OT Fybromyalgia.... Anyone?

My daughter (adult) has just been diagnosed with this. Have looked up on internet but any personal experience, advice, tips etc.?

Would really like to hear what happened to you.

Kate

i was diagnosed this summer - after so many tests, i lost count & even still my PCP said it's not a disease you can take an xray & say "that's it"....but he's treating me as such.

it's a LONG story, but i went in thinking something was wrong with my band.   fatigue / constant diarrhea / joint pain / food intolerances - dairy for the most part.    turns out i'm in the early stage of OA, lactose intolerant, IBS & fibro.

i was prescribed tramadol, which made me SICK to my stomach at first, but what a difference when it comes to the joint pain.   i work outdoors on my ranch, so i really don't have the luxury of not being physically active.   i've actually found that if i'm sitting around not doing much, the stiffness in my hips is bothersome.   

i'm new to this - so i'll be looking for others to chime in.

ETA - i'm 42 & still very young :)

Kate,

I was diagnosed with FM almost 2 years ago. It took me a year to find a doctor who believed I was in pain and seeking a diagnosis and treatment, not seeking narcotics or attention. My doctor's first priority in treating me was to improve my sleep (disturbed sleep is an aggravating factor in both FM and obesity), so he prescribed an antidepressant (amytriptyline) with a sedative effect. It works very well. He also prescribed tramadol, an opiod but non-narcotic painkiller (don't ask me to explain that!) which also works very well if I take it faithfully but is not effective for quick treatment of a pain flare-up (some FM patients use narcotic meds for that purpose). Finally, he said that aerobic exercise is the best treatment for FM and to continue with the exercise I was already doing.

Within a month or two of starting those meds, my pain had gone from 8-9 on a scale of 10 (10 being the kind of pain that makes you scream or cry) for 90% of each day to 4-5 on a scale of 10 for 30% of each day. Occasionally I have flare-ups - not sure what causes them - but they only last a few days instead of weeks.

Recently I was asked to write an article about the link between obesity and FM for a magazine called Fibromyalgia & Chronic Pain LIFE. It's published by the National Fibromyalgia & Chronic Pain Association. You can access the e-magazine and other resources at:
http://fmcpaware.org/

I know 2 other bandsters who have fibromyalgia. I'll give them a heads-up that you're looking for info.

Jean

"Within a month or two of starting those meds, my pain had gone from 8-9 on a scale of 10 (10 being the kind of pain that makes you scream or cry) for 90% of each day to 4-5 on a scale of 10 for 30% of each day. Occasionally I have flare-ups - not sure what causes them - but they only last a few days instead of weeks."

Hi Jean..I take Tramadol too in the non-generic form: Ultram ER.  I was just wondering if you take the extended-release form of this medicine?  I took Tramadol for years but my pain greatly improved when I switched to Ultram ER.  I was on 200mg a day for a while but 300mg keeps the pain down to maybe 10% of the day at worst,,if that much.  When I start feeling pain in my legs, it means I'm real late in taking the pain pill.  The 300mg lasts me approx 24 to 30 hours.

I know 30% of each day is a helluva lot better than 90% but maybe you can still tweak that. :)

I'm taking the regular generic tramadol. I'd love to try the non-generic Ultram ER if my insurance company would approve the non-generic RX.  I'll look into that...thanks for the suggestion!

Hope it helps!  I suppose I am fortunate that I get my monthly pain meds (Ultram ER  & a scrip for hydrocodone for break-through pain) paid by Workmens Comp since my injuries in 2002  were work-related.    I see my pain doc once every 6 months for a med check but this dosage has maintained my pain for a long time.  I tried going back to the Tramadol briefly right after my lapband surgery when the doc worried about the pill size but it hardly put a dent in my pain so I'm back to the dosage that has worked for years (after convincing my lapband doc that the pill wasnt too big for me).

