Ways of coping with fibromyalgia?
December 20, 2006 6:38 AM Subscribe
My wife's been diagnosed with Fibromyalgia. Other than prescribed medication (pain pills, sleeping aids, etc) what else is worthwhile?
I've done quite a bit of searching on the web and seen everything from pot to guaifesine (sp?) to magnesium and glucosamine supplements touted as beneficial. What works?
Obviously lifestyle is a big part of it, and so is getting enough rest. Massage sounds logical, but all the other stuff sounds unproven. I'm not looking for links to scientific studies or anything but I'd be interested in hearing from those with experience. Thanks everybody!
I've done quite a bit of searching on the web and seen everything from pot to guaifesine (sp?) to magnesium and glucosamine supplements touted as beneficial. What works?
Obviously lifestyle is a big part of it, and so is getting enough rest. Massage sounds logical, but all the other stuff sounds unproven. I'm not looking for links to scientific studies or anything but I'd be interested in hearing from those with experience. Thanks everybody!
Oh yes, and specific advice for you: print out this diagram and memorize it. Seriously. The red dots are "tender points," which are areas that are most prone to muscle knotting and general pain; to be diagnosed, I think you have to react to at least eleven of them. Go over that diagram with your wife and have her point out which ones are particularly tender or painful (and which ones don't hurt at all, if applicable).
One of my exes did that with me, and it helped tremendously with our relationship; if you are conscious of her most painful areas and can adjust your physical interactions with her (if necessary), it will eliminate so much potential frustration.
posted by sarahsynonymous at 7:01 AM on December 20, 2006
One of my exes did that with me, and it helped tremendously with our relationship; if you are conscious of her most painful areas and can adjust your physical interactions with her (if necessary), it will eliminate so much potential frustration.
posted by sarahsynonymous at 7:01 AM on December 20, 2006
Prescription pain/sleep medication is no good unless she wants to add some kidney/liver damage to the mix. It also seems to be very important to er, get your fiber so to speak, and pain medication really slows digestion down.
B-complex is good for extra energy, and I usually take a calcium/magnesium supplement but it's more for general health. Gualfesin helps though I am having trouble describing how. Exercise is really important even if the first few days can be harsh. I try to drink enough water. Pot helps pain but some people get tired, and it prob shouldn't be at the top of your list unless this is something you'd be doing one evening anyways.. and looks like someone covered massage a lot better than I could.
I'm not sure that explaining this stuff (IE anyone's personal medical history, not just for CFS) explicitly is necessary. People will often assume you're telling the truth (which you basically are) if you say "Oh, I'm so sorry, I'm just really run down" when declining late outings, or "I don't like to be poked". Putting the diagnosis out there in public opens it up to critique.
posted by shownomercy at 7:27 AM on December 20, 2006
B-complex is good for extra energy, and I usually take a calcium/magnesium supplement but it's more for general health. Gualfesin helps though I am having trouble describing how. Exercise is really important even if the first few days can be harsh. I try to drink enough water. Pot helps pain but some people get tired, and it prob shouldn't be at the top of your list unless this is something you'd be doing one evening anyways.. and looks like someone covered massage a lot better than I could.
I'm not sure that explaining this stuff (IE anyone's personal medical history, not just for CFS) explicitly is necessary. People will often assume you're telling the truth (which you basically are) if you say "Oh, I'm so sorry, I'm just really run down" when declining late outings, or "I don't like to be poked". Putting the diagnosis out there in public opens it up to critique.
posted by shownomercy at 7:27 AM on December 20, 2006
Sorry I don't have cites, but I have read intersting links between clinical depression and fibromyalgia. You know, that depression hurts stuff? Pay attention to any depressive symptoms as well, help her manage her health holisticlly. Not as in balancing charkra's but as far as paying attention to her whole person.
posted by stormygrey at 7:33 AM on December 20, 2006
posted by stormygrey at 7:33 AM on December 20, 2006
Seconding stormygrey. I've known a few people with fibromyalgia, including a close family member, and one thing they had in common was a severely traumatic event in their past that they never full dealt with emotionally. Hence all the internal pain. Not to say this is the sole cause of the disorder, but therapy might be a good option to explore.
posted by Nathanial Hörnblowér at 8:56 AM on December 20, 2006
posted by Nathanial Hörnblowér at 8:56 AM on December 20, 2006
There are a number of medications being used to successfully treat fibromyalgia. They are not "pain medications," as such. Some are antidepressants. The "depression hurts" thing stormygrey mentions is an ad campaign for Cymbalta, and there is some clinical evidence of its efficacy in treating fibromyalgia in women. But another medicine might achieve similar benefit with lower cost, side effects, etc.
