Fibromyaglia

[stitcher45]

Katy I intended to say glad you found this thread. I spend a lot of my on line time here

Happy day

[Lifestar]

Well, Ladies,

I have been having a terrible time of it the past few days. My doctors are on vacation. It seems that August is "doctors take vacation month" in the northeast.

I finally got an appointment with my primary doc yesterday. I had a friend drive me to his office, because I really can't even walk anymore, let alone drive.

When I got into the exam room, they told me I'd be seeing the nurse practitioner. I was shocked! (I haven't been able to see my doctor in several months because of his scheduling, and have had to see the NP instead). When I made the appointment, I SPECIFICALLY asked to see the DOCTOR. Well, I was so upset, I actually becan to CRY! The poor tech didn't know what to do.

I was just so overwhelmed and exhausted with the pain and frustration. I was told on the phone that I'd be seeing my doc, and I really needed HIM!

So they squeezed me into his schedule and I am so thankful that I got in to see him.

He upgraded my pain med from Hydrocodone to Hydromorphone...I take it less often, but after just two doses, it has made a HUGE difference. Today I can stand upright for the first time in three weeks, but walking is still painful. The doctor also issued a temporary disabled parking permit for me, it's good for the next 6 months, so that will help when we go out as a family.

They're telling me that the stenosis and arthritis in my spine, has been agrivated by a sprain two months ago, that caused muscle spasms...and the myofacial pain and stiffness of the paravertebreal ligaments are just so severe, that it's become a vicious cycle of spasm and nerve compression.

The fibro pain and exhaustion just ice the cake. My jaw and neck are so tense, my head is throbbing, my hips are so stiff and full of searing sciatic pain that I cannot get around. I'm more exhausted and depressed than I have been in a long time, and although I have been trying to keep my spirits up...I am getting soooo disgusted by the runaround I encounter with the INSURANCE COMPANY!!!

I have been refered to a Pain Management Specialist, but none anywhere near me participate with my insurance plan. Do you have any idea how expensive these programs are???

I wonder if there is any other recourse to get the insurance companies to cover services like these when there are no in-network providers available?...I can't afford to pay for Out of network services. Maybe I should call a lawyer, but what kind of laywer would I call?


Also, I've been depending on my 12 year old daughter to take care of things around the house...I just don't know where to look for help. Do I contact social services? My doctors have skirted the issue when I mention that I'm not able to take care of myself.

We have a single income, and I am not recieving disability. I cannot pay out of pocket for services. How can I possibly choose between my pain, and our debt? Every penny I spend adds to my husband's stress and out staggering debt load.

It makes me feel miserable and guilty and I don't know how much more of this I can take.

I'm so sorry ..now I'm the dumper....

But I know you all have faced these feelings at some point or another too. And maybe some of you have had these very same problems and have solved them? Maybe someone can offer some help or advice. I knoww at the very least, there is always wonderful support out there. And that has been priceless. And just as important as any perscription I get from the doctor.


Val

[ladyinmaille]

After reading you post I just feel so bad for you that I could cry. I know how hopeless the whole situation seems but we just can not give up. You have so much spirit to have survived this so far. There just simply has to be some kind of social services out there to help women like us who have to depend on our children to run the household. If nothing else they should offer counciling to our children to help them cope with the circumstances that require them to do more of the household chores than their peers are doing. Is there anyone out there that can direct us to the places we need to go to get help. Hang on Val and Stitcher45 and bgwelz and katylynn. I'm sending gentle hugs your way and a prayer for help and strength to get through the days and nights.

[janet]

Yes, Sandy I have to stop and think how to spend the simplest words, like now, done, etc. Somedays the wires must be crossed or there are too many cobwebs in the attic!lol

janet

[Leslie9220]

Hi I just got back from 8 days of vacation my 1st in 2 years.
So many new names.


To Lifestar- Thanks for setting me straight about disability.
Hugs... I realized I was being selfish especially where my kids were concerned because my pride couldn't take it. I owe you debt for being so straight about it. I feel for the pain and problems your are having and there are so many others too after just being gone a little while. As part of vacation the last 3 days I drove my mom and a Sister Francis to a Convent of Dominican Sisters in Great Bend, KS My mom is a "semi"-retired social worker and she is helping the sisters for the next 9 mo. or so.. I'm writing a letter thanking the Sisters for letting me stay for 2 nights. Spiritually I feel stronger. I would be happy to send them back names if any of you would like to be included in prayers for the sick... Post saying so.