Oh Kate she is, going to need alot of understanding about her disease and support from all the family! I too have fibro and wouldn't wi**** on my worst enemy. I think I've had it since I was in my early 20's but of course back then they thought you were crazy. My pain seems to be constant and rarely flares like some folks. My chiropractor is actually who tested me for the tender points and then I brought it up with my primary doc who fortunatly does believe in it but wanted a better, 2nd opinion so sent me to a fellow doc who had researched fibro at a local university so was quite an expert in the field. He also agreed that I did indeed have fibro and should get medication for the pain because it was real pain. My primary also believes life should be lived not endured so he had no problem prescribing narcotics for me because I was taking such large doses of tylenol. He said it would be far easier on my kidneys and liver to use the narcotics than continue the large doses of tylenol. So for the last few years I've taken 30mg of morphine 3x a day and 5 mg of oxycodone 4-6 times a day for pain. I also saw a pain specialist who added 60 mg of cymbalta a day to the regimen. I've been on this same dosage for several years and so far it works pretty well. Some folks consider me a junkie and have said so to my face, however I look at it as if I had cancer or diabetes would I refuse medications to help me feel better or would I just suffer. Frankly I've spent enough of my life in horrendous pain between the fibro and severe arthritis so I really don't care what they think. I'm still in lots of pain but I can work thru it most days. That is one thing I had to learn is to make the pain a friend instead of an enemy you are always fighting. Stress of any kind can set off a flare in most people so I work really hard at staying as stress free as possible. I don't take on more than I can handle and I've learned to say no to people who want more than I can do. I hope she is able to find a good doc who is well versed in treating it and I would advise she read up on it and maybe buy a few books to read on it. If she has any questions I can help her with I'll PM you my e-mail addy and would be glad to chat with her if she needs any help!

Oh ladies, thank you! But I am now wondering! DD is nothing like you are!

Basically, she has had a " bad back" for years, upper back and neck. Not bad all the time, often reaction poor sitting conditions, sudden twists, lifting. Then she had severe pelvic pain with and after her pregnancies. She spends her time being careful, no swimmin, running, lifting.

But it is not constant, lthough a lot of the time. When bad it is horrid, though.

On the internet it says poor sleep patterns and painful periods, both of which she has. But she doesn't get any other joint, muscle pains. And she can usually link pain to a previous action.

Not sure now!

Kate

Hi Kate,
I am a little more like your daughter in that my fibro is not constant. I will feel great for weeks, even months (other than my severe spinal arthritis) but have occasional flare ups. I couldn't isolate it from the back pain for quite a few years, but when my butt hurts, or the top of my foot, the great toe, or the flesh in back of my upper arm. Often if I have been having a period of more back pain or some other type it will trigger a flare. Over all mine is not as severe as many people have and I consider myself lucky.

The doctor who diagnosed mine told me the most essential thing I have to do for myself is to get enough rest. He said that if I had to take a nap daily to do that then that is what I must do. I try to do that when I am having a flare, though it is not always possible. The sleep disorder that Jean mentioned is a large factor. In fact the sleep specialist I met with told me after my sleep study came back that he expected the results we got. What happened with me, and apparently I am typical, was that my sleep would go into level 2 but there were very frequent spikes into level one, nearly waking me but not quite. For just 45 minutes in the night I went into level three but also spiked out of there. I never got to level four where useful things like cellular regeneration take place. If there is one thing I could stress to her is to get a sleep study if she feels unrested in the mornings.

Medication for pain, avoiding stress, not putting pressure on ourselves, too much, are all things we can do to manage the symptoms. I have added Cymbalta to my regimen which helps me avoid flares, and deals with the depression that seems to hit along with a flare. There is something called "fibro fog" that many complain of. It is an inability to think as clearly as one normally would. I suffer from that less than many, too, but it can hit me as well.

Exercise is important. A friend of mine leaves for work an hour earlier than she needs in order to hit the gym for rigorous cardio workouts. I don't do so well with that, but it is quite important. We have to avoid some types, though, as putting too much stress on the joints. That comes from my physical therapist.

I guess the point is that each person suffers it differently, has different symptoms, different needs, and different things that help. For myself the very best pain relief is a hot tub soak. I get rather pruneish sometimes. Just knowing that what you are suffering has a name and is not all in your mind is the biggest.

I wish her well, Sue

Thanks, Sue. I am passing all this on to her.

Kate