High tolerance from pain? RA?

[Gracie]

Recently got on methotrexate and Humira. I did my best to exhaust everything else I knew first

My last resort is the Simponi the RA doc wants me on. But not until it's THE last resort.
How is the methotrexate and Humira working for you?

 

[Gracie]

Personally I think the stress is the big factor for flares. Baths in epsom salt help too because it draws out toxins from your skin as well. I think over the years I have tried most everything but I am always open to new info

Make note of everything you eat, how you felt the day before and what you did. It will help pinpoint patters for flares. Mine was constant and just kept getting worse. I did the diet thing and started out at about 120 and went down to below 95. It took quite awhile to get me from backsliding, I have to say it was quite scary for awhile. At one point I was eating brown rice, vegetables, and beans every day. Cutting out dairy is a help to many along with tomatoes and potatoes, sugar, wheat flour and meat. It was too much for my body I almost croaked from malnutrition that time

One gal I was reading said she keeps a crock put on 24/7 with bones brewing. She and her family pull a cup out like it's coffee, but instead bone broth, and replace the water of how much they take out to sip, back into the crock pot. I'm not sure I want to do that, but I might pour cooled broth into ice cube trays so I have some for cooking veggies and whatnot if not for just drinking a cup of broth itself. And in the freezer..it lasts 6 months.

Meanwhile, MY problem is going to be the stopping of sugar. I love sweet tea and sweat coffee. Some folks recommended Stevia but I heard bad things about that, so I gotta wean off the white refined sugar I guess. That is NOT going to be fun.

 

[TrinityPower]

I have been on methotrexate for about a year now and it has helped a lot but I feel like I have morning sickness a couple days a week. I think I have figured out why it makes me sick sometimes and not others. I am testing this out as it is only taken once a week. If I have protein for dinner then take it before bed I am not sick. The Humira I just started a month ago and it is an injection done every other week. I have no more swelling in my hands and feet and can climb stairs again and walk normally. I can ride a bike with my daughter and be a normal mom. Not sure of the long term issues. I am having some sinus problems but combat that with doing a saline nasal rinse.

Before I started this I was on 5 mg of Prednisone and Indomethacin each day. That is an alternative to Ibuprofin that is less harsh on the stomach. Naturopath also had me doing a smoothie shake with this anti-inflammatory powder. Oh...if you are going natural route Tumeric is a good anti-inflammatory and can be used in foods or taken in pill form. Also bromelain is a good natural anti-inflammatory. It is an extract of the pineapple plant. And do NOT take fish oil! Fish oil has a lot of mercury. Find an alternative Omega 3 pill. Flax seed is also very good. Grind it up in a coffee grinder and sprinkle it on foods for the flax oil benefits and fiber

 

[TrinityPower]

Yeah coffee is a big no no. Anything with caffine. I did it all and I felt miserable anyway so I had some things I enjoyed anyway. Not fun living when all you can eat is air lol

 

[Gracie]

And do NOT take fish oil! Fish oil has a lot of mercury. Find an alternative Omega 3 pill. Flax seed is also very good. Grind it up in a coffee grinder and sprinkle it on foods for the flax oil benefits and fiber

Thank you for saying that about the fish oil! That was next on my list. I will ask my pharmacist which is the best omega 3 pill.
I have tumeric....LOVE it on my taters, but I'm not supposed to eat nightshade veggies, of which taters are, but I am not ready to give them up yet. Some websites say taters are fine, some say they aren't, so not sure. Only way to find out is continue with my 3 tater tots every morning with my egg and see what happens.
It's the sugar I'm going to have a problem with.

 

[TrinityPower]

I can photograph my hands and show you what it does. I support the natural route first and like I said, I did it for years but it WILL progress and it is very ugly. If it can be controlled that way then I commend you. I didn't do any treatment for years really except some natural supplements. Your pain tolerance gets pretty adjusted but you do not know how much pain you are in til it is gone and it is like a fog lifts from your enviornment

 

[Gracie]

Yeah coffee is a big no no. Anything with caffine. I did it all and I felt miserable anyway so I had some things I enjoyed anyway. Not fun living when all you can eat is air lol

I drink coffee...but its decaf. Never did drink regular coffee anyway, so I am not missing anything.

