Let's talk about fibromyalgia.

[ilovelamp]

My aunt has it, she's a pill addict. God forbid she try complementary therapy, PT, or any of her other recommendations.

[zoidberg]

May 23, 2014 10:53:16 GMT -5 Jennyanydots said:

I had a prof who was a medical anthropologist in undergrad that ended up being a TA for. Her specialty is what is known as "culture-bound illnesses". These are illnesses that are frequently seen in certain cultures only. There are a lot of interesting examples. Literature tends to focus on "exotic" ones that seem silly to Westerners. Like people who get chest pains at night because they think demons are suffocating them in their sleep, or in India, men who have a very real, terrifying experience that they are constantly losing their sperm. But we have a lot in the Western world too. Some medical anthropologists put everything from fibro, CFS, multiple chemical sensitivities, PMS, IBS, Gulf War Syndrome, etc into these categories.

My prof told me that the important thing to realize is: the patients experience these as real. They aren't faking or hysterical or crazy (usually!). People with fibro feel pain, people with multiple chemical sensitivities do have terrible reactions, people with bad PMS do have terrible cramps, etc. BUT - distinctions can be made in that a) there is often no known medical explanation and b) they are often linked to particular cultural experiences and not experienced globally.

So they could be thought of as psychosomatic - they are physical manifestations of some kind of cultural/emotional/mental experience.

This was her take - I found it very interesting.

Wait, PMS? People in other cultures don't get cramps and sore boobs?

[vaportrail]

My mom "has" it along with every pain pill/sleeping pill/muscle relaxer under the sun. She's like a walking Rite Aid.

[rikki]

May 23, 2014 10:47:11 GMT -5 @randomcdn said:

May 23, 2014 9:17:52 GMT -5 rikki said:

Yep.  We started trying last month thinking that it would take some time (I had trouble in the past with my XH),  but it happened RIGHT AWAY.  EEEKKK.  They will be 17 months apart.

Your baby is adorable. 

Thank you so much.  I should probably update my signature with a newer photo, but I still love his birth one so much.

[fiveoclock]

I have it. I have a very high threshold for pain, but this type of pain is different. Even running a lint brush over my clothes hurt. I've never looked for, or taken, narcotics for it. I have been prescribed Elavil, which is an antidepressant known to help. It makes a difference. However, I don't tell anyone IRL because of the stigma (I've also passed judgement and eye-rolled about a fibro diagnosis in the past from several unreliable people).

[caddywompus]

I think Fibromyalgia is a term used for chronic pain symptoms, that the MD's can't lump under any certain diagnosis. It is often a chronic pain problem, where the nervous system gets "confused" and the pain signals get over-sensitized; to the point where any kind of sensation can become bothersome. Unfortunately, the patient gets sucked into the medical system searching for an answer- and ends up with even more drugs, and more diagnosis/labels.
I have heard that a program of Cognitive Behavioral Therapy along with a structured exercise program, and a lifestyle of activity moderation can be very beneficial.
Think of it as retraining the brain, and changing the persons behaviors in response to their pain.

[Deleted]

I just want to hug you @scottydeux

I think until you have chronic pain and don't know where it's coming from it's easy to think that fibro is just something that people 'say' they have for attention.  I know I felt that way.

I've been in chronic pain for 6+ months now with no real explanation up until recently.  It makes you feel crazy.  You feel depressed because you're always in pain, and it feels hopeless some days, especially when the pain doesn't seem to ease no matter what you do.  And what if it never goes away?  You get sick of thinking about the pain, you try to ignore, to bury it because even you are sick of talking about it.  It's very isolating and scary.

A little compassion goes a long way.  

[TC]

May 23, 2014 11:50:44 GMT -5 @scottydeux said:

 Say, you have a very traumatic series of events happen, and, one day, you just can't get out of bed. I think it occurs thanks to incredible stress over a period of time compromising one's immune system, leaving them vulnerable to dormant viruses/bacterial infections.

I don't know why in some cases, we acknowledge that stress and trauma can do horrible things to your body and immune system. But when it comes to fibro, people are so quick to call crazy/unstable/etc. I wonder what it is about fibro that generates so much hostility and judgement.

[kirra]

May 23, 2014 9:07:46 GMT -5 Lucy Honeychurch said:

May 23, 2014 9:04:32 GMT -5 aeg511 said:

The only people I personally know with fibromyalgia are unreliable.

