My mother has RA

By Jitterbug Thursday, September 10, 2009

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I'm a 21 year old girl and my mother has been living with RA for nine years now. The only thing she is taking for her RA is pain killers such as oxycodone and valuum for the pain. The doctors had her on methotrexate but it was making her too sick. It is hard for me and her family to watch her suffer from this disease, but it is also hard for us to see her Mis-use her pain medication. It has gotten to the point to where we have to lock it up and give it to her on a schedule. She was doing great for a while but it seems that she goes through Cycles of mis-using her pain meds. Is there anything out there that is reccomended for RA thats not just pain killers for this disease?

I joined this site to learn more about people with RA and how they are dealing with it. It seems to her that she's the only one who suffers in this world. She is so pessimistic when she's on her medication and its affecting her whole family. Although i know she suffers, i just know there are many people out there do as well that are actually trying to make the best of life and are trying to be optimistic. I would like to know what those people do to make the best of life living with their RA. Any tricks up your sleave? any special things you take for it? what types of exorcise you do? anything would help. Thank you.

Comments (11) | Add comment

bmbowman

9/10/09 9:20am

There are a lot of other mediciations that she can try. Please get her to a rhuematologist and they can prescribe her other medicines to see which ones work for her!! Pain killers alone is not enough, it will mask some of the pain but not all of it, and they certainly do not stop the progression and or destruction that this disease can do!

Jitterbug

9/10/09 1:19pm

she has a rhuemetologist up in anchorage, but we can hardly afford to go up there and see him on a regular basis. I hardly think that her doctor down here is helping her much, all he does is hand out pain killers like they are haloween candy, and it is not good for my moms physical or mental health at all!!! She's not getting any better, but she's gaining a bad addiction that is tearing our family apart!! my mom claims she can't afford the medication that we see for people with RA all the time, or it conflicts with her other meds she has to take so she can't take it.

Ellen Galo

9/11/09 11:24pm

Getting to the right kind of doctor and meds can be the difference between living and just existing. There are also different kinds of arthritis, and if she hasn't been fully tested, even her family doctor can order some of those tests.

There are programs to help people who cannot pay for their meds. Your family doctor should be able to at least point her in the right direction...

If you haven't looked already, you might want to check out the Arthritis Foundation at www.arthritis.org. I believe there is information there that might be helpful to you and your mom (and your whole family!)

I would be disabled without Enbrel, and I was diagnosed in 2004 but am still working full-time. I will pray that your mom is able to find a doctor or facility where she can be properly treated and that your whole family finds the support you need.

Please keep in touch with folks here - for yourself, first of all!

Roshni

9/10/09 10:00am

Hi,

Pls make sure that she reads the posts on this and similar websites. It will give her a sense of solidarity, if I may use that word. Second, she needs to see a good rheumatologist. Depression with RA is very common, so if you think she is depressed, counselling would be a good thing to start.

My mother, me and my elder sisters all have RA. Its tough, but its very very important to NOT to lose hope. Hope is a wonderful thing. I am glad that your mother has you for her daughter. MethTx is not the only med out there. I am personally on homeo remedies, but the western meds work wonders. She just has to find the right ones for her body.

Pls invest your time in finding out a good rheumatologist. Too much painkillers will attack the stomach lining. So the sooner she cuts back, the better.

Exercise is important. We are not talking about hardcore weight training; but, some form of movement is necessary. If possible, ask her to take regular walks. Do light yoga. There are yoga movements you can do lying down & sitting.

I hope your mom gets well soon.

Love & Peace,

Roshni

Jitterbug

9/10/09 1:27pm

I tell her she should always exorcise because she needs to keep her joints moving. her RA has flaired up to the point where my stepfather would have to carry her up and down the stairs last january. a big problem of hers was how she would mis-use her pain killers, she goes through cycles and when she gets on them, she doesnt see what it is doing to her and is blind sided by it. she was doing SOOO well for a few months, she'd cut back and was even starting to walk again with out her cane! but since she'd had another bad flare up she got into taking too many pain killers than the doctor pre-scribed. :( it saddens me to see her do this cuz i care for her! I always ask her to go on walks with me or do some sort of exorcise but she never does! she claims it hurts to bad yet when she gets on her pills she's always on the go to the point her ankles swell up! she'll be up all night doing spring cleaning. we try to tell her to take a break but she wont listen.

what kind of homeo remedies do you use? can i ask? any advice on what she can ask her doctor about for taking?

