My partner doesn't understand my symptoms from RA

[leeniebeanie726]

I have been pretty down on myself lately, I've been living with my ex husband since a year after our divorce. I don't know if he's doing this out of spite , or if he doesn't really understand my symptoms from RA. Lately I've been extremely exhausted, to the point I'd sleep the entire day away , I feel weak , no ambition to do anything. Then out of nowhere I have energy, waking up at a decent hour, getting much needed things done . I've been going through this my entire life , even before I was diagnosed with RA in 07. He upsets me so much when he tells me I have to push myself to do certain things, it's to the point , I'm depressed, and I have been considering asking my Dr to put me in assisted living. There is nothing I can do when I am feeling that bad , and he doesn't understand, by pushing myself , I may make it worse for myself. Does anyone have any advice in how I can deal with this situation?

[ShannonMFG]

We cannot "push" ourselves. We must pace ourselves. Those that do not suffer our disease DO NOT UNDERSTAND. If you can afford assisted living, do it. Getting yourself on a proper cycle/routine will help with fatigue. Best wishes and keep fighting!

[Hidden]

Oh hun, don't let anyone who doesn't have RA tell you to push yourself through the pain and exhaustion. You are not in a good emotional place right now. It is never a good thing to live with an ex. I'm assuming you are still under the same roof because of money? Please go to your doctor and explain your situation. Maybe your doctor can get you intouch with a social worker who deals with disability and can heip you find a place you can afford. There are so many options out there. You are not alone.

You seem so depressed that it may be hard to know what to do. Please reach out to your doctor. You deserve to be happy.

Take care

Sue

[Amy_Lee in reply to Hidden]

Suzannedale,

I am so touch and emotional with the way you wrote. I am in similar situation like ShannonMFG. My ex doesn't want to move out though that was the deal in our divorce. When I was diagnosed with RA, I collapsed and could not prepare any food for myself, he walked in and out ignoring my suffering. I was all alone because my kids were/are still in colleges outside. I was lucky to have my friends to send me food. I could only eat them fresh the day when the food came and left the balance on the table because I could not open the door of the fridge to keep them inside. I am from Malaysia, a very hot country around. Food can be spoilt easily if leave outside the fridge.

My jaw was in great pain when I ate then, so I only chose to eat soft and watery food. I could not butter my bread because I could not open the top. I could not make a cup of tea for myself because I could not open the container.

Life was miserable and I was in great pain. I was lucky again when my daughter came back after 3 weeks to take care of me for 10 months before she went to work again.

[leeniebeanie726 in reply to Amy_Lee]

Are you taking any treatment for your RA? I had to come off my immunosuppressive medications for surgery in 2014 , the recovery from surgery was mild compared to the terrible flare I had . I couldn't walk , open doors, do anything. I had absolutely no use of my hands , and they swelled up like boxing gloves. Thankfully my rheumatologist put me back on my my methotrexate, and Xeljanz, but it took about three months to start feeling better again. I pray 🙏🏻 you are taking medication for your RA, you should not have to be going through all of that pain, I pray 🙏🏻 you can get the help you need. Be well

[Amy_Lee in reply to leeniebeanie726]

I am in remission now and I am still taking the methotrexate and Arava right now. The doctor said she will monitor my condition closely to ensure my condition is stable and no flare up for another 6 months then she will consider to reduce the dosage slowly.

I am basically very much back to normal. I believe that it was the result of getting the treatment early and follow instruction closely. I exercise every morning without fail.

[Hidden in reply to Amy_Lee]

Amy Lee

I am so upset at how you were treated by your ex. I just don't understand how people who once shared their lives together and raised children together could be so cruel.

You raised a considerate loving daughter, she obviously takes after her mom. <3

[Amy_Lee in reply to Hidden]

suzannedale,

The problem was he was all on his own since day one. He chose to enjoy his own life all the time hence led to my decision to divorce him. What is the point to have someone who care nothing about the family, the kids and I? Therefore it would be better I led the kids on my own and my way. I chose to explain to my kids the right and wrong without hiding facts away. The reason being I did not want them to follow his wrong to suffer in future.

For him to ignore me during my suffering was just normal to me because he was always like that, so I was very used to it. But then I started to know who really care and concern about me. A few of my friends and colleagues sent food to my house while I was not able to do anything on my own.

When I went back to work, I was still in great pain and in need of great helps around, my bosses and colleagues took good care of me to help me around. My direct superior prepared soft food for my lunch everyday for months so I did not have to worry about going out for lunch while I could not turn and drive as normal.