Conventional pain management can also play a role, particularly in dealing with intermittent episodes of pain.
Good and sufficient sleep is important, and you shouldn't rule out managing it with medicine if it's a problem for your wife and other approaches fail.
Obviously any choices about medication should be made with a doctor. If you have not already, strongly consider seeking input from an appropriate specialist, probably a rheumatologist. Fybromyalgia is still not well understood, though the situation is getting better, and a GP may not be on top of the best and most current information.
While it is always important to think about long term effects and side effects of drugs, the idea that you cannot use drugs to help manage pain and sleep issues without kidney and liver damage (not to mention chronic constipation, which is only an issue with opiates which generally should not be looked at for the long-term management of chronic pain) is simply false.
Your wife should be more careful than the average person (frankly the average person should be more careful than the average person) about overdoing it - physically grueling tasks or excessive exercise, drinking/partying, working excessive hours. There may be specific triggers - rush hour type driving is a killer for the person in my life who suffers this affliction. If you can identify them, avoid/reduce these things as much as possible.
Formal relaxation - meditation, mindfulness, yoga - seem to help.
Exercise does help but don't overdue it. Physical overexertion can bring on episodes.
It can be psychologically very hard, causing fears of being disabled, loss of opportunity and independence, and feelings about premature aging. Be supportive, be persistent, keep looking for the combinations of medical treatment and lifestyle modification. Like a person with arthritis your wife will most likely be dealing with this her whole life, but the prospects of managing it to a significant degree are very good.
There are lots of great resources online. Try starting here.
posted by nanojath at 9:21 AM on December 20, 2006
Conventional pain management can also play a role, particularly in dealing with intermittent episodes of pain.
Good and sufficient sleep is important, and you shouldn't rule out managing it with medicine if it's a problem for your wife and other approaches fail.
Obviously any choices about medication should be made with a doctor. If you have not already, strongly consider seeking input from an appropriate specialist, probably a rheumatologist. Fybromyalgia is still not well understood, though the situation is getting better, and a GP may not be on top of the best and most current information.
While it is always important to think about long term effects and side effects of drugs, the idea that you cannot use drugs to help manage pain and sleep issues without kidney and liver damage (not to mention chronic constipation, which is only an issue with opiates which generally should not be looked at for the long-term management of chronic pain) is simply false.
Your wife should be more careful than the average person (frankly the average person should be more careful than the average person) about overdoing it - physically grueling tasks or excessive exercise, drinking/partying, working excessive hours. There may be specific triggers - rush hour type driving is a killer for the person in my life who suffers this affliction. If you can identify them, avoid/reduce these things as much as possible.
Formal relaxation - meditation, mindfulness, yoga - seem to help.
Exercise does help but don't overdue it. Physical overexertion can bring on episodes.
It can be psychologically very hard, causing fears of being disabled, loss of opportunity and independence, and feelings about premature aging. Be supportive, be persistent, keep looking for the combinations of medical treatment and lifestyle modification. Like a person with arthritis your wife will most likely be dealing with this her whole life, but the prospects of managing it to a significant degree are very good.
There are lots of great resources online. Try starting here.
posted by nanojath at 9:21 AM on December 20, 2006
a friend's mother had fibromyalgia, and saw good results with swimming for exercise and smoking pot for pain.
i'll weigh in third on having heard similar anecdotal theorizing about the link between fibromyalgia and repressed traumatic past events- in the anecdotes i heard, the events in question, unfortunately, tended to relate to sexual abuse.
obviously this is anecdotal rather than clinical evidence; nonetheless, stormygrey's suggestion of holistic healing sounds like a good one anyway; no matter what's on her mind (even if it's just "crap, i have fibromyalgia",) seeing a counsellor will probably alleviate stress, which definitely promotes healing.
good luck.
posted by twistofrhyme at 9:25 AM on December 20, 2006
i'll weigh in third on having heard similar anecdotal theorizing about the link between fibromyalgia and repressed traumatic past events- in the anecdotes i heard, the events in question, unfortunately, tended to relate to sexual abuse.
obviously this is anecdotal rather than clinical evidence; nonetheless, stormygrey's suggestion of holistic healing sounds like a good one anyway; no matter what's on her mind (even if it's just "crap, i have fibromyalgia",) seeing a counsellor will probably alleviate stress, which definitely promotes healing.
good luck.
posted by twistofrhyme at 9:25 AM on December 20, 2006
My grandmother has fibromyalgia. She has had great luck controlling the pain through targeted acupuncture (make sure the acupuncturist knows that this is specifically for fibromyalgia, get reccomendations beforehand, etc). Usually I think that stuff is pretty bogus, but it really seems to help her a lot.
posted by muddgirl at 9:31 AM on December 20, 2006
posted by muddgirl at 9:31 AM on December 20, 2006
My mother also uses acupuncture, and it also seems to really work for her.
posted by fvox13 at 9:50 AM on December 20, 2006
posted by fvox13 at 9:50 AM on December 20, 2006
Fibromyalgia is one of those "flaky" diseases, like chronic fatigue. My late wife had the latter for 18 years. I am convinced that some of her self-administered herbal therapy actively caused the cancer that killed her.
