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New Member

Date Joined Nov 2008
Total Posts : 3
   Posted 11/1/2008 12:16 PM (GMT -6)   
scool  I have Fibromyolgia, Lupus, RA and OA and I am struggling bad at work, and my husband does not understand the pain.  I took a very bad fall in June and I am still suffering.   My husband does not understand all the meds I have to take, HE JUST DOES NOT UNDERSTAND THE PAIN, can someone help with suggestions of websites to make him understand.   He now is questioning my doctor and I have alot of faith in her because I went through alot of docs who did not understand it at all.   This is not a new diagnosis I have had problems for about 15 years. about 3 yrs ago they said it was Lupus not fibro and now after me not responding to the Lupus meds and exams the doc feels it is fibro and Lupus  I have been married for 32 yrs. and he is really a good person, great dad and will make a wonderful poppop when it comes along but he is like a different person when it  COMES TO TALKING about MY HAVING FILE FOR DISABILITY, and the wait to get it.    I am 50 and I understand we are just getting to having a few extra bucks to camp, go to dinner more often and the full cable package but the last camping trip I had a heating pad in bed and outside, I have a heating pad at work to get through the day and I go in late quite often .   Help him understand it all.

Veteran Member

Date Joined Oct 2004
Total Posts : 2244
   Posted 11/1/2008 12:30 PM (GMT -6)   
(((( Painful )))) I am sorry you are going through this. It is very frustrating to have a diseased like lupus, fibro, etc and have to deal with people that do not understand. It is very hard for healthy people to understand what we go through everyday. It's hard for the them to wrap their head around the debilitating fatigue we experience, they only understand what they "feel" like when they are "tired". That is why I think it's so important to have some sort of support group, whether it be online like this wonder message board or a local support group meeting in your area.

I would also suggest if possible that your husband go with you on your next doctor appt. Maybe the doctor can explain the disease to him and make him understand the pain you deal with each day.

The best website I can tell you about to explain what it's like to live with lupus, fibro, ra it's called "The Spoon Theory"

I pray this helps you. Please keep us updated on how you are doing and feel free to ask more questions. Take care and God Bless

Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Hashimoto's, Celiac Disease, Raynaud's, Lupus and Sjogrens
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid, Folgard OS (B12), Darvocet (as needed) and magic mouthwash (for mouth sores)

Veteran Member

Date Joined Feb 2003
Total Posts : 5514
   Posted 11/1/2008 7:39 PM (GMT -6)   
Hi Painful
Welcome to the forum.  I'm so sorry your hubby doesn't get it.  It's frustrating beyond belief isn't it.  When I talked to my hubby about my pain issues, I tried to give him an example of pain that he's had.  So for instance, he gets "charlie horse" cramps in his calf muscles at night fairly often.  We all know how excrutiating that is!  So I told him, "Okay. Now imagine having that charlie-horse all day, every day, none stop. How would you feel?  Hopeless? Exhausted? Anxious? Depressed? Crazy?"  He just looked at me and nodded.  He got it.  Instantly.  I've never had to explain myself since.  Now he's overprotective of me :)
I have found that explaining it that way to anyone, really works.
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with Lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck) . Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, Cozaar, Zoloft, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus

Veteran Member

Date Joined Sep 2005
Total Posts : 2573
   Posted 11/1/2008 9:08 PM (GMT -6)   
I wonder if perhaps he might not need to read about how others with your problems feel. If you read my dx list you will see I am lacking only OA. I am on disability (SSI) and am only 31. I take more pills than my great grandparents used to combined. I can call and tell my rheumy the pain is worse and she will call in narcotic pain pills because she knows the pain I live with daily is unmanagable despite all the meds I take which you will also see the majority of listed in my signature though a few aren't listed down there.

I will explain how today went so maybe your husband will understand. Yesterday was holloween and I have 3 kids. I went trick or treating with them. We did trunk or treat at 2 churches and went up and down both sides of 2 blocks. I also had to ride 4 hours in the car yesterday and we had a busy morning because so much had to be done in one day. We got home close to midnight. I slept until 1:30 this afternoon but by 6 tonight I fell asleep again and only woke up 10 minutes ago. I will go to sleep again around 11 and sleep until noon tomorrow. That is what it will take for me to recover from 1 day of acting like I am normal. I suffer pain so bad that I wake up crying because it hurts so much. I do not think anyone can fully understand but I told my husband that he should recall how he felt when he had his kidney stone and imagine feeling that way 24/7 365 because that was the closest he could possibly come to feeling what I feel daily. I say that because natural labor was easier than the daily living with how I feel. Considering the fact I am younger than you are and am completely disabled by this I cannot imagine working and doing things like camping. I am sorry, but camping sounds like torture given the fact you suffer the same conditions I do.

