[Initiative]

Ok so I went and saw a doctor today that was supposed to report to the state and then they would decide whether I'm "disabled enough" to receive medical. The doctor basically told me that my pain wasn't real and depression was the cause; if there were any sign of fibromyalgia (if it is even real) then it would stem from your depression as well. No sh*t I'm depressed I already had depression and now I am in pain every day for no reason. Like that doesn't have grounds for suicidal thoughts. He was such a jerk. I'm just thinking about and more scared that I'm only 20 and having such horrible issues, and what about when I'm 50? I'm supposed to be in my prime of age and I can barely walk some days. How does he think I'm supposed to handle this? But no my depression is the cause because I have had that for so much longer. Sorry about my rant I am just deeply troubled by what the government has shown me. How hard is someone that is truly not able to do much of anything supposed to fight the system? It's difficult to take one college course while still taking care of myself. I even have to do that online because I can't sit in the classes for that long.

>_< Just would like some positive in this world of sorrow.

[kaplods]

Get a disability attorney (they only get paid if you win your case and they can only take so much).

Even before I fought for disability, when I was just fighting for diagnosis and treatment, I dealt with doctors who weren't listening to me. I was willing to consider depression (by the way, you can be on disability for depression), but I wasn't willing to have a doctor who wasn't listening to me, especially when treatment wasn't working.

I too had doctors who said fibromyalgia didn't exist, or that fibromyalgia is "always" a symptom of depression. They were full of poop. It took me a couple years and a moving into a new state, to find a doctor knowledgeable in fibromyalgia (a neurologist, very smart guy. He taught me a lot. And he did more than just believe me, he helped me find treatments that were actually helpful).

I know it's very hard, especially when you can't get doctor's to understand or believe you, but you do deserve a second opinion and a doctor willing to work with you.

Maybe despression is your primary issue. Maybe it isn't. Have you been prescribed Lyrica or Cimbalta - both are used for depression-pain and fibromyalgia-pain, and other pain as well. If they work, it doesn't matter what the "cause" of your symptoms are.

I'm not taking either Lyrical or Cimbalta. My husband was prescribed them (for the pain of diabetic neuropathy), and he couldn't take them because of side effects (and the one worked great but was so expensive that he was willing to take the medication he'd been on that didn't work as well).

I'm not taking them because of the price and the fact that I've been very hesitant to change my drug regimen, because it's working fairly well for me. For the fibromyalgia, I'm on amitriptyline (an old antidpressant), and cyclobenzaprine (a muscle relaxant) at bedtime to help me get deeper sleep and tramadol for pain.

The sleep study was vital, because it showed that I was spending virtually no time in deep, restorative sleep (which is why the sleep meds are so important). Sleep deprivation is my biggest trigger, second is drastic weather change (we suspect barometric pressure, temperature, and moisture to be the biggest factors Even sudden "improvements" in weather can cause a flare).


I strongly recommend a health journal, so you can find your own triggers.

A good one is HEALTHMINDER Personal Wellness Journal (a.k.a MemoryMinder Personal Health Journal) Health Diary and Symptoms Log [Spiral-bound]
F. E. Wilkins

Look inside the book at amazon.com
http://www.amazon.com/HEALTHMINDER-P...9381450&sr=8-1



You can buy the book or you can look inside and create something similar yourself.

It helps doctors see what you're experiencing, and even more importantly it helps you find patterns so that you can better treat or prevent flares.

Also check for fibromyalgia and chronic fatigue support groups in your area (they're considered overlap diseases, so even if you don't fit the cfids criteria, the support group will be helpful because you'll find people with symptoms of both going to the support groups. You'll learn a lot of helpful tips and you'll learn which doctors in your area are familiar with fibromyalgia and other pain and/or fatigue disorders.

Yes depression often is a cause of pain, but it doesn't really matter where your pain is coming from, you need to have it treated.

[Initiative]

I've been prescribed all kinds of antidepressants similar to those but the main brands, I can't afford that, the state wouldn't pay even when I did have medical. I know I don't sleep. I am always up with pain, I hardly have dreams either. I used to dream a lot more than after I started having problems. I've taken many sleeping medications too. Every medication I've taken I need to switch within 2 months because it's stopped working. It slightly works after my body adjusts then plummets. I can't take that kind of stress on top of what I already have going on. Sleeping medicine doesn't help me either; I just wake up the same times and feel even more horrible because I'm extremely tired along with being in pain. I'm miserable no matter what I do and they are acting like a 10 minute interview will tell them every detail of what I have to live with every day. Don't get me wrong I try to eat healthy I work out as much as I can and this prick doctor told me to exercise more. -_- 100 situps a day and walking around the block a couple times a week is the best I can do right now. I don't even make that sometimes because I'm in so much pain but I try my best because if I don't try to push through it I'll just end up bed ridden for months like last year. (Sorry I'm very frustrated; I'm at a loss besides having to jump through a bunch of hoops with pins and needles sticking out of them O_O). I just can't stand people that stand on a pedestal and tell me how I need to do things they know nothing about. I wish I had a real doctor, not just someone paid to turn there nose at me.

[kaplods]

My husband and I went through a lot of this too. It's really hard to get decent health care when you don't have good insurance.

I was "lucky" that we ran out of drug coverage a couple years ago. My current meds are all on the Walmart/Sam's Club discount list (most are $4 per month).

