FIBRO, LUPUS, RA AND OA and help with husband understanding pain

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New Member

Date Joined Nov 2008
Total Posts : 3
   Posted 11/1/2008 11:38 AM (GMT -6)   
smurf  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.

Post Edited (painfullygoingsimple) : 11/1/2008 10:57:23 AM (GMT-6)

Green Grove
Veteran Member

Date Joined Oct 2008
Total Posts : 2424
   Posted 11/1/2008 11:45 AM (GMT -6)   
Hello :)

I don't know what to say to help you, except wish you the best of luck, and bid you welcome!!! There are some great mods and other people on here that will give you better advice than me based on their experiences that are greater than mine. Again welcome and God bless!!!

Dream as if you'll live forever. . . Live as if you will die today. . .
James Dean

Forum Moderator

Date Joined Apr 2005
Total Posts : 17053
   Posted 11/1/2008 11:48 AM (GMT -6)   

Painfully, welcome to the fibromyalgia forum.  It's really tough when loved ones don't understand or believe you.  At least you  have a doctor that is helping you.  Check out the Fibro 101 thread...the second thread on the forum.  There are links in there that may help you and also may help your husband understand this illness.  One link is called The Spoon Theory.  Here is a link to another great "explanation" about fibro.  This is called The Letter from Fibro.  I probably will be putting this in the Fibro 101 thread soon.

Also, check out the link, on the Fibro 101 thread, about malic acid/magnesium supplements.  They have helped me a lot with the pain and fatigue of fibro.  They don't work for everyone but this may help you.  Read about it and see what you think.

Meanwhile, I'm so glad you joined in.  I hope the information I gave you will help.  Hope to hear more from you soon.



Forum Moderator/ Fibromyalgia
Fibromyalgia, Crohn's Disease, Ostomy, Diabetes, Autoimmune Inner Ear Disease, Osteoporosis
God does not give us a spirit of fear, but of power and of love and of a sound mind.    2 Timothy 1:7

Veteran Member

Date Joined Aug 2007
Total Posts : 6067
   Posted 11/1/2008 1:30 PM (GMT -6)   
Hi Painfully and welcome to our family. You sure have a lot on your plate. It was very hard for my DH to accept fibro, he thought he had to find away to fix me and he got on my last nerve many times over it before I got him educated. Five years later he gets it as much as someone without fibro can get it. You know you can't understand something you don't feel and I would have never understood fibro before I got it. He is going through a hard time right now and is having fatigue for the first time in his life sadly cause I sure never wanted him to know what it feels like. So your DH may still be in denial about your health. Does he go to your doc apps with you??? Sometimes hearing it from someone else makes them believe this is real more than hearing it from us. Have him come on here and read some of the post and he may realize it's not only you that feels this way.
You know this isn't where I seen myself at the age of 58, all this started for me about 10 yrs ago. I have osteoarthritis in my hands and that is more painful than the fibro most days. But this is where we are at and plans change. We may never take the month long drive to see Alaska that we had been planning on for years but we can always fly up there and rent a car or take a cruise. Life doesn't have to stop cause of fibro you do sometimes have to change the way you do things in order to do them.
I really hope he understands this soon cause it does have impact on both of your lives. I say fibro came into our lives not just my life.
luv and hugs
Forum Moderator Fibromyalgia
Fibro,Sjogrens, Anxiety, Gastroparesis, IBS, Gastritis, Allergies, High Blood Pressure, Low Blood Sodium and Osteoarthritis
Amitriptyline, Celexa, Xanax, Synthroid, Zyrtec, Micardis, Spironalactone, Tylenol, Reglan, Lidoderm Patches and Tramadol
Co Q 10, Super B Complex, Extra B12, Multi vitamin

getting by
Forum Moderator

Date Joined Sep 2007
Total Posts : 40384
   Posted 11/1/2008 3:38 PM (GMT -6)   
Hi Panifully,

And welcome to the fibromyalgia forum. We are so happy that you have joined us.

As stated above, print him off some material to read. The fibro101 thread has a lot of information on it. I really hope that you can get him to understand how you feel. We are here to help you.

I hope that you have the most wonderful day.

