program to keep good muscle mass, as muscles support the joints, you can not loose the muscle mass in order to fanktion.
My daughter is a kinesiologist so I have to listen to her in this case.
And yes, you can not knit or cross stich as holding the needle is just to painful, but squeezing a stress ball is an welcome exersise.
Well all the best to all of us RA kids on 3FC and everywhere in the world , may the 2011 be pain free for all of us.
J

Hello All,

It's been awhile since I have been here, so I'm just checking in to see how you are all doing. Amirillo - Did you ever try The Insulin Resistance diet? Joasia - So sorry to hear about your diagnosis. Yes, the hands thing can get really bad, & it seems like you just need them for everything, no matter how much they hurt. If I can be blunt, sometimes, when in a flare, it is just excruciating to pull panties up & down. Even the lightest touch or pressure can hurt. Let us know how you are doing & how the treatments you are trying work for you.

I was diagnosed with RA 7 years ago. The first three years were horrible and it got to the point where I had level 7/8 pain in multiple joints with no relief from medications. I had to have several shots in joints to just keep moving....could barely walk because of how it hit my hips so badly. I eventually even had to leave my job which I loved so much!!! Finally went onto a new medication that worked....took three and a half months to start working, tho. I have been on it since 2006 but it was a hard decision as it has some bad risk with taking it. Now, I am not 100 percent like I was before RA, but so much better that I am not depressed all of the time. I have gotten to participate in lots of fun family activities that I would not have before so for me the risk have been worth it. However, it seems like it isnt working as well as it has so that has me worried!!!!

I hope we all find what works to help relieve RA pain!!!

joy3 - What medication are you on? When I was functionong at my best & had the least pain, I was on a cocktail of Methotrexate injections, Enbrel injections, a NSAID, & using predinsone during flares. The Enbrel was an absolute miracle. It was what really kept me functioning at a very satisfactory level for about 5 years before it became ineffective. Sometimes medications just stop working. Maybe your doctor can give you something else to try. Let us know how things go for you.

Hi joyful retiree, I tried several meds until finally going on Rituxan...get infusions every six months. Also, take Arava daily. Try to stay off pred unless I just have to! Also, take pain meds. So glad you had those good five years, but sad that the meds became ineffective! I go to a online support group and some of the girls there have told me the same thing about the meds becoming ineffective after a time. It is very interesting to me about the carbs causing flares at different levels. Think I will track mine and see if it does the same for me. Exercise is a challenge with RA for sure!!! I do workout six days a week, but can't do anything to strenuous...have back issues, too. I do the Leslie Sansone walking DVDs and they have really helped me cardio wise. Tried weight lifting but caused elbow and shoulders to flare up. I have the drive to workout but not the body!!! Darn RA!!!! I just had my set of infusions in Dec so will see how it works this six months or may move onto something else. Hoping to stay in touch as it is nice to have support as we go thru life with RA.

Like you, joy3, too many carbs can cause flares for me, but so can too few. Sugar seems to bring on the worst flares for me, so I need to eat that infrequently in very small amounts.

Just experiment to find what works best for you. What has kept the carbs at a level that my body seems to like is The Insulin Resistance Diet's method of linking. I think it's because you never go above 30 carbs at a meal, & you must have at least 7 gms protein for every 15 gms carbs. I do better with a higher protein to carb ratio, & I rarely eat more than 90 or 100 carbs a day. I also follow their advice about not eating more than 32 carbs in any 2 hour period & if hungry eat protein &/or free veggies. The only veggies they count carbs for are corn & potatoes. What I don't like is that they are okay with too many processed foods & I feel a lot better eating as simple as possible with emphasis on whole foods.

It's quite a balancing act with the RA to find out how your body reacts to food & exercise. I have found that getting enough rest is also a part of the equation, & since retiring, the quite significant decrease in stress & being able to pace myself better has been a huge blessing. Maybe I will get a handle on this some day, but I've yet to get accustomed to the decreased functioning & the continual pain & stiffness. Even at it's best, they never go away completely. The good news is that even if meds lose their therepeutic value, there's always a new one to try & I have great hope that a cure is just around the corner. Lots of research is going on & it's just a matter of time.

