fibromyalia/ME

[alice144]

Apologies if I got the wrong section. I'm new here!

Anyone at infjf have fibromyalgia or chronic fatigue syndrome? How do you explain to people that it's not depression?

Thanks.

 

[Zebraf301]

I don't have it, but I believe you. Trying to explain to some people that it's not all in your head, is like trying to explain to some people that you have some sort of sixth sense. Just because it's difficult, objectively, to quantify, is no proof that your symptoms are not real. If you've not already done so, it may be in your best interest to consult a homeopath. A reputable one. Western medicine is far too primitive to give it any right to attempt a treatment, but it's in an MD's oath, to at least try, if treatment isn't harmful, to the best of their knowledge. Most rheumatologists just throw their hands up in the air. The other thing that always crosses my mind when fibromyalgia is mentioned is, it's a cluster of symptoms, what if researchers have been too quick to give title to the cluster. I wonder sometimes, if it's a blanket term. When under a microscope, so to speak, may contain differant ailments under the same blanket, that should not be together. Part of me wonders if it's a reactive, autoimmune issue, too many synthetics interfering with the body's ability to function at an optimum level. As with all conditions, fibromyalgia being a very strong example, can be muted with organic exposure pushed to the max. Western medicine, is most definately, a black art, that may be effective with basic mechanics of the body, but is still, extremely primitive. I'm sorry to hear that you struggle, it can feel like a lone journey. A Fibromyalgia support group may be surprisingly productive for you though.

 

[alice144]

Interesting ideas; we seem to have come to similar conclusions.

I'm pretty sure that fibromyalgia and chronic fatigue syndrome are different manifestations of the same, underlying neurological disorder. It's just that we don't really know so much about the nervous system and brain, and therefore are reduced to blanket generalizations.

Western medicine is pretty amazing, but it doesn't work too well when there's no empirical evidence at hand. Chinese medicine I see as less developed, but at least it addresses the problem! I've visited acupuncturists from time to time, with some success. The homeopaths I've seen haven't impressed me much, unfortunately, but maybe I haven't met the right one, yet.

Do you work in medicine? You seem to know a lot about this.

I guess I'm returning to my original question. Has anyone on this forum ever had a medical conditions or other serious problem in their life that affected them so much that others thought they were suffering from a mood disorder? How do you deal with that? Thanks.

 

[Nixie]

I think the problem is that when you have an underlying physical condition, it can result in a mood disorder/depression. I have RA and there are days when the underlying pain I feel makes me more than a little cranky. It is very common for someone with a chronic condition to become depressed.

 

[alice144]

Hm. But do people you know know you have a health condition. Do these people know what RA is? What about people who you don't know so well, say, your coworkers?

I really want to dig very deeply into this. Thanks.


I really hope I'm wrong on this, but I'm beginning to believe that fibromyalgia is one of the worst things you can get, ever! At least people with cancer get adequate health care and support! My friend Christine is diabetic, and we had a lot in common as far as problem we faced related to our condition. But at least she can find doctors who will treat her! For me, the best thing so far has been to ask the shrink in my family to write scripts for stuff that I think will work and go from there. Definitely not ideal.

 

[Nixie]

I would like to add that I don't have depression. However I think you have to be willing to look at yourself critically when you have a chronic condition. I think if you know your physical limits and treat yourself with kindness, that can go a long way toward making your pain less.

There are times when I feel incredibly fragile and hurt terribly but I am awful and don't let anybody know. I have to work on being able to be kinder to myself. I despise being ill and I try not to let that anger poison my life. I guess the bottom line is that I think anyone with a chronic medical condition has to DEAL with emotional issues attached to it--no point in deluding yourself. If it is depression, it is depression. However, sometimes it is just a matter of not feeling well and not wanting to explain that--it can be difficult. I tend to just not say anything. Why bother? It will pass and I will feel better. If someone I don't really care about thinks I'm a moody, depressed beyoch--whatevah--one less person I have to worry about wanting to eat lunch with me.....LOL

 

[Nixie]

Most of the people who need to know, know about my RA. I think one of the funniest things was going to a store and my RA was BAD. I was barely able to hobble--walking like an old woman because my knees were hurting bad. (thank god, that isn't very often) Some ass got all rage road with me because he had to wait for me to cross in front of him. Screamed obcenities and raced by really close to me. *shrugs* I think you just have to deal with people who don't give a flying fart if you are sick or not.

I think FM isn't well understood. I think like Chronic Fatigue, it is generally thought of as a maligning type of disorder--kinda in the person's head. I would be frustrated if people thought my chronic pain was all in my head. I dealt with my diagnosis by doing a lot of research on it.

 

[Zebraf301]

Hm. But do people you know know you have a health condition. Do these people know what RA is? What about people who you don't know so well, say, your coworkers?

I really want to dig very deeply into this. Thanks.


I really hope I'm wrong on this, but I'm beginning to believe that fibromyalgia is one of the worst things you can get, ever! At least people with cancer get adequate health care and support! My friend Christine is diabetic, and we had a lot in common as far as problem we faced related to our condition. But at least she can find doctors who will treat her! For me, the best thing so far has been to ask the shrink in my family to write scripts for stuff that I think will work and go from there. Definitely not ideal.

Chemo, is so far from being ideal. It's actually very barbaric. It can be fatal. Many aren't even candidates, so they are basically given an estimate on how long they have to live, and that's not even life without pain, or nausea, etc. I could go on, and on, and on, and on about other examples of futility, with regard to medical conditions, but to what avail... Your story, is about the loss of hope.