Linda how is it going with your boss?. I wanted to tell you my 'fibrofog' story which it was really really bad today after driving 250 miles 3 days ago and over 500 yesterday. And we actualy made it home! My youngest went with me. I am a limping fool today! My right leg and hobbling like granny as usual. After all that driving I couldn't find my car at all in the Wal-mart parking lot! My 8 yr old had to literally lead me by the hand to where the car was after 4 min. or so searching. Now that is embarassing!

One small victory - On vacation I paddled my way 7 miles down the Couritesa River by Steeleville MO with my 14 year old daughter in a 2 person canoe, I was determined to finish paddling the whole way, even though we were 1 hr. behind the others there were 12 of us and 6 canoes altogether.
I had a wonderful time even with the pain and being with all my family was a blessing and I was in bed for the next 28 hrs. paying for it. My lower back and hip still havent recovered. I did have so time to learn something about reflexology with my daughter we worked on the presure points in our hands, our feet were so sore after that canoe trip we couldn't bear to touch them.

“A million tomorrows will all pass away, ere I
forget all the joy that is mine today.” L. Ross



Leslie9220

[ladyinmaille]

Wow, am I ever proud of you!!!! Way to go. You paddled that canoe even tho you knew ahead of time that you would pay for it and pay for it dearly. I can imagine the joy and satisfaction you received for that.

That is very kind of you to offer to send our names to the sisters for prayers. Please ask them if they would be so kind as to say a prayer for me. The name "Sister Francis" is also the name of a Sister that befriended me and my family. She died around 10 years ago and I still miss her. She kinda adopted us, we used to live across the street from her when my kids were little. We all loved her dearly.

I am glad you are going to try to get disability to help your family financially. Actually we should call it insurance because that's what it really is. Just be brave and strong.

Things at work are still tense, tense, tense. But I am a tough old bird and I'm hanging on. One of these days I'll be able to walk out the door and I won't regret it for a moment. Tomorrow I have been there for 14 years and I deserve to be treated better than I have been. I remember working 45 days straight at one time, I remember working everyday last year, except for the day of the funeral, when my father passed away because the boss was on vacation in Florida. I've worked so many Saturdays for free that it makes me ill to think about the devotion I gave that place. No more. I work my 8 hours and then I am out the door so fast (well as fast as a limpy old lady can go.) The tension is just between me and my boss and the "friend". With the other ladies in the office, things are great. The "friend" is getting what she so justly deserves, the cold shoulder from everyone but "the boss" in the office. Everybody is civil to her, but avoid her whenever possible. It's kinda like she has "cooties" I will survive this with a few scars but I am working hard on praying to forgive them both and to let go of my anger. I'm trying to convince myself that if I give in to anger, I am allowing them to control my emotions. Oh dear, I did ramble on and all I really started out to say was I was happy that you had a good vacation. Welcome back.

[bgwelz]

Oh yeah! you cannot imagine how many times I have to backspace when I am typing something.
I keep a dictionary handy as during the day I can't thing how to spell some of the most often used words. I don't know for sure but I tie it to the "fibro fog" I have read about.
I have mentioned before Dr Pelligrino who has written a few books & is also a fibro sufferor. He constantly tells us to make lists & keep track of where your lists are.
I keep writing down what I am to do & where I am to do it. Then I stick that note to the dash of my van when I leave home. Problem now is with the heat my sticky notes are falling off the dash & I lose the note
You have to keep some humor or you will lose your mind
I thank God everyday for my wonderful husband who so far has not lost his patience with me. I might ask him something 3 times a day, but he very kindly helps me out.
I wish for all of you someone half as understanding as the love of my life. We will celebrate 30 yrs of marriage in a week

[Leslie9220]

Linda, Happy 14th anniversary at work ! Sounds like your coworkers have rallied around you. You go girl! Hang in there as long as you need to. I will write a separate letter to Sister Francis for you today. I'm sure she and the other Dominican sisters will pray for your health and your family. Thanks for the support.



Leslie

[motherof2]

I do not suffer from this very painful disorder, but I am a Physical Therapist Assistant the has worked with patients with this diagnosis and I have found that it helps to do some Myofasical Release to easy the pain. It is a massage type technique that is not painful and does ease the pain. If anyone would like more info, please let me know and I can get it for you.

Remember to hang in there and that there is always someone to talk to here.

[Lifestar]

My PT has done this for me on my lower back because that is what my perscription is for ...I had a sprain...and it feels great....My question is...she won't do it for the REST of my painful back, because the Rx is for for my lower back and not the upper back or neck ETC...,

I don't know how to convince her that it would help my whole body . Why are PT's restricted to the one specific area of the back for treatment by the Rx

I think the myofacial release massage would benefit my lower back pain, even if it's the upper back that hurts as well...

Anyway..I just thought I'd ask a "professional" opinion as long as I had you here...



Val