Pain relief improves fibromyalgia sufferers' lives --via Yahoo! News

This sounds quite promising!

God knows it's about freakin' time that fibromyalgia patients need something to help them manage their pain better. This sounds like something that I'd like to investigate further when funds and a job with medical bennies permits.

I have now gone over the 2 1/2 year mark since I had regular care for my FMS. Tylenol to aleviate the pain just doesn't cut it any more, and the drugs I was taking (courtesy of my brother in law, the doctor) have come under a serious cloud.

I also decided that I would not go to a Administrative Law Judge hearing, so I let the deadline come and go. What I think I'll do instead is wait for my name change (regaining the use of my maiden name after my divorce) to be recognized by SSA, then reapply under that name. At the very least, I should get some kind of compensation for the nearly three years I was unable to work a full time job because of my FMS symptoms. Even now, going to school, I'm still in a great deal of pain a lot of the time, and am constantly exhausted (I take what I've referred to in my other blog as my "infamous three hour naps").

There is someone who is becoming a big part of my life who I need to educate on the facts about fibromyalgia. He'd never heard of it until I told him I had it. I need a gentle way to approach the subject with out scaring him off.

Any suggestions?


--MorelaterZ--

Uh, oh...this is not good.

Let me tell you about my feet.

No, nothing like that; nothing nasty or gross. Just that my feet are killing me on a daily basis now. Or, rather, just my right foot.

In addition to the FMS, I also have RA. The RA is what I'm having trouble with now, in addition to the crap that FMS puts me through (can we say three hour naps?).

The makers of Tylenol will probably make a mint off me alone, I buy so much of their products.

Unfortunately, it doesn't seem to help the RA that is slowly and painfully taking over my right foot, especially if I have to stand for long periods of time, like I did the other night. Not only was I in a great deal of pain, but then both my feet cramped up on me to the point where I thought I was going to have to call someone to get me and drag me into class. Literally drag...

The last time I worked my security job, my right foot was hurting so much that I could barely put enough pressure on it to depress the gas pedal and drive home.

As one of my sons says, "Welcome to Hell. It gets a tad warm."

Welcome to my world. The world of near constant pain, fatigue, no health insurance or money to speak of, and me pushing myself beyond my limits because I want to excel in school.

It's a hard knock life...but I knock right back. I have to. I don't want to be in the same place I was a year ago, when I seriously thought about ending my life because the pain and the depression was almost too much for me to bear. I have a life, a future now, and I have to keep going. No one's going to hand me anything I didn't earn.

Isn't it painfully obvious that SSA didn't think I deserved Disability and SSI? I worked for years to earn the right to claim Disability and SSI in the event I could not work. So when I try to claim what I think is rightfully mine, they shoot me down.

But I gotta keep on keepin' on. It's the only thing I have left.

--MorelaterZ--

This is insane...

I worked for 2 1/2 hours Saturday afternoon, and my ankles, especially the right one, hurt like crazy! It took a lot of effort to even put weight on my right foot because the ankle hurt so much.

Driving home was torture! I was using the accelorator with my big toe, because it was the only point on my right foot that didn't hurt. Even when I was sitting still after I got home, there were shooting pains so strong I winced.

So this is what RA is going to do to me. As if the pain I feel from the FMS wasn't bad enough, or constant enough, now I have this to contend with.

Great. Just great.

I requested a hearing before an Administrative Law Judge, which I know I won't get for at least a year. Maybe I won't need it, I don't know. I just hope that all I've been going to school for isn't for naught because I'm in too much pain to work full time.

Pesonally, I think SSA should pay me at least for the time I was truly unable to work, between May 2002 and March of 2005, when I went back to school. I don't care what their so-called "experts" say, I was not able to work between those dates because I was in pain, both physical and mental. Imagine all the people who fall through the cracks because someone in a position of authority doesn't think they are disabled enough.

Maybe they're just hoping I'll get frustrated and give up. I want to work, and I'm going to school to learn a new industry so I can go back to work, but what about the nearly three years I was unable to work? Shouldn't I get something for that? Some kind of compensation for my pain? I wold have worked during those three years if I could, but I could not.