I understand you are feeling defeated right now, thus the lens you are seeing through at the moment. It can be hard to change your lens when you are down. There's a tendancy to get tunneled vision for what you perceive as being the thing that holds you down. You speak like someone who has lost hope. You need some inspiration to recharge your batteries, and oddly, hope doesn't have to come from anything fibromyalgia related. It just has to be strong enough to reset your perspective. Look around in your life, and be open to things that can make you feel inspired, then take it from there. Concede to live with the fibromyalgia for now, but allow yourself to be recharged in other areas. I can guarentee you fibromyalgia will improve as a biproduct of a passion filled life. Hope is an extremely strong remedy.

 

[Zebraf301]

i've been diagnosed with fibro. the pain was so bad before i was on meds that i did want to kill myself, so i went on anti-depressants and was diagnosed with a mood disorder before any of my pain issues were addressed. i am still on them.

when my pain levels are at a manageable level my moods are surprisingly stable. i haven't had any luck with my psychiatrist about depression. i suppose she doesn't want to connect the dots. i'm not in pain because i'm sad. i'm sad because i'm in pain.

I completely know where you're coming from on that one. Mine is endometriosis though, which gave me pain worse than labour pains, which I didn't know was possible. I broke a tooth from clenching so hard. I was so desperate for the pain to end, that my options seemed slim. I honestly was starting to think that death was the only escape, when I'm normally a well adjusted person. And I have a loving family, who I'm far from expenable to. Nothing helped the pain, just keeping my bladder empty stopped me from, God what, dying? I don't know. I was delirious with pain.

 

[Nixie]

I think the worst thing about having chronic pain is the suspicion of the doctors--being treated like a junkie for asking for pain pills. I've been offered oxycontine for my RA but turned it down because it gives me migraines. However I do take Tylenol 3 (with codeine). That stuff is like a miracle pill to me. It helps me function on days when I hurt. One doctor told me I was just masking the pain, I was like--mask away. You build a tolerance to the pain--or at least I did. When they ask what is your pain level and I say 5--I'm pretty sure it would be a 8/9 for someone who doesn't live with chronic pain. I usually say it isn't a matter of IF I'm in pain, but how much. I'm used to a low level amount of pain almost everyday.

 

[Zebraf301]

I think the worst thing about having chronic pain is the suspicion of the doctors--being treated like a junkie for asking for pain pills. I've been offered oxycontine for my RA but turned it down because it gives me migraines. However I do take Tylenol 3 (with codeine). That stuff is like a miracle pill to me. It helps me function on days when I hurt. One doctor told me I was just masking the pain, I was like--mask away. You build a tolerance to the pain--or at least I did. When they ask what is your pain level and I say 5--I'm pretty sure it would be a 8/9 for someone who doesn't live with chronic pain. I usually say it isn't a matter of IF I'm in pain, but how much. I'm used to a low level amount of pain almost everyday.

I'm glad oxycontin didn't work out for you. You would've ended up with more pain in the end. That stuff is the spawn of the devil. Heroin used to be a prescription drug too, if you catch my meaning.

 

[AKM]

Apologies if I got the wrong section. I'm new here!

Anyone at infjf have fibromyalgia or chronic fatigue syndrome? How do you explain to people that it's not depression?

Thanks.

Welcome
I have been told by a doctor that if he "believed" in fibromyalgia, he'd have diagnosed me with it. I'm used to a certain level of pain that it has to spike for me to notice. That is random and useless in response to your question.

This is somewhat relevant: I used to get very depressed frequently, and anti-depressants didn't work (I tried several.) Only in the last couple of years was I able to find out that I had some issues with my gut caused by food allergies I hadn't known about. It caused inflammation and imbalance affecting absorption of nutrients and stressing my immune system constantly, both of which were causing the majority of the depression. Now as long as I eat well and take my probiotics and a good multivitamin every day, I do fine. When I stop one or the other I start sliding again. (Relevant in that being depressed is not necessarily "depression" no matter how easily they like to label it as such.)

As for how I deal with it...I get really bad after a few days (depressed, etc.) and sometimes kick myself into doing what I need to do or my husband does. When other people have issues with how I'm reacting, sometimes I'll tell them that I haven't been eating well and my system is stressed, or I just leave it as being in a bad mood for a few days.

 

[alice144]

Medicine is so messy. Whenever I start reading up on this stuff, I first get the simple, general answer, but then that's not enough and so I find myself on an article about protein suppression or copper's role is a specific cell process. Which is relevant, yeah, but meaningless to me as I lack the appropriate background to put it in the proper context.

That said, I've been in and out a lot of hospitals in my time, and I've been able to have legitimate discussions with physicians just because of the stuff I've picked up here and there. And I really don't know very much about biology, not at all.

Thanks to everyone for sharing your stories. It feels good to know I'm not alone.

 

[Marinag]

[MENTION=4283]alice144[/MENTION] have you ever read the spoon theory? I think it's the best explanation I have ever run across. You can read about it here http://www.butyoudontlooksick.com/a...poon-theory-written-by-christine-miserandino/

I was told that I most likely has fibro 9 yrs ago, 4 yrs ago they told me that it was most likely not fibro but MS, now as of today they are saying they don't know what's causing my pain/symptoms but are sending me to a physiatrist (nerve, muscle, and bone expert) to try to figure what is going on with my body. Regardless I still think the spoon theory makes sense

 

[alice144]

Yes! The spoon theory is fantastic! But what a work-intensive way to get your point across. I suppose it may be necessary, though.

now as of today they are saying they don't know what's causing my pain/symptoms but are sending me to a physiatrist (nerve, muscle, and bone expert) to try to figure what is going on with my body.

Better a physiatrist than a psychiatrist. Hur hur hur...