Roshni

9/10/09 1:42pm

of course i can tell u about the meds i am taking. however, these are not generic homeo meds, the doctor has to know the patient's - psychological, physical - constitution.

I am doing something called "gemmotherapy" along with arnica montana for pain management. I have a variety of medicines, Rhus Tox, juniper, ribes nigram etc.

here is one more remedy - take some mustard oil, chop up some garlic and heat it.

it smells kind of awful, but while its bearably hot, massage it on ur mom's painful joints.

its really cheap and it really helps me. I also eat a lot of ginger, turmeric and garlic.

ginger and turmeric are known anti inflammatory foods. Turmeric is a yellow powder you can get if u go to any indian store. Whole Foods also has them.

you can add turmeric, ginger and garlic to any food you make.

if she eats red meat, she needs to stop. also ask her to stop taking dairy products, cut back on sugar & salt. fortified soy milk is a great alternative.

its easy for an RA patient to go crazy on pain meds because it helps u to feel normal for a brief period, there wre times when i had 4-5 of them everyday coz i just couldnt get up.

What ur mom needs is a good doctor mre than anything else. and tell her to reach out to other patients. it helps us to know that we are nt alone in ths battle.

love,

Roshni

Jitterbug

9/11/09 5:50am

Thank you so much :)

Kim

9/10/09 12:41pm

First of all- acknowledge that your mom's pain is real. Often people underestimate the pain because you can't see anything wrong and the person may have been feeling fine just an hour ago or yesterday. RA pain is cyclical, which perhaps correlates with your mom's tendency to want more pain medication. Often when I'm in pain I take my next pill a couple of hours early. Try not to judge her; it doens't help the depression. Almost everyone with this disease has days that they feel hopeless, especially when in pain, and then the pain killers are depressants, too. Remember that you can make suggestions, find doctors, and give your mom information, but it isn't your disease to manage. Taking away her choices may make her feel even more helpless. Perhaps you could ask if she'd like to go for a short walk with you on a pretty day.

I am on Plaquenil, which is a cheap and benign medication (doesn't make you sick, not hard on the liver). It takes about 4 months to work, but is worth a try. Many of us are also vitamin D deficient, which causes muscle pain. Sunshine and supplements help!

Jitterbug

9/10/09 1:31pm

Trust me, me and my step dad try to get her outside as much as possible, but she hardly leaves the house. we offer to go on walks, but half the time she isn't feeling up to it and would rather just stay home. I know her pain is very real, i've had to help her sit up, stand up, and all that sort of stuff. i've seen the way this disease has changed her body, and trust me i know she's in pain! i hate seeing her in pain and want to help her. thats why i joined this site, to get help. She is very computer illiterate and so i'm always the one to get online and look up stuff for her. i just figured it'd be nice to connect with other people that have RA so i can get a better understanding and maybe she can find some people to connect with and talk about it with.

c21tamit

9/14/09 10:20am

I know that I personally am afraid to get out & walk. It's not the pain, it's the embarisment that I can walk but may not be able to get back. I want so much to walk along the beach, or shore walks that we have in our area. I feel great to start out but loose steam quickly. Now how do I get back? That's my fear. It does keep me from heading out to do things that aren't short trips. The security that I have being in my own home or yard help, but it does limit how far I'll go. I'm headed out to my garden shortly, but I hate having to keep my cell phone attached to my hip- in case I need help getting up. I hate feeling the helplessness that is brought out by my bodies rebellion. These conditions, RA, Fibro, OA all steal our independance from us. We can't do the things we want to without having someone (or some kind of safety line) with us.

Your mother is very lucky to have you & your dad with her, but depending on someone else to do everything for us is very depressing. A xounselor may be a good idea, but try to find someone that understands what has been taken from her. Learning how to live wtihin the limits set by our bodies & access to services can be a long process.

utah71

9/19/09 8:50am

i get winded and out of energy too take little walks sit and rest for a while and walk when u need too i not the distant you walk ,it the ability to keep mobile in your joints some days i can walk far and some days i cant walk more that 200 feet and im tired

My mother has RA

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