See, THIS is why I think it's psychosomatic.  Or a convenient outlet for drug-seeking people, who imo are self-medicating for psychological issues of one sort or another.  

A minimum of 75% of women with Ehlers danlos syndrome are diagnosed with fibromyalgia before they get the EDS diagnosis. I was.

It's easier for the dr to diagnose fibromyalgia than to figure out what's actually wrong.

[Deleted]

I come across this a lot in my job. I'm of the belief that its psychosomatic, especially considering who prevalent depression/anxiety are in secondary diagnoses. I also see many people who are hesitant to accept a mental health diagnosis so their symptoms end up getting worse and they end up with dependence on heavy duty pain killers.

It's a diagnosis of exclusion, so many of the doctors I work with are skeptical of it's existence.

Hopefully I didn't offend anyone.

[TC]

May 23, 2014 13:14:44 GMT -5 toledo said:

May 23, 2014 13:11:37 GMT -5 TC said:

I don't know why in some cases, we acknowledge that stress and trauma can do horrible things to your body and immune system. But when it comes to fibro, people are so quick to call crazy/unstable/etc. I wonder what it is about fibro that generates so much hostility and judgement.

Gluten.

I saw that you quoted me and my stomach dropped because I assumed I was in trouble LOL

/overinvested

[Deleted]

May 23, 2014 13:26:28 GMT -5 @scottydeux said:

May 23, 2014 13:06:30 GMT -5 calamity said:

Calamity, we would have fun.  We could watch eighties movies and be grumpy/tired and it would be okay.

OMG, yes totally.

The other night my "me" night consisted of an Epsom salt bath, Bengay and a heating pad.  I watched The Wonder Years (kevin arnold) and fell asleep early.  You can hang with me any day

[racegrrl714]

May 23, 2014 10:36:41 GMT -5 TC said:

May 23, 2014 9:34:55 GMT -5 Booze Raccoon said:

My mother was diagnosed with fibromyalgia last year.  She is not a pill or attention seeker.  

HOWEVER, it was discovered that she had a hole in her heart and never knew it.  She was also in congestive heart failure and was carrying around 34lbs worth of fluid.  Since her heart surgery and subsequent weight loss (upwards of 50lbs so far) her fibro symptoms have vanished.  She is also no longer diabetic.  

I have no idea if these things are linked but I feel like it is more than a coincidence.  

My mom was diagnosed with fibro until her sleep study came in and it was found she had sleep apnea. Almost no issues since her cpap machine came.

Well this makes me feel hopeful! I just got a diagnosis of severe sleep apnea this week. I've been dealing with a  fibro diagnosis for about five years. I'll be getting a CPAP very soon.

Yes, I was diagnosed with fibro by both my family doctor and a rheumatologist. I like to think of myself as fairly reliable. I work a 40 hr a week job and miss more work staying home when my kid is sick than because of my own medical issues. I take no narcotics, wouldn't be functional if I did. I take Cymbalta, Naproxen (aleve), and tramadol daily. Muscle relaxers do nothing for my fibro pain.

I was diagnosed a few months after a very traumatic car wreck I was in where I nearly lost my left arm and was in the hospital for two weeks. I was on a day trip with my now husband one day after getting out of the hospital and I just could NOT stay awake, and every inch of my body hurt like it never hurt before. This went on and off for a month or two before the doctor suggested fibro.  I have good days and bad days. Good days, the pain is fairly well controlled and I have a bit of energy. Bad days, I have zero energy and I feel like I'm being drawn and quartered while simultaneously being burned at the stake. The best way to describe the pain I feel is think of the worst sunburn EVER, and then having someone repeatedly slap your sunburn as hard as they can.  All over your body. The fatigue? It's incapacitating at times.
I tend to have more flare ups between the seasons when the weather is changing. Rainy/snowy days are a special kind of hell. LOL I hope fibro is just a placeholder diagnosis or it's legitimized and a cure is found because there are many days when I can't imagine this being my reality for the rest of my life.  I don't like to talk about it because of the stigma attached to it, plus I just don't want to sound like a whiner. So I just kind of deal with it on my own.

[iamgrace]

Didn't read whole thread.

