New to Site but NOT New to Fibro or Pain

[painismylife]

A long time ago, in a galaxy far away... sorry, I could not resist. That is just one of my other conditions rearing its head, StarWarsNerd-itis. Hey, we have to find something to laugh about, right?

Anyway, I guess this is my Fibro story...

I was always an active kid. I mean, I had my share of Saturday morning cartoons and afternoon Flintstones, but I was pretty active on the whole. Riding my bike, being a "tomboy," climbing trees, beating the little boy next door up (snickers nostalgically)- was just a normal day to do one or more of these things. I did not have the best childhood and did not really know how to express myself, so softball became my outlet. It was my passion from about age 8 to well into my 20's. As I grew older though, it became harder and harder to "bounce back" the next day. And I suppose when I say "grew older," I mean somewhere in my mid 20's.

Anyway, I heard things like, "You are too young to complaining about aches and pains," or "If I had your body, I would be thankful!" I put the pain aside for a long while, thinking I was being a whiner or something. But deep down, I knew something was wrong. I had been really hurt before, and what I was feeling was not just "all in my head."

I started having migraines. A lot. I did not have the "normal" kind of migraines though. Right before the pain would hit, I would go numb on one side of my body, and I would kind of pass out. I had MRI after MRI, and so many ultrasounds of my carotid artery. I finally found a neurologist who told me that I had migraines with auras. It was a type of migraine that with the onset of the pain, stroke-like symptoms would present themselves. The migraines grew more intense and more frequent. I was put on medicine to prevent them. It did not work. The neuro switched meds, but nothing seemed to stop them.

The pain grew worse and worse. I stopped playing softball. I started getting really depressed. My son was diagnosed with type one diabetes and spent 5 days in the hospital. I had a miscarriage. I got a divorce. Things WERE NOT looking up.

Finally, I started seeing a doctor who really did not act like a doctor. He was nice. He wasn't too arrogant. He asked questions. He ordered labs. I had one blood test come back positive. It was a very low positive, but it was positive. He tested me again, and again, it came back positive. The next time I went in for a follow up, he pressed his finger on the inside of my knee, and I jumped and clamped my hand over my mouth to keep the scream in my throat from coming out and, with a HUGE effort, I did not punch my doctor's lights out with my other hand. He proceeded to test other pressure points, this time, warning me beforehand. I did not realize until he put it together that the large majority of my pain was coming from, very close to, or centralized in these areas.

Time passed, and through a series of events, I had laproscopic surgery done on my left knee. The surgeon was basically doing it just to shut me up about my knee pain, because the MRI of my knee wasn't showing anything really bad. He was doing a lateral release. But what to his wondering eyes should appear, but terrible arthritis on the underside of my knee cap, and deterioration of cartilage so severe, he said I had the knee of a PRO FOOTBALL PLAYER.

Now, things have gotten so bad, I was let go from my job and am in the process of filing for disability. So, to sum it all up, I have fibromyalgia, depression, chronic migraines, and osteoarthritis. The cards are stacked against me as well. My mother, grandmother, and great grandmother ALL have RA. And my mother has a total of TEN autoimmune diseases. So, I am screwed genetically. But that is my "fibro story." So it was so long. I look forward to being a part of this site. Thanks for reading.

 

[painismylife]

No one to wish me well? No one to welcome me to the site? Wow. Am I in the right place? I have the same problems as everyone else here. Fibro, a pretty bad case of it, according to my doctor, who is almost as frustrated as I am, because I have no insurance, and he can't prescribe the meds that may or may not give me some measure of relief.... I just got my second denial from disability in the mail today... pretty bummed out from that. I will have appeal a second time, get a hearing date and all that. And then this is the second time today I have checked to see if anyone here has welcomed me to the site, and it looks like 20 or so people have viewed it. But no one has said "hey," or, "boy, you are long-winded," or "go somewhere else with your problems"- nothing. That is what I have I guess. Nothing. No job, no money, about to have no car (because I am three months behind on my payments), no one who understands what I go through everyday, and now, I guess no support- not even in cyberspace. It probably sounds like I am desperate. But it is because I am. Desperate for SOMEONE, ANYONE, to say "hey, it is going to be okay." "You are not alone" ..... am I alone?

 

[katydid]

Hi Jill! No you're not alone! Some times it takes us a little bit to answer posts! I'm sorry yours was one of them! I did read this late last night but was in too much pain to reply, as the weather here is stormy and affecting my pain! You're definitely not alone though!
I hear the same type of statements as you did in the past, about being too young for aches and pains... Except mine are because of car accidents.. neither were my fault, they both happened within a year and a half time frame and iI swear I'm an awesome driver, I just had a car that was cursed and apparently had a sign on the trunk that said "please rear end me and try to run me over!" That everyone else could see but was invisible to me apparently! Lol
Try to take a look through old and new posts, there's a ton of really useful information and tips/tricks on helping to manage your pain! Some stuff works, some might not, it's different for everyone unfortunately because fibro is such a strange disease, it seems as if no 2 people are exactly the same with their symptoms...
And I promise, everyone here is extremely nice and caring!... There's more action elsewhere In the forum sometimes lol I'll give you that! Lol
And I wish I could comment on disability and give you advice on that, but I haven't gone down that road yet.. I'm still being stubborn and trying to work, although it's not working so well-trying to work lol.
I really hope we see you around the forum! And welcome!
Best wishes and gentle hugs!
-Katie