My daughter was graduated in USA, she was working there for a year before she told me that she missed home and wanted to come back. I told her just do what she felt right and moved on.

She was so happy and kept the school informed of her resignation and booked a flight home 7 months down the road after the school term. I happened to be diagnosed just a months before she came home. I suffered all alone for the 3 weeks while I was at my peak of suffering and I collapsed.

Yes, she took good care of me for 10 months and I was very very lucky to have her home at the most critical period.

My eldest son is still in USA for his PhD program. My youngest son is in his 3rd years now in Taiwan for his medical study. My daughter is the second in line and she decided not to continue her Master after her graduation. She said that she had enough of study and very tired of it. 3 of them work very hard in colleges to complete and continue their study and I am very proud of them.

Life is indeed great though I am a RA patient!

[Baileysmom]

Hi There..Im sorry to hear you have an ex husband not understanding or being empathic. RA is an auto immune disease and one of the most common symptom associated with pain is fatigue. Would he be willing to go to doctor appointment with you? Maybe if he heard this from a medical professional he might become more understanding. I've been married 33 yrs. and my husband and I have to constantly keep our communication open and up front. I've brought him with me to countless dr. Appts. And we also attended an RA support group sponsored by the arthritis foundation. Ask her dr. If they're are any in your area. Good luck.

[CherylDV]

I agree with suzannedale and if possible ask your ex to go with you to the rheumatologist and have the doc tell him about your limitations and what happens when you push past them.

[leeniebeanie726]

Thank you so much everyone for the encouraging words, he has been with me numerous times at my rheumatologist appointments, he was a great support system for the longest time, but now I feel like a burden with him. I don't think he understands what I'm truly going through . This is one of the reasons our relationship is not working out.

[Amy_Lee]

Hi leeniebeanie726,

Those who have not had this disease will never feel how we feel. You are lucky to have your ex around to support you though he cannot understand your situation. I believe only we can help ourselves and no one else can help us.

When I was unable to sit on the floor and squat down, I requested my daughter to show me how to do that. She could not understand why I could not do that anymore and she repeatedly said that it was easy and just sat down and squat down. After a few rounds, I decided to do it without any demo because she could not understand my suffering. I tried to keep myself in the sofa and slide down and tried so hard to bend my knees and got frustrated finally. Anyhow, after many rounds of trying, I did it and I sat on my calf everyday in the morning and night to ensure my knees remembered how to bend. Ever since, I can sit on the floor and squat down.

[leeniebeanie726 in reply to Amy_Lee]

Well bless you that you we're able to even get down on the floor, I'd be there for hours , because of the pain . He went and got my folic acid , and B-12 , my very bad , I haven't taken folic acid with my methotrexate in about two months. And I honestly think not taking it is a big culprit of why I feel so awful. I really need to stay in check with all of my vitamins 😏 .

[Amy_Lee in reply to leeniebeanie726]

Seriously, you are not supposed to stop until your doctor tells you to do so. I am in remission now just because I follow instruction closely. Beside taking the medication, the doctor also instructed me to exercise daily, which I did.

My great recovery after 2 years is mainly because I trust that I will overcome the problem and surrender myself to the professional who knows best to handle my condition.

[leeniebeanie726 in reply to Amy_Lee]

My rheumatologist took me off of my methotrexate, and Xeljanz two weeks before my surgery, most Drs won't do surgery while taking the medication, because it supresses our immune system. But being off of it for about a month really took a toll on me physically, and I flared up quickly. I do have a question though, how do you know when your in remission? I take my treatment as ordered by my rheumatologist, and thank God the pain and stiffness is not as bad , but just last week I noticed my right hand giving me trouble. My thumb was completely swollen, and I have a huge bulge in my knuckle. It's not that bad now, but every so often I have issues with one joint or another giving me pain .

[Amy_Lee in reply to leeniebeanie726]

My blood test in 19 Apr said that my CRP was below 1 and ESR was 9. These readings are very much in the normal range now. During my last visit, my doctor checked my joints and asked me questions. I didn't really feel much stiffness in the morning any more and I could get out of bed easily and fast.

My body was/is fit and no more swelling in the last few visits so the doctor told me that my disease activities were low and she declared that I was in remission now but she would monitor my condition before she decided to reduce the dosage. She told me what next to expect when I went into remission.

Basically, I am very much normal and very active again since a few months back. I did a lot of community services around too.