Hi, I'm having another flare and I can't hardly move because it hurts so bad. Well my husband has RA and he tell's me that I don't know what pain is and that I need to be in his shoes. He told me that I needed to get up and move around or I was never going to feel better. I have tried to explain to him what Lupus and Fibromyalgia is ,I've even printed info out for him to read and he still don't give me any support and thinks that getting up moving around will fix my problem. Does anyone know how I can get him to understand what Lupus and Fibromyalgia is?
"Hello members i've spoken with JoJo personally and given my advice....she needs different out looks from members to help her, as this would be deeply appreciated"
Thank you Terri :) xxx
Actually you should get up and move around in spite of the pain- movement will ease the pain some altho it won't take all your pain away- it will help. Not sure what meds you are on but something to help with these rough spots would be a blessing for you. One of our toughest jobs to do is to learn to cope with these unpredictable illnesses and to allow ourselves some quality of life in spite of the illness And yes most people don't understand- another of our burdens
I’m sorry you are in so much pain right now. I remember feeling like that when I was first diagnosed. I would cry out of the blue from the constant, never-ending pain. It makes those around you feel helpless and yes, at times frustrated. Men are used to “fixing” stuff and get frustrated when they can’t (like your lupus and pain). Add being sick themselves like your husband and I can see why he is feeling and saying the things he does. He isn’t walking in your shoes and you aren’t walking in his shoes, but that’s no reason to be inconsiderate. You are both hurting. This is a tough situation to be in for both of you. Maybe you could have him read some of our discussions on here about the pain we feel. Maybe he can join a RA support group to vent his frustrations and get the support and validation to his pain that he is seeking? Sorry if this seems like bad advice in any way. Just trying to help. By the way, my cousin was diagnosed with lupus for a few years then her doc switched it to RA instead. Pain is pain no matter which condition you have. To have this acknowledged and accepted by our spouse/loved ones feels wonderful. As far as getting up and moving around goes, you do what you can when you can. There used to be times when getting up and moving around was impossible for me. I once spent a whole month in bed because the pain was so bad I couldn’t get up without my husbands help. He even had to help me shower and brush my teeth during this time. It does ease up, though. I suggest when you get these breaks from the intense pain you be active any way you can. Any movement will do whether it’s going for a walk or cleaning the house. Just take it slow and listen to your body because you don’t want to make a flare worse.
Where he has RA, I'm surprised and disappointed that he is not more supportive and understanding.
Hello Nancy,
I told JoJo exactly the same...selfish or what and yes we do need to move about like poobie said but we do have quite a few members on the sight who can hardly move with the aspects of how Lupus as affected them :) xxx
Nancy said:
Where he has RA, I'm surprised and disappointed that he is not more supportive and understanding.
Thanks Poobie for your advice. I will try to get up and move around alot more, it's just when I'm in a flare it hurts so bad that I just want to tense up. I don't handle pain very well and it's going to take some time getting use to.
poobie said:
Actually you should get up and move around in spite of the pain- movement will ease the pain some altho it won't take all your pain away- it will help. Not sure what meds you are on but something to help with these rough spots would be a blessing for you. One of our toughest jobs to do is to learn to cope with these unpredictable illnesses and to allow ourselves some quality of life in spite of the illness And yes most people don't understand- another of our burdens
Thanks, you've really explained alot. If you don't mind I would like to ask you another question. With Lupus, how exactly do you cause a flare? I mean is it over working the muscles or does it really matter?
Keepkeepinon said:
I'm sorry you are in so much pain right now. I remember feeling like that when I was first diagnosed. I would cry out of the blue from the constant, never-ending pain. It makes those around you feel helpless and yes, at times frustrated. Men are used to "fixing" stuff and get frustrated when they can't (like your lupus and pain). Add being sick themselves like your husband and I can see why he is feeling and saying the things he does. He isn't walking in your shoes and you aren't walking in his shoes, but that's no reason to be inconsiderate. You are both hurting. This is a tough situation to be in for both of you. Maybe you could have him read some of our discussions on here about the pain we feel. Maybe he can join a RA support group to vent his frustrations and get the support and validation to his pain that he is seeking? Sorry if this seems like bad advice in any way. Just trying to help. By the way, my cousin was diagnosed with lupus for a few years then her doc switched it to RA instead. Pain is pain no matter which condition you have. To have this acknowledged and accepted by our spouse/loved ones feels wonderful. As far as getting up and moving around goes, you do what you can when you can. There used to be times when getting up and moving around was impossible for me. I once spent a whole month in bed because the pain was so bad I couldn't get up without my husbands help. He even had to help me shower and brush my teeth during this time. It does ease up, though. I suggest when you get these breaks from the intense pain you be active any way you can. Any movement will do whether it's going for a walk or cleaning the house. Just take it slow and listen to your body because you don't want to make a flare worse.