Two books I'd greatly reccomend are

Fibromyalgia and Chronic Myofascial Pain: A Survival Manual by Devin J. Starlanyl and Mary Ellen Copeland

The Fibromyalgia Advocate by Devin Starlanyl


The author is a doctor who has fibromyalgia herself. Personally, I think she tries to be too comprehensive, including some treatments that are more "voodoo superstition" than science, but that may also be my prejudices against unproven therapies. I want to know what's been proven to work, not what one acquaintence of the author, found helpful.

But I also understand the "it can't hurt to give it a shot," logic.

Overall both books are very good, and can be bought used on amazon.com for under $11 including shipping (under $5 if you buy older editions).

My experience with fibromyalgia and autoimmune disease ("mystery diseases" at least in the initial stages of attempts to get a diagnosis), has changed my view of doctors. Even the best doctors are only a health resource. They don't know more about our bodies than we do, so while they can help us, they can't know what's best for us. We need to know the doctor's limitations, and we need to find doctors who know their own limitations as well.

The second book, The Fibromyalgia Advocate is really helpful in communicating with your doctor. It even contains sample letters to give to your doctors.

They can be a little dry reading (like a textbook) but I found a lot of helpful information in both of them.

[fatmad]

difficulties like this are not just common in the US. My husband had(has) chronic fatigue syndrome. (asymptomatic these days, unless he gets stressed out) We went to a few doctors before he found one who was helpful. For all that about half of all physicians don't even believe in chronic fatigue and fibromyalgia etc., if you tell your life insurance company they decide you have an autoimmune disorder and raise your rates. They believe in it, no problem. Damned if you do, damned if you don't.
I think having a doc that doesn't even believe in the disease make a decision about coverage is not appropriate or fair.
what a drag.
On the plus side, trying out anti-depressants until you find something that helps can be really good. After a car accident I had chronic pain. I remember with joy my first painfree hour in over 6 weeks, a little after starting zoloft. I was able to wean off it a few months later and have not suffered a lot of pain afterward. Pain relievers did nothing for that pain. Don't give up on meds that might help.

[new me4life]

i'm commenting on this because my daughter is 18 and was just diagnosed with fibromyalgia after having every test you can come up with run on her from the time she was 10 years old. apparently several years ago the specialist diagnosed her but her doctor did not believe the diagnoses so completely ignored it and treated her for depression and a stomache condition (which we now know she doesn't have) it was only when she went to another doctor that she was diagnosed correctly. what i'm trying to say is see another doctor. some doctors do not want to beleive that you could have this and as they did with my daughter, basically called her a liar and ended up making her deal with it longer and get worse and worse.

[Initiative]

The state sends everyone to designated state disability doctors. They are all jerks. I've seen two so far and they treated me like I was fine, they just looked past what I was telling them. I'm fighting to get my medical back to see the doctor I've had since I was 8 years old and he has always listened to me. I want to get further tests done but these disability doctors keep turning me down.

[kaplods]

The doctors the state sends you to to determine your disability are not "your" doctors. While they're supposed to be impartial, how can they be when they're getting paid by the "side" that loses if you win? There's a built-in conflict of interest.

Don't count on these doctors to help you. It's not their job to help you, it's not even to diagnose you - it's to determine whether you have a disabling condition and whether you're actually disabled by it. They're only job is to determine your functioning level.

You can't count on them giving you any advice or treatment, or if they do that it's in your best interest.



I'd recommend that you call a disability attorney - they don't get paid unless you win your claim, and they can only take a certain percentage of your first check (and that's all they can get).

The consultation is free, and as a sided bonus sometimes you get lucky and they might actually know a good doctor. My disability attorney happened to know a doctor who was very knowledgeable about fibromyalgia (he played golf with the guy). That doctor turned out to be the best fibro doctor I've ever had - not only knowledgeable, but sympathetic too. He also helped me get onto medications that helped.


You're in a bit of a bind regarding the disability process. Without having a doctor, the state can and probably will argue that you're not "truly disabled" or that your condition can't be as bad as you say, because you aren't seeking or complying with treatment. If the state doctors give you recommendations (even if you think they're stupid or even dangerous) and you don't follow them, the state will argue that you're not trying to get better. They'll argue that you wouldn't be disabled if you were complying with their treatment recommendations.


You'll get angry enough to make yourself sick if you think about how unfair this system is, so I'll ask you to try to think of it this way (it doesn't make it right, it just makes it a little easier to avoid rage that only destroys you):

Only a small fraction of the disability applications are legitimate. Some people are applying for reasons they don't realize qualify (like a normal pregnancy, or a broken bone that will heal). There are people who are intentionally faking, and there are people who will be able to return to work with treatment they may or may not know exists, treatment they may or may not have encountered. There are also people who aren't willing to pursue treatment that would return functioning.

It's a giant mess of red tape, and the state's job isn't to help you get better, it's just to determine whether or not you fit the criteria for disability. It's "your job" to do all of the rest - to get the diagnosis, pursue and comply with treatment recommendations, find work that you can do or prove that there is no work you can do (if there's even one job on the planet you can do, the state will argue that you're not disabled).

With fibromyalgia, this sucks tremendously because stress makes the illness worse. If you were able to focus on getting better as your first and only major priority, it would increase the likelihood of you being able to avoid permanent disability, but it's hard to get better when you can't even afford medical treatment in the first place. It's the catch 22 of the system, but it is what it is, and you've got to deal with that.

The disability process is a lot of work, so much so that when I was going through it, I thought "If I could do this, I would be working."