Other folks are recommending specific things to do, so I won't, but I will gently suggest that some of the best things you can do for your wife include learning about this disease as much as you can, advocate/explain for her to all the people who are going to discount it and try to minimize it, protect her from stress if you can, and make sure to take care of yourself well. Its symptoms are variable, unpredictable, vague, and they don't often show up on the outside, like a broken bone. People tend to not believe sufferers are sick. That alone is stressful.
Good luck to both of you.
posted by FauxScot at 10:04 AM on December 20, 2006 [1 favorite]
Other folks are recommending specific things to do, so I won't, but I will gently suggest that some of the best things you can do for your wife include learning about this disease as much as you can, advocate/explain for her to all the people who are going to discount it and try to minimize it, protect her from stress if you can, and make sure to take care of yourself well. Its symptoms are variable, unpredictable, vague, and they don't often show up on the outside, like a broken bone. People tend to not believe sufferers are sick. That alone is stressful.
Good luck to both of you.
posted by FauxScot at 10:04 AM on December 20, 2006 [1 favorite]
One of my family members had fibromyalgia and over about 8 years he educated and cured himself. He has no traumatic event or depression by the way. He's one of those damn active happy tall sociable and successful chick magnet types who hated to leave his high-paying employment when he was physically struck down with this problem.
Anyway, the key thing I would add to what others have said about gradually increasing exercise and using pain meds is focus on diet. Different people's bodies/cells apparently are irritated by different things, and a person needs to experiment to find out what "allergies" or subclinical sensitivies they have to food and chemical irritants as well. There are chemicals like scents and solvents that I need to avoid for a related condition. My relative needs to avoid, of all things, citrus products and numerous other items, point being they can be very counterintuitive. Basically, the usual advice is to start by cutting out many things and gradually add them back one at a time. It's tiresome, but according to my relative it's necessary to find out what the triggers are. In other words, these dietary sensitivies are something to learn more about.
Most things as you research are going to be unproven, because it's clinical, not scientific. She has to figure out what works for her, just as doctors have to figure out what to do, even though they don't have a controlled study answering every question they have. There are some nutty claims out there, of course.
posted by Listener at 10:50 AM on December 20, 2006
Anyway, the key thing I would add to what others have said about gradually increasing exercise and using pain meds is focus on diet. Different people's bodies/cells apparently are irritated by different things, and a person needs to experiment to find out what "allergies" or subclinical sensitivies they have to food and chemical irritants as well. There are chemicals like scents and solvents that I need to avoid for a related condition. My relative needs to avoid, of all things, citrus products and numerous other items, point being they can be very counterintuitive. Basically, the usual advice is to start by cutting out many things and gradually add them back one at a time. It's tiresome, but according to my relative it's necessary to find out what the triggers are. In other words, these dietary sensitivies are something to learn more about.
Most things as you research are going to be unproven, because it's clinical, not scientific. She has to figure out what works for her, just as doctors have to figure out what to do, even though they don't have a controlled study answering every question they have. There are some nutty claims out there, of course.
posted by Listener at 10:50 AM on December 20, 2006
I've found a memory-foam mattress topper to be very helpful in ensuring restful and relatively pain-free sleep.
posted by jtron at 12:32 PM on December 20, 2006
posted by jtron at 12:32 PM on December 20, 2006
I would say that, while many different therapies/substances are recommended by people, fibromyalgia is incredibly idiosyncratic and different people respond to different things at different times. (When I'm feeling mediocre, walking feels really good for me. But if I'm having a bad flare-up any exercise just makes things worse.) I would advise your wife to follow her instincts and try what sounds interesting/best to her. And she will know when she needs to push herself and when she needs to chill out.
Massage or other bodywork can be very helpful. I found a Physical Therapist who did massage on the side, and she was extremely helpful because she understood bodies well and had a little experience with fibro patients. Someone who has geriatric experience would be helpful, too. I also tried Trager bodywork, which seemed like a bunch of hooey at first but, lo and behold, over the course of five years I really did improve with this gentle treatment. I second what Sarahsynonomous said above: a masseuse who does it wrong is bad news . . . they can actually trigger a flare-up.
