Fibromyalgia

[bevie]

I just found this forum...and although I do participate in other Fibro forums and groups there's never enough info so thought I'd join in here as well. I'm retired (medically) since 2005 went on SS at 62 shortly after leaving my job. First time I applied for disability was in 2006 and was denied so decided since I was getting SS I'd just forget it....but lost my insurance cuz I couldn't pay for the COBRA...decided to re-appy for disability about 6 mos ago. Got my Medicare in Feb because I turned 65 so thought I'd never get disability, but I did...just 2 weeks ago I was approved. All that being said, I really am here to find what others are going thru and to help give my support for those having a difficult time adjusting to being newly diagnosed. I was first dxd with Myofascial Pain Syndrome then the Fibro..and of course CFS....had been having migraines since age 9. IBS began about 20 yrs ago as was the diagnosis of both Arthritis bros. NOW they believe I've had Lupus all along...because I can't take nsaids I live with lots of inflammation...all over...have terrible *bee stinging* all over when trigger points rear their ugly heads. (daily) I had a TKR in 2003, other knee is bone on bone, both hips had been causing so much pain that I couldn't hardly get up from a chair let alone drive anywhere...my mobility has been compromized and I'm mad...at least I could go when I wanted to..now I feel trapped. sorry for the venting..ehehehe~~~ must get it out sometimes...I've been told recently I have a neuropathy in my feet and hands, but don't know how much that is really other things going on...will have some tests soon...but the xrays taken last week by my ortho surgeon found a piece of wire near the hip...haven't a clue where that came from...an MRI was scheduled soon so we will know what we are dealing with...dr said the arthritis wasn't really that severe in the hips that's why he suspects Lupus...am seeing my old Rheumy in a couple weeks...sigh...lots going one...one more thing...I had a terrible fall last week, went head first into my tub...am recovering from much bruising...took me over an hr to get outta that tub too....grrrrr
My pug was licking my leg later and actually caused a pin hole in a vein since they are close to the surface and I bleed conciderable before I even noticed...poor dog was covered as was the off white carpet in my puter room. What a mess for my hubby to have to clean up!!! (after he got the bleeding to stop!!)
Well, enough about me...I'd like to meet those of you who post here, and if I can be of any help please let me know...God Bless, and have a great day...at least a less pain day!!!! Bevie

[Morning]

Also very new to this post, but years with Fibro. Also same problems, the bleeding not so much, had more problems with clots in younger years. Denied SSI and got tired of being told it was in my head. Already 67% disabled from work injury. But must have had Fibro since childhood, as the same problems exist today that did back then. The only thing I feel I can do is eat good to compensate for the energy used up by the pain, and walk a lot. Was hoping that when I could control my activities and not work so much things would get better. But, became a new mom again at age 50, gift from a younger brother, twins no less. Couldn't part with them for even a cure. Does cause lots of pain tho. Seems to come and go in waves, tho not the short ones, it took a year for me to start walking again regularly one time. No hard chairs for me once the tail bone cramp starts it can take days for it to go away.

You mentioned that you got your Disability sounds like it was a long process, was it worth the aggravation? Did you need an attorney?

As to meds. My primary care doc tried all kinds of meds, most muscle relaxers make peeing a problem and the only thing that seems to help consistently is Tylelnol at night and 1/2 or 3/4 tab of Ativan on truly bad nights I take a whole one. Takes care of the pain and the insomnia that I have had it almost all my life. And yes the docs argue if Lupus is in the mix, some have argued the lack of test results means no. I do have the lupus face. Then the other 2 say 30% or so have Lupus and do not test positive. So we are stuck in the middle of their muddle.

I try to deal with each day and hope for a better tomorrow like yourself. Having twins tho, and one of then with problems does keep me busy, just not usually in a way that is helpful for me. I am an artist and of course it is no longer a priority hopefully it can be again in the future. In the meantime I treasure any quiet moment I can find, and try to give as much extra attention to the wonderful man who is 100% disabled used to having all of my attention, and he yet hangs in there with me and our new little family, besides the grandkids and the rest of our very blended family.

[bevie]

Hi there, first let me answer the question as to the disability. When I was forced to retire from the hospital I applied, but was eventually denied and by then I'd started getting my SS checks so thought hey, I'd just let it go....but just about a year ago my primary dr said it was time to try again as things had gotten worse..the IBD and concentration was at it's all time worst. I did apply, online had one appt with a Neurologist who did the *physical* (and gave me some pointers as to other things he thought I might have such as Neuopathy of my feet and hands) That was confirmed later. Within 4 to 6 mos of that appt I was approved. Because I was already receiving Medicare the same month I was approved I only got a little lump sum which represented cost of living from 2005 till 2008..better than nothing...and now received a little more than what I got for Medicare. I was really surprised how easy it was to get the second time around, for I did contact an attorney in this area who said if the denied me again call him and he'd get it for me...didn't need to. The most important thing when filling out the forms is to put what's worse right up front..say you have memory problems or depression from all the pain...list those first. Then make sure you have the list of every dr with phone numbers and addresses and what tests they did...write things down so you don't forget all the different ways things were happening to you. One thing that helped me was that my hubby and my daughter were both sent forms to fill out and they were able to inforce some of the things I listed and some I didn't remember!!!
Good luck to you dear...and most of all you are a blessing for taking in those little twins...(Psssst, I'm a twin as well!!! :) God sure can throw us curves can't he??? We've had several of our extended families living with us for periods of time...it never ends we are always part of a larger family~~~
God Bless, Bevie