Hi all,
My wife, Belle (34 yo) was dx'd today with RA. Still figuring out which way is up at the moment, need to vent a bit and I've got a bunch of questions.
The story so far...
Six weeks ago, Belle's back (upper middle) starts playing up and she was only getting a couple of hours of sleep. 1st visit to the GP and she's off to the chiropractor along with a prescription for some pain relief. 2 weeks without improvement and she's sent to a physiotherapist. By this stage she is taking Methocarbomol, Ambien & hydrcodone. Then its off for an MRI and a blood test. MRI's clear but the blood test came back with elevated proteins and calcium. On Monday, we get a speech from the GP about bone cancer, Lupus and RA (wow - what a lovely choice!). Another blood test, the longest 3 days of our lives, and here we are..
A bit more info..
Belle's normally a really bright happy person. (At the moment she is just exhausted and down) She weighs around 102 lbs and has a tiny frame. She exercises every day (aerobic), doesn't smoke and only occasionally drinks. We both eat well (lots of fruit & veggies) and Belle drinks lots and lots of water (no tea or coffee).
She works in a very busy role, long hours with 10 direct reports.
Just prior to all this happening, we had met with an IVF specialist (we have been trying to have children for five years). We had gone through a range of treatments and IVF was the next & final step.
A bunch of questions...
(I've read a considerable amount this morning but their seems to be some conflicting info on the net)
As I understand it, RA is incurable but treatable. Is that right?
What can we expect at the rheumatologist? What are the next steps?
What can we expect over the next year?
Has anyone had a similar problem with their back? Most others seem to have RA start in their knees & arms. Did changing to a therapeutic bed bring any relief?
Is fatigue prior to drug treatment typical or is that simply a result of poor sleep?
I've also just read about integrated therapies? Do other recommend it? If they do, how important is it to have a specialist who supports additional alternative therapies such as acupuncture, massage, meditation, dietary supplements, etc.
Pregancy, I've read, often causes flares in RA. Has anyone been diagnosed with RA prior to having children? What was your experience?
Can work stress play a part in managing this disease? How significant is it?
How important is building up muscle strength? (Belle's tiny).
Diet: Anything she should avoid eating or drinking?
What other sources do people recommend for information on RA?
Apologies for the long post - just trying to get my head around what's going on and what to expect. (I've also promised Belle I would find out as much as I possibly can)
I'm not expecting anyone to answer all my questions but there might be a "bit" that you can relate to that would really help us right now. I really appreciate any information people can provide.
Thanks & take care
Belswingman
OK Belswingman, I will take on some of your questions. Other members have good experience to share also.
Fatigue is a symptom of ra. A very prominent symptom. I have read some people have back problems but extremities are more common. My issues are in my hips, knees, shoulders, hands and wrists. RA is not curable but is very unpredictable. There have been some people that have complete remission or their ra is completely controlled with treatment. The wierd thing about ra is it effects everyone differently and it is very hard to predict how it is going to effect your wife. The important thing is that you try to stop any permanent joint damage. That can happen very quickly and it will take a good rheumatologist to know the best treatment for your wife.
Stress is a major factor in my ra. For many of us, a major stressor was what brought on the first symptoms of ra, and I know stress will make my flares worse and may even cause flares.
There is a lot out there about diet. No one knows for sure the cause of ra but some believe that it is a reaction to certain foods, the problem is that there are so many foods that can cause it, foods that you and I believe are healthy, it would be a major effort to systematically avoid these foods to figure out if it makes a difference.
This board is a great source for information, the arthritis foundation, there is an arthritis magazine and the internet. Knowledge is power and this diagnosis will definitely change your wife's priorities in life and you will want to know as much as possible. The good news is there is a lot of research being done on ra. There are many options for treatment, IF you have insurance because many of the options are quite costly.
Pregnancy is known to STOP ra flares so if your wife gets pregnant, she may get some relief. I believe in staying active and keeping good muscle strength. It only makes sense. The challenge is balance - rest and exercise. That is getting to know your body and your illness. It is very personal and the disease effects everyone differently.
I have heard many good things about alternative therapies. All the ones you mentioned seem to be helpful.
Ok That is enough from me. Your wife's biggest asset is YOU. This disease tends to isolate people because it is so misunderstand. She is so fortunate that you are taking the initiative to learn about her illness. You two will get through this together. It gets better. I believe that because all of the wonderful people on this board keep reassuring me. Good Luck.
Hi, have a look at my Husband David's posts from a few days ago for a list of my symptoms to compare. I'm still waiting on a DX, does your wife only have back pain - if so i think? this is pretty unusual - maybe have a look at ankylosing spondylitis - i think that affects the back. I got my first flare at about 4/5 months pregnant - I actually have back pain - mid back above lumbar but RH said RA doesn't affect this area. Tiredness is a classic symptom of inflammation - apparently especially in the early afternoon. I reckon stress can play a big part because I sure had plently before this happened to me. Seems to be no definate test for RA but get Sed rate, full blood count for anemia, anti ccp. RA isn't curable sadly but I'm waiting to hear from the guys here how treatable it is, To be honest I think there's usually other joints involved but you should wait for the others to reply because they're so lovely and helpful and they really know their stuff. At the moment I've been avoiding wheat, dairy, red meat and coffee/tea etc - loads of green tea, fish fresh veg and fruit but it ain't making much difference at the moment. What I would say is this. Get as much stess out of her life as possible and as quickly as possible and maybe with any luck it'll die down - sorry I couldn't be more help but the people on this forum are just the best so please don't feel you are alone because they'll help you all they can.Hi,
I was diagnosed about 3 or so months ago. I had been having pain in my hips for a couple of months at that time. One day at work I started to have pain in all of my joints (knees, wrists, elbows, ankles). like Roxy and Julie (Hi Julie!!) the fatigue has been debilitating. Roxy is so right, this disease effects everyone differently and there is really no way to know what the future will bring for us. Just read everthing you can to ensure your wifes course of treatment goes in the right direction and will be as effective as possible.
