Fibromyalgia

[Rose Pink]

After a tear-filled weekend, I have finally decided to accept the fibromyalgia diagnosis. I've been to so many doctors from different specialties trying to find an explanation for my pain and always, always run up against the fibro wall. I just didn't want to accept this diagnosis but I can't run from it any longer.

So . . . I've been through the denial. I'm too worn out to be angry. I've stopped bargaining (the latest doctor confirming the diagnosis yet again was my last bargaining chip and I lost). I handle depression well most of the time.

Now, I'm finally ready to go on with the fifth step in the grief process: that of acceptance and learning to live with this condition.

I am interested in hearing from other tuggers who have this or another chronic pain condition. How do you cope. What works. What doesn't. I don't do well with medications. I've tried Savella, Lyrica and gabapentin (Neurontin) with little to no success (IOW, the side effects outweigh the pain benefits--and the pain benefits have been disappointing).

I am not looking for sympathy, so save it. I don't live in Afghanistan or Somalia. I don't have a terminal disease. I have friends and family who love me and suppport me. I have an otherwise good life. I just need to learn to live with pain. Other people do it all the time and I am looking for their suggestions.

I have an appointment with a rheumatologist but couldn't get in before May. When I get home from visiting my darling grandchildren, I will look into a support group here in my locale. I am presently taking Alexander lessons to learn to use my body more efficiently with the hope of decreasing--or at least not increasing--my pain levels.

And, now I am off to the doctor's to get a 24-hour holter monitor to check on my cardiac status. I was having palpitations all day last Thursday. The EKG was fine so I think it was "just" stress and I feel confident the 24-hour monitoring will likewise show my heart to be fine.

See you all later today! Hope yours is great. Mine is going to be. I have decided.

 

[Fredm]

I use Diclofenac (50mg) 3 x daily for my chronic pain. It takes a couple of weeks to kick in. But, it has helped where Neurontin did not.

The list of potential side effects are scary, but thus far I have tolerated it well.


Good luck.

 

[glypnirsgirl]

I have had chronic pain for years. Here are the things that I do to help:

I try to stay active as I have found that giving in to it and sitting still makes it worse. So, I walk (love the idea of the Alexander training) about 2 miles per day. I do Pilates on the reformer - can't get up and down to do mat Pilates.

I sit in a relax the back chair that my husband has set up an ergotron for my computer. Using this, I can work from a very neutral position. This is one of the best things that has helped.

It is this chair: http://www.relaxtheback.com/recliners/zero-gravity.html

This is the ergotron http://www.ergotron.com/Products/MultiMonitorMounts/tabid/159/Default.aspx

- we have the central post, two arms for keyboards and two arms for monitors. Our CPUs are between the chairs.

I have this set up at home and the office. I have a separate office for working in this position, I don't see clients that way.

I sleep on a tempurpedic mattress.

I take great vitamins.

I get a massage once a week.

I had a sleep study done that showed that I have terrible sleep apnea. So, I now use a CPAP machine. Getting enough HIGH QUALITY sleep has really helped with the fatigue.

Between everything, I can manage most days without pain medication. I must have my anti-depressants daily.

elaine

 

[ricoba]

I can't give you any advice and I won't give you any sympathy as you requested...

But, I will wish you all the best and encourage you to keep that good healthy happy attitude.

 

[jackio]

My daughter has had fibromyalgia since she was a teen and manages it very well. Her key is sleep. When she flares up, she immediately cuts back on her hectic schedule (pretty much limits herself to work and home). She must exercise diligently to control her pain and maintain her health - walking and stretching mostly. She does the elliptical also because it is easy on the knees. Exercise helps her sleep also. She finds if she can manage her sleep (fibro has to do with the lack of a certain phase of sleep in which the tissues regenerate) she stays healthy. When she is in a flare up, her sleep is poor and even if she "sleeps" for 10 hours she wakes up feeling as though she hasn't slept at all. When she is in the deep throes of a flare up, Trazadone helps her re-establish a good sleep pattern. Otherwise she is med-free except for occasional Advil.
Good luck.

 

[tlwmkw]

A friend with fibro swears that exercise is the best thing. She goes to a pool that is heated to a higher "therapeutic" temp and exercises in the warm water and that has helped tremendously. Do you have such a facility near you? I think this one has PT's there that also assist with the correct sort of exercise but I'm not certain of that.

