Wife Recently Diagnosed with FM. How Can I Help?

[nanochalla]

Hello everyone and thank you for your time. This is a pretty long and rambling post, so I've bolded the major points to help make things a bit more digestible

I'm married to a wonderful woman who has been suffering with chronic pain for about three years after an auto collision. Yesterday, my wife was diagnosed with Fibromyalgia. We're truly lucky that we have doctors who have been supportive and willing to suggest and entertain any idea in the name of making her feel whole again.

Even though she was diagnosed quite recently, we've thought that she has had FM for some time, which seems to be a very common theme among those who are afflicted by it. We've been trying to do all that we can to manage her pain since the auto collision and ruling out treatments that haven't brought benefit. Currently, she has acupuncture sessions twice each week, which have been astounding for her, and she starts Cymbalta today. We're hoping that Cymbalta will give her some relief, even if it only helps with some of the depression and anxiety she's been experiencing. She tries to meditate regularly, does yoga on the days where she is feeling well enough to do so (and even on some of the days when she isn't), keeps a gratitude journal, and tries her best to keep up on some creative hobbies (which usually involve a good amount of physical activity, so they can be difficult).

I want to continue doing all that I can to support her. I'm looking into therapy and groups at the moment because I'd like to provide her more means to engage socially, especially since her pain often prevents her from leaving the house. However, those sessions typically come with a hefty price tag that we're having trouble affording. In the meantime, we're slowly learning a second language together and I try to take her out for coffee at least once a week so that she can have some social contact aside from me, our dog, and her doctors. Does anyone have any suggestions for how I can help to foster the social aspect of her life?

My wife is also very, very artistic. But the activities she once enjoyed, like painting and photography, are no longer a viable creative outlet for her because of the level of physical exertion required to do them. She also does some web development when she feels well enough, and she gets a lot of joy from using the creative problem solving skills that it requires. However, the need to sit in front of a computer for extended periods of time can also be difficult. She had the great idea of picking up something like embroidery that she can easily do while resting on the couch or in bed, which I think is great. Does anyone have any suggestions for how I can help to foster the artistic aspect of her life?

Lastly, my wife's family is very close-knit, but, in all honesty, they are not the most empathetic bunch. We also live very far away from them, and the lack of proximity is definitely not helping us at this point. Ultimately, she will need their support, but, partly because of Fibro Fog and partly because she is very modest, it is difficult for her to adequately convey her needs, her desires, and her struggles. Does anyone have any suggestions for how I can approach her family so that they can provide additional emotional support?

Once again, thank you for your time and energy.

 

[DK_engineer]

Can I just say that I am so impressed by how supportive you are of your wife? It is not easy to be a caregiver! And fibromyalgia is not an easy condition to understand.

As far as social activities go, it's probably best to choose one that she can skip easily if she needs to. Here are some ideas for what they are worth... a drop-in water exercise class (exercising in the water is very helpful for some, including me); a writing group or book club; a meditation group; a yoga class; dog training - there are a lot of fun activities you can do with your dog. Scent discrimination is probably one of the easiest for someone with fibro. And, of course, your wife is very welcome to socialize with us

A good artistic outlet kind of depends on where the pain is. If your wife is doing embroidery, she can probably do beadwork (you can do some really intricate stitches with beads), crochet or knitting. I also write fiction as a creative outlet. If typing is too painful, you can use voice recognition software.

Because fibromyalgia is difficult to understand (even when you the one experiencing it), it can take a while for family and friends to absorb the information you give them. As you and your wife learn about the condition you will go through a journey of incorporating it into your world view. Your friends and family will have to make a similar journey, but with less information and first hand experience, so you have to be patient with them. The more you learn about fibromyalgia, the more likely you will find an effective way to explain it to them.

I like to learn by reading, so I keep a list of books that have been recommended by others on this forum. I know you didn't ask for this, but I'm going to paste them on at the end... I hope this has been helpful to you!

"The First Year: Fibromyalgia" by Claudia Craig Marek and "The Complete Idiot's Guide to Fibromyalgia" are both good books to start with for an overview of fibro.

"How to Be Sick" by Toni Bernhard is more about the personal aspects of having a chronic disease like fibro.

"Breaking through the Fibro Fog" by Kevin White. He is a doctor and also does research on fibromyalgia. He has a good understanding of the more recent discoveries and does a good job explaining them. He also goes out of his way to address "fibromyalgia doubters" and discusses the prejudice against fibromyalgia.

"The Fibro Manual" by Ginevra Liptan. She is a doctor who got fibromyalgia in medical school. She has been treating fibromyalgia patients for years. This book is a summary of the knowledge from her personal experience and from treating others. It's also well written. It includes medical explanation but is more focused on what to do about fibromyalgia than Dr. White's book.

 

[diamond]

Hi and welcome,I too an very impressed with the support you are offering your wife...it will make a huge difference to her coping skills knowing how much you are on her side.

Family and friends do have great difficulty understanding.The books Dk recommends above may well help all of you understand both the physical and emotional aspects of living with fibro.

I have heard i am not sure where that instead of a present for Christmas or a birthday asking family members to read a book you give them on fibro as their gift to your wife.

Alternatively there is so much info on the web including various letters to normals (google) and the spoon theory that you could use the most appropriate to help explain to her family.

There are 3 in an old thread on this forum going back several months....i will try and find the thread later and do a seperate reply.

Lastly while i totally admire your dedication to finding ways for your wife to find support and activities to occupy her maybe dont push too many on her at once.

While i dont know how your wife is affected some of us suffer from a kind of mind overload....so sometimes we need to rest and to do nothing.

Like DK says your wife would also be very welcome here....we support each other and can dip in and out as and when we feel up to it rather than a pre booked occasion.

Good Luck...your wife may not be lucky to have fibro but she is very lucky to have you.

I hope more people come up with activity suggestions that help you.

 

[moe1959]

Wow! Had you thought of writeing a book to men.in your shoes?

 

[Heavenjumper]

As the others have said, I'm in awe of your support for your wife. It is so dedicated and beyond what most of us are used to, she is very lucky to have a partner so involved in her well being and quality of life. As far as finding things to do for hobbies, I recommend trying one thing at a time until she finds what she wants to stick with. Socializing can be a very difficult thing, and I personally socialize more online(here, Facebook, online games, etc) than in person because of the fatigue and pain creating obstacles to the latter. When it comes to approaching her family, you might want to set aside a time to talk to them with her not around so you can explain some of the points that she needs them to understand but doesn't feel comfortable explaining herself (modesty combined with fibro fog like you mentioned can create some topics to be a little overwhelming, even if she's just listening to you explain it to them). However, if any of that may even possibly cause stress when she finds out afterward, discuss it with her beforehand. If she wants to talk to them about it, you could help her make a list of things to bring up and ask them to bear with you and her through the explanation. I hope you and your wife find good answers and enjoy this forum long term. It's been a wonderful help, both for information and emotional support, to me.