Hello ladies,

I was diagnosed with RA when I was 32 (four years ago) at that time, I was only experiencing swelling in my right knee so at first my rheumatologist didn't think I had RA but sure enough the lab work confirmed my diagnosis :(

Since then I have had pain in my hands and my feet. The pain in my feet was by far the worse... It lasted about a month and it was the loooongest month!! I have very active 7yr twin boys and it was depressing not being able to run around with them.:cry:

I have felt great the past six months and treasure every day!!:woohoo:

I'm so excited to find this thread! I was diagnosed with RA last April. That was after taking a minor spill and not being able to walk on my right leg for five months. After three months of repeated trips to the doctor, an aspriation (never doing that again!), and an MRI (for nothing) he finally sent me to a Rheumatologist. That particular one didn't work out but my current one is being very helpful. He actually listens to me and wants my input on my treatment. I was on Prednisone and Methotrexate for six months and gained 40 pounds for my trouble. I've been off both since October. I started Meloxicam last week. I have seen some improvement but nothing remarkable. I currently have RA in the middle finger and thumb of my left hand, both knees, right shoulder, neck, and all the way through my back. I'm trying to lose the 40 pounds and maybe some of pregnancy weight from my three year old. I have a lot of issues with the grip in my left hand. When I have time I crochet to keep up the movement. I do bookkeeping for a friend's home based business. I've noticed I have a lot of swelling in my hand if I sit in certain chairs at different heights. I'm also a full time college student with three kids. We are constantly busy so no matter how I'm feeling I have to push through and keep going. I think that helps me in my case.

I'm reading the book "Wheat Belly" and so far there is some good information on wheat causing some major health problems. RA is one of them. I know I've gotten much better being gluten free. Leaky gut causes an immune response and your immune system starts attacking your joints. Not to mention the heart disease, cancer, and other problems. I take no RA meds and I feel better now than when I did when I was eating whatever I wanted and taking mtx, Arava, naproxen, and prednisone.

I have Lupus with an RA component but I'm in remission without medication :).

I find that keeping my diet high protein/healthy fat and low carb helps immensely! I have to be careful not to stress myself out.

I have a mild case and hope to keep it there... building muscle has gone so far for helping my joint pain. They told me my left knee would need to be replaced back in 2004. I was barely walking. That was the last straw for me. I lost the weight, started exercising, totally overhauled my eating, and today the knee gives me 0 problems! I saw a doctor in March who was amazed I was the same person as my medical chart presented to her :).

Getting healthy changes everything!

Also! My little miracle food, coconut oil! I eat obscene amounts of it and soak with it in my bath a couple times a week. It's delicious, smells divine, and my hair and nails are shiny shiny - Plus, there is evidence it helps with joint problems (and a ton of other problems) :D. Make sure you get the organic, raw, unfiltered kind!

ValRock, I'm so glad you were able to turn things around for you :)

I still have a lot of weight to lose. I'm doing LC now and hoping this weight will come off.

I love coconut oil too! It has antiviral and antibacterial properties to it also. That reminds me that I need to make a visit to the health food store before I run out ;)

Hi Ladies,

I am following RA diet and yoga. I have started eliminating foods that are sensitive to my body .
avoiding Wheat , White rice, Dairy ( Oh my god Ice cream too :( ) salt, processed and canned foods.
I prepare my own food fruit salads, Smoothies, veg salads, Cooked veg salad with indian seasonings ( which have healing nature like turmeric, ginger, black pepper, garlic, Cinnamon, cloves, bay leaves, coriander etc.)

I started with slow stretching yoga, and now am able to do power yoga like Sun salutation for 12 to 15 rounds in 30 min . Feeling great. lost 15 pounds in 3 months ( also on steroids ) still to go 20 pounds.

Hope i will reach my goal in 2 to 3 months. :)

Goal, I'm glad things are working for you. Where did you find an RA diet plan?

I have also eliminated so many inflammatory foods and I get frustrated sometimes, but I know I feel better when I don't have them. I've been gluten free and have limited dairy. I'm now going completely grain free.....no corn, rice, etc too. I'm cutting back on processed foods too. It's a process for me.

I have a teenager in the home, so we are on the go a lot and some days I don't do as well as other days. I do try my best and feel better when I do.

Good for you for the weight loss and the ability to move your body easier with eliminating inflammatory foods :)

Thanks Violet,
I have friend in US who couriered me a book by Barbara Alan " conquering arthritis " what doctor does not tell you. This book changed my life.
She has a web site you can have glance. search google by the title i have given. hope it works for you too.
past 3 weeks i am not losing a pound this is frustrating :(


Its difficult to cook for family and to cook separately for us. I know the pain , daily i am tempted to have carbs, Ice creams chocolates, sweets ...... But control, control, control... :) hahahha

But keep going.

Hey like you guys I have RA. I was 12 years old when I found out that I had it. My mom took me to so many doctors just trying to find out what was wrong with me... A lot of doctors thought I was just haveing growing pains. My mother finally took me to the childrens hospital in Cincinnati Ohio. The doctor's put me all kinds of medication and steroids. That's when I started to gain all my weight. It's hard for me to exercise because I need a knee replacement ... However most of the docs want me to wait until I'm @ least 35. So now in in a routine every summer I lose weight because I'm always swimming and going to the lake. I feel so fee when I'm in the water. Then winter I'm stuck in the house my bones ache all the time and I just do not want to move!

I'm hoping to break the cycle this winter. Wish me luck!