Hugs, Karen
  Moderator-Depression and fibromyalgia
fibromyalgia, Chronic fatigue, depression,allergies

Regular Member

Date Joined Nov 2007
Total Posts : 130
   Posted 11/2/2008 2:04 AM (GMT -6)   
I totally understand how you feel.  I made a call to an attorney to ask how I could work and sign up for disability.  He said that I need to earn far less money than I do right now.  By the way I earn less then half of what I use to (I think my husband misses our confy income, as if I don't).  I recall the attorney saying, get my earnings down to $600 per month so that I can apply for disability as I continue working.  Last week I worked through I migrain because we are a small Doctors office with a small staff.  I litterally excused myself to throw up and pray that the imitrex would get me through it.  I was angry that I was forced to work through a migraine.  Thank goodness the migrain wasn't as bad as it could have been.
I was just about to start a topic of my own, titled... I'm mad at my husband, help me!  My husband and I have been married for six years now.  We have five teens between us and we are 40 years old.  A year ago in October I had to quit my job to figure out if I was going to die.  I was having every symptom listed for Fibro and some others that now get blamed on fibro.  I made really good money and had been at my job for seven plus years.  I made great money and I was having panic attacks, migraines and unexplainable pain that lasted beyond my doctors release.  I was diagnosed in December of 07 as having Fibro and Generalized Anxiety.  I was back to work on a part-time basis by February, because there was no other option.  Currently I'm up to 30 hours a week and my pain continues to increase, my migraines are increasing and my husband says I could never quit.  He wants me to file for disability, but will not hear of me quiting to get it.  It frustrates me, because I know that if he was hurting as I am, I would not feel as he does.  I know that 40 years old is too young to give up, but I feel that all I have to give is used up getting to work, making it through each day and that's it.  Everything else in my life is done with what ever I have left over.  This includes being happy, spending time with my kids, my relationship with my husband and I have not been able to find time to find an understanding Primary Doctor, I have been told that my anxiety is the main problem (Husband's convinced if I go to a Phsychologist, he/she will solve my issues).  I get home and if I am not helping with kids sports, homework, housework or making calls to obtain a good doctor, I'm desparate for sleep.
I wonder how many people work and how old they are.  I know that many here are so positive, but I also notice many are able to be at home.  I feel very upset that this is my life.  When I'm not working. I'm recovering to do it again the next day. 
I hope that you receive some help with your topic.  Last night I told my husband that I was ready to give the girls to thier father and leave him, because I am so tired of trying to live up to what he and the kids need.  I'm tired of hoping that he'll hear my cries for help.  Hell, let's sale things, give up stuff and find a way for me to improve my health so that we can all be better off. 
I'm so sorry that you are feeling as you do.  I truely do understand.
Fibromyalgia (DX'd Dec 07) ~ Generlized Anxiety ~ Migraines ~ IBS ~ Asthma ~ Allergies
Cymbalta   Topamax   Claritin   Tylenol   Ibuprophen

Terrie B
Regular Member

Date Joined Mar 2007
Total Posts : 90
   Posted 11/2/2008 4:52 PM (GMT -6)   
Hi guys~
I'm really sorry that you are having trouble with your husbands and your pain. I, like you, experience pain and fatigue as well as other symptoms associated with fibro. There's not a day that goes by that I'm not in a huge amount of pain. The symptoms that led me to the diagnosis only started a few months ago- two or three, I think. I've suffered with chronic back pain from an on the job injury for eleven years, so the symptoms could have started earlier, but I've been so wrapped up in the back stuff, I didn't realize what it was.
My husband hasn't been the most supportive person since I hurt my back. I just try to excuse his behavior as- he has a lot on his plate, or he doesn't really know how to be nurturing, etc. The truth is, it doesn't take much to comfort me when I'm miserable. If he would even ask me how I'm feeling or if I need some help, or how about a brief back rub? Instead, he gripes about the doctor bills, the pharmacy bills, the amount of medication I take, the weight I've gained, the activities I can't do anymore, the fact that our sex life is almost nonexistent. It's almost like he thinks that I enjoy being in the shape I'm in. I try to do more things to keep him in a good mood, but it kills me! I know that if the roles were reversed, I would never treat him the way he treats me. He practically called me a drug addict because of the meds I take and I've taken myself off of a few just to try to please him. I'm to the point right now that life isn't even worth it! I  would never do anything to harm myself, but if today was my last day alive I wouldn't care. The only thing that keeps me going is my 18 year old daughter that is a senior this year.  I want this to be the best year of her life so I push myself to do things I really can't do and try to hide the pain I'm feeling. How you can continue to love someone so much, that makes you fell so bad, is so confusing to me.

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