I need a major break.


--MorelaterZ--

I'm just thinking about it at this point

but I'm considering not asking for an Administrative Law Judge to review my case.

It will take nearly a year to get a hearing date, and I don't think I have the strength, mentally or phyisically, to wait that long.

When I'm done with school, I hope to have a job before I can get an Administrative Law Judge to reconsider my case.

I suppose I could put in for it anyway, then if I am employed by that time, I can cancel it.

I really need to get in touch with that lawyer!



--MorelaterZ--

I've been down this road before...

and I don't like the return trip I may have to make.

Heard from SSA on Friday. Turned down again. Next step is Administrative Law Judge review. A process that takes damn near a year to get to.

They feel that I'm not disabled enough to get benefits. They feel I can still sit at a desk for eight hours a day and do a full time job. I know I can't. I can barely get thru the part time job I have now that pays me next to nothing. I'm in quite a bit of pain after 5 hours at school in which I am allowed to move around at my leasure. I'm still taking 4 and 5 hour naps every day because I'm exhausted.

I'm still depressed, though it has been better lately. They said that I am not depressed enough to keep me from working. They should have seen me this time last year, when I seriously considered suicide.

What did they do, talk to my sister who, to this day, thinks I'm faking the whole thing for attention and sympathy? Believe me, if I wanted attention that badly, I'd do something other than fake chronic pain, exhaustion and depression. Unfortunately for her, everything I am feeling is all too real. Before I was diagnosed with FMS, I didn't even know what it was, much less know enough about it to fake it.

On Tuesday (5/31) I'm calling the lawyer I can't afford to get his ideas about how to convince SSA I really do have a problem. I work because I have no choice, I need the money. I'm going to school to learn a new trade so I can make money, but that takes time (at least 6 more months).

So that long road to this point has come to an all too familiar crossroad. In September, it will be three years since I originally filed for Disability and SSI in Massachusetts. Maybe, in retrospect, I should have stayed there. I might have had it by now.

But, then, I wouldn't have come to this point in my life.

Whatever doesn't kill you makes you stronger. Well, shit, I should be fucking Hercules by now!


--MorelaterZ--

R-E-S-P-E-C-T (find out what it means to me...)

I started to leave the following comment over on my friend, Johanna's blog, but it got to be so long that I thought I'd post it here instead:


Though there are times that I'd just like to strangle doctors who suggest that my medical problems and my chronic pain are all my fault. They're not me, and they don't know me better than I know me. There is no real motivation to lie about how I feel. I just want to feel "normal" again, period. There are some quacks out there who suggest that all my problems would be solved if I lost weight, but since I've had these problems (long before I knew what they were called) for most of my life, how do they know that the excess weight I carry is the cause of all my problems? I think it's a symptom, just like the pain is a symptom. It's too easy and convenient to blame my chronic pain on my weight.

I've shed too many tears over this for doctors to treat me like a hypocondriac or that it's all my fault. Doctors do not go to medical school to play God, but some of them think (whether they admit it or not) they hold my future and my health in their hands because I came to them for help. Doesn't the Hippocratic Oath state: First do no harm? Some doctors harm their patients by not taking them and their pain (or other problems) seriously.

I know I've been labelled a "difficult" patient because I have no problem telling a doctor he's full of it. There's this one pain management doc in Massachusetts who treated me so badly, and with such comtempt, that when he came in to see me during one appointment and started telling me that I needed a shrink and not a pain management clinic, I told him point blank that the appointment was over. And I started to gather up my stuff and leave. When he objected to this, I said, "We're done, doc. Please leave the room so I can get dressed." I later wrote a letter to the Massachusetts medical board to complain. It wasn't until I had my administrative SSA hearing last year that I found out this quack had labelled me as "difficult". But I kinda thought he would. He pissed me off. And I called him on it.



Well, that's the whole thing I typed. I left a much shorter comment instead. I didn't want her server to crash because I became so verbose.

