I'm scared | Arthritis Information

 

My wife was diagnosed with RA about 2 years ago.  She is on her 3rd Rheumatologist and is still getting worse.  She is in constant pain.  Agony in the mornings.  Her pain is in her bones she says.   She is rarely in the bed when I wake at 6 am.   Usually on the couch rocking herself.   She is 43 years old.   Docs have done all kinds of blood work multiple times but this seems like more than RA. 

Sorry she is suffering. It's scary when you can't get relief. What medications is she on? Do they keep trying different combos?
All the best to you both that she finds relief soon!
I too feel bad for your wife. She should not have to suffer as she has. Have you been able to attend any of her doctor appts with her? If not, please go and share with her rheumy what you observe at home. She may not be telling her doctor how much she is suffering. Is she on Prednisone, this will give great relief while waiting for another DMARD to work.  Sometimes there is no choice, I was one of those, had to have pred, had a new baby and could not function, so if she is not on it, I think she needs a break after2 years. The treatments don't work for everyone, it has been 9 years for me and I still have very badly controlled RA (so say my Drs), and I still take pred, thank God for it despite its side effects.  Best of luck. Janie. < ="-" ="text/; =utf-8">< name="ProgId" ="Word.">< name="Generator" ="Microsoft Word 9">< name="Originator" ="Microsoft Word 9"><>

I’m afraid it sounds exactly like RA to me.

RA can make you feel like you are going to die.

It’s nasty.

Take a deep breath while I give you some RA home truths:

• Severe RA can take from 5 to 10 years to stabilise.
• It takes at LEAST 3 months or more to know if a medication is going to work or not. Some medications can take up to 3 years to know if they will work.
• It takes over 5 years to learn how to manage your life around this disease.
• Everyone involved – the RAer, family and friends…will need time to grieve the losses that have been brought into your world by this life changing and life shattering illness.
• The pain we experience is absolute agony. And most of the time without any kind of break. It may change spots in the body or lessen somewhat for a while or your comfort levels might be good that day…but it’s relentless ability to gnaw away at us never ends.
• It is very, very common to go through patches where the pain is so bad you can’t sleep through it. Medication may be needed and should be used. Adding sleep deprivation to severe RA is not a good thing.
• It’s a myth that the pain is only in our joints. This is an auto immune disease. Our immune systems are overactive producing an abnormal amount of inflammation in our bodies. Inflammation can attack anywhere. Muscles can be just as sore as joints and I’ve had it affect my brain functioning…my speech, my vision.
• RA symptoms can be incredibly diverse…expect it. Things you would never imagine to be RA related, turn out to be.
• A good pain regime is essential to help an RAer function and get some get some quality of life.
• Education and information are essential ingredients to assist both patient and family/friends to adjust to the changes that RA can bring. Knowledge is power with this disease.

There is probably more but I'm not going to swamp you. That's enough for now.

There is no doubt that in the beginning, RA is scary for everybody. The patient and the family.

It's also confusing, isolating and despairing. All of this is 'normal'.

I am a single parent who was have diagnosed over 4 years. I am currently on a drug that will probably take over three years to know if it will work or not.

This isn't an easy disease. Hang in there, both of you.
Cordelia2009-08-27 03:38:18HI Cords, I have emailed you re; your question, cheers Janie.XX Hang in there. This isn't easy and it does not forgive. Be strong for her and never despair. There's hope. There's always hope. The meds we have available today are so much better than ever but they take time. I have to say how extraordinary it is for a spouse to come here looking for help, and how much I admire you for doing so.  Your wife is very lucky to someone like you in her life, at a time when she needs an advocate and someone else to help her shoulder the worry and fears.  I have no doubt in my mind that together you will get through this and there are far better days ahead.  Please don't let the fears overwhelm you.  Often the things we create in our heads are far worse than reality. Just take things one step at a time.  Educate yourselves, reach out for help, and keep reaching out for help.  Auto-immune diseases are still a mystery in many ways, and the medical community is struggling to reveal their many layers.  Often the initial diagnosis is only a piece of the puzzle, and it takes time to fully understand what is the best treatment.  I would encourage you to have your wife join this forum; a place where she can talk to others who have walked in her shoes, and ask questions that she might not find the answers for elsewhere.  There are many emotions that go with this kind of illness, for your wife, and for you as well.  People here get it, they really do.  I agree with Hillhoney. Set your computer up where you wife can use it and have her join in. Having a supportive spouse is wonderful, but sometimes have a sounding board can be a great boost--to her and for you.

Often finding the right mix of medications is a very long progress and on fraught with worries.

If I remember correctly you have previously posted that your wife has a family history of illnesses and diseases that has you are very concerned for her ultimate outcome. Have you made your worries know to her physicians?

I am sorry your wife continues to be in such distress. She has my empathy and you have my very best wishes. Shug
Thanks for the replies.   Yes, she has a family history of cancer.  Mother died of lukemia.  Father died of multiple myeloma.  Docs have so far stayed away from injectible biologics because of this cancer history.  She has been on prednezone and methotrexate.  Now on Arava i think thats how it is spelled.   They keep wanting to slowly ween her off the prednezone but everytime she reduces that med much she goes into extreme pain.  She has been on a couple different pain meds but it doesn't help that much unless she takes more than prescribed.   She had one year left of nursing school and had to drop out.   Now I guess you could say she is basically disabled.  This is a mess!!First of all, I'm so sorry that your wife has to go through this, but she is sure lucky to have a husband who has her best interest at heart. Second, I agree with the others, she may benefit from joining us as well. We aren't "experts" but no one knows better than us the bad days. It won't help her pain, but it can certainly help her heart. Take care.So sorry to hear your wife is in pain.  My RA did not start to get under control until I started the biologic drugs.  Methotrexate has done so little for me.  I have read it only helps 40% of the people who take it alone.  RA can be extremely painful and when it's active it wakes you very early and the last place you want to be is laying in bed unable to get comfortable. I'm real sorry she hasn't been able to get any relief from the medications she's using. I'm sure your love and concern is a great comfort to her. I too have a very supportive spouse and I can tell your first hand what a dramatic difference that has made in my life.
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