And I hear ya about air for food. It does suck.

My daily intake:

3 tater tots, nuked to thaw, then fried in extra virgin olive oil. Cook one egg over medium in same oil. Heat flour tortilla or corn tortilla, wrap around tots and egg. 1 Ensure drink.

No lunch.

Dinner is maybe a chicken wing, cup of rice or an avacado instead. Hot green tea.

Snacks are a couple of Cool Ranch Doritos.

And that's it.

 

[TrinityPower]

And do NOT take fish oil! Fish oil has a lot of mercury. Find an alternative Omega 3 pill. Flax seed is also very good. Grind it up in a coffee grinder and sprinkle it on foods for the flax oil benefits and fiber

Thank you for saying that about the fish oil! That was next on my list. I will ask my pharmacist which is the best omega 3 pill.
I have tumeric....LOVE it on my taters, but I'm not supposed to eat nightshade veggies, of which taters are, but I am not ready to give them up yet. Some websites say taters are fine, some say they aren't, so not sure. Only way to find out is continue with my 3 tater tots every morning with my egg and see what happens.
It's the sugar I'm going to have a problem with.

Some people have no issue with potatoes and tomatoes. I still indulge in them from my garden. Gotta have some pleasure in life lol Some days will be different and you can tolerate them some not. If something is deep fried or has hydrogenated oil stay away from it. Don't eat deep fried fish or MSG...which is in most asian dishes. It will swell you up and make your mind goofy. It feels like your joints are hot and tingly but in a very distinctive painful way

 

[Gracie]

My hands are not twisted yet. Nor my toes. Eventually they will get there. I have an ugly gangelion cyst on my right wrist knuckle. I call it my old lady hand. But it doesn't hurt. What hurts is moving my wrists certain ways, and my trigger finger than won't bend into a fist. I keep it poked out straight all the time..except when I am typing. I can use it for that but nothing else. No grasping anythin.

I rub a LOT of bagbalm on my hands, wrists, knees and elbows. It makes the blood move around better.

 

[TrinityPower]

Eat a lot of salads...the more raw veggies the better and organic is best but I only get organic greens, cucumbers and tomatoes. The regular ones taste gross. I used to take a glucosamine/condroiton pill three times a day, the seed oil pill, bromolain, and a bunch of other stuff. Also check into Vitamin D level. Mine was 8 and I had some dementia issues from it being so low

 

[Gracie]

I only use extra virgin olive oil...and everything is drained on paper towels.

I would KILL for a farmer john maple sausage. omg. I don't miss my bacon like I thought I would.

I think I want to try lamb. It was recommended in quite a few sites. And I want some salmon. I don't eat beef any more. And ground turkey meat doesn't do anything for me anymore either. Heck, I don't even drink milk any more. I'm pretty much egg, half a piece of toast once in awhile, rice chex cereal, tea, doritos, avocados, maybe a peach now and then. I eat like a bird. I should look like Twiggy.

 

[Gracie]

Eat a lot of salads...the more raw veggies the better and organic is best but I only get organic greens, cucumbers and tomatoes. The regular ones taste gross. I used to take a glucosamine/condroiton pill three times a day, the seed oil pill, bromolain, and a bunch of other stuff. Also check into Vitamin D level. Mine was 8 and I had some dementia issues from it being so low

I go to the doc next thursday. I want another blood test. Last one I was fine but low on potassium. I get enough VitaminD cuz I am always in the sun. Farmers market here is every Monday. I will be hitting that from now on and getting some fresh greens.

 

[TrinityPower]

My hands are not twisted yet. Nor my toes. Eventually they will get there. I have an ugly gangelion cyst on my right wrist knuckle. I call it my old lady hand. But it doesn't hurt. What hurts is moving my wrists certain ways, and my trigger finger than won't bend into a fist. I keep it poked out straight all the time..except when I am typing. I can use it for that but nothing else. No grasping anythin.

I rub a LOT of bagbalm on my hands, wrists, knees and elbows. It makes the blood move around better.