My mom claims to have fibro and in her case I believe it to be a combo of depression, poor eating and severe lack of activity. It's a convenient diagnosis for her in that it allows her to take meds, lay around her house and eat shitty food.

[TC]

May 23, 2014 13:46:43 GMT -5 racegrrl714 said:

May 23, 2014 10:36:41 GMT -5 TC said:

My mom was diagnosed with fibro until her sleep study came in and it was found she had sleep apnea. Almost no issues since her cpap machine came.

Well this makes me feel hopeful! I just got a diagnosis of severe sleep apnea this week. I've been dealing with a  fibro diagnosis for about five years. I'll be getting a CPAP very soon.

I hope you feel better! My mom's sleep apena was relatively mild and it still seems that it was the source of her problems-- which makes sense, oxygen and sleep deprivation both do terrible things to you on their own, but especially together! Her cpap machine has been life changing for her, especially once she really got acclimated to wearing it.

[Deleted]

((racegrrl714))

[kme]

As of now, I believe fibromyalgia is psychosomatic. But that doesn't mean that people who do suffer from wide-spread chronic pain have been properly diagnosed or that the pain isn't real. But if only psych meds help with your pain, then its psychosomatic.

[MWOS]

May 23, 2014 14:32:37 GMT -5 kme said:

As of now, I believe fibromyalgia is psychosomatic. But that doesn't mean that people who do suffer from wide-spread chronic pain have been properly diagnosed or that the pain isn't real. But if psych meds help with your pain, then its psychosomatic.

or, something that acts on neurons prevents the pain message from being sent to the brain

but you sound real smart so it's probably the thing you said

[keyslover]

People I know that were diagnosed with fibromyalgia were later diagnosed with late stage Lyme disease.

My feeling towards fibromyalgia is that it is a name given something doctors do not have the answers too. "Sorry you have x,y,z symptoms and feel like crap, but none of our tests show anything wrong. We are done with you" either Fibro or mental health issues.

[hi725]

Muscular, but I don't know what causes it. I have actually done manual therapy on people with it and there are palpable lumps in the muscle where their pain is.

[kme]

May 23, 2014 14:42:17 GMT -5 AutumnRose25 said:

May 23, 2014 14:32:37 GMT -5 kme said:

As of now, I believe fibromyalgia is psychosomatic. But that doesn't mean that people who do suffer from wide-spread chronic pain have been properly diagnosed or that the pain isn't real. But if psych meds help with your pain, then its psychosomatic.

LOFL. There are plenty of drugs that treat multiple symptoms and diseases.

Oh, and

You can get all "f-you" all you want but its childish to get all righteous at a different opinion when opinions were asked for in the OP. Your overreaction and hostility gives the impression that mental illness is something to be ashamed of.

As you know, fibromyalgia is not well understood. You can duck and cover all you want but there may well be a mental health component. We don't know yet. Fibromyalgia pain isn't like the pain we understand- there's no insult, inflammation, etc. It just shows up and can happen to anyone. If there is a mental health component, then who cares as long as there is treatment. It's nothing to get upset over. I'm not saying that you have it or that everyone will. Seroquel the most common psych med prescribed and why it works in some cases and not others is still unknown. If it effects neurons or if it disrupts the interpretation of pain signals is under research. Like I stated in the first part of my post, those who  only respond to antipsychotic mess may have a mental illness. Their pain may be hallucinatory.  I think its best to delineate between the two to ensure a standardized treatment plan. But it's astonishing how you're more caught up over words then a discussion on finding an appropriate treatment.

[peachykate]

I just typed out this long response that ended in a booyah so here is short version-


I was born, so that's a plus
Good childhood
High level gymnast, arthritis, back pain since I was 12
Car accident and then shingles in the same year. Never felt better after the shingles went away, but it wasn't normal shingles pain. Having arthritis this wasn't normal pain, there were times when DH literally could not touch me because I couldn't take even the slightest pressure on my body. Tests after tests and a year later they dx'd me with fibro. I went on lyrica and did water therapy, flare subsided after 2 years. Came off to have Jax. Still some pain but no where near after I had shingles. I also have endo and IC which are common "sisters" of fibro. You can't make that shit up since there are actual diagnostic tests and all.

