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help for my husband
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4myhubbyDuane posted:
HI. I'm new to this posting stuff and usually i wouldnt but i would like to help my husband as much as possible. He was diagnosed with RA in 2003. He's used metho, humuria, then Embrel for a year then Cimzia monthly.. I have watched my husband deterioate before my eyes. In addition to severe swollen ankles, knees, fingers and hands it's hard to walk upstairs, get out of chairs. He gets relief after soaking his ankles in warm to hot water and using heating packs on his joints. I still notice his swollen joints. I try not to do EVERYTHING for him but as days goes on he needs more assistance. I love him dearly. It's been real hard to watch him in pain.... saying all of that. Is there ANYTHING..ANYTHING I can do as a wife to help alleviate the pain and increase his mobility?
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blugixxer6 responded:
You sound like a great wife and he is blessed to have you. I wish I had a answer for you but I can only speak for myself patience and understanding mean so much and what you are doing and have done will mean more to him than you could ever imagine.
 
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bleeski responded:
God Bless You, 4myhubby.We all need someone like you in our corner.We sometimes forget how this disease is seen from the loved ones' eyes.It must be soo hard to watch us as we stumble along in life.Just keep doing what you're doing & keep up on blogs like this one.It gives great comfort to both patients and caregivers and in order to take care of him you must take care of you.I've new to it and already feel the hugs from fellow RA'ers.Hope to hear more from you in the future.
 
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mike201 responded:
You are a great supporter. What you describe about your husband fits my illness profile almost exactly. I doubt if I would still be here if it wasn't for my wife and her huge support. I am still in a mess, going on to my third biologic but here are a few thoughts to answer your question. First distraction - doing a few fun things together. Today we went to the cliff tops to watch the rolling waves. It was great. Second - make a few of his close friends really aware about his condition. Friends who call or visit are just wonderful. Third - help him manage his medication which at times can be confusing. Fourth - just be there. Fifth - try and be there for the really black dog days when depression sets in. Pain, a lack of sleep and depression are partners which seem to visit every now and then. If your husband wants to chat online, feel free to reach out. Mike from Australia!!
 
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4myhubbyDuane replied to blugixxer6's response:
thanks for those kind words. Sometimes its hard to have patience... I do understand for I have been diagnosed with a simular disease( in remission)... My main priority is for him to get proper treatment that will put HIM in remission.I hope he knows I AM here for him... will get rocky I suppose but I'm here
 
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4myhubbyDuane replied to mike201's response:
Thanks Mike201.. That sounds like GREAT idea... Keep him distracted with activites...but he's already set his heels in the flooring...He rarely goes out (due to pain and swelling) But we just been approved for a new biologic and hopefully this would help alot... He knows he wont be the same but if just most of the pain goes aways... I might see him smile more. I have told at least one of his closest friends who offered to take him to gym but Dr. says he's too inflammed for anykind of physical therapy so we'll wait to see how new meds work then try therapy. Hubby is very private person with not many friends and will not be happy if I told anyone else beside his close family members... Ive already told a few. They seem to have jumped on board with checking in more with him. Thanks so much for your suggestions. Ive got 2-5 covered. The hard part will be extra activities for him with so much pain..but I will try....thanks again... GOD BLESS
 
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4myhubbyDuane replied to bleeski's response:
And Bless You too...Thanks for your kind words..YEs it is hard to watch.. I dont want to make him feel useless so I'm learning to back off a little. He's a prideful private man and hope this blogging becomes even more helpful and in return hope i can helo someone tool. Received some great suggestions from Mike201
 
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RosyPosy responded:
I have suffered with RA for 11 years. It is in my toes, fingers, knees, hips, shoulders, elbows, right wrist and left jaw. I started doing Hot Yin Yoga in June of this year after a particularly terrible flare. This practice has been a life saver. I encourage anyone with RA to do it. I now do it everyday. The first 2 weeks were brutal, but I am able to sleep, walk, and play tennis since starting this practice. The only activity I was able to do prior to this was swim. I am also back to the most basic drugs (sulfasalazine and plaquinal) after having a very bad reaction to methotrexate. NOTHING helped me as much as this yoga practice. I am so thankful to have found it, I become emotional talking about it. My rheumatologist cannot appreciate how amazing my life has become after starting this practice. I can actually wear shoes again! I also get monthly foot massages at a place called Foot Logic. Heavenly.
Please get your husband to try Hot Yin. It is good for the mind and body. A gentle practice with enormous benefit.
 