There are definitely doctors I don't respect. They're in it for the big bucks. "MD" does not stand for "Make Dollars". The doctors who get my respect have respect for their patients. The ones who say, okay you have a problem, lets work together to fix it.


--MorelaterZ--

Hurtin'

I posted this in my other blog, and I don't feel like repeating it, so check it out at here.

Still nothing about SSI and disability, but I do have an appointment with the state Department of Rehabilitative Services on May 11th to talk about some funding for school.

At least that something is going my way. Whether it continues on this course isn't up to me.



--MorelaterZ--

I'm in flare

and I'm miserable. But, I have to push on. I have too much at stake to wallow in my own self pity. I did that for way too long, and now I have to get on with it.



--MorelaterZ--

Update...

I officially increased my activity level on March 7, 2005, by starting classes at a local trade school. I think the enthusiasm I feel from getting out of the house and learning something I've always wanted to learn about, helps me in some ways, and hinders me in others.

I'm still exhausted everyday, but some days, I manage to get thru it all right. I still have a lot of pain, and nothing seems to help it over the long term. All of the drugs I'd been taking for the pain have all come under fire by FDA, so I can't get them any more. Now I'm down to Tylenol and Aleve, and those don't always help.

I'm still under a lot of stress, because I can't seem to please anyone. The only respite I get is when I'm out of the house either attending school, or working the occasional job I picked up a month ago, with which I'll be lucky to make $100.00 a month. And it all goes into the gas tank.

So, if you're reading this, and you have something to do with SSA, this whole blog is about my struggle with FMS and RA. I'm trying to help myself, but without some help from somewhere, moneywise, I'm not going to get any better. RA is a progressive disease. Without treatment, I may have deformed fingers and toes at some later point in my life. My every waking moment is spent in pain. If you only had an idea what I go thru each day, and how much it hurts just to get out of bed because of the RA and the FMS. I want to work, that's why I went back to school, but without being able to see doctors in the meantime, I may be in too much pain to get the jobs I've paid good money (most of it in student loans and grants, BTW) to learn how to perform.

I have good days and bad days, but all my days I am in some kind of pain.

Please help me. Please find in my favor this time. By January '06, I hope, I'll have a job so I won't have to rely on Disability and SSI for the rest of my life. But right now, I really need help. I applied for benefit originally on September 6, 2002. Three years is a long time to wait, don't you think?

--MorelaterZ--

Okay, as promised...

I managed to work the 12 hours, but I was hurting, exhausted and damn near tears because of it all.

I don't know whatever possessed me to do this, but I think having some money was a big factor. This, once again, reminds me why I stopped working to begin with.

Dear SSA: I cannot stand, sit, or maintain one position for extended (3-4 hours or longer) periods of time. My body cannot handle it. If I am to work, then I will need the flexiblity of being able to relieve my extreme discomfort at will, and not when someone says I can. I am currently in training for a career that will allow me this flexibility. In the mean time, I need to see doctors and be on some type of medication in order to have some semblance of a "normal" life. My life as it is today is far from "normal". "Normal" for me is NOT to be in constant pain, discomfort, or exhaustion.

NOTE: In my package for reconsideration, I included a post from this blog. The printed out version mentions this blog's URL. Hopefully, some forward thinking person at SSA has been reading this blog, and realizes that I do indeed have a real problem with this, and that I am disabled enough to receive benefits. My life since my diagnosis in 2002 has not been easy by any stretch of the imagination. I simply got tired of feeling sorry for myself and decided to go back to school (I was not in school yet when I filed for my reconsideration). I want to work, but without some kind of assistance from SSA in regards to regular medical care and medications that will help me, working a regular 9-to-5 desk job, or a full time job anywhere, will be impossible for me. What more proof do you folks at SSA need? Do you need me to be so exhausted that I have to be hospitalized (which, without medical insurance, I can ill afford)? Do you need me to be in so much pain that I cannot function at a level that my 6 year old niece and her 2 year old brother can do with ease? That I cannot get out of bed? That I cannot go to school to get the training I have paid for to get new skills so I can work again? Do I need to be so depressed that I have thoughts of ending my life? Why is it so damn hard to convince you that I REALLY DO HAVE A PROBLEM WITH THIS? I do not want to wait another year for a hearing before an Administrative Law Judge.

