Fibromyalgia and working fulltime

renerian, BSN, RN · Jun 14, 2003

My friend has taken everything they can offer for her illness of the same. She can only work part time and is off sick alot.

renerian

TELEpathicRN · Jun 14, 2003

I am on everything you can imagine. I take vitamin supplements, etc... and I still hurt like H@#L, but HAVE to work full time. My wife is a full time grad student, I am going to go part time after she graduates. I work acute dialysis and love it!!! I really would love a position of a pt educator for dialysis and pre dialysis patients, but there are no such jobs in my area. Our company did just "create" a pt educator job for one of their favorites, but those are the jobs that just pop up every know and then and are filled by the chosen few. This job was never advertised. They also created a job for a nurse who was disabled (created a case manager position, a one of a kind position)....she has now taken another position, but her old position doesn't exist anymore!!!!

I am sooooooo frustrated. Tired of hurting and taking care of pts that expect the moon from you! I go the extra mile for all my pts and that will really wear you out quick!! Thanks for listeningb

passing thru · Jun 14, 2003

Just curious, How does fibromyalgia affect you?

What are your symptoms?

rebel_red · Jun 14, 2003

For Telepathicrn and Burr,

I really respect what you two are doing. My best friend has fibro. She had to go from working full time as a research scientist to part time as a substitute teacher to accomodate the needs of her body/mind/spirit. She still accomplishes more in one of her "bad" days than some of us do all week! It would appear that those of you with fibro push yourselves harder and refuse to allow this disease to be what defines you and what you will do. Kudos to you all.

I will ask her about the Guafenesin (pure) as she has been on most drugs/ therapies for fibro.

Take care of yourselves.

Tres

zambezi, BSN, RN · Jun 15, 2003

I don't know how/why the pure guafenesin would work, however, i do know of a couple of people that have taken it for their fibromyalgia and have had success with it...does anyone know how this helps? I can't say that i have looked into the subject, but if anyone looks into it, let us know, take care...

angelbear · Jun 15, 2003

I too am blessed with fibro. Yes it is a PIA but we all got somethin. Someone here gave me a site to the guafenisen treatment site I will look for it and give you the link. I take Prozac for depression, atenolol for high bp and migraines, flexiril to help with the almost constant muscle spasms, Klonipin to treat the PLMDand RLS that I am also blessed with, 325 ASA for my positive anti lupus coagulant, temazepam for sleep and Hydorcodone and ultram for the pain. I am beginning to feel that the side effects of those meds may be keeping me down and tired but who knows I felt near death before I started so what is one to do. I will go look for that site now.

Burr · Jun 29, 2003

Originally posted by passing thru
Just curious, How does fibromyalgia affect you?
What are your symptoms?

It raises it's nasty head by my whole body feeling like it has just passed through an old time ringer washer. The base of my feet are hot and dry and feel like thick leather one minute then cramping uncontrolably the next minute. My calcium level is normal. Leg cramps that feel as though my muscles are pulling away from tendens and bone. An ache in your bones that does not let up for hours. After work yesterday, I went straight to the bath tub - but when I layed down in the water instead of relief - it spasumed like never before - another item to add to the list. If I forget to put on my double magnet necklace after showering - within 2 hours I have a migrain building that would make getting slugged by a hammer better than I feel. My hands cramp and at this point I cann't even open a bottle of formula - I have to ask someone at work to open it for me - then I can feed a baby. It is getting harder and harder to cover up the pain - and yet I cann't give into it. I need to remain until retirement so that my husband will have health coverage. That means continuing to compete with 20-30 year olds at work. I just hope and pray daily that this new treatment I am trying will work. I need my life back.

Kirby

PURPLEQUEST · May 27, 2008

My close relative was a nurse and was indiagnosed her whole life. She could barely walk. I have the same condition, as does most women in my family. We also have hypermobility. I have been weaker and slower than the other kids my whole life.

The only job that I have been able to do is a programmer or business analyst.. I have been most successful working from home. But it is still very difficult to find employers who will allow employees to do this. I have just lost 2 jobs in 6 months because I am in too much pain to concentrate on anything after trying to drag myself into work and try to work 40 hrs a week. Most successful in the 32 to 36 hrs per week range.

I have been on the GUAI for 4 years, most successful.I am still in constant pain, but more energy. And the Lyrica I have just started in last 6 months. It is helping too. Celebrex is also helping for general pain management.

I am about to start the paperwork for the social security disability at 46. Myyounger sister has just been thru this over 2 year battle, and she has only just started "temp" benefits that she will probably have to battle about for the rest of her life.