Though my diagnosis is recent, my RD says I have had it for many years. I had many symptoms in my 20's but was never diagnosed. When I got pregnant my symptoms vanished and did not reappear until perimenopause (12 years later). Some women here get pregnant and go into a remission so to speak only to have a terrible recurrance after the baby is born. So again that is unpredictable. That seems to be the only predictable thing about RA is that you just can't predict.
I wish you all the best and hope you'll have good care. I know your wife is a step ahead to have a wonderful husband to jump into action for her.
You'll get alot of helpful advice here and maybe when your wife is up to it, she'll want to say "hi" too.
I'm married for the second time now to a wonderful man...and I can promise you it makes a dramatic difference in how you manage with this disease. Stress is definately a contributing factor in RA. Do everything in your power to minimize stress. It won't make you well...but it will certainly help you cope. As far as back problems go; I have a very hard time with my back at times. I'm not quite as small as Bell (Who is...my goodness!!) but I am considered to have a small frame and my weight at times gets down to 110 or so; especially when I'm sick. (When my RA is not properly controlled) I also have very large breast for my size and I have often chalked this pain up to that. My RD says the pain in my lower back is RA...I also have a lot of problems with my hips that makes it feel like lower back but it's actually my hips.; but he doesn't really think that's the problem in the middle of my back. I don't know. I guess it's something I've learned to live with. I also have a tendancy to "Throw my back out" (as I call it) probable about three times a year. That's muscular...and probable has nothing to do with RA...but that's the absolute worst. RA is treatable though...that's the good news. I've spent years moving from one treatment to the next. Spending years with ones that worked well; then slowly but surely they lost their effects and I'd have to switch to something else...or increase my dose. I'm now on Humira and MTX and have had very good success with it. It's a life you get use to, and like you've already heard you eventually learn how the disease effects you personally. It's different for us all. We can't sit here and say this will happen...or you'll feel this....or you have this much time. It's unpredicatable. Alternative treatments are fine; but please make sure you're seeing a specialtiest that has studied rhumatic diseases. RA is a serious illness especially if left untreated. Once the damage is done it can not be reversed. Please feel free to ask all the questions you want here...we've all got loads to share, and we've all learned so much from each other. Welcome to our group Bell...and Bell's Wingman; We're glad you're here. Stick around. Lovie Pam, Julie & Roxy, Today's just a really bad day. She's gone back to work and doesn't want to talk about it. All the emotions I would expect, shock, tears, anger, denial. I figure, the first thing is to get her to open up about it and enlist the support of family and friends - she doesn't want to do that just yet. I didn't know about ankylosing spondylitis but, after a bit of reading, the next stop would be the RD anyway. So we are heading in the right direction. Just while I was reading this one of Belle's colleagues rang me - seems she has started talking about it. Good sign!! So thanks again for the support and wishes. I will keep you updated until Belle introduces herself. Thanks for the info & support, Lovie Didn't mean to leave you out - you must have just snuck in before I posted my reply. I will get everyone's messages to Belle - I'm sure she will be here saying hi in no time. One question I can help with is the back pain.My started out around my right shoulderblade(not gallbladder,had it taken out in Oct.)Very very painful.Hurt all the way around into my chest and now hurts all in my back.I feel sick,tired and have np appetite today.I did see a few dr.'s about this.2 said muscle spasms but the one I trust the most is my orthopedic dr. She said I have inflamation in my back probably starting back from when I first got sick In early June.She put me on predisone(6 day pack) and I got to feeling better.Off perdisone now and same old stuff is starting all over.It's a mystery.So frustrating. My symptoms started back in early June.I have no dx. yet.I go for more blood work Wed.I felt like I had the flu,terrible body aches.I too was exercising very regular.Now it hurts to much,haven't worked out in 3 weeks. I can't believe that dr. would mention bone cancer.I can see the RA and Lupus but cancer.Gee, it is scarey enough to think of the RA and Lupus.I have had a few dr.'s scare me like that before.I will never understand that. I just want to say I think it is great you are looking out for your wife.I don't see that very often. Sorry it has been a long battle for you two to have a baby.It is a heartbreaking thing to go through I am sure. I wish the best for you both.I hope you get some answers soon. Sheila
Thanks all so much for the information and encouragement. It's helping a lot. I will get Belle onto this forum - from reading other people's posts, this seems like the best "brain therapy" she can get in order to deal with her illness.
warm regards
Belswingman
thx
Belswingman
Copyright ArthritisInsight.com