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Fiancee has fibro. I do not. What can I do, if anything, to help?

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Posted 11/1/2010 1:35 AM (GMT 0)
Hi guys and gals. I'm Todd and I'm worried/stressed/feel a bit useless.


My fiancee was diagnosed with fibromyalgia a few years ago, just before I met her. She has been on Cymbalta, which she described as hell, Lyrica and now most recently, Savella. Lyrica was okay for her but left her in a horrible fog and her rheum switched her to Savella around 12 weeks ago, give or take. Savella seemed to be working for a short while but now she is severely depressed and suffering from anxiety and all the pain is hitting as hard as ever, if not more so. I'm at a loss as to what it is that i can do to help, if anything? I try to do most chores and whatever I can around the house but are there any small things I should be looking for? Questions such as "How does diet effect fibro and what should and shouldn't I be buying at the store?" all pop into my mind. Please let me know if there is ANYTHING I can do to help. No matter how small. Also, I read somewhere that cognitive (sp?) therapy has been known to help. Does anyone have any experience with this and is it a good thing to suggest?

Thanks in advance,

Todd

Post Edited By Moderator (Chutz) : 10/31/2010 10:27:51 PM (GMT-6)

Posted 11/1/2010 2:29 AM (GMT 0)
Hi Coffee Black,

Welcome to our fibro family it is great that you support your fiancee the way you do she will be needing it with this disease. Anyway just wanted to welcome the two of you hope you stick around.

Stacy
Posted 11/1/2010 3:07 AM (GMT 0)
Hello Todd,

Well, from my point of view you are already doing the most important things you can, which are to believe her and to look for ways to help. So many people just don't. I love my husband dearly, but I swear, he could walk by a heavy box for 10 years without thinking to move it! (slight exaggeration.)

I'm afraid I don't know anything about cognitive therapy.

Welcome to the forum.

Debbie
Posted 11/1/2010 4:43 AM (GMT 0)
Hi Todd!

And welcome to the Fibro Family. You're a wonderful gentleman to be out searching for help for your bride-to-be. I agree with comments above...just stick with her and let her know you are beside her no matter what. I would imagine she's frightened about her future, her marriage to you, having a family...etc.

After I was divorced I was dating a friend I had known for some time as a 'friend of our family'. When it appeared we were getting more and more serious I began to worry about his reaction to my health issues. He knew about all of the problems but it's a huge undertaking to marry someone who comes with health problems. But as most people know, love goes way deeper than someone's physical condition or makeup and I'm happy to report that my 'best friend' and I just celebrated our 17th anniversary. He's gone to many doctor appointments with me and tried every avenue to understand what I am battling day to day. That's #1 help in my book.

But about the medical side of fibro...she might consider a second opinion and here's the reason why I would consider that. The medications she's tried are all of the 'latest' and 'newest' ones that the drug companies are pushing. I would want someone who was a lot more creative in treating my fibromyalgia and the chronic pain that comes with it.

The one thing I've heard from doctors and read about online of the new medications is..."if" they are effective they do have some mighty amazing side effects. If you are one who isn't bothered by them that's great! But the kicker is that the longest people seem to get any pain relief from them is just short of 2 years and often less. Then they just don't work any more. There are exceptions to this, of course.

There are no cures for fibro, as I'm sure you realize, but there is good treatment. But the treatments are so very different for each and every case of fibro. I would guess that among 200-300 people with fibromyalgia that no two people have the same regime that helps ease their pain. This is one of the reasons this is such an insidious disorder.

Do consider looking into taking her to the nearest university/teaching hospital. They benefit the patient in 3 major ways that differ from regular medical professionals. First, they are training the newest generation of doctors. Second they are on the leading edge of research which includes trials and studies. And third, they actually see patients and deal with difficult conditions...like fibromyalgia. Below is a link where you can find a list of these facilities around the globe. This list isn't not exclusive but it's a start. Even if you're a long distance from one of these, it would be well worth the time and effort to get an appointment and see a specialist in fibro. This is 'your' lives and your future. Do whatever you can to make it the best is can be.

Warm hugs,
Chutz

en.wikipedia.org/wiki/List_of_university_hospitals
Posted 11/1/2010 6:13 AM (GMT 0)
First welcome, second congrats for wanting to understand the pain and frustration we feel enduring this painful condition.  I find the more stressed I am the worse my symptoms. I am currently achy head to toe and trying some of the same meds without much success.  I enjoy a nice warm bath (anything warm) and very gentle stretches.  Although it might hurt a little, she might want to try a heating pad with gentle massage of the achy muscles. She will feel better later when the muscle releases from its tight knot.  Today I tried a bee string!  I actually let my husband take a honey bee from the hive and purposely sting the back of my neck. According to some literature, if you sting the tender points at least twice a week, in about 3 months the pains will get better without the side effects of the meds.  I have been putting it off for a year, finally gave in because I can't walk anymore without constant pain. I will let you know how it works!

 

The most important part is whatever helps her support her. Don't make her feel like its in her head or that therapy or a single treatment will help.  I am learning that my inability to walk or stretch did a huge dis-service to my muscles and now I am trying to get back my strength to even open the front door. It will take a number of things to combat the pain, and if the dishes need doing or the laundry needs folding its important to help out (I hired a cleaning service...my husband doesn't like cleaning) as these things can be a bit overwhelming when you can't remember where you put the broom..lol..  Stay positive, go for walks, find an activity that makes her smile/laugh (low energy ones work).  I tried cortisone shots from Feb - April with much success, unfortunately my insurance only covers three shots a year.

