Fibromyalgia

[El Mudo]

My girlfriend has had fibromyalgia for a few years now. Here's a definition for those who don't know what it is:

Fibromyalgia, meaning muscle and connective tissue pain (also referred to as FM or FMS), is a disorder classified by the presence of chronic widespread pain and a heightened and painful response to gentle touch (tactile allodynia).[1] Other core features of the disorder include debilitating fatigue, sleep disturbance, and joint stiffness.

Link (http://en.wikipedia.org/wiki/Fibromyalgia)

It can be just as bad as it sounds. It tears me up when I see her in pain (she had an attack this morning) and I feel so helpless because there's nothing I can do to help her and you never want to see someone you love so much in that kind of pain.

She has been doing remarkably better the past few months (to the point where she's almost completely kicked her meds), but hasn't been doing so well the last few days, culminating in the attack she had this morning. I usually give her massages every morning when we wake up so she can get up and move around, but even that didn't help today

My point is, does anyone have any experiences with this or know anyone who has it? Any advice/support you could give me would be wonderfully appreciated on my part.

[~Katja~]

I have heard of people with this condition and the company I used to work for actually had a study going to relieve pain associated with fibromyalgia.
I think with you supporting her emotionally and physically when she is having these attacks and understanding what she is going through, along with massages and some controlled pain meds, some form of regular exercise there is really nothing more you can do.

http://www.fda.gov/consumer/updates/fibromyalgia062107.html#more

[west milly Tom]

My aunt has it and it is awful. She treats with opiates and it has just hobbled her. Its been over 10 years for her now and no sign of an end.

[GregoryJoseph]

I'd suggest posting this in Dr. Steve's forum. He's incredibly helpful and knowledgeable and would probably have a lot better info than any of us could provide.

I wish you and your girlfriend all the best.

[Snoogans]

dammit i didnt notice where this was. Sorry

[Caseyelan]

My girlfriend has had fibromyalgia for a few years now. Here's a definition for those who don't know what it is:



Link (http://en.wikipedia.org/wiki/Fibromyalgia)

It can be just as bad as it sounds. It tears me up when I see her in pain (she had an attack this morning) and I feel so helpless because there's nothing I can do to help her and you never want to see someone you love so much in that kind of pain.

She has been doing remarkably better the past few months (to the point where she's almost completely kicked her meds), but hasn't been doing so well the last few days, culminating in the attack she had this morning. I usually give her massages every morning when we wake up so she can get up and move around, but even that didn't help today

My point is, does anyone have any experiences with this or know anyone who has it? Any advice/support you could give me would be wonderfully appreciated on my part.

Growing up my neighbor had this. She was always in pain. Always. I just remember my mom always going over there with microwave beanbag things to help relieve the rain. I don't really know what happened to her after I left home. But, I remember her not even being able to drive one time when I came home cause she claimed her foot lost feeling.

I wish her and you the best with this.

Sounds horrific.

[Thebazile78]

I learned a little bit about it after my friend's sister was diagnosed about ... 7 years ago.

She'd been suffering from migraines and generalized pain, so it was challenging to get things figured out.

I know that she found that the medication Lyrica helped ... and recent TV ads have indicated that Lyrica is FDA-approved as a treatment for fibromyalgia.

Has your g.f. tried medication?

[El Mudo]

Growing up my neighbor had this. She was always in pain. Always. I just remember my mom always going over there with microwave beanbag things to help relieve the rain. I don't really know what happened to her after I left home. But, I remember her not even being able to drive one time when I came home cause she claimed her foot lost feeling.

I wish her and you the best with this.

Sounds horrific.



She had a leg spasm the other day while driving and almost lost control of her car. Thank God she was able to steer off onto the side of the road.

She's on Lyrica, or has been, but has been unable to afford it the last few monfs. But again, she's been doing so well until recently that she's almost completely kicked all of her meds. She used to have to take so many pills every day just to function it was unbelieveable (mostly pain relievers and anti inflammatories)

Its so hard to diagnose. It took doctors over a year to finally get the correct diagnosis as to what it was, and until then, she basically had to go through tests for every disorder/disease you can think of.

She's the strongest, most amazing person I know and have ever known. I honestly don't know how she does it.

[~Katja~]

She had a leg spasm the other day while driving and almost lost control of her car. Thank God she was able to steer off onto the side of the road.

She's on Lyrica, or has been, but has been unable to afford it the last few monfs. But again, she's been doing so well until recently that she's almost completely kicked all of her meds. She used to have to take so many pills every day just to function it was unbelieveable (mostly pain relievers and anti inflammatories)


It's so sad when people cannot afford treatment for their conditions, just another sign how broken health care in this country is.

Lyrica is still under patent until 2013 so there won't be any legal generics available until then.


Its so hard to diagnose. It took doctors over a year to finally get the correct diagnosis as to what it was, and until then, she basically had to go through tests for every disorder/disease you can think of.

She's the strongest, most amazing person I know and have ever known. I honestly don't know how she does it.