 

[painismylife]

Thank you so much, katie-opny. I was just pretty down yesterday, and needed a... boost, I suppose you could say, and having no responses was just like the straw that broke the proverbial camel's back. I understand about being in too much pain to respond. Sometimes you can click, but just the thought of typing is painful. I know. My right hand has been in some state of numbness and extreme pain for over a month! And the doctor see no problem with it. Just chalks it up to "my stuff." Needless to say, keeping my hands on the "home row" of the keyboard is impossible at times, but I DO NOT "hunt and peck." (lol)

I was down yesterday because I had an appt with my GP. He is the only doctor I can see right now, because I have no insurance but have been approved for a type of charity program with a sliding scale, and since I have zero income, that means it's free. I am also waiting to hear back from a subsidiary of that program that provides medications for free. Fingers crossed! It will not get me ALL the meds I need. I take a veritable cocktail everyday 3x a day. But any kind of help is help. And I am grateful for it. I lost any semblance of pride long about the time I had to ask my roommate/best friend (the first time) to help me wash my hair and shave my legs, because I just absolutely could not do it. I was already crying from doing... what you do when you bathe, but it was physically impossible for me to reach my hands and arms up to my head or down past my knees. Yep, I think that is when the pride said, "See ya later." (LOL!)

Anyway, my doctor was just like, "I don't know what to do for you. I could write you a script for this, this, and this, but you have insurance and no money, so you would not ever be able to pay for them." He upped a few things I am already on (that are not working but are cheap), told me what he could do for me when/if I get insurance, and was hurrying out of the room, because he said "I have a guy who has been waiting an hour." Well, d@mn! I had to wait an hour and a half for him!

And I understand about working. I did not want to quit working. That decision was made for me. So, hang in there as long as you can!

Thank you again for responding. I really appreciate it. Trying to figure out how to do this blog thing. I have never blogged anywhere before, but I have always kept a journal. You know, the ones where you actually take a pen to paper kind of thing, and there is a dolphin jumping out of the water on the front cover! LOL I can't figure it out, but I will post something in the question thingy. I am not that tech savvy. Thanks again for responding. It may sound cheesy, but you made my day. <3

((Gentle hugs)) to you and hopes that it is a "good day" today.

 

[1sweed]

Jill,
Hello and welcome to the forum. Yesterday was a big day for new members and I try to get to everyone as soon as possible, but I was wore out after a hard day of caring for my mom and so I did not get to your post. Never think that no one cares here, as sometimes we read a post and take time to think hard on how best to respond. We try to be very supportive and understanding and kind, but like you we have fibro, thus have our limits as well.

Now that your here it is time to get settled in and start posting. Ask any question and give answers to posts where you feel you can add to the conversation and give an uplifting response. Be sure to read the older and newer posts in the sections that interest you and know that we have a place to vent if necessary. And there are topic's in the off-section at the bottom of the page.

We are glad you found us and we hope you will continue to come back.

 

[painismylife]

Thank you for the response, 1sweed. I am sorry about being impatient. As I said to katie, it was a bad day all the way around yesterday, and I guess I was having one of those dreaded pity parties. (I really try not to do that.) At my appt, my doc was like, "I can't help you, because you don't have insurance." And I am in daily pain, despite the fact that I take truly, a handful of pills thrice a day- some handfuls larger than others depending on the day. And when I say daily pain, that runs the gamut from being in the type of pain where I don't move except to put the pills in my mouth and swallow them with some water for a few hours, to not getting out of the bed at all, and actually, purposely limiting my fluid intake to keep from having to get to use the bathroom! But I am feeling better today. I have found and printed some financial assistance applications from pharmaceutical companies to see about getting started on the medicines my doctor told me he would prescribe me if I had coverage. And I have the hope my application will be accepted. I hope you were feeling so worn out yesterday. Does your mother live with you? I hope today was a little easier for you.

Hugs to you and your mom.

 

[1sweed]

Jill,
If you cannot afford medications your doctor can apply directly to the company that makes the medication and if your income is low enough some companies will give you the medications for free. If your doctor won't do it you can get the forms directly from the companies. Usually the meds have to be sent to your doctors office and then you would pick them up there. This is not done through a pharmacy program. Also search out the Family Health Centers. They are government run but provide medical care and referrals to other doctors, and meds cheaper. They operate on a sliding scale based on "your" income. It is not great but if you need help take some patience with you and swallow your pride and get some help. I did this in Florida, when I had no insurance.

Yes, my mom lives with me and is 87, and is a hand full do to her memory problems. But I love her and am trying to provide her with a save home and good meals, and keep her home as long as possible. It is a very hard and trying job. Thanks for asking.