FauxScot has some great and wise advice. Making your wife feel completely loved and supported by you will go very far in helping her help herself.
Best wishes.
posted by shifafa at 1:43 PM on December 20, 2006
Massage or other bodywork can be very helpful. I found a Physical Therapist who did massage on the side, and she was extremely helpful because she understood bodies well and had a little experience with fibro patients. Someone who has geriatric experience would be helpful, too. I also tried Trager bodywork, which seemed like a bunch of hooey at first but, lo and behold, over the course of five years I really did improve with this gentle treatment. I second what Sarahsynonomous said above: a masseuse who does it wrong is bad news . . . they can actually trigger a flare-up.
FauxScot has some great and wise advice. Making your wife feel completely loved and supported by you will go very far in helping her help herself.
Best wishes.
posted by shifafa at 1:43 PM on December 20, 2006
Sleep is probably one of the more important things tha is interfered with from fibromyalgia. So get a good bed. Be prepared to spend upwards of 6 grand for it. If I'm not mistaken if you doc prescribes it you can deduct it from the taxes and get the taxes taken off it or something like that. You want a bed that reduces pressure points. Have a look at a Sleep Number type bed and the temperpedic type beds. Both those are very good at reducing pressure points when sleeping. If you don't sleep well the mind is sure to go to mush.
posted by bigmusic at 2:14 PM on December 20, 2006
posted by bigmusic at 2:14 PM on December 20, 2006
I'm so glad you posted this question--I was diagnosed with Fibromyalgia this summer and am eager to see what advice other people may have.
While it varies from person to person, I really can't recommend daily exercise and good sleep enough. The things that have really helped me are walking daily (I've been slacking on this lately and can feel it but the pain is really a lot milder now as opposed to those constant electric shocks and freaky neuropathic pain), getting good sleep (buy a new bed if you have to, as bigmusic suggests--we did this and I think it helped a lot--I still wake up a lot at night, but it's not every hour on the hour anymore), and setting boundaries on stress. I.e., if it's work that's causing stress, try to set some boundaries...discourage her from working too many hours or checking work email from home, read before bed or have some other transition from wakefulness to sleep.
If you can, try to go away on the weekends and do little mini-vacations to reduce stress--stay in places with pools and places to walk to get in a bit of low-impact exercise. Camping's also good, if the weather's right and you guys are into that sort of thing.
My boyfriend really helped out a lot, mostly by being understanding, helping out around the house, and watching out for me--making me get out and walk around the block, even if I didn't really want to, discouraging me from working too much or fixating on work, and getting us out of the house on weekends to do fun things.
Best of luck to you both--while I have only been suffering from this for about 9 months, I am pretty hopeful about it now. When first diagnosed, I was really afraid I'd have to quit my job within weeks, the pain was so bad--I didn't think I'd be able to drive or walk. But it's 5 months since then and I'm while I can detect some low-grade pain some days if I really concentrate on feeling it or if I'm run-down or haven't walked in a few days, I am pretty much almost symptom-free.
posted by jenh at 7:26 PM on December 20, 2006
While it varies from person to person, I really can't recommend daily exercise and good sleep enough. The things that have really helped me are walking daily (I've been slacking on this lately and can feel it but the pain is really a lot milder now as opposed to those constant electric shocks and freaky neuropathic pain), getting good sleep (buy a new bed if you have to, as bigmusic suggests--we did this and I think it helped a lot--I still wake up a lot at night, but it's not every hour on the hour anymore), and setting boundaries on stress. I.e., if it's work that's causing stress, try to set some boundaries...discourage her from working too many hours or checking work email from home, read before bed or have some other transition from wakefulness to sleep.
If you can, try to go away on the weekends and do little mini-vacations to reduce stress--stay in places with pools and places to walk to get in a bit of low-impact exercise. Camping's also good, if the weather's right and you guys are into that sort of thing.
My boyfriend really helped out a lot, mostly by being understanding, helping out around the house, and watching out for me--making me get out and walk around the block, even if I didn't really want to, discouraging me from working too much or fixating on work, and getting us out of the house on weekends to do fun things.
Best of luck to you both--while I have only been suffering from this for about 9 months, I am pretty hopeful about it now. When first diagnosed, I was really afraid I'd have to quit my job within weeks, the pain was so bad--I didn't think I'd be able to drive or walk. But it's 5 months since then and I'm while I can detect some low-grade pain some days if I really concentrate on feeling it or if I'm run-down or haven't walked in a few days, I am pretty much almost symptom-free.
posted by jenh at 7:26 PM on December 20, 2006
Prescription pain/sleep medication is no good unless she wants to add some kidney/liver damage to the mix.