She is one who won't take meds and the exercise and good sleep are her main stalwarts and she manages very well.

Hope you have some relief.

tlwmkw

 

[susieq]

I can't give you any advice and I won't give you any sympathy as you requested...

But, I will wish you all the best and encourage you to keep that good healthy happy attitude.

Ditto!!!!

 

[Rose Pink]

Thanks for the suggestions. I do have a pilates reformer--buried under my husband's "stuff." It got pushed away when we needed the room it occupied for my FIL. I hope to be able to find a home for it this summer so I can actually use it. It has always caused discomfort in my shoulders when I lie down on it for the leg presses. And I also get pain in the back of my head when I lie on my back. But, there are other ways to exercise with it.

I will make a list of the meds noted here. I have taken trazadone before and can see myself taking it at night for sleep once I have weaned myself off the gabapentin. I am a bit afraid to take anything else as long as I am on that. It will only be a couple weeks more until I am done with it.

When I get home from my upcoming trips, I will join the county rec program. They have a pool and an indoor track I can walk on. I believe they have a time set aside in the pool when people can walk in the pool. That will be good--hope it isn't cold but then again, cold may help reduce inflammation (if I can stand it, that is).

I also need to invest in some good shoes. I walked several blocks last week in Phoenix (high 70s--luscious weather) and my right foot began hurting all over, top and bottom. I am also getting the nerve pain in my upper legs as well.

Thanks for the ideas and the encouragement. Life goes on and I intend for mine to be productive.

 

[MuranoJo]

Rose Pink,
Wishing you the best as you tackle this, and I am sure you will succeed.

I am just curious how they diagnose this, as it seems a very 'mysterious' disease to me.

 

[Rose Pink]

Rose Pink,
Wishing you the best as you tackle this, and I am sure you will succeed.

I am just curious how they diagnose this, as it seems a very 'mysterious' disease to me.

Thanks. The diagnosis is one of elimination. If the doctors can't find a specific cause for the pain and fatigue syndrome, they call it fibromyalgia.

In my case I've been to umpteen doctors over the years. I've had bloodwork done, x-rays, MRIs, many courses of physical therapy as well as a nerve conduction study. I've even been to chiropractors (won't go back there) and doctors of oriental medicine for herbs and acupuncture. I've been tested for lupus, arthritis, thyroid, and things I've certainly forgotten. Over the years, the symptoms have only increased.

So, what to do? Learn to live with it and be happy in spite of it.

 

[pjrose]

You have a great attitude!

I took Trazadone for years to help with sleep, until I several times found myself staring cluelessly at common things and then once, while driving near home, didn't know where I was. This was way beyond the forgetfulness many of us have (e.g. Karen's song thread); I stopped the Trazadone and the scary blankness stopped.

I echo the idea of the warm pool; a friend here directs the aquatic program at a senior living center, and gets to be in the warm pool all day!

All I can add is chocolate, hugs, and keep smiling!

 

[SueDonJ]

I can't give you any advice and I won't give you any sympathy as you requested...

But, I will wish you all the best and encourage you to keep that good healthy happy attitude.

This says everything I would have said.

 

[Liz Wolf-Spada]

Rose Pink, I can totally sympathize. I have had cfs for 25 years and fibro for about 18. The lyrica has helped me. Have your doctor check you also for viral infections. It turns out I have high levels of herpes 6. Other culprits are cytomeglavirus, epstein barr, lyme, and probably others I'm not thinking of right now. If you go online and do a google search for fibromyalgia and chronic fatigue treatment centers, you might find one you could go to. It is expensive for me, but I think I am improving. I am taking many supplements they give me, doing IV's monthly for nutrients and will be starting the anti-viral program in March. I have been using sleeping pills for about 3 months and they just aren't working. I ordered something called "Natural Sleep" from Life Extensions. It is melatonin and some other vitamins etc. It includes instant and time release melatonin and I also got melatonin that dissolves under the tongue. I am sleeping better, but may still not be "resting" in the deepest zones of sleep. Good luck. Don't try a cold pool, unless you really benefit from swimming. Heat is much better for fibro than cold. Anti-inflamatories might help. I also use tramadol, a non-narcotic pain med when I need it.
Don't give up hope and be good to yourself.
Liz

 

[TSchmidt]

Have you ever tried fasting - for a day or two on juices? I was aching all over like the flu and decided to eliminate food for a few days. I found out that certain food made me ache - gluten in my case. Some find that milk products make them sore. It might be worth a try. Good luck.