Aspercream works well and Capsasin cream is good but be very careful with it. If you rub your nose or anything else it will feel like there has been a jalepeno deposit made. I call those nodes barnacles. I have multiple ones (ones on top of ones) all over my fingers. Honestly I have to say that the biggest relief I have had is a sense of humor about it all. Keep your spirits up and if you are a spiritual person talk to it and say Hey we are not doing this today get gone!

 

[TrinityPower]

You are burning calories constantly from the inflammation. I can give you a good soup recipe but it does have tomatoes in it. I have really enjoyed it though

One reason my avatar is what it is is because the rest of me looks so bad that I hope to inspire others with RA and say no matter what your hands and feet look like you can still look fabulous!

 

[TrinityPower]

This is my worse hand. I do not want anyone else to wait too long and let this set in for you

 

[Gracie]

Oh! I am so sorry. Your poor hand! But dayum girl..your body rocks!

Does your soup recipe call for a replacement of tomatoes? Those things give me GERD. Haven't had to take a tums in almost a year cuz I don't eat anything spicy any more. I so miss my tacos and enchiladas and big fat juicy burgers.

Can your fingers be surgically repaired? I'm so sorry.

And now I feel bad for bitching my my hands which are not twisted. Yet. I was diagnosed at 58 years old but it took 2 years or so, for it to show up in my wrists, knees, feet. Initially it was in my back...or rather IS in my lower back. Which is why I sleep in a recliner chair. No more beds for me. It works, too.

 

[TrinityPower]

I have had it since age 28. I am 44. The hands do not hurt like they did. The process of them getting that way is a painful journey lol. My left hand is not as bad but I used to type for a living and am disabled and have been for years. The soup calls for canned tomatoes but I am sure you can substitute what you want. I always tweak recipes. It is just a veggie soup but I have really liked it.

I have to giggle a bit about the comments. Don't feel bad about the picture and complaining. Everyone deals with their own thing. Showing my hands to anyone is a rare thing for me but I wanted you to see what it can become and after it is damaged fixing it is a process. I could have surgery at some point but use of the hand for a month time is involved and I can't be out of commision that long. I can't even be out for a few hours much less a month lol. I also do not like the idea even at that point to have to burden someone else with my care so I deal with it as it is. My feet look similar so finding shoes is an adventure. I have been limited to tennis shoes and slippers for years. Wearing a nice dress or slacks looks dumb with tennis shoes and I have one moccasin pair of flats I can wear but again it looks pretty dumb. I do not go out too much except for the store and when I did volunteer work for my daughters school the kids were not always kind and ridiculed my daughter because of my deformity. I always felt so bad for her. I was and still am an embarrassment to my now ex husband. I walked funny and slow and he didn't want to be seen with me. It is not only a debilitating disease it also takes a mental and emotional toll and causes a lot of depression and lack of self worth (another reason for the avatar...my little rebellion victory to say take that RA!).

The more rewarding thing I can do now is bring awareness to the outcome and help anyone else I can in their journey of the natural treatments. If you have any questions feel free to ask, I have been doing this quite awhile

 

[TrinityPower]

I have a tempurpedic adjustable bed. They work very well but are a pretty penny

 

[Gracie]

You seem to have your shit together, so yeah..be my role model, please! And your ex is a dick. So are the kids at your daughters school for making fun of you.

Two of my toes are getting smooshed together so I don't wear shoes unless I hafta. Uggs are perfect, but I don't have to go anywhere fancy, either. Maybe try them this winter? Nice and wide and soft and warm, easy on, easy off. I have like 10 pair in my closet. Rest of the time I am barefoot so my toes don't get more squished than they are.

And yeah...you have a rockin' body, girl. Dayum.

 

[Gracie]

Oh, yeah....I was really in a depressed state not long ago, and was looking at fast and easy SURE FIRE ways to off myself, when Mr Gracie came in the room and said "whatcha looking at?" and I said "I don't want to be dependent on you and if I get to where I have to rely on you to wipe my ass, I'm offing myself". So what does he say? He says "make sure you leave a note so I don't be seen as a suspect of a murder, make sure you leave your car where it is undamaged so I can sell it, and do try not to make too much of a mess".