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PollyRA responded:
I empithize with you I know my condition is difficult for my wife as well. A few months ago I put in a hot tub. Extra jets, high pressure pumps. If you have the space and can afford one it is highly recommended. The high presure water therapy combined with the 103F water relives the stifness and returns fredom of movment for several hours. Before betime helps me sleep well into the early hours. In addition to RA I also have Ploymyalgia. My arms, legs and large muscle group benefit form the hydro therapy. At 60 years old I was approved for Medical Marijauna. A few puffs on the pipe and the pain is gone for several hours. The Government actual has somethinn that helps that is not the big drug companies.
 
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LMB524 responded:
In am going to be 62 and have had RA for 32 years. It's hard for our love ones to watch us lose a little of ourselves everyday. You are doing the right things for your husband, but please if he seems angry, or is short with you its the losing independence that makes us crazy not what your doing.. Its hard for RA suffers to ask for help, especially if we were independent and did for others. Your kindness and at time silent support is appreciated much more than you will ever know. I would like to start an online support and counseling service, free of charge to help suffers and their support systems. If you would be interested or know anyone who would please respond to this reply. God Bless you both.
 
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TJP26 replied to LMB524's response:
Hi, I am new to this site. Thanks for all the information. My husband has just been diagnosed with RA, we are still waiting blood test results to pinpoint what form of RA. His initial x-rays were very good, so far no damange. I too am having a hard time seeing him in pain with these flare ups that just started about 6 weeks ago. He is a very strong man, both physically and mentally so for him to even admit he is not at par is difficult for him. He has always been a hard worker/ provider for our family. I am here for him no matter what happens with this prognosis. I am very concerned with the medication and what effects or other aliments that will bring on. We are both 50 yrs. old, married for 28 years. I still want us to grow old together. Any information from others in this situation is very helpful.
 
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Alex572012 replied to LMB524's response:
I would love to talk to you and your experience for such a long time.. what meds you have been on and what kind of journey you have been on... I was diagnosed with RA 4 months ago. It has been so hard and no one to talk to.. I have always been the one that everyone in my family came to talk to I have been the one that has been able to do for everyone... it is so hard for me to tell my family that I am in pain... I hate seeing them sad.. and concerned about me.. it has been a very hard 4 months for me. I am on Metho 20 mg right now.. and its not really working.. I am so fearful of all the other drugs that I have been reading about.. I would love for you to share your experience. Alex
 
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bleeski replied to PollyRA's response:
Your suggestion for a hot tub is a good one. (I haven't used the MJ so I don't know about that one). Do you or anyone else know if a hot tub can be claimed as a medical necessity on your tax return or through your insurance? We had one about ten years until it died and it helped immensely with the osteoarthritis. I would love to have one now for my RA but can't afford one.
 
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llt62 replied to Alex572012's response:
Hi, I am also new to this site. I was diagnosed with having lupus, in 1983. I awoke one morning with swollen joints, and alot of pain. The blood test showed that i had Lupus, but it also showed i had RA.. They are so much alike that the DR. didn't know for sure which one i actually had. I was very confused and scared. The thaught of having one of these, was bad enough, but having both. That really blew my mind. Well anyway they called it Rupus, and treated me with Plaquenil, and Prednisone. After 7 years they finialy determined it was RA. I have been offered every drug you can think of for this, and refused every one of them. I still take the Plaquenil 2 times a day and i am doing real good. I am 62 years old and yes, i have some pain and stiffness, but i stay active and refuse to be a ginney pig for all those drugs they try to push.
 
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millioncat responded:
I have RA for27 years. first 2years were horrible.i use enbrel and prednisone. i tried gold treatment methotrexate(upset my liver) keep trying different injections. All i can say is be patient with him. help when he needs it but don't overdo.i was and am still depressed. all my knees ,spine and hips are deteriotated where as no surgeon wants to replace anything. i have no bones structure left.i am 58 at this time. i don't give up. although somedays i want too. i plan a trip to Orlando with my daughter in 2 weeks. she will rent me a wheel chair but i am determined to go. good luck but keep trying medications and i also use alleve for my pain.


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