Watching her suffer is killing me!

Does anyone have any advice or words of encouragement. . .my wife, Maggie, has been suffering with her fibro for 4 years now and watching her suffer is killing me. There is NOTHING I can do to alleviate her pain, I rub her trigger points, I massage her, I have researched and had her try all kinds of supplements, NOTHING WORKS!!! Is there anything I can do to make her feel better. Watching her suffer is ripping my heart out!!!! She is going to see her Rheumatologist in September. She is planning on asking him to take her out of work. She will go on NYS disability for 6 mos, then apply for SS Disability. She seems to feel much better when the stress of work is off of her.

Thanks Folks,
Chuck

Thanks for being there for her.
And for believing in her.

Chuck- There are some people that can work with fibro and others that can not. I had to stop work four years ago. The stress of work and the hours were killing me. I had no life! I was in bed when I wasn't working. I finally got very sick. My body wanted to Shute down. I finally applied for short term and long term insurance. I knew I couldn't go back, so I applied for social security too. In the mean time I was getting paid for long term insurance. Then when I got social security I still was able to continue my long term too. I was so thankful I paid into long term insurance. So if your wife has that opportunity to pick up long term it's worth it.

I was scared to stop work due to bills and mortgage. We were used to two incomes. To this day I am thankful I made the decision to stop work. I never lost a thing in possessions, but gained my health back. Our marriage even got better. It took me about a year to stable my health out. I still have pain and fatigue. I now can lay down anytime when I need too. It makes a world of difference.

I just wanted to share my story with you. Your wife might be like me and need to take a break from work. I know it was the best choice for me.

Post Edited (ak angel) : 8/21/2014 12:26:01 AM (GMT-6)

I am so glad she has you, I'm sure you help a lot more than you realize. Everyone here had so many great suggestions. She could also try gentle yoga, eating cherries or foods that give you energy, and maybe buying a comfortable pair of headphones. When I'm having a flare I like to listen to music to sort of calm me down and take my mind off it. Best of luck to both of you. Don't give up.

1. You can help keep stress out of her life (family drama or family not believing she is really sick).

2. Be her medical advocate. You can go to doctor's appointments with her. Make a list of the questions she wants answered, and, since she probably won't remember what the doctor said, you remember what he says or make notes. My daughter and I both have fibro (among other things), and we have been known to ask the doctor if we can record the visit on our cell phones so we can remember what the doc says.

3. Realize that she will have days when she seems "normal" and some days when she cannot function. Help her to find the place where she knows when to stop and conserve her energy. If she goes full-steam ahead one day, she may have to rest the next because she will be in pain. If you go on a trip, especially a long one, she may need to rest the day after you get there in order to enjoy the rest of the trip. If you're on a long trip and doing a lot of things, don't plan a rigid schedule. If she can't go, she'll feel guilty and you'll feel frustrated.

4. As mentioned before, you can help out with things around the house - simple cooking, vacuuming, washing and drying clothes, etc., if you can. I know it's hard to do after putting in a long work week. If you or your wife are sticklers for a clean house, realize that quality of life for her may mean the house suffers a little. It is more important fo her to be healthy than to have a perfectly clean house. If you can afford it, you may want to hire someone to come in to do the heavy cleaning every few weeks.

5. Know that fibro waxes and wanes. We all go through periods where we feel normal for a few days and then get hit with a lot of pain (at least I do). Fibro can be managed, but at this time, there isn't a cure.

Just being a loving husband and supporting your wife is probably one of the best things you can do for her. You're to be commended for coming here. Do encourage her to come, too, though.

I hope these suggestions help.

Hello and thank you for the great replies. I do all the cooking and my adult son and I do the cleaning. I am her health advocate and I try very hard to keep the everyday stress of home life out of her way. She does have a normal day occasionally, but her bad days are really horrible. Those are the days I really feel helpless. She even gets her meals in bed, so she can just rest if she wants. She has tried Savella, Cymbalta and seems to have the most luck with Neurontin, but it makes her sleepy. She has tried all of the supplements, Vit. D, Magnesium, Zinc, Hemp Oil caps, and on and on. She has also tried many sleep aides and none of them seem to help. She does occasionally combine 2 allergy pills with 3 Neurontin and another pill and that seems to knock her out, but then waking up is difficult. Yes, she does work as a Med Assnt., I am on disability and that is my immediate goal for Maggie. This is just so frustrating for me and for her. Oh and yes suspects her family do not really understand the severity of her illness, she worries that they think she is whining. I am also working on educating them. She goes to see her Rheumatologist in a few weeks, we are making getting her out of work the priority! Thanks for listening.

Chuck, (Yes, I still feel like the luckiest guy in the world because I have Maggie)

It sounds like you are both wonderful together.

It is huge help if Family understands limitations due to pain and fatigue. Yes, pain can go up and down some. I have only had a handful of days for the past 12 years that I was feeling less pain and almost on the edge of feeling normal. It is great when it happens.

I tried to stay in my job that I took pride in. I have one son. I was a working Mom. I always thought I was doing everything well. When not on vacation all I did was work, come home to work, cook, eat and sleep. We worked hard and played hard. You are truly a very understanding Husband. I am on LTIP and CPP Disability. I had to accept that with all that is happening inside me, I could no longer perform the duties of my position. You do need full support from your Doctors and sometimes a Lawyer to assist with claims.

On LTIP I have to always be trying to get better in hopes for a return to work. There, however, is no cure for the many things I am inflicted with.

My Husband does help now with laundry and shopping. I can't lift heavy stuff. He is still working and has one more year to retire. I will teach him a few more chores to not get bored in retirement. I am less demanding of myself and can except non perfection in my home.

I am sorry but I have not got my pain under control yet. I was on Lyrica for a couple years. I did not have bad symptoms from it. It was weight gain that was the decision to take me off. I did have withdrawal symptoms even though I came off slowly. I now know that it was likely masking nerve spasms as I would get little twinges at bedtime. Off Lyrica, nerve spasms in my back and behind began in full force at bedtime. Restless legs were crazy. I tried Melatonin for sleep and 5-HTP which claimed to help Fibro.

I was told my jaw pain is Neuralgia. I was put on Nortriptyline. My jaw pain is far from OK but the med has made the nerve spasms stop. It helps give me a deeper sleep. I used to have so much trouble with sleep. Insomnia many nights. Oddly, when working, the day after a night of total insomnia I was able to function OK at work. Never had 2 days running of insomnia. I no longer use melatonin or 5-HTP. I did think the 5-HTP might have helped some with pain. I also have Osteoarthritis. I use Pain creams. They help when muscles go out on me.

I do a Physiotherapy in a heated pool and I see a Registered Massage Therapist. He is trying to keep the muscles not so tight. The most relaxing massage I have had was in a high end hotel in Athens, Greece. A very good looking young man was such a good Masseuse. It was wonderful. I have tried acupuncture also. I thought it moves pain from one place to another.

I truly feel better when on vacation. Not out of all pain but it is so much easier.

I hope your wife finds something to be able to function better. I find I have to get up and walk some to shake off daytime fatigue. It takes me quite awhile to get moving in the morning though.

Take care.

Loring

Osteoarthritis in multiple joints, Fibromyalgia, Neuralgia, Chronic Daily Headaches, I.B., Hard of Hearing...

Post Edited (Loring) : 8/26/2014 1:30:50 PM (GMT-6)