Today-
I still have mild fibro according to my rheumatologist but most of my issues are strictly arthritis related and like @mwos said they are two totally different pains. If I get a massage and the person knows nothing about me they can tell there is something not right with my muscles. I take Cymbalta and it covers fibro, arthritis, and my anxeity- it's a wonder drug for me. I've never taken pain killers for fibro, if something is flaring I will go in for a cortisone shot. I do occasionally take them for my lower back and hips but that's from gymnastics.

Oh, and my stomach. I had issues forever, acid reflux, the non stop puking pregnancy and I finally found out last year that I have gastroperesis. Delayed stomach emptying so a normal person has digested 90% at 4 hours and I've digested 40%. I can't tell you how many times I was told I probably have a touch of IBS. There is no cure AND it may likely be from the shingles nerve damage. Just imagine me waving my arms in a circle, for me this is all related to shingles and it just pisses me the fuck off that the few people "you" may know are faking totally ruin your compassion for the people you know who might need it.

That's all.

[kme]

May 23, 2014 17:25:04 GMT -5 AutumnRose25 said:

May 23, 2014 17:17:03 GMT -5 kme said:

You can get all "f-you" all you want but its childish to get all righteous at a different opinion when opinions were asked for in the OP. Your overreaction and hostility gives the impression that mental illness is something to be ashamed of.

As you know, fibromyalgia is not well understood. You can duck and cover all you want but there may well be a mental health component. We don't know yet. Fibromyalgia pain isn't like the pain we understand- there's no insult, inflammation, etc. It just shows up and can happen to anyone. If there is a mental health component, then who cares as long as there is treatment. It's nothing to get upset over. I'm not saying that you have it or that everyone will. Seroquel the most common psych med prescribed and why it works in some cases and not others is still unknown. If it effects neurons or if it disrupts the interpretation of pain signals is under research. Like I stated in the first part of my post, those who  only respond to antipsychotic mess may have a mental illness. Their pain may be hallucinatory.  I think its best to delineate between the two to ensure a standardized treatment plan. But it's astonishing how you're more caught up over words then a discussion on finding an appropriate treatment.

But "psych drugs" are not only approved for the exclusive treatment if mental illness, many if them are also approved for use in treating physical symptoms of non psychological diseases or symptoms too. 

Like Duloxetine. 

I think you may have missed what I said. Antipsychotic may be effective in the blocking of peripheral neurotransmitters (eg, like you're stating) or to treat pain as hallucinations (eg, mental health). Psychologically they can be used in both and successfulness is being investigated.

So what was the f-you for?

[MixedBerryJam]

May 23, 2014 9:16:07 GMT -5 rikki said:

... (had to stop the drug now that I am pregnant), ...

I missed this announcement! Congratulations!

[MWOS]

May 23, 2014 14:32:37 GMT -5 kme said:

As of now, I believe fibromyalgia is psychosomatic. But that doesn't mean that people who do suffer from wide-spread chronic pain have been properly diagnosed or that the pain isn't real. But if psych meds help with your pain, then its psychosomatic.

The psych meds helped. Looks pretty fuckin psychosomatic to me!

[kirra]

May 23, 2014 14:32:37 GMT -5 kme said:

As of now, I believe fibromyalgia is psychosomatic. But that doesn't mean that people who do suffer from wide-spread chronic pain have been properly diagnosed or that the pain isn't real. But if psych meds help with your pain, then its psychosomatic.

I'm guessing this is what the fuck you was for. 

[kme]

May 23, 2014 17:44:51 GMT -5 AutumnRose25 said:

May 23, 2014 17:32:20 GMT -5 kme said:

I think you may have missed what I said. Antipsychotic may be effective in the blocking of peripheral neurotransmitters (eg, like you're stating) or to treat pain as hallucinations (eg, mental health). Psychologically they can be used in both and successfulness is being investigated.

So what was the f-you for?

Omfg.

I have used a "psych drug" to treat pain for osteoarthritis in my knee and shoulder. 

There is zero psychological component to the pain I had ( I no longer use the Cymbalta but it was the only thing that helped initially)

So saying that someone only gets relief by using a "psych drug" for actual physical pain because it was "in their head" is fucking stupid. 

Once again, you're missing what I said. I said it may not pertain to YOU, but it could be the case for others. I'm not the one who's saying it could be all in their head, but it's being researched. Since Cymbalta worked for your pain, it wasn't in your head ( AND AGAIN, please comprehend. Antipsychotics can act in different ways in pain response. In your case, it was probably the regulation of serotonin and norepinephrine at peripheral neuron sites that provided you relief). And just because a mental health compnent is under investigation doesn't mean that it's true- that's why it's being looked into. Don't blame me for It.

