Wife just diagnosed with Fibro - Still looking for answers.

Hi All,

This is my first post on this forum as my wife was just been diagnosed with Fibromyalgia.
I must say the diagnosis has been both a relief and at the same time very stressful.

The relief has come in the fact that we finally have a name to the problem. When she was diagnosed we went through a list of symptons and were just amazed at how accurate it was. For so many years she seemed to have had something new, i think the pinnacle came when she kept complaining about pins and needles and i just told her she was going crazy (how wrong i was!).

So the good news after finally seeing 20 doctors and spending endless money at physio, chiros.etc we were finally referred to a rheumatologist who diagnosed it quite quickly. He has explained quite a lot but there is so much to the condition that we just didn't have time to consider asking everything. He has got her on some tablets called Lyrica (75mg) and another strong pain killer which seemed to work wonders for 2 days. But then she started to get worse and had trouble breathing. She then was put to a lower dosage of 25mg and taken of the pain killer but the low dosage seemed to useless so now she is back on 75mg but not taking the pain killer in the hopes that is what she reacted poorly to.

Apart from this though he has recommended she starts water aerboics 3-4 times a week and may need to continue this for the rest of her life and also has her on Vitamin D as hers was extremely low.

I guess the biggest stress for us has been how things have got so much worse over the past year. When i met my wife she was a gym junkie, running on 45 degree treadmill at high speed for 30 minutes but the other day her back was in ruins because she walked through Ikea for 2 hours! Some things just do not make sense which is why i am hoping for some answers from people who have dealt with this first hand. Sorry if this becomes a long post (I have also read fibro 101 which had some great stuff )

How could you explain why things have gotten worse more recently? Does it get worse with age? Or could she have say a bulged disc in her back that is being amplified by 100 because of the Fibro?

Is anyone else using Lyrica and did they experience any side effects?

Do people recommend any other supplements she should be trying along with the vitamin D?

I know swimming has been recommenced by her rheumatologist but its very difficult to find the time in between getting up at 6.30am and home at 6pm from work. Then having to rest among all that! Ideally the best time for her to exercise is on her lunch break but we have no pool close by in the city. She does however have a gym so my question is are there better alternatives to swimming that people have had success with? Yoga classes for example?

And really any other advice people can give? Things that work for them.etc?

I am really happy i found this forum. It's already been such a big help and just assured her she is not alone. So thank you :)

Glad you are doing research to help your wife..

You can also do searches here by key words.. know there is lotsa info on Lyrica. I have spent many hours reading old threads on this forum..

Some of us include meds & conditions in our signatures.

Your wife may have other health issues & those symptoms should be addressed, not just dismissed as 'fibro'.

Water aerobics in a warm (about 90° is ideal for me) are great.. a physical therapist who is experienced w/fibro (or even has the condition, like mine do) can be very helpful.

But most of all, believe what your wife tells you..
do NOT try to find logic .

For example, sometimes I can do a 'normal' activity, say going to grocery store.. other times I can barely crawl out of my bed..
may be from fatigue, may be from pain
& my brain will be tired, cannot think in complete sentences, often referred to as fibro fog.

Believe her..
You can find several threads on here about not being supported by family & friends.. is heartbreaking to be in pain, confused & called a liar.

Keep looking until you find professionals who believe her too.. there are treatments that will help with pain but may take time to find the combination for her.

Prayers

welcome albanga to the forum! I am so glad you found this forum. It has been a been blessing to me and I hope you will receive the same. You can get so much valuable tools here to help with your wife fibro. As you said this has been a long journey for you and your wife, but here is a great new start on learning how to mangage your fibro.

The best way to start is reading post frequently. This way you will feel connected and get some ideas on how others are mangaging their fibro. Just remember we all react different to treatments and meds, so one thing might work for your wife, but not others. It's good to ask your Dr. before tyring new things out. Some of the simplist things can cause some big medical problems. Feel free to ask questions so you can learn. This is how I learned and grown in this forum.