I've engaged a lawyer that I cannot really afford to help me with this. This nonsense has gone on much too long.

Remember, I cannot stand, sit or maintain one position for hours upon end without severe pain, discomfort and exhaustion.

Frustration led me to create this blog last year, and frustration and anger fuels my desire to keep it up. I want everyone who wanders by here to know what Fibromyalgia is, and what it's doing to just one person, and how damned difficult it is to get SSA disability in the state of Oklahoma.

/end rant.

--MorelaterZ--

I must be out of my mind!

I took a job and it may turn out to be the end of me. Whatever made me think I could work for 12 hours at a stretch? But, I need the money, so I will give it an honest and valiant effort. I only hope I don't live to regret this.

I'm getting thru school okay, because I get to take breaks frequently and move around when I start hurting bad. Plus, I don't go for more than 6 hours at a time on any given day, so that helps. The exhaustion is bad, though.

I'll post my reactions to the above mentioned job over the weekend.

--MorelaterZ--

Same shit, different day

Same results: turned down again.

What do I have to do to get these peoples attention that I have a real, legitimate, and verifiable problem??? I have no idea what the doctors I saw said about me, but SSA has concluded that I am not disabled under their guidelines...again.

Perhaps if they tested me in a work situation, then evaluated me on how I felt hours and days afterward, then they'd see it. But they don't work that way. They give this mamby-pamby test that doesn't show them jack about my specific problems. It's a generic test that was developed long before FMS was an "accepted" disability.

So, I'm putting in for a reconsideration, and came to the library to print out the ten page form I need, but I forgot the stupid floppy I put it on!

I'm also going to call a lawyer to help me this time. If they can't get me benefits, then I may as well throw in the towel and live my life like "normal" people and live everyday of my God damned life in excrusciating pain.

My mother even asked if I was going to give up. She'd like that, because then I wouldn't have an "excuse" not to work and give her money. Hell, no, I'm not giving up. And when I get the money I truly feel is due me, I'm going to finish school and get the hell out of this damned Blue State who don't give a damn about people like me.

--MorelaterZ--

Feelin' bleh...

Two weeks ago, I caught this awful cold, and I've still got it. Now my sinuses are infected and it's just wearing me out! I have no appetite to speak of, all I want to do is sleep (which for me is good, by why do I have to be sick to sleep well?), and I'm even more exhausted than usual.

On top of all this, I've been a flare for about as long, so the two together is not doing me any favors.

And, I've entered into another battle with the state of Oklahoma regarding my being disabled. I'm trying to get funds to go back to school so I can work again at some point (being retrained is what they call it), and the woman I talked to at the Dept. of Rehabilitative Services was not very encouraging. It's kind of like trying to get Disability and SSI through Social Security...they have to get copies of my medical records and crap like that, and I can expect an answer in about 60 days or less. Meanwhile, I've already enrolled in school and will start in the next couple of weeks. I've gotten a grant and a student loan, but I have to come up with a balance on my own, so that's why I went to DRS.

Why do I bring all this frustration upon myself? I know it's not good for me, but I want to go back to work, and for that, I have to go to school and learn new skills.

What can a gal with FMS to do to improve her lot in life? I'm tired of sitting around being unproductive. I'm not the kind of person who can sit by and watch the world pass me by. I wasn't put on this earth for inactivity. I don't want to depend on "the dole" to get me by. I want to get on with my life, and if it takes me going back to school and having to ask the state for help, they should be thrilled! I'd be one less disabled person they'd have to worry about.

Why can't they see it once my way? Everything Zen...I don't think so!

--MorelaterZ--

Well, anyone with FMS coulda told ya that!

From Yahoo! News:

Another study done with a few folks with FMS about how they perceive pain.