You're trying to make something out of nothing.

[kirra]

May 23, 2014 18:25:21 GMT -5 kme said:

May 23, 2014 17:44:51 GMT -5 AutumnRose25 said:

Omfg.

I have used a "psych drug" to treat pain for osteoarthritis in my knee and shoulder. 

There is zero psychological component to the pain I had ( I no longer use the Cymbalta but it was the only thing that helped initially)

So saying that someone only gets relief by using a "psych drug" for actual physical pain because it was "in their head" is fucking stupid. 

Once again, you're missing what I said. I said it may not pertain to YOU, but it could be the case for others. I'm not the one who's saying it could be all in their head, but it's being researched. Since Cymbalta worked for your pain, it wasn't in your head ( AND AGAIN, please comprehend. Antipsychotics can act in different ways in pain response. In your case, it was probably the regulation of serotonin and norepinephrine at peripheral neuron sites that provided you relief). And just because a mental health compnent is under investigation doesn't mean that it's true- that's why it's being looked into. Don't blame me for It.

You're trying to make something out of nothing.

1. Direct quote: "if psych meds help with your pain, it's psychosomatic." Complete statement with no qualifications. This was before you brought Seroquel into the conversation.
2. From googling, most of the Seroquel research said that it was helping with sleep but not necessarily pain. 
3. I don't think people are angry that they're looking into mental health possibilities. It's that you said "psych drugs" (not antipsychotics, just "psych drugs") helping means that your pain is psychosomatic (completely in your head with no underlying physical cause). 

And also stating that you think fibromyalgia is psychosomatic is a pretty asshole thing to say. It's a common misdiagnosis for when they don't want to look any farther or just aren't aware that the actual disorder exists (for example Ehlers Danlos syndrome). 

[kme]

May 23, 2014 18:33:30 GMT -5 kirra said:

May 23, 2014 18:25:21 GMT -5 kme said:

Once again, you're missing what I said. I said it may not pertain to YOU, but it could be the case for others. I'm not the one who's saying it could be all in their head, but it's being researched. Since Cymbalta worked for your pain, it wasn't in your head ( AND AGAIN, please comprehend. Antipsychotics can act in different ways in pain response. In your case, it was probably the regulation of serotonin and norepinephrine at peripheral neuron sites that provided you relief). And just because a mental health compnent is under investigation doesn't mean that it's true- that's why it's being looked into. Don't blame me for It.

You're trying to make something out of nothing.

1. Direct quote: "if psych meds help with your pain, it's psychosomatic." Complete statement with no qualifications. This was before you brought Seroquel into the conversation.
2. From googling, most of the Seroquel research said that it was helping with sleep but not necessarily pain. 
3. I don't think people are angry that they're looking into mental health possibilities. It's that you said "psych drugs" (not antipsychotics, just "psych drugs") helping means that your pain is psychosomatic (completely in your head with no underlying physical cause). 

And also stating that you think fibromyalgia is psychosomatic is a pretty asshole thing to say. It's a common misdiagnosis for when they don't want to look any farther or just aren't aware that the actual disorder exists (for example Ehlers Danlos syndrome). 

I understand that unused psych meds as a broad statement. But a majority of psych meds affect neurotransmitters. Why Seroquel is a frontier to a treatment, I don't know, but I guess in their anyone of them could work. The use of Seroquel is off-label. I don't know why Mr. Google didn't give you any results. Do you have access to a medical journal database?  That will yield more info on the subject.

I acknowledge my last statement was wide. But the bottom line is, no matter if your pain is "real" or a mental illness, I only care about it being relieved and not a label.

[nursewife]

These conversations make me a bit uncomfortable. I hate that it's a diagnosis that has a lot of shame attached to it. Like many others, I was diagnosed this year after a bad car accident 2 years ago. The pain started off as whiplash, but never went away. My muscles ache, but also burn. I feel I'm a reliable person. I work and rarely can in sick and don't consider my self lazy, and am definitely not a pain med addict. It's frustrating to have a pain condition that people seem to think I can just 'get over'. Attitudes some in this post are a reason why I don't share about it much IRL.