Educate yourself as much as possible on fibro. There are so many good books out there on fibro. Many can be found on line. I was amazed on my first book I read. I could see myself on each page. I actually was a little frustrated because what I read was what I was going through so many years. I kept telling my Dr's and family. I am sure your wife has been through the same. So now we know we are not alone anymore and the book made so much sense.

There are many old and new meds out for fibro. Some of us here on the forum take them. The problem is that many people with fibro are very sensitive to meds. This means they suffer a lot of the side effects that most people dont get. For myself I dont take any of the fibro meds such as lyrica and etc. I have had fibro over 20 years and I dont like the side effects it gives off. So I try to keep my treatment as simple as possible.

Pain and fatigue are big issues with us. Years ago I took heavy narcotics and it really never help the fibro too much. I became very dependent and it caused havoc in my life so I had to stop them. Many here do well on narcotics. As I said we are all made different. As you will learn there will be so many things you can do for pain. Some are medication and some are natural method.

Does your wife work? Sometimes people need to adjust their schedule to keep the fibro symptoms under control. making changes in life style also makes a difference. Stress is a huge factor in setting off fibro flares.

The best thing you can do for fibro is light exercise. I would of never believed it until I started doing it. It made a world of difference. You can learn many ways to exercise on this forum. The best tool I learned from this forum is do things in moderation. That has paid off big time. Our muscles sometimes will feel so depleted as if you had a muscle disease. It's crazy!

I wouldn't say fibro get worse as you get older. I think many of us find our rock bottom with this and dont know how to help ourselves until we are educated. I hit my rock bottom and I also found this forum looking for answers too. I am happy to say that I am doing very well with the help of this forum. I still have some painful days, but I am able to work around them now with a postive attitude.

Low vitamin D is common in fibro patients. Low vitamin D can cause more pain, depression and etc. Make sure your vitamin D gets rechecked during the year. Your going to hear about many supplements that help fibro. I take vitamin supplements to help my muscle cramps.

I do the following for my fibro. Lots of heat, rest when I can, light exercise, limit stess, eat healthy, vitamin D, magnesium, calcium, remron and subutex for pain. You will see many of have similiar treatments and meds.

I am happy for your wife to have someone that wants to help and support her. It will go a long ways for your marriage. I hope she can join in sometime. Just remember it does take time to get a good treatment plan that works for her. So try not to get discourage when one med or treatment doesnt work as well. I call it a trial and error method. It took me almost a month before I saw good results from the magnesium. It help with the muscle cramping.

I hope to see both of you around the forum again. If you need to ask questions or vent the day away please let us help. We all have been down that road before.

Post Edited (ak angel) : 9/13/2013 12:21:28 AM (GMT-6)

I exercise 4 times a week. I had to work up to my current levels of an hour and a half.

It all started with an arthritis water aerobics class, which strengthened my core, and made my pain more bearable.

I still go to the pool when possible, but am on an elliptical kick right now. It matters; Make time for it.

As far as meds, it can take a while to figure the best combination of meds and supplements for each individual. I do not do either lyrica or cymbalta, due to side effects. I take Vitamin D daily, as well as fish oil, niacin, calcium, and magnesium. I also take painkillers, and a muscle relaxant and sleep med at bedtime.

Hope your wife and you figure out the best possible combination to help her.

Dechaine - mine got bad too and I am thinking summer heat?

My BF went on a week long bike ride this summer, and met a woman with fibro on the event. She does it every year. She said she takes her time, and rests when she needs to, and is the slowest person on the ride, and takes painkillers, but has never yet stopped or quit the ride because of her condition.

And let me say, I do feel pain. After ten years of fibro, I just know that the best way for me to mitigate the pain is to stretch my muscles. I prefer the pool, low impact. I love the elliptical, and will even do the bikes. Outside the gym, I bike, hike, and walk. But many of the other traditional 'gym' machines are off limits.

Also, with the commute (been there and will be again), she needs to figure it out. Perhaps after work two days a week and twice on weekends. Use a crockpot for dinner, or leftovers. Tue/Thur at the gym until 8, then an early evening. I know! I KNOW. But this is just as important, and consistency is key.