I will have to live with my mother & sister while trying to survive with minimal income.

I do not know how well that will go...

But at least now I am healthy enough to work on paperwork and doctor's visits part time. Before I could not get out of bed.

I have tried everything. I am on 6 things at night to help with sleeping. I have always had to be very proactive about researching my conditions and treatments myself... and just finding a good dr who was open to new options. And finding a good local support group also helped. But I have moved twice for new jobs & not been able to find another club yet.

So keeping in touch with the old ones.

The secret seems to be not driving off a cliff every day. Maybe I am still here so I can help others in some way. That is why I try to work on healthcare types of applications.

Try to find something that helps you relax - DVD audio books of Harry Potter helped me - not sure why.. friends in a box perhaps. And EBAY bargain hunting - they deliver everything...good for folks who can't walk in a store - or even open the door...

And wearing hats & sunglasses everywhere - very sensitive to light - caused bad headaches.

And trying to find people to help with cleaning - maids are great - and grocery shopping - there are a few places that deliver these as well. Also the handicapped parking sticker. That way when you ask them to help you carry groceries to your car - they get a clue that the disabled are not all 100 years old - or in a wheel chair.

Good luck with your battles. And keep up the fight.

melodee49 · Aug 27, 2008

My close relative was a nurse and was indiagnosed her whole life. She could barely walk. I have the same condition, as does most women in my family. We also have hypermobility. I have been weaker and slower than the other kids my whole life.
The only job that I have been able to do is a programmer or business analyst.. I have been most successful working from home. But it is still very difficult to find employers who will allow employees to do this. I have just lost 2 jobs in 6 months because I am in too much pain to concentrate on anything after trying to drag myself into work and try to work 40 hrs a week. Most successful in the 32 to 36 hrs per week range.
I have been on the GUAI for 4 years, most successful.I am still in constant pain, but more energy. And the Lyrica I have just started in last 6 months. It is helping too. Celebrex is also helping for general pain management.
I am about to start the paperwork for the social security disability at 46. Myyounger sister has just been thru this over 2 year battle, and she has only just started "temp" benefits that she will probably have to battle about for the rest of her life.
I will have to live with my mother & sister while trying to survive with minimal income.
I do not know how well that will go...
But at least now I am healthy enough to work on paperwork and doctor's visits part time. Before I could not get out of bed.
I have tried everything. I am on 6 things at night to help with sleeping. I have always had to be very proactive about researching my conditions and treatments myself... and just finding a good dr who was open to new options. And finding a good local support group also helped. But I have moved twice for new jobs & not been able to find another club yet.
So keeping in touch with the old ones.
The secret seems to be not driving off a cliff every day. Maybe I am still here so I can help others in some way. That is why I try to work on healthcare types of applications.
Try to find something that helps you relax - DVD audio books of Harry Potter helped me - not sure why.. friends in a box perhaps. And EBAY bargain hunting - they deliver everything...good for folks who can't walk in a store - or even open the door...
And wearing hats & sunglasses everywhere - very sensitive to light - caused bad headaches.
And trying to find people to help with cleaning - maids are great - and grocery shopping - there are a few places that deliver these as well. Also the handicapped parking sticker. That way when you ask them to help you carry groceries to your car - they get a clue that the disabled are not all 100 years old - or in a wheel chair.
Good luck with your battles. And keep up the fight.

I was an LPN for 20 yrs and had to quit working. I was in severe pain, I had recently moved and hurt my back, had a kidney infection also, and 3 falls in the short time since I had moved (less than a month time). This was in Sept/Oct 2003. I had to move in with my mother, Lost everything, car, apartment, credit went to well, u know. After a few mos of this pain, I got symptoms like the flu except no fever. My doc had told me before that I had fibro but I was insluted. I thought he was just blowing me off , I was taught that fibro was a nut case diagnosis. After the second time he told me, when I had the flu like pain, I thought I would investigate. Yep, I do have it and I had been wrong all these yrs. It was a real illness. I have applied for Soc Sec Dis in Mar 05 and am still waiting for a hearing. I have tried a lot of different "cures" out there but none seem to make a difference. My pain doc said I had a "Severe" case, all trigger points tender and a lot of other symptoms that belong to thei syndrome. I currently take methadone, robaxin, requip, lidoderm patches and a few other meds. I am not able to take care of a patient, I can barely take care of me. I would suggest that you get your application to Social security as soon as you can. ANd Good luck.