how many of you are registered disabled by fibro or CFS alone? and how long did it take to get that bad permanantly like me?

[uk2]

Hi i have been ill 2 yrs

got dx in 2008 but been ill since 2007 though my rheumy says 10 yrs i am registered disabled now within 2 yrs by May 2007 i had to give up work.

I do feel i have fibro but i am being retested for MS again as 3 drs now say i might have MS as fibro does not cause this level of disabilty not in this short time any views on this???

sam

[Heather3418]

As you already know, I have Fibro and MS.  I frankly don't know where the MS starts and the Fibro begins.  I believe that I have fallen into a chronic fatigue syndrome, because of the fatigue that overwhelms me.  I don't get to sleep easily at night, due to leg pain, but when I do fall asleep, I can sleep for 10 hours.  It's only because of a bad back ache that I even get up.

Soon after I awaken, I am so tired, I could still go back to bed.  I have the kind of fatigue that puts you in the bed, but doesn't really relieve the fatigue.  I don't know if this is separate from MS or is CFS by itself, or maybe caused from the Fibro.

What I have found the most difficult in all of this, is getting people to understand what happens to my body.  I do believe, they think I am just lazy.  It doesn't take much effort at housecleaning or moving around, before I am so tired I can't keep my eyes open.

I got my disability benefits on the first try.  I wrote down every single thing that affects my day, even down to being too tired to want intimacy with my partner.  I would just rather sleep or rest.  I really pushed the pain part on the SS application.  I guess I shouldn't say that, because pain IS my constant companion every single day.

Hope doctor's get their heads together one day and find a cure for all of this.  I really believe (I know you are going to think I am nuts) that Fibro and MS are very closely related, but just different forms of an 'MS like' disease.

I have missed you Sam.  We go back a long way, don't we?

Sending you all good wishes and lots of "Huggie Wuggies,"
Heather
From the MS Forum

[Terrie2008]

Hi

I was diagnosed xmas eve 2008,with fibro.

I am unable to get disability because I have not paid enough national insurance this was because I only worked part time due to me looking after my mum.I did not realise I should have brought national insurance stamps.

So even if I was severely disabled I still could not get it.I was told about DLA I filled in the forms but got turned down,so I went to my local citizen advice centre they were great they asked questions  and filled in the forms and I was excepted.

Its the way the forms are filled in I answered the questions on my every day problems letting them know how bad at times I get but thats not how to fill the form in you have to forget about how or what you can do on your so called good days and answer the questions on how you are on your bad days.

For example how many meters can you walk before your in severer pain I put the amount but of cause on my bad days I cant walk any where Im in bed or sofa so the answer should have been  none.

So get help to fill the form out once I got the help I got granted DLA in no time.

I hope this helps.  

[TMum13]

I was in a car accident in 2005 which caused the onset of my symptoms at the time I was on mat leave from work. My symptoms were not improving with therapy but I went back to work in Aug of 2006, I continued to work for about nine months and my symptoms continued to get worst to the point I would come home from work and go straight to lay down I could barely move my husband had to do everything.  Including take care of our child.

I was in the doctors office every week and he keeped sending me to different specialist.  Finally he sent me to a doctor who diagnosed fibromyalgia in Jan of 2007, but I wanted to get a second opinion because I did not beleive his diagnosis and thought that he was just triing to get me to take all these different antidepressant medication.  So I went for three different assesments and all came back with the same diagnosis, I currently see a pain management doctor who helps me manage this chronic illness.  

I stopped working in May of 2007 and was denied disability the first time, but the second time I was approved.   I am 33 yrs old and had disability coverage through my work they paid my benefits for 3 months and then cut them off telling me I had to go back to work full time.  I was not able to return to work and had to hire a lawyer to deal with the insurance company, which they successfully were able to settle.  I also was approved for disability in July 2008 in which retro pays you.  

The government is starting to recognize FMS/CFS as an illness that can cause extreme disability.  They may try to get you to go back to work or not approve your benefits but you should fight, it is unacceptable the way these companies (insurance) and government make their decision as to who has a disability or not.  The medical reports from your doctors should be enough for the doctors from disability to make their decision but they feel the need to try and deny you in hopes that you will give up and go back to work, so you should continue to fight for your benefits.

Good Luck to all in the fight of FMS/CFS.

[fibrogrl]

I fought and won against a private insurer and used the info from the U.S.'s Social secruity documents...
Google David Traver, social security disability advocate and review the social security regulations...SSR 96  and SSR 96-1 which deals with chronic pain. Document all your appts and specialists, have your main doctors write you  qualifying letters. and then coordinate all with a covering letter.