I think it is not only hard to be diagnosed but sometimes is not even recognized, and for the longest time people were questioning if it actually exists. It's mind boggling when you see people with the same symptoms in so much pain and suffering.
It's also the reason there are not many medications out to treat the symptoms and it's pretty much still dominated by one or two pharmaceutical companies.

I think it has been taken much more serious in the past years and a lot more research is done, new drugs are waiting approval and will offer new methods of treatments in the near future.

You are definitely doing a great job supporting her, knowing someone is there to care and help you through the suffering also reduces the stress and depression that most often is accompanied by the condition.

[Thebazile78]

....
Its so hard to diagnose. It took doctors over a year to finally get the correct diagnosis as to what it was, and until then, she basically had to go through tests for every disorder/disease you can think of.....

I remember it being exactly that with my friend's sister. At first, they treated it like arthritis, but I think the arthritis treatments gave her bad migraines. Then, something else she was taking made her drastically lose weight ... so she gave her TaeBo tapes to my friend.

I wonder - because recent studies have mentioned gentle exercises like yoga and tai chi as worthwhile in pain management, especially in folks with arthritis - is it safe for someone with fibromyalgia to do a little yoga or are their muscles too sensitive for even that? (I would recommend talking to a doctor about it and then get a good beginners' video, along with a brick & strap so it's not tempting to over-extend yourself. I like Yoga Zone's "Introduction to Yoga for Beginners" ... which is available at Amazon for about $6. If it's OK, and it works, it'll be enough to get through until she's able to afford her meds again.)

[El Mudo]

I remember it being exactly that with my friend's sister. At first, they treated it like arthritis, but I think the arthritis treatments gave her bad migraines. Then, something else she was taking made her drastically lose weight ... so she gave her TaeBo tapes to my friend.

I wonder - because recent studies have mentioned gentle exercises like yoga and tai chi as worthwhile in pain management, especially in folks with arthritis - is it safe for someone with fibromyalgia to do a little yoga or are their muscles too sensitive for even that? (I would recommend talking to a doctor about it and then get a good beginners' video, along with a brick & strap so it's not tempting to over-extend yourself. I like Yoga Zone's "Introduction to Yoga for Beginners" ... which is available at Amazon for about $6. If it's OK, and it works, it'll be enough to get through until she's able to afford her meds again.)


We are planning on starting a workout regimen together, and our apartment complex has a pool, which is a good way for her to exercise/move about without too much pressure on her joints

[Thebazile78]

We are planning on starting a workout regimen together, and our apartment complex has a pool, which is a good way for her to exercise/move about without too much pressure on her joints

Swimming is one of the best forms of exercise for pretty much everybody. Good for you! Hopefully, that will be a big help with the pain management.

Is this pool indoors & heated? If so, bring water bottles with you when you use it. You'd be surprised at how dehydrated you get with an indoor, heated pool. Especially if the water temp is higher than a younger person might prefer. (Personally, I'm a cold water swimmer. Haven't done a Polar Bear Plunge yet, but I'm considering doing at least one before I turn 40. I have plenty of time to get my arse in gear.)

[~Katja~]

Swimming is one of the best forms of exercise for pretty much everybody. Good for you! Hopefully, that will be a big help with the pain management.

Is this pool indoors & heated? If so, bring water bottles with you when you use it. You'd be surprised at how dehydrated you get with an indoor, heated pool. Especially if the water temp is higher than a younger person might prefer. (Personally, I'm a cold water swimmer. Haven't done a Polar Bear Plunge yet, but I'm considering doing at least one before I turn 40. I have plenty of time to get my arse in gear.)

I have to agree, it was the only exercise I ever enjoyed and did for quite some time before I had my kid. It was very relaxing, doing underwater exercise and swimming... and drowning out noise and stress around me.
It got me through some stressful times of my divorce and kept me sane. She probably could do it two to three times a week and really benefit from it.

Good tip on the water, it definitely dehydrates you as much, if not more than regular exercise.

[Thebazile78]

I have to agree, it was the only exercise I ever enjoyed and did for quite some time before I had my kid. It was very relaxing, doing underwater exercise and swimming... and drowning out noise and stress around me.
It got me through some stressful times of my divorce and kept me sane. She probably could do it two to three times a week and really benefit from it.

Good tip on the water, it definitely dehydrates you as much, if not more than regular exercise.

The pool at my former gym is heated. The first couple of times I used it, I had to cut my workout short because of the temperature (it was fucking piss-warm in that pool; ick!) affecting my breathing and making me queasy.

I only put my finger on it after I started bringing my water bottle, sometimes with a "Propel" packet mixed in it, sometimes not ... and sipping it whenever I felt lightheaded. It helped A LOT. In fact, I was able to get my full 25-30 minutes in, rather than the 10-15 without water or a "pre-workout" snack. (I have that in quotes because I'd have my snack before I left work ... 45 minutes away.)

[El Mudo]

Just thought I'd give an update...

Since January, she's been able to kick ALL her meds, AND this weekend she was able to walk to and from the zoo over a really long distance (and uphill to boot!!) I'm so proud of her :)



We're still fighting fibro together, and there are still lots of precautions we have to take, but her progress since Christmas has been absolutely amazing and astounding.