God, what a stupid comment.
posted by docpops at 7:45 PM on December 20, 2006
God, what a stupid comment.
posted by docpops at 7:45 PM on December 20, 2006
Sorry to hear about your wife. I was diagnosed with FM about 15 years ago. It sucks…
I have a wonderful Doctor that treats me as an equal in treating this illness. It’s hard to explain, but I feel like we are a team managing the FM, that helps me mentally in not becoming overwhelmed.
I have been on a drug regime that has worked great for me for the last five years. We’ve tweaked it here and there, but this is what works best for me. I stay away from narcotic pain relievers.
Prozac 40mg 1x day
Klonopin 1mg 1 x day
Mirapex .125mg 1x day
Pamalor 25mg 1x day
Skelaxin 800mg as needed (muscle relaxer)
Warm soaking baths when sore, also hot steamy showers. I nap almost daily. Sometimes on the weekend, I’ll sleep all day. When grocery shopping, if I feel really tired, I have the cashier put all refrigerated items in one bag. Once I get home, I’ll put the cold stuff away, rest on the couch for awhile, then unload the rest of the bags. Just don’t push yourself to hard, rest when you need to.
For those who are worried about my kidney and liver, they are doing just fine. I have complete blood panels run twice a year.
Best of luck to you both. By the way, I’m a divorced mother of two boys, 19 and 10. I work a full time job. It is not the end of the world, but it can feel like it sometimes
posted by JujuB at 10:01 PM on December 20, 2006
I have a wonderful Doctor that treats me as an equal in treating this illness. It’s hard to explain, but I feel like we are a team managing the FM, that helps me mentally in not becoming overwhelmed.
I have been on a drug regime that has worked great for me for the last five years. We’ve tweaked it here and there, but this is what works best for me. I stay away from narcotic pain relievers.
Prozac 40mg 1x day
Klonopin 1mg 1 x day
Mirapex .125mg 1x day
Pamalor 25mg 1x day
Skelaxin 800mg as needed (muscle relaxer)
Warm soaking baths when sore, also hot steamy showers. I nap almost daily. Sometimes on the weekend, I’ll sleep all day. When grocery shopping, if I feel really tired, I have the cashier put all refrigerated items in one bag. Once I get home, I’ll put the cold stuff away, rest on the couch for awhile, then unload the rest of the bags. Just don’t push yourself to hard, rest when you need to.
For those who are worried about my kidney and liver, they are doing just fine. I have complete blood panels run twice a year.
Best of luck to you both. By the way, I’m a divorced mother of two boys, 19 and 10. I work a full time job. It is not the end of the world, but it can feel like it sometimes
posted by JujuB at 10:01 PM on December 20, 2006
Stormygrey - not to snark, but you would have a certain amount of depression knowing that you suffer from a cronic, painful disease that has no known cure.
posted by JujuB at 10:08 PM on December 20, 2006
posted by JujuB at 10:08 PM on December 20, 2006
Fibromyalgia is one of those "flaky" diseases, like chronic fatigue.
Sorry for the semi-threadjack question here, but I was wondering if one of the FM people would mind posting some general information about it. I will admit that my perception of it is as one of those syndromes that cannot be objectively diagnosed and is used as a catchall for doctors who want to tell patients that bug them something.
The diagram that sarah posted, therefore, was pretty impressive to me because of how specific it was.
posted by norm at 7:57 AM on December 21, 2006
Sorry for the semi-threadjack question here, but I was wondering if one of the FM people would mind posting some general information about it. I will admit that my perception of it is as one of those syndromes that cannot be objectively diagnosed and is used as a catchall for doctors who want to tell patients that bug them something.
The diagram that sarah posted, therefore, was pretty impressive to me because of how specific it was.
posted by norm at 7:57 AM on December 21, 2006
This thread is closed to new comments.
Massage can help, but you have to make sure the masseuse knows how to deal with fibromyalgia sufferers; the muscle knots are much more deeply-rooted, and the pressure that is used on normal muscle aches can be extremely painful. Also, relating back to the first question, don't let friends try to help out and give her shoulder or back massages; I had a friend who was just convinced she could work out the tension and tried without asking, and it hurt me to the point of tears. Thank them profusely for their concern and willingness to help, but let them know that there are particular needs.
posted by sarahsynonymous at 6:55 AM on December 20, 2006