 

[SallyMagoo]

My poor mother suffered with fibromyalgia and severe insomnia for years. I really haven't developed it yet, but have suffered with insomnia all my life. I too was found to have severe sleep apnea and the cpap has really improved my sleep. I doubt if I have ever slept more than 5-6 hours. 6 solid hours for me is really wonderful. I have used sleep aids such as Lunesta and Sonata but I don't feel good the next day. I can't just decide to get more sleep.

The best thing to help my sleep has been amitriptyline which I have used for many years. I think it's prescribed for fibromyalgia too. I use a very low dose, to minimize the side effects. But there are some nights even this doesn't help. Melatonin hasn't worked for me either; I believe I am hyper-sensitive to many substances.

An area I am really interested in is whether MSG is implicated in insomnia, and possibly fibromyalgia. I'm sure there isn't scientific proof, but there may be some day; I have attempted to cut out MSG from my life as much as possible. I know for sure I haven't slept well after some meals at asian or other restaurants, and that triggered the thought it could be MSG. I have done some research and found MSG is in many, many of our foods disguised as other names. Some believe it is implicated in fibromyalgia. I believe that excito-toxins, such as MSG and aspartame, which are pushed on us by food industries, are very detrimental to health. I used to use aspartame heavily, and years ago figured out that it gave me migraines; there is no doubt in my mind. You might check out www.msgmyth.com. Something to think about anyway. I feel there is a link between foods and disease, which doctors don't always emphasize. I don't doubt that exercising and avoiding stress play big roles too. I would never pretend to know what will work for anyone else. Good luck, and I hope you can find things that will help.

Sally

 

[Rose Pink]

Thank you for the ideas and suggestions. My goal is to start eating a more nutritious diet and to be good to myself. I'll be reading more labels as part of that goal. I can try the fasting to see if it helps. However, in my mind a two day fast of liquids is associated with a colonoscopy prep.:hysterical: I'll need to get that image out of my mind.

As for sleep apnea, I've had two sleep studies in the past and neither showed any problems with apnea. I tried a CPAP anyway to see if it would help (based on symptoms) but found it woke me up as well.

I often take naps during the day if I get too fatigued. I truly feel blessed that I can take the time to do that.

 

[TSchmidt]

I went to an integrated Doctor and she recommended taking Magnesium Glycinate. She had me take it three times per day and it did wonders for me. This is a highly absorbeable magnesium. If you are having heart palpitations, it certainly would help those.

Within a week I was feeling great. I also had heart palpitations and did the holter monitor. This maginesium has done wonders for me. It is good for restless leg syndrome, depression, and fibromyalgia among other things. Give it a try. I found it at the health food store. The brand is KAL.

 

[bhrungo]

I don't have fibromyalgia, but I do have multiple sclerosis. I know about pain, and how miserable it can be. I know that I cannot live without my Zoloft for depression. I know that if I don't get enough sleep it might be a rough day, as far as my MS symptoms go.
I try to avoid stress, but sometimes that is difficult. I know what helps me a lot is finding others with MS & talking with them to know that I am not alone. Have you talked to others with Fibromyalgia?

Wishing you the very best!

 

[Rose Pink]

...Magnesium Glycinate. ... If you are having heart palpitations, it certainly would help those.

My levothyroxin dose was too small. We upped it. Problem solved.

 

[Rose Pink]

...Have you talked to others with Fibromyalgia?

Wishing you the very best!

Thanks. Yes, I have a friend with fibro and lupus. (I count my blessings!)She has been a great source of info and comfort as well as giving me some tough love.

I plan to look into some support groups when I get back from visiting the grandchildren. I want positive support groups, not whiners. I don't need to get any more depressed. I am working through my emotions and want only positive ones in my life.

 

[ricoba]

I plan to look into some support groups when I get back from visiting the grandchildren. I want positive support groups, not whiners. I don't need to get any more depressed. I am working through my emotions and want only positive ones in my life.

That is an excellent idea! Good for you!