[boosterp]

Just thought I'd give an update...

Since January, she's been able to kick ALL her meds, AND this weekend she was able to walk to and from the zoo over a really long distance (and uphill to boot!!) I'm so proud of her :)



We're still fighting fibro together, and there are still lots of precautions we have to take, but her progress since Christmas has been absolutely amazing and astounding.

:clap:

Keep supporting her, exercise with her which helps to motivate you both, and remember that she will not always be able to push herself and may get down but remind her of your love and optimism. How old is she?

I suffer chronic pain and limitations which is not fibro, but I try to push myself as often as possible. Unfortunately for me without meds I walk and move as if I am 90 years old. It sucks but with my friends and family there to support me I get through my worse days and look forward to the better ones.

[RoseBlood]

That is fantastic Mudo!!! Your encouragement and support has no doubt helped her make such progress. Good luck too both of you. :happy:

[~Katja~]

Just thought I'd give an update...

Since January, she's been able to kick ALL her meds, AND this weekend she was able to walk to and from the zoo over a really long distance (and uphill to boot!!) I'm so proud of her :)



We're still fighting fibro together, and there are still lots of precautions we have to take, but her progress since Christmas has been absolutely amazing and astounding.

that is a great update! Has she been exercising regularly since?

[El Mudo]

We don't have a lot of time to do things during the week because of our work schedules and the weather being cold, but as it gets warmer we're trying to get out and walk more. The last few weekends we taken lots of trips to various places and walked as much as practicable.

Mornings can be very difficult, and sometimes work can really grind on her (she has to take her heating pad to work a lot).

Boosterp, we are both 25. I have bad knees and hips and we always like to joke with each other in the mornings about how "old" we look moving around the apartment.

[boosterp]

Mornings can be very difficult, and sometimes work can really grind on her (she has to take her heating pad to work a lot).

Man, I know that feeling quite well. I love to joke that I am a young man trapped in an old man's body.

Boosterp, we are both 25. I have bad knees and hips and we always like to joke with each other in the mornings about how "old" we look moving around the apartment.

May I ask what happened to your hips and knees?


I was about to turn 24 when I had the surgical procedure that left my left wrist screwed. It was certainly a life changing event.

[El Mudo]

I was about to turn 24 when I had the surgical procedure that left my left wrist screwed. It was certainly a life changing event.



Wear and tear...I have some issues with arthritis, and pretty much wrecked my knees/back/hips working and a nerve problem in my neck

[boosterp]

Wear and tear...I have some issues with arthritis, and pretty much wrecked my knees/back/hips working and a nerve problem in my neck

After the wrist surgery everything else began to catch up. In my early 20's I tortured my joints and bones in the military leaving me with foot, ankle, knee, shoulder, and wrist problems mostly related to traumatic arthritis. I stay as active as possible to keep the joints flexible and mobile.

[MC Pee Pants]

My mother has this and it is a bummer. My brother and I help her as much as we can but it sucks hearing her in pain over it. She has had it for a long time and I dont know if anything shes taking really helps. I see this new drug advertised on TV, this lady paints and complains of pain in her wrist so strong she cant paint, but then is writing about her wrist pain in he diary. Its a stupid ass backwards commercial but i wonder if this new drug would be able to help.

[Thebazile78]

My mother has this and it is a bummer. My brother and I help her as much as we can but it sucks hearing her in pain over it. She has had it for a long time and I dont know if anything shes taking really helps. I see this new drug advertised on TV, this lady paints and complains of pain in her wrist so strong she cant paint, but then is writing about her wrist pain in he diary. Its a stupid ass backwards commercial but i wonder if this new drug would be able to help.

That's Lyrica, and it's available by prescription only. It helps some people a lot while others not so much.

My friend's sister was on Lyrica for a while for her fibromyalgia and she did pretty well on it, but there were a couple of things she had to keep an eye on, like weight loss/gain and allergic reactions.

Encourage your mother to talk to her doctor about her options. Lyrica might be a good one, but she also might be helped by gentle exercise like tai chi, Hatha yoga or swimming/aquaerobics instead of (or in addition to) the medications. It worked for Mudo's fiancee (which is awesome, by the way) ... and it may work for your mom.

[El Mudo]

My mother has this and it is a bummer. My brother and I help her as much as we can but it sucks hearing her in pain over it. She has had it for a long time and I dont know if anything shes taking really helps. I see this new drug advertised on TV, this lady paints and complains of pain in her wrist so strong she cant paint, but then is writing about her wrist pain in he diary. Its a stupid ass backwards commercial but i wonder if this new drug would be able to help.



Was that for Lyrica? She was on that for a while, and it worked pretty well for her, but it was also massively expensive, and she's been able to kick that now too.

[Thebazile78]

Was that for Lyrica? She was on that for a while, and it worked pretty well for her, but it was also massively expensive, and she's been able to kick that now too.

The commercial he's(?) describing is one of the first TV commercials for Lyrica. They kind of took their print ad and filmed it, which didn't exactly work.

I pay a lot more attention to the commercials than I do a lot of TV shows because, often, they're more entertaining than the show.