If that paragraph I just wrote doesn't help him understand then it is time for him to meet your doctor. Also maybe he needs to have how dangerous these diseases can be and the kind of damage they do made perfectly clear.

He needs to know untreated lupus kills and even treated lupus can kill depending on what organs are involved. Untreated RA will warp your joints until they are immoble, fibromyalgia makes being hugged hurt so much you shy away from affection of any kind. I can say my husband understands but he doesn't like it because he can't fix it and he has told me that repeatedly. My husband says it is like trying to fight someone he can't see who is made of smoke and mirrors and who could take the person he loves most in the world if he doesn't fight. It made it very hard for him to accept what is wrong with me but once he accepted it he educated himself using things like THE LUPUS BOOK by Dr Wallace and other reliable sources so he could be as much help as possible.

If your husband insists on you working until retirement then there is a very good chance you will be completely unable to enjoy retirement when it finally comes. He needs to consider that fact.
Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, damaged periphrial nerves 2007, exema
Tx: plaquenil, Enbrel, Tramadol, Singulair, Skelaxin, Baby Asprin, Imuran, Prilosec, lasix, Evoxac, Celebrex, Darvocet when things get too bad, prednisone again, various vitamin/mineral supplements, now cellcept

Veteran Member

Date Joined Jan 2005
Total Posts : 8616
   Posted 11/1/2008 10:22 PM (GMT -6)   
((((((((((( painful ))))))))))

It really is hard for some men to accept our disabilities. If you understand how a man differs from a woman, it will help you understand him. If a man can't "fix" it . . . he would rather deny the problem. It is a matter of control. Having said that, I'm not making excuses for him . . . its just helpful to understand it from his vantage point.

"The Spoon Theory" . . . which Stacie provided a link too . . . is a really helpful "word picture" for folks who can't understand. We have an invisible disease . . . so it really IS hard to understand. They see us grind through a day without realizing what extreme effort it takes for us to function. Then if we did yesterday, they have a hard time understanding why we can't do it today too.

I am really blessed, in that it was my dear husband who discovered that "pacing" my energy was really beneficial. If I have a busy day today, he discovered that resting tomorrow is important. We actually found that I can accomplish more (in the long run) when I follow the "activity, rest, activity, rest" routine.

Are you fitting in frequent rest? I know its tough to fit in . . . but its the best way to get more done.

I sure hope that printing "The Spoon Theory" is helpful to him. I would also make sure to acknowledge and thank him for everything he does right. Make sure he knows how much you appreciate all of his effort too.

One great way to compliment him . . . is to allow him to overhear you talking to someone else about something you really appreciate. It will really affirm his efforts and encourage him to do more.

I hope you find lots of helpful info here at Healing Well.

Welcome to the forum!!


In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator

Regular Member

Date Joined Oct 2007
Total Posts : 185
   Posted 11/3/2008 5:03 AM (GMT -6)   
I understand your problem..
My husband is very much like yours...
I can't tell you the tears I've shed...and the hurt I've felt...
You have delt with the problem for a long time... I filed for Disability and was denied twice.. I didn't want to pursue it further...
I look healthy as a horse but my body is full of pain... but.... I have to say that at the moment, I'm doing much better....

Veteran Member

Date Joined Nov 2006
Total Posts : 1331
   Posted 11/3/2008 12:10 PM (GMT -6)   
Hi there,
Have you ever taken him to  your doctor appointments? This may help him to understand how much you hurt if a doctor is explaining it to him? I also have pain on a regular basis and my family doesn't always understand.  I'm so sorry you have to put up with this sad Or it could be a case of him not wanting to see you in pain..sometimes it is difficult to see our loved ones hurt.

Regular Member

Date Joined Aug 2007
Total Posts : 206
   Posted 11/5/2008 9:37 AM (GMT -6)   
I just recently started therapy to talk about my pain and feelings. It has helped me because men deal with things differently than women do. I understand him more. I think my hubby understands some of the time-but I don't need him to understand everything. It can be hard to talk about with him. I think he feels alot of anger and sadness when I'm in pain, and he's just not really good at expressing those feelings -unless he's intoxicated:) I've seen alot of good suggestions listed here. Definetly take him to your dr. appts if he hasn't been going already. It has helped my hubby to understand and also enable him to ask questions that he may be curious about. Two heads are better than one.
"Challenges make you discover things about yourself you never really knew."
SLE and Class II Lupus Nephritis

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