Patients with chronic pain disorders, such as fibromyalgia, appear to have abnormalities in the self-monitoring mechanism that allows the discrimination of internally produced versus externally produced stimuli, new research shows.

Well, that falls in line with everything I've been reading lately.

The results suggest that chronic pain disorders "interfere with the correct function of the self-monitoring mechanism that normally allows us to distinguish self-produced from externally produced tactile stimuli."

I coulda told them that without a study!

Tell me something I don't know!


--MorelaterZ--

This is interesting

but it's not telling me anything I didn't already know.

From ABCNews.

--MorelaterZ--

My back's having a spaz attack

I've been having really awful back spasms all day long (I'm having one now........................)

I tried walking it off, but it didn't help. I was out in public and had an especially bad one. I thought I was going to fall down. I managed to get out to the van, and I laid in the back seat for a very long time hoping it would subside long enough so I could drive home. It did finally, and I've spent most of the evening on the couch upstairs trying not to have anymore. Tell my muscles that!

--MorelaterZ--

This was a good thing...

I went for my SSA appointment yesterday and I was very pleased with how it turned out. The doctor I went to see was a psychologist and he was very nice and asked me all kinds of questions about me, fibro, my history, my relationships with people, my family, and even questions about my relationship with the Cajun. I took a whole battery of exams and tests, and I have no idea how those are going to turn out.

He even told me that if I needed anything in the way of assistance from him, to just call and let him know and he'll try his best to assist me.

I don't know if I'll get SSI and disability, but I think I am going to try again to get some kind of assistance from the state. The doctor told me that a professional such as himself has to say that I am disabled and awaiting a decision from Social Security, and I should be able to get some form of help besides food stamps. I'll give that a try sometime soon. Maybe this time, I won't go away frustrated.

I probably should know something about Disability in the next few weeks. If I get turned down again, I'm going to talk to a lawyer. This has gone on much too long.

--MorelaterZ--

Two more days

until my SSA visit with the shrink mental health professional on the 20th.

Over the weekend, I made out a list of all the changes I've noticed in myself in the last two years, and some of them really concern me. I hope that this doctor actually listens to me and just doesn't blow me (or my concerns about my mental health) off.

On the pain front: the flare I was experiencing at New Years subsided considerably, but I still have pain that Tylenol or Aleve can't help me with. For now, I can't get Celebrex, so I'll have to make do. I only wish I could afford to see a rhuematologist so I can get this under control and live my life as normally as possible. Kinda hard to do when you are exhausted and in pain all the time.

The headaches have been coming more frequently, but that may have to do with my attempt to limit my consumption of caffeine to once a day more than anything else.

It'd be nice to be able to talk about things with someone. Let's hope the appointment on 1/20 is the start of something good and worthwhile.

But, I'm not holding my breath. This is SSA we're talking about here, for cryin' out loud!

In summary: I have pain, no way to treat it because I'm broke and unable to work, and that depresses me more than anyone can imagine (except maybe someone who's going thru the same thing as I am). I hate the way my life is now. I used to be fun, like to have fun, and loved life. Life now, and for the last two years, has been anything but fun.

That list I mentioned at the beginning of this post? I'd post it, but it makes me feel uncomfortable knowing some of the things that are on it scare the shit out of me.

--MorelaterZ--

Happy New Year. Sorry for being crabby.

I had been in a lot of pain over the New Year's weekend. I also have a stupid cold, which doesn't make me feel that much better FMS wise. However, I am, at the moment, pain free. How long that will last, heaven only knows.

Some good news...since I've had this cold, I've been sleeping well. How messed up is that, that I have to be sick to sleep well? Today was the first day this week that I've taken a nap in the afternoon. I was just worn out! We'll see how well I sleep tonight (says she who is typing this at nine til midnight cst).

I have 2 Celebrex of the lot that Dean gave me a few weeks ago. I wonder, now that Celebrex has fallen under suspicion, if he will be able to get any more for me. Doesn't hurt to ask. Worst he could say is no. Right?

--MorelaterZ--