 

Let her know others know of her struggle and to reach out for help it she needs it. cool

Posted 11/1/2010 2:12 PM (GMT 0)
 

   Hello Todd

   I just want to commend you for concern and jumping right in and being her knight in shining armor!! I just discussed this topic yesterday i was asking about husbands that are domestic and help alot.  I have been with my husband for 10 yrs. total married 8 of the 10,then two years into our marriage i was struck w/ fibro/depression with a bang.

At first he was very helpful, but as i got worse over the years he did loose a little hope that i was never going to come out of my fog!! Todd stick by her 100% if you love her enough to marry her then hang in there! I truly love the fact that you are doing all you can to be their for her. I was always told by doctors to stop all processed foods and eat all fresh this would help build her energy and strength, so please help her eat lots of fruit and vegetables!!! If either of you need to talk please continue to post!!

Good luck with the marriage and life!!

Carrie/fibrodepression mom

 

Posted 11/1/2010 2:41 PM (GMT 0)
Hi Todd, welcome to the forum! It is great that you are doing what you can to
be supportive of your fiancee.

Please take the time to check out fibro 101, it is the first thread on the top of
page one. You will find plenty of helpful info there for someone with fibro.

One of the best things that you can do for your fiancee is encourage her to be
proactive...taking the time to take care of herself even when she feels it is
inconvenient. My hubby has helped me find the right balance. It is very important
to exercise. Inactivity is the worst thing for a fibromite. Finding time each day
to exercise and relax is vital for me. I walk up to three miles daily now. A year
ago...something I would of thought impossible....the differance...my mindset.
I'm more positive...when you believe you start believing you can do something,
your goals are easier to achieve!

Encourage her to find activities she enjoys...it helps distract the pain. If she
is feeling down...offer to take her out, sometimes a change of scenery can help
brighten a mood. Be there to listen...knowing someone cares makes a huge
differance.

Todd, your fiancee is lucky to have you by her side. wishing both of you the
best of luck!!! You might want to encourage her to join the forim. It does help
to know others understand :)

hugs, Robin
Posted 11/1/2010 5:34 PM (GMT 0)
Hi Todd,

I just joined today and felt I had to comment on your post. My husband and I have a very similar situation as you and your fiance. I finally got the diagnosis of Fibromyalgia 6 months before we started dating. We were friends before but he only has known me since the diagnosis. In some ways I think I'm very lucky that he only knows this "me", not the "me" from before I got sick. I think it is a little hard on my family and friends sometimes to see the difference and what Fibromyalgia has caused. But this weekend we will be celebrating our 1 year anniversary and it has been a very tough year for both of us re: the Fibro. He stood by me while I weaned off my medicine, through the swine flu and now through a very rough last few months having a horrible time with the pain, anxiety and all the junk that comes with the Fibro. We both realize more now than ever that this is going to be a constant uphill battle and I know I wouldn't be able to do it without my husband by my side and I am sure your fiance appreciates everything you do for her as well.

I think the fact that you're reaching out and looking into options is great! Your fiance might not be ready for it yet or hasn't thought about trying to connect with other sufferers. I've read these posts a bunch of times, but only joined today. I think lately I've realized the importance of connecting with other people that can relate to what I'm going through. I recently went through a pain management program for those who suffer from Chronic Pain. While I was disappointed because I was the only one with Fibromyalgia in my group, it didn't really make a difference in the long run. It helped me open up about my feelings and helped me better communicate with my family and friends about what I'm going through. A HUGE component of the program was cognitive therapy. At the time I don't think I appreciated it as much, but I realize the importance of it and am considering continuing that aspect of it.

You're doing all the right things, helping out where you can but I also understand the feeling of being helpless as well. My husband and I talk about this ALL of the time. He knows that it's hard on him but thinks that it's no where near as hard as it is for me, and I constantly think the opposite. I think it must be so hard for him to deal with me, especially when things are bad! But just being there and being supportive is the best thing you can do. Pushing us to be active is what we need even though we may not listen a lot and doing a lot of the background work re: diets, therapy, medications, etc. is sometimes necessary because we're not always thinking clearly :)

Good luck to you! Wishing you both a beautiful wonderful life together!
Posted 11/6/2010 3:58 AM (GMT 0)
Without being contentious, I would say that it's far better to ask her what she needs then to give her advice. She's been living with this for longer than she's even known what to call it, and she has almost certainly gotten tons of well-meaning advice. I'm sure she's done her reading and has tried a lot.

My best advice to you is to ask what she needs, how she's doing, if she feels up to something, etc. Make it a normal factor that you talk about, and she will slowly stop feeling bad about it being a determining factor for activities in your lives together.

For example, when we decide what we're having for dinner, we take into effect what's in the fridge/pantry, what sounds good, when we want to eat, just like everyone else. But, we also decide whether I feel up to being on my feet to cook, whether I'm feeling sick to my stomach and want something light or feeling run down and wanting some hearty comfort food, whether I was to change into pajamas and not leave the house (or sometimes if he does!), or whether we just want to go out for dinner.

The important part is to make her feel like she can ask for what she needs, because we all need different things. I need to be seated in a restaurant in a seat that has a back. So, the love of my life requests a booth instead of a high table with bar stools. He gets down the bowls from the top shelf. He washes my hair when my arms ache. We waits the 2 hours between when he wakes up on Saturday and when I do so we can have breakfast together. It's all about having open dialog and understanding, so she feels like she can ask you for help when she needs it, without feeling guilty or weak for asking.

I can't tell you how important it has been that my better half views this as something that we just deal with, and that he's never angry or disappointed with ME, just the fibro.
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