[zippazappa]

hello everybody  am shocked at the amount of people who are struggling to get help. i was made redundant over 4 years ago and it was a good time to take it as i had reacuring water/kidney infections and my boss was loosing his patents big time. i had a bad flare up with all my joints and mucles for a year and it was thought i had rhumathoide arthritus, i got better in twelve months and eventualy went back to work for 4 full days a week but i just couldnt focus on the job and i had no energy and no choice to give it up. i was given disability allowance with out any hessatation? i had been to the rhumy in this time who ruled out rhumatiode arthritus and so when i had a revew i told them of this. i was then dx with fibro/cfs a year after and i give these details with my next review i also asked for mobility and carers allowance and again i got this?? the highes rate. i dont know what on earth i would of done without this extra income but i know that it was how i explained my illness in my application. i went through every symptom i suffer with and i wrote them a essey about a extra 6 pages attached of how why and when this affects me, who helped me and what would happen if i wasnt given this help and what would happen if i wasnt awarded financal help. as if you need this on top of all your illness you have to fight for whats rightfully yours and we all know how debilatating this illness can be. good luck and keep trying and if you qualifiy for free leagal help..get it but most definate keep trying and when you do get it, ask for it to backdated to when you first applyed.
take care
zz

[ootie]

Hello everybody, I was dx ten years ago but have been ill for almost 15 years.  I haven't been able to work for 2 years now and don't get disability.  I've asked the local fibromyalgia assoc here for help in applying about a month ago but haven't heard anything back (they have fm too I guess)  I also have vertical double vision does anyone else here have eye problems?

[MyTau]

Wow, it only took you a year? That is rare and lucky; do you have anything besides fibro? I''ve been fighting for my SSD since 2005, and I have Lupus, Raynaud's, DDD, OA, Fibro, CFIDS, psoriasis; I'm sure I am forgetting something but the fact is according to the SS blue book I qualify in 2 or 3 different categories. My Rheumy is surprised I haven't been approved. I had a hearing, but because the judge was not satisfied with Social security's "medical expert" and her staff not getting her my new records until the morning of my hearing she said she is going to read my files on her own and either approve me or schedule another hearing. More waiting........

[uk2]

Hi All

Thanks for your comments

It took me a year to get disabilty i can not work at all cant even get out i have just gone down hill non stop with little or no respite.

I still feel and my DRS feel there is something else going on other then fibro so i am going through the testing period again which is hard.

sam

[SharJ]

Yes I was diagnosed in 2002 with FMS/CFS.  and  worked until 2006 I finally had to quit working. I was getting progress fully worse and could no longer do my work. It took me nearly 8 months to get my diagnosed permanetly  and onto Social Security Disability Income.  It was frustrating to get approved  for SSDI.
Hang  in there and make sure you have all your documents from any doctor visits, tests. and prescriptions. Put them in order, I also included a letter regarding how FMS/CFS had changed my life, I did not leave out anything.  I think that helped

I wish you luck, You will get frustrated, but don;t give up.  I know it is hard to face the fact you have to apply because you are disabled. That is still hard for me. I am in the process now appling for a  powered scooter, again lots of paper work.

just know that you are not alone, we are all with you. Let us know how you are doing.

Hugs, Sharj

[deedee332]

Thank you, and yes it is like this 6 out of 7 days a week.  I normally get one day of not as much pain.  The pain is there but not as intense.

FurballsMOM: Yes, I believe that it is going to be hard for me to get my money especially since they said that my condition is severe but not severe enough when they denied me last month.  I have a lawyer now and will be a year or so before I can get a court date but I am not giving up.  I have worked too long and have a lot of money built up into that system and I will only be 47 next month, which is nowhere near retirement age.  Although I wouldn't wish FM/CFS on anyone it would be good for those people who are denying folks to suffer from it or someone close to them to realize what it actually does to a person and then they would understand.

[FurballsMom]

I am fortunate that I am already on disability for something else.  I hate the thought of having to deal with getting onto disability for CFS/FMS when I haven't even gotten the diagnosis yet.  I know someone else with FMS who had to struggle a very long time to get onto disability.  Then, social security insists on doing reviews every few years for anyone on disability to see if the person is still disabled.  My friend is quite disabled, so I don't really know how she manages to do the part-time work that she does.  I know, though, that she could never work full-time, so it's a good thing that she got onto disability.  It sure was a struggle for her the first time around.  She is getting to be old enough now, though, that she won't have to do these reviews any more, because she is almost retirement age and won't have to do the reviews any more.

[uk2]

Hi

Sorry dee that you going through so much pain, do you ever get a break or is it like this all the time?

sam

[deedee332]

Hi, I was diagnosed in 2001 but have been going down hill since 2007.  I can't work due to the debiltating factors for some odd reason.  I continued to push myself to work and I enjoyed working but in the summer of 2008 I just couldn't do it anymore.  I've tried all kinds of pain meds since 2001 and still have not found the right twist.  I just don't believe a whole lot of what they say because fibromyalgia is progressive.  I have progressed into this condition and it's really bad now.  My husband looks at me sometimes and I can see that he just feels really bad because he can't do anything about my pain.

[uk2]

Hi

so sorry your having the same trouble, i am looking at MS as i have got so bad in just 2 yrs which is a short time in fibro most people get this bad after 5 -10 yrs so i think maybe something else is going on.

sam

[kiddthekatt]

  I was diagnosed with Fibro and Chronic Fatigue a year ago. Within this past year my health has gone down and the symtoms are worse. My Rheumy told me that everything that he has researched and studied on both diseases, he feels that Fibro and CFS are both progressive. I do know my pain has increased 10 fold and I hate it.

gentle hugs
Angel