For me personally, it’s not listening to my body when I feel a flare coming on. In my case I get warning signs like for instance a fever. My fevers start coming and going throughout the day and if I ignore it my symptoms become worse and they become consistent. It’ll progress to very bad headaches that won’t go away along with bad achiness and very bad brain fog and blurry vision. I quit working 5 months ago because I wasn’t getting any relief from my symptoms due to stress from working and my responsibilities at home of having a family to take care of with no help or cooperation from them. It was either give up lupus, my family, or my job. Lupus doesn’t want to part with me and I couldn’t part with my family, so that meant good-bye to my job. Since I stopped working I’m now able to rest when I need to, take a breather, do nothing when I need to. I used to have to “keep going” at work despite my daily fevers and horrible pain. I felt like I had the flu everyday. I had too much pressure and stress coming at me from all angles. My boss and co-workers didn’t understand why my work was suffering because I look healthy. Being able to eliminate that 1/3rd of stress from my life has given me more good days than bad. Before they were all bad because I couldn’t slow down. For those with lupus you can’t push yourself when you NEED to rest. Our bodies are no longer “normal”. We have to adjust and each find our own unique balance. As the years go by you’ll become more and more familiar with how this disease affects your particular body and what triggers a flare or makes your symptoms worsen. Here is a link with some good tips. http://lupus.about.com/od/flareswarningsignsandp/p/WellTipsRM.htm
JoJo8 said:
Thanks, you've really explained alot. If you don't mind I would like to ask you another question. With Lupus, how exactly do you cause a flare? I mean is it over working the muscles or does it really matter?
JoJo,
I agree with many of the responses so far. Many of the Lupus sufferers have joint pain and limited movement (many of the same symptoms of RA) so I am a bit confused with his behavior. However, even with healthy couples, if you have ever noticed when a man gets a "cold" he's dying, but when a woman gets a cold she has the "sniffles". Sorry, guys but sometimes the truth hurts :). I would suggest that you take him with you to your next appt with your Rheumotologist (I do hope you are seeing one) and have him/her explain exactly what the symptoms of both diseases can be.
I would also join the Fibromyalgia group which can be clicked on to the right of this section. That is a difficult one as you feel as if every muscle has been beaten by Muhammad Ali. There are 2 meds though that are helpful just for this. Lyrica & Cymbalta and I would ask if they might be an option. They may not be but it doesn't hurt to ask.
Lupus is a little harder to explain because it rarely affects 2 patients the same. I don't have as much pain or swelling in my joints as some, but more problems with my organs than some.
If he would be willing perhaps you could do some research on the subject and the 2 of you could agree to allow the other to speak without interruption. I also agree that he may feel frustrated because he can't fix it. To say "you don't know pain" is just insensitive because we all know that you do. Probably every bit as much or more as he does, but there is a reason God gave women the ability to give birth and not men :).
I also think you should move around as much as you can. It really will help you more than lying still. Muscles not used will atrophy and then become even more painful when you do need to use them. Perhaps, start by just getting dressed each day. That's what I did. Then I made the bed, then I cleaned the bathroom sinks...they all seem like little things but I got a rolling cart to store my cleaning supplies and sometimes I use it as a walker.
And as keepkeepinon said, listen to your body. Be strong when you explain to him that you MUST rest when you NEED to rest. Your body will tell you.
Sorry this drug on so long, but so many members have partners that don't understand Lupus. Frankly we have so many members that don't understand it so it is difficult to explain.
You have rec'd a lot of good advice and I do hope some of it helps. There is a lot of information if he is willing to listen.
Best of luck,
DeAnne
Hello JoJo,
Keepkeepinon and DeAnne have given you excellent advice on how to handle things...i have Muscle Atrophy bad, lack of circulation through the legs because of DVT causing this then buritis of the toes and ankles where they crack and like DeAnne organ involvement but i still have to move because like DeAnne said about Muscle Atrophy...the muscles get weak and it's harder to move and if your joints stiffen then you'll get more in a mess.
Move about slowly and sit when pain gets to much this is how we deal with it and regarding doing anything take your time pace slowly and rest in between, over doing issues causes more pain besides flares to occur also.
Love Terri :)
I'm sorry you're in such a bad flare. I would think your husband would be a little more understanding since he knows what joint pain and aches can be like. It really helped my husband understand what i was going through and what lupus is when we read The Lupus Book by Daniel Wallace together. Sometimes getting up and moving can help us from getting so stiff, but at the same time it can be fatiguing and wear us out. It's a delicate balance. Praying for you to get out of this flare quickly and for your husband to realize what lupus is and how much you're suffering. Men are so hard headed!
I am sorry about your flare. When I was first trying to explain to my family about how I felt with the pain, malaise, and fatigue I used to wish that I had a super power that allowed me to touch someone and then they could feel what I feel. One of the difficulties with having an "invisible" illness is that we often don't look sick even though we feel terrible. I think that using the support group as you have is one step to help in these situations. I also agree that reading about Lupus together and just talking about how you feel might help. Hang in there.
JoJo,
I do hope today is a better day. I also hope some of the advice was helpful and your husband was willing to listen. Because RA can be so closely related and the RA titer can actually be an indicator, you may put it to him as you are each fighting your diseases as a team. With similar symptoms maybe you can find things you can do together to ease the pain. Nothing beats a couples bath :).
XOXO,
DeAnne
DeAnne,
Love the saying (Nothing beats a couples bath) and i do hope JoJo's hubby can work with her because any fom of arthritis can be crippling and painful as we both know.
Love Terri xxx